Sarcoma SPAEN Conference – Day 2

Dr Rachel Brindley (Clinical Psychologist) and Elaine Stewart (Cancer Support Specialist), London Maggie’s Cancer Centre
Morning Talk – What to do when treatment comes to an end? – Practical, emotional and psychological issues

What’s it like to be facing this diagnosis in your country?
What are the challenges?

  • Majority of people say they weren’t offered support.  But the search for information helped however it was their way of coping which might not be right for others.
  • Misunderstanding of what palliative and hospice care is.  Perhaps the communication isn’t good enough to understand what options are.  Discussions between Patient and Dr need to be better to understand the options but also to think about what is the job of an oncologist, palliative care, hospice etc.  Learning a new language.

What are the supports?
What are the main psychological issues that people with advanced disease face?

  • Living with uncertainty.  Realise the disease is progressing and recurrences but not knowing and living along side the disease whilst maintaining a quality of life.
  • Significant adjustment process that needs supporting.  Adjusting to the knowledge of advanced disease but finding your new place.
  • Fear of future of family if I die?

Ripple effect of cancer:
Medical – treatment effects, nutritional needs, physical
Quality of life – Sleep, leisure activity, shopping, socialising (eg meals)
Relationships – Changing roles, sexuality…
Difficult emotions – Low mood, anxiety, guilt, shame, anger (at disease, at family at God)
Self Image – Body image, self-esteem, confidence
Existential–Spiritual – Meaning of life, create a legacy, purpose…
Financial/Legal – Work status, holiday insurance…

Q – Psychological support to the physicians?
A – It’s also a burden on the clinicians and medical team.  Is this why they’re not best to share bad news.

Fears and questions about death and dying?
What are some of the fears?
What do people want to know?
What is it like talking about these?

Can be victims of complementary and alternative therapy?

Italian Dr shared a story – Shocked on his very first day of work in new role in LA, he was taken into patient’s room.  Colleague starts talking.. in next few hours/days explains respiratory and cardiac arrest is near.  We can resuscitate and will only delay a few days.  Shocked about how brutal they were with the patient.
In Italy the percentage of patients with this kind of information is only 1% or less that are given details about death and dying.  In Italy many patients don’t want to know they are going to die.  Physicians problems start much earlier than this point.

Very individual choice about knowing what is going on.. time to clear things, discuss with relatives, friends etc think about funeral and future of family.

Patient choice… has to be a sensitive and individual choice by patient.

When do you discuss?
Again very individual to find the time to discuss.  Discuss in part.   Listen to learn what the other person needs to hear.

Fears about death and dying
Fears about dying:
1.     Fear of the process of dying
2.     Fear of the consequences of death for loved ones
3.     Existential fear of death itself

Planning Ahead
What does this mean to you?
What would be helpful for you to think about?
What resources are available to help you to plan ahead?

  • Comment from member of the audience: for many in the UK we have never experienced death in the first 40 or so years of our life.   Death isn’t talked about.
  • Comment from another member of the audience: – Clinician discussions are often very different and difficult.  Training for clinicians and learning to signpost and be honest to refer.

Stages of Grief – Kubler-Ross
Denial -> Anger -> Bargaining -> (Anxiety) -> Depression -> Acceptance
Not a case of working through but cycling back.  Perhaps anxiety is missing on the diagram?
Perhaps should be ‘Not knowing’ at the beginning of diagram.
Some people may never get to the Acceptance phase but back and forth earlier on –ie they’re not able to accept death.
Perhaps include Guilt

Close involvement with people at end of life involves managing complex medical problems and working with high levels of emotional distress

Consider the impact that working with people with advanced disease may have on you and other professionals.

1.     What signs would you want to be alerted to in
a.     Yourself?
b.     Others?
2.     What strategies do you feel would be helpful/important in preventing and managing these?

The heart must first pump blood to itself” – S.L. Shapiro
Support staff teams
Opportunities to debrief and reflect after difficult/distressing incidents
Opportunities to discuss what went well
Peer or individual supervision
Access to training, appropriate information
Time – to reflect on work, and for own needs
Feedback from senior management: positive, constructive
Balance between work and home life.

How might you be able to carry on some of these conversations/ideas when you get home?



Barbara Dore. Chair, Gist Support UK, SPAEN
How to Organise Patient Group Meetings

Think about and objectives for patient meeting.


  • Information/Education
  • Exchange between patients
  • Support (you are not alone)
  • Patient empowerment
  • Relationships with
    • Experts who may speak at meetings
    • Industry experts.
    • If near clinic/training/university then perhaps invite team/students etc.
  • Reasons to donate (not just in terms of money.  Can also be their time).
  • Finding volunteers

Session formats

  • Lecture presentation
  • Workshops
  • Case studies
  • Panel discussions
  • New experiences (yoga…)
  • Background sessions psychological support etc)
  • Vary the pace of the meeting during the day/meeting
  • No more than 2 hours without a break.
  • Networking time!


  • Consider the audience
    • Previous feedback
    • Newcomers/experienced
  • Variety of subjects – from the academic, technical and practical
  • Structure the day – after lunch spot needs interactive and care in planning.
  • Interaction keeps the audience engaged.
  • Brief the speaker as to content
    • Ask them if they want time cues
  • Reminder 1 week beforehand
  • Prepare some questions for Q&A
  • Write and thank speakers afterwards


  • Budget
  • Site visit
  • Accessibility
    • Travel easy?
    • Disabled access
    • Car parking?
  • Layout – flow
  • Resources
    • A/v
    • Poster display
    • Flip charts
  • Registration desk.
    • Name labels,
    • programs
  • Signposting to meeting
  • Refreshments (every 2-2.5hrs)
  • Networking

Staff during the meeting

  • Registration Desk
  • Assistance to guests
  • Passing microphones around
  • Collecting evaluation form
  • Taking note from the meeting report
  • Distributing papers (Agenda etc)
  • Photographing
  • Getting Contact details
  • Circulating and meetings/ welcoming all participants
  • Getting photograph permission

Announcing the meeting

  • Inform and invite all attendees
  • Experts physicians nurses clinic
  • Invitation letters/leaflets posters
  • Invite by Email postal delivery, Facebook, twitter, website, email group
  • Press
  • Online calendar
  • Continuity slides.  Welcoming slide before presentation and also slide for lunch or welcome back to the afternoon session.

The Day

  • Meet and Greet
  • Network in Breaks
  • Feedback?
  • Think about next time.



Roger Wilson and Claire Kelleher, Sarcoma UK
Patient Group Survey

Why do we do questionnaires?

  • need to get information
  • need to get opinions
  • experiences
  • often get new ideas

Need to be quite clear about objectives for survey.

Sarcoma UK is a patient led organisation.  Likes to involve patients in any initiative and involvement.   Part of Information Standard process is you must involve target participants ie patients.  Done by various means, feedback or through email, telephone, speak to people at support groups etc.

Clear objectives in mind when thinking about questionnaire.
Who do you want to contact?  Patients?  Carers

  • How will you contact them?
  • How are you going to find them?
  • How will they respond?
  • How will you record numbers in a meeting and is there any value?
  • Do you need documented or formal responses?

Once you’ve got data from responses what will you do with those replies?  Putting the data from the questionnaire into a spreadsheet for analysis is time-consuming.

  • How will you handle their replies and analyse the responses?
  • Once you have an analysis what are you going to do with it?

Got to have these things sorted in your mind before you start the survey process.  Otherwise it may be past its use by date by the time you use the analysis.

Claire – How we’ve used our surveys.  At British Sarcoma Group Conference in February we asked specifically about written information.
Asked the group in workshop (patients, clinicians and CNSs) what they thought of information (using Macmillan and Cancer Research UK’s written info). Most people said too complex and difficult to understand ie the lesson learnt use simplest terms that we can.
Negative feedback re glossaries – most people in the workshops found it difficult to flit back to glossary rather than explaining what a word means as they go along.

Survey about information and support – what info have you found? When did you receive it?  Etc… so Sarcoma UK can understand what patients are experiencing and better support patients as they should be.

Collate research data.  One reason why survey used?
Use methodologies and tools that have been validated academically.  So that the data can be taken seriously by professional bodies (wherever possible).

One of the tools that is most readily available is the EQ5D which looks at quality of life.

Is this form truly useful for cancer/sarcoma patients?

Currently working with Royal Marsden for sarcoma patients with advanced cancer.

Claire – Example of how patients’ information can be used within gynae-sarcomas.
There is a gap of information around this type of sarcoma.
People upon diagnosis not given information… there is very little.
Sarcoma UK are developing a booklet.
They have an information review panel (both patient review panel and a professional review panel).
All information goes through the process first with the professional panel looking for inaccuracies.
Next to the patient review panel – is it easy to understand? Is it the information they want to see?

One problem we had is that there isn’t that many people we have on the information review panel with this type of sarcoma.
We put a call out to the women we knew about to invite them to be involved in the review panel.
In January we’re holding a Webinar (with Maggies) to offer information and advice to ladies with gynae-sarcomas and also to gather information about what they would like to include in the information leaflet.

The information leaflet is then due to be published early next year and will be available on the Sarcoma UK website to download.

We do get it wrong as well…
80 responses.
People had written all over the form and written on the back of the form.  Realised they were only scratching the surface with this survey.  Didn’t look at it well enough or in depth.
Hadn’t expected to also see hospital doctors lack of sarcoma information as well as GP (which had been expected).
If we’d been able to test the survey with 10 or 12 patients beforehand, Roger thinks a very different survey would have gone out.

Ended up writing a three page analysis of this survey which frankly was a load of waffle as the real conclusions had no data to support them as it was supplied anecdotally in the margins of the form rather than as answers to not very well worded questions.

Lesson – get objectives right before you start and test the questions to ensure you are asking the right questions in the right way to the right people.

Q – how would you deal with when a patient asks for privacy in answering a questionnaire.
A – Responses are anonymous.  Don’t ask for other personal information that might identify someone.
If someone doesn’t want to give information… they don’t have to.


Ian Judson, The Royal Marsden Hospital UK
Marco Fiore, Istituto Nazionale Tumori Milan, Italy
Strategies for Metastasis in Sarcomas and Gist – Perspective of oncologist and surgeon

50% of people diagnosed with sarcoma will NEVER have another problem after primary treatment.


Ian Judson – Sarcoma Unit, Royal Marsden
Management of metastatic disease – soft tissue sarcoma and GIST

What are the roles of chemotherapy for soft tissue sarcomas?

  • Palliation of advanced local or metastatic disease
  • Pre-operative treatment for large tumours?
  • Adjuvant chemo in large, high grade, extremity tumours?

Palliative treatment of advance disease.  Crudely if you lump all sarcoma together the median survival isn’t great. Probably about a year.

We did a trial in the EORTC combination v single agent – the 62012 trial

Slight improvement in progression free survival but no significant improvement in overall survival.

How can we use this data?

  • If objective is response – tumour shrinkage or remove specific symptom (pressure on nerve) then justified in using combination therapy.
  • If objective is palliation, then no real value in using combination therapy… single agent treatment (consequential if needed) is probably best.

What subtypes are particularly sensitive to chemotherapy?

  • Most sensitive subtypes appear to be
    • Synovial sarcoma
    • Myxoid/round cell liposarcoma
    • Uterine leiomysosarcoma
    • Other?
  • But N.B. – data are sparse on individual disease outcomes.

Other effective agents.  We use a combination of agents depending on the sarcoma type.  But we’re dealing with small numbers and difficult to assess.

Hormone sensitive sarcomas

  • Endometrial stromal sarcomas & some low grade ER/PR+ leiomyosarcomas, respond to oestrogen deprivation
  • In premonopausal women GnRH agonists or oophorectomy
  • In postmenopausal women – aromatase inhibitors
  • We usually use letrozole

When is chemo unhelpful?

What’s the future?

Molecular biological information that we can translate into new treatment.
In part:
Some tumours, types, mutations can be difficult to treat or apply a ‘rule’.

Some progress with translocations (chromosome swapping) ie synovial sarcoma translocations
Chromosomal amplifications – ie when it copies and becomes a driver for the sarcoma.

Median survival is improving as we discover more.   We have more drugs being used.  Differing regimens.

Range of treatments available for treating metastatic sarcoma.

PHYLLODES – COULD BE SARCOMA OR CARCINOMA (hence confusion about where it sits in medical teams)


Marco Fiore, Instituto Nazionale Tumori Milan, Italy
Strategies for metastases in Sarcomas and GIST – A surgeon’s perspective

Looking at surgeries about how we run trials.
Conclusion should perhaps be that it is about patient choice and perhaps the studies should be addressed retrospectively in order to obtain patient randomisation.  Patient choice needs to be made with sufficient information to make an informed choice.




Jean Yves Blay, Centre Leon Barard Lyon, France
Update on new and ongoing trials

There are many clinical trials….

  • You understood for clinical trials that we are dealing with a very well structured setting.  The majority of trials are done in multiple continents.
  • We are moving from a situation doing trials in all sarcoma sub-sets to a situation where we are targeting histologies.  This is changing the landscape an adds a level of complexity.  The end of the story will be not only focusing on sub-types but molecular sub-types within.  Results in small number of patients and work collectively globally.  It will not be possible to demonstrate the use of an agent

3 messages

  • Global approach
  • Histology Driven
  • Very important in know randomised trials, approval of the agent and prove that something is superior to another.

Bone sarcomas

  • Osteosarcoma
    • OS2006
      • Exploring bisphosphonates in a randomised setting
      • FSG, EORTC, others
    • Euramos 2?  5 years to do the first trial.  What next in Euramos 2 trial?
    • Country specific trials.
  • Ewing
    • Ewing 2012 (FP7)
      • Comparing VDC/IE to VIDE (comparing US regimen to the European regimen)
      • Exploring bisphosphonates
    • EuroEwing trial
      • Piloted by the German group.
  • PoC studies in Ewing/Osteo
    • Mifamurtide, linsitinib (EuroSARC WP6)
  • Chrondrosarcoma
    • PoC study of neoadjuvant mTOR inhibition
    • Hh inhibitors (vismodegib) negative
    • EuroSarc projects
  • Chordoma
  • Trials on mTOR, TKI (imatinib, sorafenib) completed

Soft tissue sarcomas

  • Neoadjuvant
    • Histology tailored treatment in EuroSARC (WP5)
      • ISG, GEIS, PSG, FR

Trying to address if we should give the same treatment.

  • Adjuvant chemotherapy
    • IRCI Uterine LMS 0 vs 4GT/4Doxo
      • US, EU (GOG, EORTC, UK)

Unsolved question in soft tissue sarcoma.  This is not the standard for all patients and we do not know who will or won’t benefit.
IRCI – this was the first trial in the US.. no treatment –v- combination treatment. It’s hoped it will answer the important question on this sub-type.

  • Surgery
    • Prospective trial of no treatment in desmoids (FR)

Phase 2 study of no treatment.  Often not mentioned.  This is where desmoids are not affecting other things.

  • (Neo)Adjuvant radiotherapy
    • Retroperitoneal sarcoma (EuroSARC WP4) exploring in selected localisation of disease.
    • Vortext tiral (UK)
    • SAR01 trial (FR) no radiotherapy with wide margin

Largest clinical trials are in the advanced phase:
Advanced phase – randomised trials
First line

  • Palifosfamide (closed Ziopharm sponsor)
  • TRS trial (Pharammar, completed) – Needs further investigation.
  • NCRI GT vs Doxo (UK) – Recruiting well – 220 out of 250 patients.  ASCO 2015
  • EorTC Trust Trial (closed for accrual).  Exploring agent in first line setting.
  • Dox +/-TH302 (ongoing, Threshold sponsor)
  • IRCI EORTC/UK in HGUS  High grade undifferentiated uterine sarcoma.
  • Taxol+/-Bevacizumab (FR, Angiosarcoma) – Close to completion of accrual.

Only a few trials are addressing in histological sub-types.

Subsequent lines

  • Trabectedine vs DTIC (JNJ, US, L-sarcomas)
  • Eribuline vs DTIC (Eisai, World, L-sarcomas)
  • Sunitinib vc cediranib (US NCI, ASPS)
  • Regorafenib vs – 0 (FR, all comers)
  • CDK4 inhibitor vs 0 in (US/World WD/DD LPS)
  • MV vsPazopanib (FR, Desmoids)
  • Cediranib vs BSC (UK ASPS)

Phase 1/11 trials

  • Subset specific (right question?)
  • Target specific (phase I/II)
  • Molecular immunotherapy.  Contrasting what was done in the 90s.  Watch in next 2 years to see new trials of this kind.
  • Passive immunotherapy.  Means antibody which is labelled with a nesotope and recognised.
  • Treated the driver target across histotypes

EORTC Network of Core Institutions
EORTC protocol 9010 (EudraCT number 2011-001988-52 NCT01524926)

Probably the future of what we are going to do in sarcoma.

Q&A Session
Q – Moving much more to molecular selection of patients in clinical trials.  Is the pathologist going to become more important in making the selection decisions.
A – The role of the pathologist is central.  This question is debated often.  How do we link pathologist to molecular biologist?  Research to routine is very challenging.

We need to bring up a budget wall with people talking to each other and exchanging information.  Challenging not sure.  If a pathologist is a real molecular biologist you’re fortunate!

Short profiles of sarcoma subtypes

Hans Keulen, Chordoma Foundation NL

Brief introduction into Chordoma and introduction to clinical trials
What is Chordoma?

  • Malignant tumour arising from the bone of the skull base and spine
  • It is a cancer and has a tenancy to be locally invasive and a tenancy to spread (metastasize)
  • It’s origin is traced to remnants of primitive embryonal cells called the “notochord”


  • 5 % of the primary bone tumours are located in the spine
  • 8% of the spinal tumours are Chordomas
  • Incidence <0,7-1:1,000.000
  • Grows at skull base (Clivus, 35%), sacrum (50%) other spinal (15%)
  • Strikes people of all ages, most diagnosed in the 50s for sacral and 40s for other types
  • More frequent in men than women.

Phylum Chordata: Subphylum vertebrata

  • 550 million years ago Chordates emerged from the common ancestor
  • Presence of the notochord is the most prominent feature of the Phylum Chordata
  • Notochord is ectodermal and guides developed

Fate of the notochord

  • The notochord is essential for the creation of the embryo
  • Usually disappeared 10 weeks after gestation
  • The notochord should not be there at the latest after 10 years.
  • There are a lot of factors that can arrest the disappearance.

Recent discovery is that a certain gene called Brachyury (t-box gene).  Essential for development.  Absence is lethal.

Notochord and brachyury
Brachyury is over expressed in chordomas and many epithelial cancers.
Brachyury is expressed in chordomas but not in other bone and cartilage tumours.
Approximately 10% of chordoma patients it is familial.
Duplication of brachyrury gene has been observed in familial chrodomas.
When you inhibit brachyury in chordoma patients you will stop it growing.

Recent discovery from UCL –

97% of chordoma patients harbor at least one allele of the common nonsynomymous SNP rs2305089 in the brachyury gene

Research is imperative.

Benign notochordal cell tumour (BNCT)
Should anything be done at this point?

Current treatment of chordoma
First line is still surgery.  Piece by piece or enbloc depending on location.
Sometimes stabilisation of the spine is required.
Radiation therapy is a high dose (usually 3x dose of breast cancer)  Specialised types, mostly proton beam or carbon ion.


  • Prognosis for chordoma patients Is not that good.
  • High rate of recurrence
  • A lot of people get a lot of mutilating surgeries.
  • Sacral chordoma usually in a wheelchair
  • Survival rate has gone up but sometimes at a cost of added mobility.

In the past we saw only 10% of mets.  However recently mets in sacral chordoma has recently been recorded that these are as high as 30%.  There is doubt if this might be due to surgery not being good enough – possibly caused by seeding.
No chemotherapy
20-20% cure rate.

Median was 6.29 years

Remarks – survival is increasing to 7-9 years, but with increased morbidity from surgery and radiation.

Chordoma vs Chondrosarcoma
Mistaken on routine histology
Epithelial v Mesenchymal origin
Much better for chrondrosarcoma (gr1)
Misdiagnosis is less common now.

Recent developments
Using Carbon Ion instead of Proton radiation particularly in sacral chordomas night even replace surgery as first line treatment (ECCO 2013)

Radiation before or during surgery offers promising results with respect to recurrence and seeding.

Increasing number of target identified for trials with existing drugs.

Other trials….. not just drugs
e.g. Carbon Ion vs Proton Beam radiation – HIT Heidelberg

Carbon Ion vs Proton Beam radiation – HIT Heidelberg

About Chordoma Foundation
We are a very small patient group.  Worldwide we are less than Sarcoma UK!

Our mission is to improve, extend and ultimately save the lives of chordoma patients by:
Accelerating the development of more effective treatments
Helping patients across the world.

One in a million, on a mission – Chordoma Foundation


Beatrice Seddon, UCL Hospital NHS Trust UK
Uterine Sarcoma

Gynaecological sarcomas – where are we in 2013?

Incidence of gynae sacomas
1985 – 2009 5950 gynae sarcomas diagnosed in the UK
9.2 case per million female population
285 cases diagnosed in 2009
Peak incidence 30-60 years

NCIN Gynae sarcoma report soon to be published.

Classification WHO 2003
Uterine Mesenchymal tumours *****
Smooth muscle tumours
Endometrial stromal tumours

Do not include malignant mixed Mullerian tumours

Location of tumours
85% of gynae sarcoma arise in the uterus
7% I the ovary
4% in the uterine malignancies

Sloan Kettering uterine leiomysosarcoma nomogram – overall survival probability prediction tools

Management of gynae sarcoma
Surgery – Most important component of treatment


Marco Fiore
The interdisciplinary process of diagnosis in soft tissue sarcoma

MDT involved
Pathologist, medical Oncologist, thoracic surgeon
Web based National Rare tumours network, radiation oncologist
Surgical oncologist Radiologist

Sarcoma MDT
Many specialists have routine activity with MDT team.

Weekly routine meetings with the specialists, pathologic round, clinical round and MDT outpatients.

Any deep mass OR bigger than 5cm OR increasing in size

  • Hystologic exam (better than cytologic)
  • Think about possible surgical incision
  • Keep high-level of clinical suspicion
    • Be aware of usual misdiagnosis -> deep large ‘hematomas’ are virtually impossible if no trauma history and/or anticoagulant drugs.

Core-needle biopsy
Local clinic
Usually two samples.

Pathologist – new classifications WHO classification of soft tissue tumours

In common cancer they are white or black
Benign – no problem.
Malignant – diagnosis of cancer.

Within soft tissue transfer it is a scale of white, greys and black,
Benign, Intermediate aggressive tumour, (locally aggressive) or (rarely metastasizing)  Malignant.

Different decision for soft tissue sarcoma diagnosis.

Soft tissue sarcomas can be diagnosed anywhere in the body and surgery on sites can be very varied yet the tumour type could be the same histology.  Anatomic constraints.

First think the overall strategy:

  • Histology specific (and grade)
    • Combination of natural history
    • Different sensitivity to different drugs
    • Different radio-sensitivity
  • Site specific
    • Respectability
    • Reconstruction needs

What I can do + what the tumour can do = What I should do.

Please note, overall strategy should think in advance.

Sometimes it’s important for the surgeon to consider what to do rather than rush into it… difficult as most patients want surgery immediately but caution may in fact be best for the outcome.

Pushing tumour margins Or with infiltrative margins.

External lesions it may be better (angiosarcoma photo used) to have any chemo after surgery… that way the surgeon can see exactly where they need to perform surgery.

Functional outcome is an issue.  Needs planning to ensure that particularly with arms etc that reconstruction of nerves etc is also planned to provide patient with best outcome.

Cosmetic outcome can be problematic.  Such as on the head and neck.  Plastic surgeon should also be consulted as part of the planning.

INT – treatment criteria
Changing over time 1987-2007

  • Less amputations.  Decreased from the 1st to the 4th period (9% -> 3% -> 1% -> 1%)
  • Concurrent chemo—radiation therapy.  Preoperatively

Local recurrence was improved.  Survival did not change.  Functional outcome and quality of life did.

One-shot approach.  You need to think in advance for this strategy.

  • Re-excision: up to 50% of the cases referred to tertiary centres.
  • Impact on public health costs /reimbursement criteria??
  • Impact on extension of final surgery and functional outcome.
  • Psychological impact on patient and family (unexpected diagnosis: whoops! – delayed diagnosis – second opinion change diagnosis in 30%)
  • No prognostic impact.

Retroperitonal soft tissue sarcoma
Probability of finding via CT scan is low.

Biopsy remains the gold standard in diagnosing sarcoma!


Julia Hill, Deputy National Programme Director, National Cancer Peer Review, UK
Peer review of quality of treatment, access to treatment and centres of excellence.

What is Peer Review?

  • Quality assurance programme based on National Guidance and National Standards.
  • For Sarcoma this wa the Improving Outcomes Guidance.
  • Guidance by nature is guidance and cannot specifically be measured.  Need to be benchmarked.
  • It’s not a statutory function but well supported in NHS.

Development of peer review

  • Developed initially around cancer services.  Broadening outside of cancer.
  • First reviews took place in 2001.  Been through many reviews and remodelling.
  • Number of independent reviews support the continuation with recommended support.

Aims of Peer Review

  • Providing safe services
  • Improving quality and effectiveness of care
  • Improving the patient and carer experience
  • Undertaking independent, fair reviews of services
  • Providing development and learning for all
  • Encouraging the dissemination of good practice.

Key principles of Peer Review

  • Clinically led
  • Consistent in delivery
  • Developmental
  • Focus on coordination within and across the organisation and pathway
  • Peer to peer.  Clinicians working in the area reviewing clinicians and teams.
  • Integration with other review systems.  Hopefully no duplicating information.
  • User/Carer involvement.

Benefits of the Peer Review Programme

  • Proven to be a catalyst for change.
  • Developmental programme
  • Provides director of services and information across the country
  • Identify any risks in the service by visiting and bringing to the attention we can get these involved quickly
  • We have a lot of clinicians involved in process (3-3,500 clinicians who review)
  • Rapid sharing
  • Provision of timely benchmarking data.

The Peer Review Methodology
Annual Self Assessment -> Internal Validation -> External verification -> Peer review visits.

Reviewing evidence

  • Quality measures.  Ask teams to provide evidence documents to keep workload minimal.  We ask for doctors that the team would be using in every day… work programme, operation policy, annual report.
  • Narrative report against key themes… for structure and function.  What membership of teams.  What’s the training.  Patient pathways and clinical guidelines.  Patient experience.  How do get patient feedback.
  • Clinical outcomes.  We are moving toward looking at clinical outcomes.

Development of the measures
National guidance
Expert Groups – nurses, allied health professionals, dieticians etc and also patients.
Consultation – get together to create a set of measures for the service.
Formal consultation – for approx 3 months.
Editing – meet again and edit etc.
Publication – measures reviewed on an annual basis to take into account changes in national guidelines.

Measures for Sarcoma published in August 2011NCAT Manual for Cancer Services – Sarcoma Measures
Cover aspects:

  • Sarcoma Advisory Group
  • Trust – inc Diagnostic Clinics
  • MDT – Bone and soft tissue.

What makes up a peer review visit:

  • Provide an opportunity to meet with members of a service to determine compliance with the quality measures.
  • Identify any broader issues relating to the delivery of a quality and safe service including a review of clinical indicators.
  • Provide a further external check on internal quality assurance processes.

Look at the wider picture of how the team functions against how they’re delivering against clinical indicators.

Who are Reviewers?
MDT – service users, clinicians, AHPs, Managers and commissioners…
Peers are people who have been trained and working in the same discipline as the people they are reviewing.

We don’t have reviewers reviewing the trust next door but are objective of the pathways.

Selection Criteria for a Peer Review Visit

  • We don’t visit all the centres but do a risk based target for the visit.  Are they meeting national guidance.
  • Were there any risks identified previously that have still not been involved.
  • We’re asked by organisations to visit.
  • Compliance against measures with lowest performance grouping… If teams are still not reaching 50% of measures then we need to go in and see what the problem is.
  • Concerns regarding the Internal Validation process.

2012/13 Peer Review Visits
12 Sarcoma Advisory Groups
145 Trusts, 19 Diagnostic teams
15 MDTs

Good Practice
Generally good provision for TYA Support for this patient group nationally
Good patient involvement overall and good examples of support
Good entry into clinical trials

Immediate risks
Inadequate referral population
Below 100 patients

Serious Concerns

  • Inadequate CNS provision
  • Lack of attendance at the SMDT by radiology and pathology
  • Lack of oncology capacity (non-surgical oncology)
  • Ambiguous/fragmented pathways (retroperitoneal and site specific)
  • Poor pathway/MDT governance / Data

Recurring Themes
Reiterate points before, particular issue was some Self Assessment Groups do not benefit from same support as more matter NSSGs

Clinical Outcomes
Clinical Indicators for sarcoma were introduced in April 2013:

  • % patients treated in Sarcoma centres
  • Caseload by Sarcoma centre
  • % patients receiving surgery
  • Readmission rates within 30 days of surgery
  • % patients with a recorded stage.

Working with NCIN to provide service profiles for each of our teams.  Ie Cancer Service Profiles for Breast cancer   Comprise of demographic data, specialist team, throughput, meeting times, practice, outcomes and recovery and Patient experience.

Outcomes of Peer Review

  • Confirm quality of services
  • Identify shortcomings and publish
  • Publish reports about quality of services
  • Timely information for commissioning
  • Validate information which is available to other stakeholders

My Cancer Treatment – is the website that patients can then see and compare local services and check what the results are for their local hospital etc.
Click on Find out more to see the narrative of the report.

We know that not only patients are looking at the website – commissioners are also doing so.

Sarcoma UK have prepared and posted on their website a summary of the Patient Experience Survey results


SPAEN Partnerships and Collaborations

Progress in Rare Cancer Care
Collaborations and Networks

Winette van der Graaf, Chair EORTC STSG, Netherlands and Estelle Lecointe, SPAEN France

What drives us as a sarcoma specialist?
If you work on frequent cancers, do randomised trials.  If you work on rare cancers – find friends..

What is EORTC
Exists for 50 years.
Important institute in Europe.   Main aim is to collaborative academic research throughout Europe to improve the outcome for cancer patients.

There also groups that breaching these tumour groups such as elderly, quality of life, biomarkers etc

One family of sarcoma group.

Throughout Europe
Soft Tissue Bone Sarcoma Group

  • Throughout Europe
  • Randomised phase 2 an 3 studies
  • Interesting partner for Pharma.  Difficult in a rare disease to get pharma involved however with big databases they’re interested!
  • Big and relevant data bases
  • Gets support from EORTC,
  • Platform of discussing studies in such rare disease.  But also a platform of finding friends and collaborations.   We are all busy with a very rare disease for which there are not so many people available.
  • Collaborative spirit.

Organisation of STBSG

  • Board of group, period of 9 years
  • ExCo with charis of the subcommittees
  • 2 group’s meeting a year
  • Young investigators of the group.  Welcome new members interested in doing studies in sarcoma.

Group gets a scientific audit every 3 years.   So we are audited on the way we behave and want to see minutes and outcome and publications and all activities.   Proud to say the last audit took place this year and we ranked very high.  Always hope that you will have good advisors to make it even better.


  • Local treatment – radiotherapy, surgery
  • Systemic treatment – chemo targeted agents
  • Pathology
  • Imaging.  Radiologist part of design of studies.
  • Quality of life since 2012
  • Public relations, starting from 2013
  • … pre-clinical group to look at what’s going on in other institutes (to be set up)

Collaboration with…

  • National groups in France, Germany, Spain, Italy, British, etc
  • Some members are members of World Sarcoma Network.  Number is increasing.
  • Pharmaceutical companies
  • EU grants and education (this needs to be extended)

Open studies…
Very few later stage open studies at the moment.    Working hard to get new studies active.

STRASS and CREATE studies.

New intiatives

  • Many database studies

Discussions about

  • Osteosarcoma French Study
  • Ewing sarcoma (FP7)
  • Liposarcoma CDK4 inhibitor
  • GIST: fist line, second line, third line
  • Elderly study: cyclophospharmide/prednisolone
  • Imaging studies on STRASS

World Sarcoma Network
This is a totally different institution created in 2009 by enthusiastic people in the sarcoma field.  Cooperative group gathering the main reference centres to stimulate rapid clinical drug development for sarcomas.
Enable clinical studies that could not be completed by the cooperative groups or at a national and continental level.  Where it needs a global level to discuss.

In Europe, in Australia Peter Mac, Ludwig Institute Australia

World Sarcoma Network the challenges

  • If you have no institute location and no funding how can you organise it.  Busy of thinking of a model of how to do this.  We have the international rare cancer initiative.
  • Very rare disease – unattractive for Pharma
  • ‘Sarcoma of the year’ 2013 gynae sarcomas.  If we are not more concrete what we are aiming at then for the outer world it will be a vague institute of nice people but no objective.
  • Biannual meetings during ASCO and CTOS

Examples of successful collaborations

  • Trials in GIST
  • EORTC – Italian and Australasian Sarcoma Group Centres in the US

With the input from all of you, there will be many more studies to come…



Jean Yves Blay, Centre Leon Barard Lyon, France
European Clinical Trials in Rare Sarcomas within an integrated translational trial network

How do we get funding for collaborative working?
Each network gets funding from different parts but how do we bring these together?

Where grants from EuroSARC came together.    Tools to enable this network of networks to move in the right direction.

Some times successful in some projects but other times on our own we may be unsuccessful.

We can build something on the basis of international grants.

GOAL – EuroSARC project – Academic clinical trials with a limited number of partners but inclusive for all networks and all groups.

Interaction between clinical research <-> Translational research <-> basic research

To address major academic questions
Involve reference centres
Tod design structure and implement 9 innovative investigator driving clinical trials of different scales on a multinational level, evaluating novel


  • An important support for Ebased on previous work
  • Academic research only
  • Difficulties/problems
  • Adaption to the context/change of plans. website

1.     About sarcomas
2.     2 Eurosarc project
3.     Eurosarc clinical trials
4.     Patient and public info
5.     Utilities
6.     Members section

Sarcoma SPAEN Conference – Day 1

This is the third year I’ve attended the SPAEN conference. The three days are always action packed, exhausting, thought provoking and inspirational. The delegates attending are from throughout Europe and most of whom have a personal interest in improving the cancer landscape. There are a great many organisations represented and crossing borders, sharing knowledge, experience and information. Importantly working collaboratively on projects, without ego or personal gain. There’s a great deal that charities and businesses alike could learn from this group!

This blog entry is taken from my extensive notes at the conference and I hope will be useful to many. I am quite sure that SPAEN will soon post their own conference report on their website so please be sure to check back.


The Opening Welcome was given jointly by Roger Wilson and Markus Wartenberg

It is a testament to the organisation that this is the fourth year this conference has taken place and membership, interest and outcomes continue to grow. Despite being a European conference we have this year also attendee representatives from USA, China and Australia. Their aim of attending is to understand how a patient group like SPAEN operates, listen to stories and examples from attendees and take back these learnings to their own countries.


Raz Dewji, Director – Clinical Scientist, GlaxoSmithKline Oncology Global Medical Affairs, UK
GSK Europe welcomes SPAEN to UK London as the main conference sponsor

“A personal perspective on the impact the ‘Patients Voice’ in drug development”

A journey that has been incredibly emotional. I’ve learnt how important it is to understand and hear what patients are asking for. Hopefully some of the work that we are doing and other companies are doing is now reflecting the voice that you collectively and as individuals have been delivering at different levels of the few years that we have known each other. I feel very humbled.

A little bit about GSK
GSK is a science led global healthcare company researches and develops innovative medicines, vaccines and consumer healthcare products.

Mission statement – do more feel better and live longer.

A lot of you have contributed in some shape or form to the journey I’ve had in the past 7 years and hopefully able to share some of those insights with you.

Less than 10% of patients with rare diseases are ‘treated’ on a global basis.

GSK concentrating a team on 200 different rare diseases.

Patient centric medicine is an area that is becoming much more focussed and a growing need to understand the patient.

Partnerships between organisations like GSK (Pharma) and patient advocacy groups are critical to bring new treatment options to those who are in need of them. GSK is very proud to be a long-term supporter of SPAEN.

GSK – Focus on the Patient Initiative

  • Post approval Disease Awareness. Once we have a new medicine approved we then work externally to raise the awareness for the disease.
  • Simplification of the information consent form and process (for clinical trials). Really important to try to get some of those documents into a manageable form where patients feel comfortable and the information they are provided with is appropriate not full of legal jargon.
  • Engagement with patients and physicians at different levels. Clinical trial space – to understand the trial and get feedback. How has a trial been for patients? What was your experience?
  • Treatment adherence initiatives. Helping patients to take medications appropriately. Increasing focus on developing oral medications rather than intravenously… however there can be challenges for side effects and also getting patients to remember to take the medication.
  • Working with the patient support groups.

Post approval Disease Awareness
GSK took on an advertisement raising awareness to physicians to what a challenging disease Soft Tissue Sarcoma is – Raising Awareness of a Challenging Disease advertisement.

My first encounter with sarcoma was in 1991…
At the time I was working as ‘study monitor’ based in Brussels doing a lot of work in different oncology drugs.
I was working with a patient and realised that she had the same date of birth as my brother. It still gives him quite a jolt of reality recalling the challenge in these phase 1 trials. These are usually in older patients except often in sarcoma patients who tend to be younger. A very emotional moment to realise my brother was the same age as this patient and this has stayed with me.

In 2006 I joined GSK as indication lead for pazopanib in advanced soft tissue sarcoma (‘STS’)…
Phase 1 trial had good results of the 6 patients entered… 4 had stable disease by 6 months.

Key milestones for pazopanib in a STS
September 1996 – Program Initiation
Nov 2001 – Candidate Selection
December 2002 – First in Human Dose
October 2005 – 1st STS Patient Dosed (Phase 2)
Sept 2007 – Proof of Concept
March 2008 – Phase 3 Commitment
Oct 2008 – 1st STS patient dosed (Phase 3)
June 2011 – Supplemental NDA Submission
April 2012 – US FDA Approval
August 2012 – EMA Approval

Collaboration with EORTC Soft Tissue and Bone Sarcoma Group Phase 2 and 3
He met with Prof Judson at the Royal Marsden to talk specifically about patient cases. That collaboration has driven the project forward and made him appreciate what a unique community the sarcoma community really is.

Without Sarcoma UK and SPAEN – patients in the UK would not have been able to participate in the PALETTE Phase 3 study. Double blind, placebo controlled trial.

Randomising into placebo without opportunity to cross over within the study.
Without intervention from patient groups it may well have not been able to take place.


Markus Wartenberg – SPAEN, Germany
Status report from the SPAEN task force ‘Therapy and side effect management’. Problems and experiences from other advocates – examples of adherence tools?

Oral targeted therapies:

Often patients attitudes/statements:

  •  I am doing fine, I don’t want to spoil my day with feeling unwell.
  • Nausea /diarrhoea reminds me of having this disease – every day.
  • Drug holidays: to have a great weekend or vacations.
  • Doing well after time: Let’s return to normal life
  • Adjuvant settings: No ‘detectable’ tumour. It’s only for prophylaxis…
  • Poor packaging – complicated dosing schedule – forgetfulness.

Often in reality…
Drs attempts at therapy and side effect management. Attitudes/statements:

  • 5 minutes of information: basis for the therapy offered. Is this enough?
  • Let’s see each other in 3 months….
  • If you have any side effects, contact your GP. Would GPs know?
  • Reduction from 12 to 4 different drugs. This many drugs to manage side effects? Needs to be assessed.
  • Others don’t have this problem. This must be psychologically.Underrated: Dermatology, dental treatment, high blood pressure.

There are also side effects that are not visible to the Dr or the patients.. ie high blood pressure (unless it’s measured before and after). Nausea can’t be measured… and lots more.


  • Modern systemic oral treatments will not work in a patient who does not take his medication.
  • Adherence is an issue but it not only a patient issue. Could this have an impact from the media? Is it that the drugs are provided without a side effect management explained and information. Seeking information from other patients or a patient group where a GP perhaps doesn’t know… consequence is that they may take drug holidays ie underdosed with this type of treatment.

Issues for Healthcare Professionals:

  • Misled assumption: Cancer! My patient is taking his medicine.
  • Often: Lack of expertise, experience, time, maintenance (especially in rare cancers).
  • No/less time dedicated to adherence and therapy/side effect management
  • Problem: Do healthcare systems incentivise maintenance?

Patients may not always report:

  • Side effects (or the full extent of the side effects on their Quality of Life)
  • Drugs holidays or modifications to dosing schedules
  • All of the medications, supplements, treatments they are taking for side effect management.

Factors for adherence and persistence: Paper written by Rob Horne – UCL School of Pharmacy)

  • Personal factors such as where people don’t trust medicine
  • Interaction with the system.
  • Treatment factors that might play a role for the patient. (Dosing. Some instances flexible dosing may be prescribed and have a better effect.)
  • Treatment duration – is it possible to treat on a long term basis if this is better. What’s the situation of progression? Should the drug be stopped? – Side effect management. What about prophylactic? All these need to be considered for Optimum Efficacy.
  • How good is the patient/Dr communication on these issues? What kind of questions are raised by the patient and indeed the Dr.
  • We always talk about ‘the patient’… are we always using the same process for every ‘patient’ or perhaps they should be treated individually.

Maximising patient outcomes with targeted agents:
Target agents: a new era in systematic treatment.
-> Patient needs to benefit from a therapy for as long as possible
-> Three key factors for optimum efficacy
-> Adherence
-> Getting the most out of your therapy.

Joining forces for access, quality, innovations and changes.
Communication and cooperation between all groups including healthcare pharma and patients is needed.

When a survey was conducted they discovered that – Less than 50% knew about the standard supportive actions.

Informing and educating the medical people who, in turn educate the patients.
More awareness and support. Brochures at patient and physicians meetings.

Relaunching new website working on a specific tool as an online database of side effect management. What are the real issues? What are the interaction that patients can do? Hopeful that medics will use it also.

  • Working on a patient guide on therapy and side effect management.
  • Also developed another patient guide, about complementary therapy and nutrition. What can I eat if one of my side effect affects my mouth, ulcers or the like? Patients also have to be aware of the side effects that may be because of the complementary therapy or nutrition etc as it could adversely react to the conventional medicine.
  • Engage with industry to be involved with patient materials. They have to be valuable to patients, patient friendly and written in a way that can be understood by the patients.
  • Physician training for teams on dermatology with oncologists/nurses/Drs. They can then best understand these side effects. Need a combination to work on these issues and involve dermatologists in the process.

Potential activities:
Patient advocacy groups

  • Information education of patients and carers
  • Information about influencing factors – complementary medicine and nutrition
  • Hotlines, info-materials, treatment diaries
  • Together with experts: practical recommendation.
  • Own studies/surveys (Evidence) with support of industry and experts
  • Online – Database “Side Effect Management”
    • Mailing list and/or forum exchange
    • Listings: Centres – best therapy care.

Healthcare industry:

  • Are packaging and dose schedules – is it patient friendly?
  • Studies: side effects not only ‘grading’ but also ‘duration’…
  • Real life studies – reg. dosing and outcome…
  • Congresses, conferences, symposia; Awareness!!
  • Information and education (doctors, nurses, pharmacists, etc)
  • Support/train local networks: Oncologists and nurses and dermatologists
  • Health policy: Compensation for time, communication, support
  • Develop material for patients – BUT together with Patient Awareness Groups
  • If care packages not via Medicals via Patient Awareness Groups (make it measurable on the holistic assessment?)
  • Materials and tools to support adherence
  • Not “company specific” Engagements with other pharmaceutical companies.

Oral target therapies in Sarcomas/GIST:
Professional therapy – and side effect management as the main factor for adherence. Our patients must get the BEST benefit for as long as possible from these kind of treatment with an acceptable quality of life.



Dr Francesco Pignatti, Scientific and Regulatory Management Department, European Medicines Agency, UK (“EMA”)
The process of authorisation for new generic drugs

What are generics?
Defined as essentially similar products. Must contain the same qualitative or quantitative composition in active substances as the originator. Same pharmaceutical form and studies to prove it’s working in an appropriate way.

Approx a 40% saving at the time a generic medicine is introduced.

What data are required?
Chemical, and pharmaceutical aspects (Quality)

  • Same requirements as for the product.

Non-clinical studies (in vitro studies, animal studies)

  • Often no studies required for generic product

Clinical studies

  • Only bioequivalence required for generic product (no need for traditional phase 1-3 development)

In essence: “if the fraction of the dose absorbed is the same, the human body should always do the same with the absorbed compound”

It may be that the ‘packaging’ ie the tablet form or coating makes it’s absorption being different.

Issues related to bioequivalence

  • Biowavier
    • For different strengths
    • Using the BCS classification approach
  • Parent compound versus active metabolite
  • Investigation in fed versus fasting state
  • Handling of outliers

EMA experience

  • Initial evaluation application by type
  • Average active time taken for evaluation is 171 days… no different from other drugs.
  • Rejection rate is about 10%
  • Whenever generic or another drug is approved, it goes on their website and more general information about what generic drugs are

Q. What about the psychological impact of changing from a drug that works to a ‘generic’ drug that they don’t know works?
A. Would have to understand there is a risk and if so what is it.
Q. Why is the patient responding to that drug? Will it be the same with the generic.
A – The active ingredient is the same and it is hitting the target. Objectively it should have no different response. Psychologically it would have to be considered on an individual basis and perhaps needs to be managed accordingly. Patient preference issue should be reviewed by the Dr.


Dr Karen Facey, Honorary Senior Research FelLow, University of Glasgow, Introduction to Health Technology Assessment (“HTA”)
How can patient groups be involved in the process of access to new therapies? – Health Policy Consultant, UK

Health Technology Assessment

  • What do patients have to contribute?
  • Providing evidence to HTA
  • Participating effectively in the HTA process
  • Principles of patient involvement in HTA

Difficult decisions

  • Do new treatments and procedures add value compared to current treatment?
  • Should the health system invest in them?
  • If we invest in a new treatment there is an ‘opportunity cost’ – we must take investment away from somewhere else in the system.
  • How do we decide what the priorities are?

In times of austerity we need to look at how to make a fair decision about how to spend the budget fair for the population we are serving.

How do we decide what to stop investing in?

Since NICE involvement there has been an increasing use of this process called Health Technology Assessment. It’s meant to be a fair systematic evaluation of the clinical effectiveness and/or cost effectiveness and/or social and ethical impact of a health technology on the lives of patients and the health care system. Should we invest to get that amount of benefit?

Health Technology Assessment International

Ethical issues come in strongly for trials.

HTA is being used more and more for where to spend money.

Health Technologies.
A ‘health technology’ is any intervention that may be used to promote health, to prevent diagnose or treat disease or for rehabilitation or long term care.

This includes education, vaccines and much more.

Another part of assessment should be to determine ‘which patients will benefit most from it?’ How long they should get it and if they don’t respond what next?

HTA and decision making is often considered a bridge between scientific evidence and decision-making.

Patients have unique knowledge and perspectives that can inform.

Patients and carers experiences:
Living with an illness

  • No one knows better what it is like to live with an illness day in day out, than those who are doing this – the patients and their family and friends who care for the.

How can patients perspectives in HTA be a route to robust evidence and fair deliberation?

Patients and carers can contribute to HTA

  • By providing EVIDENCE about their experiences and preferences
  • Through PARTICIPATION in the HTA process.

Within the Scottish Medical Commission’s Submission of Evidence Template – SMC 04/12.

Section 3 – views of patients. Carers and families.

Patient evidence:

  • Ideally, concise and balanced overview that reflects the range of patients perspectives
  • Variations in clinical practice
  • Personal perspectives about benefits and difficulties with the technology.
  • Views on rules for starting and stopping treatment
  • Evidence and facts NOT emotions.

Watch the lay people present their case to the Scottish Parliament – Health and Sport Committee Scottish Parliament on 29th January 2013. This demonstrates the importance of presenting evidence, facts and presenting as if a well run business.

Clinical trials vs patient benefit

Some tips about how to gather patient experiences and preparing the evidence:

  • Review helpline questions
  • Survey/questionnaires
  • Social networking
  • Patient stories (videos)
  • Qualitative research (interview, focus groups…)

Build an evidence base!

There is a research project of the HTA – Patient/Citizen Involvement Sub-Group (PCISG)

Through this sub-group there is participation in the HTA process at every stage:

  • Study design to produce evidence
  • HTA topic selection
  • Scoping
  • Submission of evidence
  • Presentation of patient experience to expert committee
  • Sitting on an HTA decision making committee
  • Commenting on recommendations
  • Patient friendly summaries
  • Dissemination/communications
  • Designing and reviewing patient engagement processes
  • Use HTA to inform charity investments
  • Contribution to governmental review of HTA.

Increasing there are opportunities for patients to get involved in designing the patient engagement policies.


  • Population
    • What patients?
    • When an agency starts a process it looks to what patients should be considered.
  • Intervention
  • What medicine, what dose, duration, how’s it administered etc.
  • Comparators
  • Outcome – what matters to patients?

Communicating to a committee

  • Understand your audience and how you are allowed to participate
  • Identify what other experts will be involved and seek to provide unique knowledge.
  • Be prepared with written evidence to refer to
  • Know how long you have to speak – top 3 messages
  • Facts, not emotions.

Tips for writing your consultation response (NICE-IPP)

  • Evaluation of efficacy and safety – not costs.
  • Doesn’t need to be lengthy or comment on everything
  • Short, focussed response
  • Be specific about the procedure
  • Balanced positive and negative
  • No local issues.


Eric Lowe, Chief Executive Myeloma UK
Build your own evidence base – experiences with NICE in the UK

Eric speaks about his involvement on behalf of Myeloma UK with HTA. Taken part successfully in 20 HTA appraisals. Very steep learning curve and some of the toughest experience.

Reimbursement increasingly a huge issue – tremendous problem across the world even in wealthy countries.

HTA is expanding and evolving.

My view is that in 5 years time the UK is going to be a great place as HTA continues to evolve.

Dumbing down health economics, public health doctors and government – empowering HTA.

Biggest mistake of working with patient groups is that they don’t appreciate the wider agenda ie not just about patients.

Work with NICE and help them do their job properly. Help them to create a new environment rather than butt against them.

Being involved…

  • Patient groups need to be crystal clear on what their ole is and isn’t. It’s a huge commitment to be involved in an appraisal so it is important that patients and patient groups are as effective as they can be.
  • They must also try to represent at the patient view beyond the emotional and angry. Got to behave a s a professional cognisant of all the aspects and being able to represent the case.

Being listened to…

  • Need to be seen as both a patient and a key opinion leader
  • They must understand the broad and competing issues around the table and then take up a compelling but balanced and credible position.
  • Early engagement is critical. It is important to go into an appraisal with a detailed understanding of the technology and the opinions and positions of other stakeholders.
  • Patient groups should engage with the company and clinicians to find out their views and opinions.

How early should you get involved?… Phase II study group or before!!

Must ensure that all representatives engage prior to that point to get consensus and agree on the issues and objections. They should work collectively to submit a cohesive and consistent submission rather than sending in several potentially very different submissions which may show that there is a poor understanding and little agreement about the benefits and/or impact of a new technology.

Building evidence…

  • Patent groups need to think about conducting research to provide evidence for their arguments.
  • Anecdotal is not good enough so by conducting studies of patient preference, values and impact etc. puts you in a much stronger position and gives the approval committee more certainty around what impact a new technology may or may not have.
  • Be careful about quality of life.
  • Need to think way I advance of the beginning of the appraisal to give time to conduct, analyse and write up their evidence/data
  • Patients also have a role in ensuring the clinical evidence is fit for purpose.
  • Patient groups also need to encourage industry to work with NICE Scientific Advice and also attempt to influence the clinical trial designs of registration studies or to encourage additional evidence development to address the evidence gaps. The service is available to help… only 10% of companies use the service!!!

Myeloma UK have established a national clinical trials network. We worked with pharma ahead of time, looked at the trial compared to NICE and then designed a phase 2 academic study to deal with.


  • Reimbursement issues are increasingly challenging
  • HTA is here to stay, is evolving and expanding.
  • Specialist expertise is needed
  • Inputs needs to be better, crap in crap out. Much more important than that… it’s based on a Phase 3 Global Licensing study… quite often that is very different to clinical practice… even if NICE say yes to the drug we need to make sure we can translate it into effective clinical practice.
  • Done properly it’s a good thing and patient groups should embrace it and make it work for them.
  • HTA is only part of the process and not the end.

Be partners and help involve HTA from the inside.

Macmillan Cancer Voices Conference 2013

images-8As a Cancer Voice and patient advocate I attended the Macmillan Cancer Voices Conference.  This is held each year in a hotel at Gatwick and runs for 2 days with plenaries, workshops and networking.  The attendees are a mix of people newly affected by cancer (diagnosed or carer) together with some old stalwarts who are, like me, advocating for themselves and others.  Many of us ‘old guard’ sit on various other tumour working groups, networks, research, NHS or hospital boards, Healthwatch/LINk, charity or patient groups.  My aims in attending this conference is to be able to share my experience (and that of others I’m familiar with), contribute to discussions at workshops and also come away with more knowledge about new and ongoing projects.  I also like to take the opportunity to share with Macmillan projects that are underway or consideration by other organisations and that perhaps they could work collaboratively or in conjunction with these others rather than reinventing the wheel.

IMG_4092The agenda is, as always, busy.  Attending these conferences isn’t for the faint-hearted and for some can be difficult.

I hope you find my notes from the Conference useful (my additional comments are in italic):


Welcome from Julia Palca, Macmillan Trustee (Chairman of Board).  Julia explained that she joined CancerLink in 2008 after her own diagnosis.  CancerLink was taken over by Macmillan and is now known as Cancer Voices.

Why are we here today:

  • “You are at the heart of everything we do”
  • Cancer Voices tell us what people affected by cancer need and how they need it.
  • Your Voices are influencing changes in cancer.
  • Challenging times for the health service. We continue to fund-raise, deliver services and influence.
  • 2012 was the most successful for fundraising. £115m raised. £112 spent on people affected by cancer. 8,000 more people reached than the year before.
  • Big part of reach is our Macmillan professionals. 3,000 funded last year.
  • Influence and force for change work. e.g. free social care at end of life. Welsh care delivery plan. Northern Ireland cancer commissioning plan.

Specific examples of user involvement:
Early diagnosis. A GP will only see 8 or 9 new cancer patients a year (on average). We need to raise awareness for GPs and have developed ClinRisk Tool (QCancer Overview).  It has now been piloted in 500+ GP surgeries. Over 800 GPs attended training for early diagnosis.

Improve patient experience. We’ve been working toward: High quality communication patients and staff; Patients involved in decisions; and Coordinated care between settings.

IMG_4094IMG_4095NHS  National Cancer Experience Survey. Macmillan is working with partner organisations to improve on results. Cancer Voices and Healthwatch to co-create Macmillan’s guide to using the survey.  Copies can be obtained from BeMacmillan.

Campaigning for carers. 1.1m cancer carers in the UK. 50% don’t identify as carers or realise there is support available to them.

This month Macmillan are launching a new campaign to reach carers and also lobby care bill to strengthen and support carers.

Redesigning cancer care systems. Macmillan are encouraging user involvement working group as part of the programme of changes in the NHS care system.

Exciting programme ahead and a great deal of opportunities for patient/carers to get involved and improve care.


Neil Stevens VP of Skype – keynote session.

Neil described his own experience.  At the time of his diagnosis, he thought nothing of jumping on a plane for a day of meetings in Sydney and did this regularly!  He was focused, impatient, driven and busy.  Life was good.  At the young age of 43 he noticed a lump on his hip.  He was overseas on a business trip.  A local Dr told him not to worry.  He carried on with his business trip.  Back to the UK he sought more medical advice and scans.  Initially he was told it was nothing to worry about.  He was fortunate to have private cover and once again pushed for more tests.

Eventually he had a diagnosis – a rare form of sarcoma – extraskeletal osteosarcoma.  So he knew the name but little else.

The tumour was removed by surgery and he was back at work in 3 weeks.  His life returned to ‘normal’ as if it never happened.

At a routine scan 6 weeks later life however he was told that the sarcoma was back and now in his pelvis and lungs.  They stated that there were over 100 tumours in his lungs and told he probably had 18 months.

So he put on his business head.  After all he was driven, focused and able.  He became the Cancer Elimination Officer (CEO) of his cancer.  Neil said that he had to address the cancer in the same way he addresses any business problem.  He first gets all the facts and data (no small task when there is so little), he would then build a strategy to eliminate it.  He was sure he would be able to do so.

He’s fortunate that he had money and contacts to track down and seek advice from the world’s expert at Sloane Kettering in the USA.  When he met with them, the consultant told him ‘You can beat this’.  Neil said that hearing that meant he knew it was true.  Once again an incredibly positive attitude.

He started chemotherapy immediately.  He knew that there was no sign of activity after round 1.  He kept telling everyone he could that he would beat it.  He kept a positive mind.

The final round scans couldn’t find anything!

What he learnt was the power of his own mind. He’s very factual and needed information. BUT he knew he could take control and manage it. Neil went for counselling, took up pilates, changed diet, aware of power of his own body and mindful meditation.

The hardest part was telling the children. Macmillan helped.
“Ask all the questions and let the children talk.”

He knew deep down he could do this.  He knew that by addressing it as he would a business deal, he’d be able to command what he knew he needed and be in control.

He wrote a document justifying why Cyberknife should be used not radiotherapy.. he got it.
He found a trial in the US. He did a PowerPoint presentation of why he should get on the trial. He got it.

He’s now been back at work full time for a year.  He’s moved to a new role which is less stressful.  He believes fitness and Pilates played a part in his health.  He meditates whenever he feels worried or panics.  He’s learnt to keep perspective.

He did have a small relapse in June with tumours in his lungs however is now completely clear following surgery.

As with everything in his life, he wondered how he can use his experience to create change. “I was given cancer for a reason. I can do something with this.” He met with Ciaran Devane (Chief Executive at Macmillan)

Skype’s amazing and free and global. He works for Skype.  What if we built a tool that allowed people with cancer connect?

Now the Skype Buddy system has been built and is being piloted. The principal is to enable people affected by cancer to be able to talk to specialists (financial counselling, medical etc) or patient to patient or carer to carer.  (I’m not sure if there will be group discussions but hope there will be as it would be a great opportunity to have group chats on specific subjects with perhaps nurses or clinicians on the call too).

Digital advisory board for Macmillan that he’s putting together has representatives from the likes of Facebook, Expedia, Amazon etc.

What is Skype Buddy system?  Click here for explanation.

IMG_4093The system is being piloted currently and looking for people to get involved, use the system, provide feedback and evaluate.

Sign up for the Skype Buddy pilot here

At present the system appears to have a small number of cancers and a limited sign up criteria.  I wonder if this will be increased in order to match Buddies on better criteria.  I am an Imerman Angel whereby we mentor others with the same cancer diagnosis by phone, Skype, email, letter etc, as required.  I’m a little disappointed that when I spoke with a number of charities, NCAT and NHS representatives about the Imerman Angels some years ago it was dismissed as a crazy idea to ask people to use technology to speak to someone similar!  Hey ho, I guess time and mindsets have moved on.  Imerman Angels match us on a huge number of criteria including age, marital status, children and cancer.  Although it may seem excessive, I know that some of that criteria would have been critical in my journey.

I have offered my experience to this project as I have worked with IT online projects for many years and also the Imerman Angels system (which I continue to mentor for).

We need more types of cancer in Skype Buddy project so that there is perfect matches.  For example (and perhaps selfishly for me) ‘soft tissue sarcoma’ is not defined enough.  Sarcoma cancer can occur anywhere in the human body and issues that may affect someone with Phyllodes in the breast will no doubt be different to someone with an Leiomyosarcoma.

Skype Buddy is about 1:1 relationship.  I do hope this will open up to group chats on specific topics.

We also need to ensure the supporting Buddies are provided with good (ongoing) training.  They should also be provided with the ability to reach out for support for themselves.

We need to use technology better and use it as a key element of the broader strategy.

Neil closed by saying that his views of life have changed as he enters the 2nd half of his life:

Seize the day… Enjoy the day, your life, that moment, value it. Be present with people. Engaged with people. He shared with us a very powerful statement from James Dean: “Dream as if you will live forever and live as if you will die today.


We then split out into different conference rooms for Welcome groups.  The purpose was to meet other Cancer Voices and Macmillan team members.  After introducing ourselves and finding out what each of us had done in the past 12 months for Macmillan we discussed what do we want from the conference?  The main points from our group were:

  • Not reinventing the wheel.
  • Feedback on the projects we’re involved in.
  • Updates from the previous conference.
  • Sharing information, data and reports with others.
  • Working collaboratively to provide information.


Workshop – Improving Cancer Patient experience in the New NHS

Following an exercise to introduce ourselves to other Voices at our table and then a  ‘ice-breaker’/competition, the workshop began.

3. Mid Staffs and the Francis Report.  The final report and executive summary can be viewed here.
4. Macmillans’ work to improve cancer experience
5. Group Exercise – using tools to improve patient experience

Mid Staffs
Failings of Care at Mid Staffs – Robert Francis QC Feb 2013 stated “This is a story of appalling and unnecessary suffering of hundreds of people”. The priority of his report, he said, was not to find a scapegoat, but find ways of putting patients and the quality of care first.

  • Not just cancer.. of course the mortality of all illnesses was too high at Mid Staffs.
  • Waiting times for cancer patients to see specialists were far too long which meant that many people died where as they should have been saved.
  • Chronic understaffing on cancer wards. Lack of commitment to improving outcomes for cancer patients.
  • Obsession for reaching targets but not standard of care for living longer and better quality of life.
  • No rapid referral system to oncologists which should have been in place.
  • Lack of support for the clinician from the MDT surgeons.

Failings on cancer care at Mid Staffs

  • Not listening sufficiently to patients and staff
  • Failing to tackle a negative culture involving a tolerance of poor standards and disengagement.
  • Increased focus on reaching national access targets, achieving financial balance and seeking foundation trust status.

How do we know if patient experience is good/bad?
There’s the NHS cancer patient experience survey, peer reviews and several different areas.

  • Information and Support
  • Emotional Support
  • Holistic plan
  • Dignity and respect

Francis Inquiry Report recommendations

  • Transparency
  • Fundamental standards
  • Accountable
  • Compliance

Macmillan have devised

Value Based Standard is a set of behaviours that is practical developed by patients and carers.

There are eight behaviours in the Macmillan Values Based Standard:
1. Naming – I am the expert on me.
2. Private communication – My business is my business
3. Communicating with more sensitivity – I’m more than my condition
4. Clinical treatment and decision making – I’d like to understand what will happen to me.
5. Acknowledge me if I’m in urgent need of support – I’d like not to be ignored.
6. Control over my personal space and environment – I’d like to feel comfortable.
7. Managing my own – I don’t want to feel alone on this.
8. Getting care right – my concerns can be acted upon.

Sadly a great deal of these ‘standard’ points should be what we do every day as humans. Why do we need standards to ask a medical member of staff to remember to ask how someone wants to be addressed? Anna, Ms Wallace, Miss Wallace etc.
Common courtesy!!

What is the NHS Cancer Patient Experience Survey (CPES)
The survey was completed by over 70,000 people and covers care before, during and after hospital.  Does it survey the family of deceased cancer patients about their experience?

IMG_4085We spent a short amount of time looking at extracts of the Survey and attempting to work out where we might feel improvement should be focused.  The Survey results are lengthy and difficult to interpret.  There are many tips on doing so, such as look at the figures for last year and this year to see if there has been an improvement.  How does that Trust compare to other Trusts?  If many Trusts performed badly, could you Trust improve sufficiently to be hailed as the ‘gold standard’?

In the final minutes of the workshop we discussed what we might do as patient/carers/advocates to ‘encourage’ our local Trusts to improve, with measurable improvement and to be held account.

I had been booked into a workshop by Healthtalkonline.  Disappointed that they weren’t in attendance at the conference as I wanted to find out first hand more about their work, strategy and future plans.  Perhaps next year?


The first day of Conference ended with a networking opportunity via drinks and then dinner.  It is always a joy to meet up with friends at this Conference, many of whom I don’t see from year to year (except on social media).  This year the entertainment was provided by a singer who crooned his way through a whole host of fabulous tunes.  On our table we seemed to know all the words and were (I think) the first ones up for a little dance!  Great fun and perfect entertainment for this event as it appealed to pretty much every age group (the joy of Robbie Williams doing covers!).


The second day began with the second workshop of the conference.

Workshop – Commissioning the bigger picture

What is commissioning?

  • Purchase/buying services.

The theory is that we are all commissioners.

  • I’m buying for my needs.  I look for value for money, choice, what I need, who am I buying for, can we afford it and quality.

Health service commissioning is similar. It happens all the time. Some stuff will be bought every week. some things might be purchased for special occasion.

The commissioning cycle.
Assessing needs -> Needs assessment -> Planning -> Specifying -> contracting -> evaluation.

Clinical Commissioning Groups (CCG) now do the ‘buying’ of services in the new NHS.

  • CCGs are a group of GPs that come together to form a group to commission services.
  • No boundaries are set as to how many GPs are required or the maximum number either.
  • There are now over 200 CCGs.
  • £100bn is the NHS budget and £65bn of which goes to the CCG.

Do GPs know what to buy?  How are these different CCGs going to ensure that nothing slips between the geographical groups of CCGs?

Kings Fund video – An alternative guide to the new NHS in England.

Sadly we didn’t get to see it as the broadband was too slow.. perhaps it should have been downloaded prior to the conference to play locally?

We then worked (as best we could) through picture handout (final slide of video below – click to enlarge).

Screen Shot 2013-10-08 at 14.43.54

All organisations involved have a duty.  Briefly, who is involved?

  • Public Health England – more proactive, awareness and prevention (sit within the council – local government.
  • Social care – care of the elderly, supporting people with disabilities, someone post cancer treatment needing assistance at home.
  • Health & Wellbeing boards – brings together main leaders in particular area.
  • Healthwatch – responsible for supporting public voice in monitoring health and social care locally.
  • Cancer Commissioning.  Commissioning Support Units support the CCGs and, in the most part, are made up of the original ‘commissioners’ in the old NHS structure.

HOWEVER one of the significant rules for CCGs is that they have to engage with members of the public.

Most of these are linked to the clinical senates within the new strategic clinical networks

How can you influence what is happening locally?

  • Clinical Commissioning Groups,
  • Patient Participation Groups – ask for information at your local GP surgery.
  • Hospital boards – find out which boards have patient representation.
  • Health and wellbeing boards making decisions about the needs of the local area.
  • Healthwatch/LINk

Or at a regional level.  Make enquiries.  Ask where you can be involved.

If interested in cancer commissioning get involved with strategic clinical network.

Not sure where to start?  How do you get involved?

Start with Macmillan involvement coordinators who can advise on where to go.

A useful 7 point ‘reminder’ for consideration and preparation before going into any patient involvement group or meeting:

  1. Define your preferred outcome and retreat outcome
  2. Consider the second position – what does the other person think?
  3. Be clear with benefits for both sides
  4. Present evidence and proof to reassured
  5. Think about your delivery
  6. Anticipate barriers or blockages
  7. Explore the barrier, empathise, re-present.


My final workshop of the conference was on a subject I’m passionate about.  I hoped to find out more about initiatives that Macmillan are involved in to improve care for people living beyond diagnosis.

Workshop: Improving Care for people living with and beyond cancer
Sandra Rowlands and Gloria Payne

National Cancer Survivorship Initiative (NCSI):
Survivorship being from the first thought of cancer until the last breath… not just post treatment or for a set period of time.

Recovery Package:
They showed a slide to show the numbers of people living with cancer and how they are projected to boom:

  • In 2010 there were 220,000 living with and beyond cancer.
  • In 2030 it is projected that there will 370,000 (1 yr survival); 570,000 to 990,0000 (1-5 yrs) and 1,290,000 – 2,680,000 (more than 5 years).

Often it is spoken about that the number of people living with cancer is set to double by 2030.

We are already struggling to accommodate the increased numbers of cancer patients.  If the numbers are correct we need to be collaboratively working for survivorship  – charities, NHS, local health, patient groups etc.

Another projected figure that truly is worrying is that by 2020 almost 50% of Britons will get cancer but 38% will not die FROM cancer.

38.7% of cancer survivors are of working age ie 18-64 = 38.7%  If this percentage of working people living with a cancer diagnosis continues at almost 50% of the population then it will have a huge impact because of needs and use.

Median survival times are improving. 1971-72 = 1 year whereas 2007 5.8 years.

NCSI 2010 Vision

There are five key shifts:

  • Cultural – focus on recovery, health and wellbeing.
  • Holistic assessment 9 individual and personalised care planning.
  • Self management – not clinical follow up.
  • Tailored follow up support.
  • Patient Reported Outcomes Measures (PROMS) not clinical activity.

My cancer treatment – gives national cancer experience survey results, and peer reviews, what hospitals are centre of excellence, mortality rates and survival rates etc.

New document prepared by the NCSI “Living With and Beyond Cancer: Taking action to improve outcomes 2013.

Also detailed is a Recovery package to support the new NHS commissioning and includes:

  • Supporting self management.
  • Physical activity and healthy lifestyle.
  • Information financial and work support.
  • Managing consequences of treatment.
  • Assessment and care planning.
  • Treatment summary and cancer care review.
  • Health and wellbeing event.

Macmillan Identifying your concerns checklist (white form) which is completed by the patient/carer and then returned to the specialist (holistic needs assessment).

This is then discussed and worked through with the Care plan which then has a plan of action etc.

There is an excellent piece on the NCSI website which explains each part and also has downloadable forms to adopt for good practice.

These are also available on the BeMacmillan website.

A useful tip for the Treatment Summary use was for the purpose of travel insurance.  As any cancer patient knows travel insurance can often be difficult and expensive to find.  Macmillan advised that the Treatment Summary form could be used as the basis of medical information for this purpose.  My own travel insurance is through InsuranceWith who specialise in travel insurance for people with long term conditions.

We spoke about the importance of Health and wellbeing events being held locally.  It was suggested that through the patient participation groups this could be set up and achieved.  Also to contact your Macmillan Involvement Coordinator to assist and perhaps provide some funding.

In order to sustain recovery, perhaps via self care with support and open access to the medical teams.  Shared care within the hospital environment and local, social and self care.  However complex cases must be managed through an MDT.

Care co-ordination and remote surveillance.  This needs collaborative working between the clinical setting and local/social care together with third sector organisations.

Walking for health is a scheme whereby walks are organised for free locally.  However could more be done.  If you have high blood pressure or a heart complaint you are entitled to some physical exercise grant/access however as a cancer patient there is no physical exercise grant/access available yet. This should be highlighted.. could you raise this with your MP?

Work and cancer – Often this is overlooked during treatment but essential for so many to be able to return to work in some capacity.  Macmillan advise people NOT to resign but to find a working solution with your employer.

Taking action – Innovation to implementation: Stratified pathways of care for people living with or beyond cancer- A “how to guide” was published by NHS improvement in 2013, and provides local teams with a very practical ‘how to’ guide based on the experience of the test sites.

What does success look like?

  • Improved outcomes for people living with and beyond cancer.

Can you help ensure that this happens?


The final plenary session, “A journey with a view from 3 sides of the fence”, and close for the Conference was given by Johnny Browne who was a GP, was a carer for his wife with cancer and is a Macmillan GP advisor for Northern Ireland.

Macmillan GPs special interest in cancer and their role is to promote best cancer care in their area/locality.  (Macmillan fund GP training and I would love to know which GPs had received the training so that if I was to move locality I could ensure my GP was familiar with cancer treatments.  Is the list of Macmillan GPs available to the public?  I can’t find it!)

In an attempt to point out areas where I think cancer care can be improved and looking from 3 very different perspectives:

  1. Do not forget as a GP the importance of self esteem and body image in cancer patients.
    1. Look Good.… Feel Better programme
  2. Diagnosing cancer early:
    1. Awareness
    2. Difficult journey, sometimes truly difficult, often symptoms mask as something else. Patients should be aware of symptoms and not be afraid or embarrassed to say anything. “If you were meant to be shot, you’ll not drown”
    3. Diagnosing Earlier App?
    4. Take pity on the poor GP who is like a penguin. Don’t refer too many patients. Make sure all your referrals meet the referral guidelines?
    5. All cancer studies ask “how many times you attended the GP before diagnosis”
    6. Most of the time the GP didn’t miss anything as often symptoms can be something else too… but we’re improving in seeing patterns.
  3. Improve communication
    1. As a carer I realised how important it was. Written communication and results. Between patients, medics, staff, GP etc etc
    2. How many people do you get in contact with during your cancer journey?
    3. Sensitivity, know your patient, what they want, how they should be addressed etc.
    4. Difficult for me as a GP to navigate the cancer journey. It can be extremely difficult for someone who is new to the NHS and ‘cancerland’.
    5. Treatment summary – Macmillan have developed this and it explains what happened to the patient. 3 copies – patient, hospital and GP. You can take this with you in the case of emergency, insurance or advice.
    6. Twitter showing how the world really looks from his photos posted. (Commander Hadfield)
    7. #hellomynameis campaign on Twitter
  4. Four things I’ve learnt about communication
    1. Health care professionals can do better.
    2. Look patients in the eye
    3. Difficult care pathway – passport to death. Talked to the patient to obtain the information rather than GO through a form. People and organisations have made the form more important than the patient – we need to change that back and hear the story rather than fill the form.
    4. 1 or 2% who give you bad communication can undo all the good of the rest of the team who give great communication.
  5. When you are going through you cancer journey, we don’t or are reluctant to complain.
    1. Perhaps it’s up to us to put the message out there or complain for others (factually, professionally and politely).
  6. Spread the word ‘Living with Cancer’
  7. I knew nothing as a GP nor as a carer but as a Macmillan GP I do… from you.
  8. All cancer patients need follow up and review.
  9. Travel insurance for those affected by cancer.
  10. Remember to live.. we did House building in Zambi, white water rafting and more… remember to Live.
  11. Don’t remove Hope.
    1. Why can’t you be one of the small survival percent.
  12. Spread the word about exercise
    1. Any exercise is good.
  13. Remember no one should face cancer alone.
  14. Keep a diary.
    1. Not of medical things but also happy fun memories and thoughts. It can be a lonely disease even with family and friends.

General Practice 2013.
Its changing. How does someone with a chronic condition have a relationship with the GP?  It’s in change or flux.

GP out of Hours 2013.
Important to a cancer patient to be able to access GPs out of hours. Could they avoid the A&E admissions?
But A&E is often not a great place for a cancer patient to be first hand and stuck on a bed in a hallway. We need to get quicker access.

In his wife, Lynda’s diary was a note:

“I hope you enjoy your new job with Macmillan to help people with cancer and to bring your personal experience to this”.


General comments for this Conference:

Time is short to discuss fully all the topics and workshops and listen to the plenaries.  Perhaps we should consider:

1/  Sending out by email or post preliminary information for reading prior to the Conference.

2/  All Voices are attending to participate.  I don’t think there’s a need for an ‘ice-breaker’ in each session.  It just wastes time and irritates those who want to get on with the discussion.

3/  Whilst all Voices attending have a personal experience of cancer (diagnosed or as a carer) it should be encouraged to, if required, use snippets of their experience if pertinent to the workshop. 

4/  Should some of the workshops be for newbies and some for ‘old stalwarts’? 

5/  Should there be a workshop on ‘how to complain’ so that many of the ‘negative’ experiences that participants feel they need to share can be addressed in this workshop in a constructive manner?

6/  So often during the conference people bring up negative experiences and complaints with the health system.  Could Macmillan also encourage people to report when things have gone well and encourage best practice by highlighting that someone has excelled at their job!  We all like to be appreciated and there are a great many people doing a fantastic job in the NHS and cancerland – we must learn to say thank you!

Rare Cancer Foundation Patient Day

I was invited today to attend a ‘Patient Empowerment Day‘ hosted by the Rarer Cancer Foundation (“RCF”).

As you know, Phyllodes is considered a rarer cancer as the incidence has historically been incredibly low.  Why ‘Rarer’?  Well there is a school of thought that says that rare cancers at the ones that a lot of people know about but don’t feature in the top 5.  RareR cancers are those that constantly need education for people to know about!  However it’s worth noting that there are a tremendous amount of rare and rarer cancers that barely make it into the press and therefore often miss out of funding and research as they’re deemed to be too quiet!

My invitation to this conference was firstly because of being diagnosed with a rarer cancer (and a member of the RCF) but also for the work that I do as ‘Living Beyond Diagnosis’ advocating for better care and survivorship issues for all cancer patients and their carers.

The Day was opened with an introduction by Andrew Wilson, CEO of Rarer Cancer Foundation.  Andrew is passionate about improving the standard of care for rarer cancers.

Professor Martin Gore, Medical Director at the Royal Marsden talked about how to work with your clinician and explained more about the role of the MDT (MultiDisciplinary Team) in patient care. He felt it was imperative that patients in the UK were aware and understood that each patient was to be discussed at an MDT.  What they do at their meetings?  What it means for the patient?  I certainly had no idea what an MDT was until I was thrown into ‘cancerland’!  Macmillan Cancer have a good explanation here.  It is essential that all parties involved are represented at an MDT when discussing each case.  Of course there are time and logistic considerations however should one party not be there, it may be that the patient’s case is perhaps not as holistic as it could be.  All MDT meetings are minuted and again it’s important that patients are aware of this as it can be referred to at any time by any member of the medical team to ensure the procedures and rules are adhered to as well as being reconvened should the patient’s situation change.

He spoke of the importance of patients knowing their rights within the NHS.  He highlighted that the NHS is OUR service and in order to be part of our care we should not be afraid to ask questions, make choices, take part in clinical trials and, with advice, own our care.

He spoke about the importance of clinical trials and how most private patients in the UK do not get access to clinical trials.

He explained a little more about the New Cancer Drug Fund (NCDF) and the changes that mean that there are more drugs now routinely available.  It is crucial that we start to see more trials and subsequently more drugs available to the rare and rarer cancers.

Our next speaker was Rachel Rowson, Media and Communications Professional.  Rachel is a policy advisor to the RCF and was recently involved in the development of the RCF’s report There when you need it the most?  The Cancer Drugs Fund: 2011-12 annual report.

Rachel spoke at length about the need for patient advocacy.  She said how important it was that rare and rarer cancers should have a voice in the media.  She used breast cancer as the perfect example of how the voice of patients is often at the fore of media subjects.  Rachel encouraged us all to get involved and also to ask others to contact them if they would be interested in doing so.  The question of support for the patient/carer was raised during the Q&A session and I was pleased to hear that training and support is provided.

Would you be prepared to take part in pro-actively campaigning, perhaps doing radio, newspaper or TV interviews about your experience?  Also RCF are putting together a patient panel.

If you are interested in becoming involved in this worthwhile task, please email with the following information:

Email address
Year of Birth
Cancer Type

Rachel also launched their new publication “The Informed Patients Toolkit” – a truly valuable booklet for people entering cancerland for the first time or unsure of the structure and where to go.

Lynda Pyle, Senior Research Nurse at the Royal Marsden then spoke about the role of the Clinical Nurse Specialist (“CNS”).  We know from the results of the past Cancer Patient Experience Survey that there is a direct correlation between better patient outcome and have a CNS.  (I don’t understand why when we know this that this role is being marginalised by less recruitment and overloading with other tasks on the remaining staff!!).

Lynda in her role as Senior Research Nurse spoke about the importance of clinical trials and recruitment for them.  She also explained that we needed to try to remove the myth and worry about clinical trials from people’s minds.  A good Research Nurse will, of course, discuss everything with you, answer all questions and be available to you should you have more questions.

Maggie Wilcox – Independent Cancer Patients Voice and Helen Bulbeck – Brainstrust

Both Maggie and then Helen spoke of how their roles have been developed from their own experiences.  They spoke about the importance of patient advocacy.  About the need for a cancer community of people affected by cancer who can share their experiences (both cancer and career) to make changes and influence the way cancer services are developed in the UK.  Both organisations are great examples and if you’re considering doing more as a patient or carer advocate then these would be an ideal place to find out about opportunities.

After each presentation there was a session of Q&As followed by a short exercise wherein we were asked on each table to talk about our own experiences (or those of others we know well).  In all cases very lively discussions and a great deal of notes for the RCF to go through after the Day.

British Sarcoma Group conference

I was invited to attend this year’s British Sarcoma Conference in Nottingham.  The British Sarcoma Group is the professional association of the specialist clinicians, nurses and supporting professionals who treat patients with sarcoma in Great Britain.

On arrival it is evident that there are a great many professionals attending the conference.  It’s wonderful to be invited as a patient advocate with personal experience and to be amongst professionals that want to understand ‘the journey’.

Given that the conference is one day only, I’m pleased about the opportunities to speak with the professionals ‘offline’ ie outside of the workshops.   Often shorter conferences don’t allow time to speak delegate to delegate as the agenda is often squeezed up.

However equally there are a number of workshops that I’d like to attend and have to make a difficult decision between them to fit the agenda!

Screen Shot 2014-08-20 at 12.39.25Screen Shot 2014-08-20 at 12.39.36The first workshop I attend is ‘Your treatment is over, now what?’.  Andrew Shepperd first explains in brief his journey with Ewings Sarcoma and also about his time ‘after treatment’.  He is a Trustee of the Bone Cancer Research Trust and is able to liven the workshop with discussion from his experience of other sarcoma patients and carers.  As you know with an organisation like ‘Living Beyond Diagnosis’ this is a passion of mine and I know from my experience and that of speaking with others that the ‘now what’ is a huge aspect of a cancer diagnosis that isn’t tackled or spoken about.

A few of the points raised were:

  • A sense of isolation when treatment finishes;
  • Friends and family (all good intentioned) tend to stop asking how you are.
  • Reframing the illness by looking at ‘problems’ in a different way.  One person spoke of their recurring dream where they had been ‘watching’ their child’s wedding day but they weren’t present ie implied they were dead.  However had learnt to ‘reframe’ it by putting themselves on the front pew in the dream and then learning to redream it regularly as if they were there.
  • A need to notch down new events and future dates ie ‘investing’ in a new car; child’s first day at school; planning and booking a future holiday.
  • Ask for help earlier about anxiety and worry.  If you ask early it won’t be a surprise if you ask again when and if you need it.
  • Guilt of being a ‘survivor’.  This was a lengthy discussion and would need pages to discuss here.  Suffice it to say that a great many people in the room felt ‘guilty’ about surviving when others they met during treatment/surgery didn’t.  Dealing with the ‘why me’ can be extremely difficult.
  • Counselling.  It was interesting how many hadn’t thought of counselling.  How many had asked for counselling but had had it declined.  How many had received counselling also.  It was felt that this should be more obviously on offer to all diagnosed patients in the UK and not restricted to just when in treatment but an ‘open door’ policy be activated.
  • We also discussed ‘incurable -v- untreatable’.  A big difference in the two and little understanding the general public as to what either really means.

My second workshop was ‘Key facts in decoding sarcoma research – lay to expert, in 45 minutes flat‘ by Chris Hiley.

No mean feat to explain any research project from bench to bedside in 45 minutes but Chris was able to do so.  Also in a very humorous fashion!  Chris spoke about policy and funding applications.  About how decisions were made as to what would be funded and the difficulties sarcoma had in funding from main sources due to the rarity of the cancer type.

My final workshop was the ‘Patient closing plenary – Summarising and action points – patient delegates‘.

This session was led by representatives from Sarcoma UK, Bone Cancer Research Trust and GIST Support UK.

An incredible amount was discussed, ideas banded about with reference to spreading awareness of sarcoma with GPs, primary and secondary healthcare but also within the general population.  We discussed at length the new initiative by Sarcoma UK of the ‘golf ball pilot project‘.

There was also discussion regarding the many types of sarcoma and how it was imperative that we work together rather than pit against eachother.  However priorities should be directed not necessarily to the loudest voice or largest number of sarcoma.


Overall I was pleased with the content and action of the conference however felt that the sessions were slightly more rushed than I would have liked.  They were all large topics and it was obvious from the lively discussions that there was a great deal to talk about and perhaps dig deeper in depth of many of the points raised.  It was great however to have many sarcoma specialists in each of the workshops, taking notes and seeing how something that they may think quite small in a person’s journey can actually be the opposite and be challenging to moving forward.

Text to a friend

Whilst away at the European Sarcoma Conference I knew something wasn’t right.  I think I knew that Tish would be protecting me whilst I was overseas.  She fully supported my being involved in conferences, boards, cancer networks etc so wouldn’t want to burden me whilst I was abroad.  But I’ve had this dreadful feeling all day.  Below is a (long) text message I sent to a friend:

“I need to run something by you. I don’t know that you’ll understand nor that I’ll be able to tell you all I need to say but I need to know I’ve tried and need to know you’ve listened.

You may remember me talking about the ‘champagne and shoe’ girls. A little band of cancer warriors, Kerry, Letitia and I. Kerry and Tish had ovarian cancer and I was introduced to them quite some time ago but we hit a chord and just ‘got it’, ‘got each other’. No matter how bleak a prognosis or indeed how bleak we felt, we’ve been able to spark each other, support one another, have a laugh and look beyond.

This time last year Kerry passed away. I had the call from Tish at this conference in Berlin and my heart broke just a little bit more. Kerry was always so strong. We had a giggle. We both enjoyed bubbles and we also enjoyed the same shoe collection and spent an hour or several trying on new pairs.

But Kerry was truly Tish’s support. They both had the same diagnosis and a similar prognosis. Tish and I have been close this last year and there have been many times when she’s been feeling down or I have, we’ve met up, put the world to rights and left back in our positive places. Some times we’ve not managed to meet but talk by text. Tish has been very poorly but after living her life and going to Australia embraced life once more and foiled the experts with a change in her prognosis once again.

She’s recently taken a turn for the worst and I saw her last a few weeks ago when she was a shadow of her former self but still had a smile and a hug for me.

She was admitted again to hospital a week or so ago and we’ve texted. The last texts written by her 22yo daughter last night.

I don’t know what to do. I’m being told by text that she’s weak but ok. But I fear the worst. Selfishly. Wonder how I’m going to cope without my rock to meet with at my bench or text or talk with. Somehow the world is so much better when Tish makes it better.

I’m so scared and don’t want to be the last champagne and shoe girl here. They both had a husband or daughter in their lives and I don’t. It makes no sense.

I’ve got a couple of missed calls and voicemails on my mobile but my PIN number doesn’t work so can’t pick them up… Please tell me they’re from you?

Not really sure if I’ll send this or if you’ll read it… Or what I want from writing it. I just know I want Tish to prove them all wrong and grow old being cantankerous and naughty with me.”

All change

In my posting in July I mentioned that I had asked my wonderful consultant about referring me to The Royal Marsden hospital’s sarcoma team for my follow up surveillance.

At 2pm today I had my first consultation appointment with the sarcoma team at The Royal Marsden. The waiting room was absolutely packed and I waited nervously for my name to be called.

I was concerned that they wouldn’t take my case on but that I had sort of ‘discharged myself’ from my previous consultant’s care. I was worried that they would perhaps think I was over anxious about follow up scans or perhaps that they would recommend I stay with my existing hospital. I was concerned that although they are a centre of excellence for sarcoma in the UK, that the person I was assigned wouldn’t know about Phyllodes – after all there are over 70 different sub-types of sarcoma.

So despite my waiting only a very short time, I was more than a little anxious. Had I made the right decision in asking my lovely consultant to refer me? Would he take me back if I hadn’t? What would I do if they didn’t take me on as a patient? What would I do if they changed my follow up surveillance schedule in a way that worried me more?

Phew, I’ve been called.

I first met with the nurse who explained what would happen and who I would be seeing. She then left me in the little consulting room whilst I waited for the Registrar. Seemed like ages and once again all my anxieties were kicking in. The Registrar then arrived and ran through my medical history and also asked about my siblings, parents and grandparents’ medical history. She also told me that my case had been discussed at today’s MDT (multi-disciplinary team) meeting in detail.

And then, she asked the question that I was most worried about answering… why was I here and what did I want from the Royal Marsden? So I told her why (see previous post) but I also told her about our Facebook “Phyllodes Support Group” and what I’ve been doing with Living Beyond Diagnosis. She asked a few more questions and then said she’d return with the consultant.

I was then left in the little consulting room on my own… and yes the little voice in my head was once again telling me that they wouldn’t have me as a patient etc etc.

I was terrifically grateful when the door opened once more and the Registrar came back into the room accompanied by a consultant. He introduced himself and we spoke briefly about me, my medical history, why I requested the referral and my previous care.

He then asked more about the Phyllodes Support Group and was terrifically impressed with the number of members, the information and experience sharing, the documents and reference papers that have been collated and also the polls and data that we were collecting and sharing within the group. He also said that he felt that should we, as a group, wish for some assistance or input for the group, then I should just ask and he would try to facilitate this for us.

I was also able to tell him about the report that is currently being finalised containing a section about Phyllodes from the contact I have met at two Cancer data conferences in the UK. He would love to see a copy of this when published.

It goes without saying that I will be looking at what input will be useful from RMH and also what we can provide to RMH from the group… certainly it would be fabulous to have a medical facility, who specialises in sarcoma, to take an active interest in the group members and their health. Watch this space!

We then returned to my health and monitoring for recurrence or metastases from the excised malignant phyllodes tumours. We agreed that my previous consultant had done an excellent surgical job in removing both of the tumours and then ensuring that sufficient clear margins were obtained. He agreed with the advice that I should not have any adjuvant radiotherapy at this time. He also agreed that the screening regimen implemented in my previous hospital was the best to quickly identify any local recurrence (together with my own personal checks). We then spoke about any requirements for any additional screening/surveillance for possible metastases, particularly with regard to the malignancy and mitoses of the excised tumours. He suggested and has requested that I have a 6-monthly chest x-ray at the same time as my existing scans ie annual mammogram with intervening 6 monthly ultrasound of both breasts.  This chest x-ray will be looking for any traces of naughty cells in my lungs.

I left RMH this afternoon feeling that I had made the right decision to ask to be referred. Perhaps I should have made the request at an earlier stage and saved myself some levels of anxiety along the way.  But I also know that I couldn’t have managed to do that before now.

I am, of course, sorry that I won’t be hearing my, now previous, lovely consultant refer to me as ‘Miss Lumpy Bumpy’ again but I’m so very grateful for his care up until now and can only say that whoever the patient is who gets my slot on his busy schedule is a very very lucky lady.  Perhaps I shall pop in with a box of biscuits for him and the team when I’m next passing my old hospital.

So that’s it. Next scans/checks are in January. Between now and then I’ve got a number of cancer conferences to attend, not least the annual Sarcoma conference which this year is in Italy. They were asking for patient advocate attendees to speak at the conference and I’ve put my name forward.  I would love the opportunity to tell them all about our Phyllodes Support Group and also about Phyllodes itself, in the hope that perhaps more medics and researchers will be more aware and knowledgeable.

NCIN (National Cancer Intelligence Network) – Cancer Outcomes Conference (Day 2)

Our second day of the conference “Supporting research” was introduced by David Ardron, Lay member, National Cancer Intelligence Network Steering Group.

David is passionate about advocacy and patient involvement at all levels.  It’s always a joy to be around David as he’s very good at inspiring you to do more, to get involved, to have a voice, to listen and to talk.

John Parkinson, Director, Clinical Practice Research Datalink
Clinical Practice Research Datalink – presentation

John reiterated the need for quality data “Extremely important that we monitor the quality of data”.  I loved that John informed us that the worst UK data is still leagues ahead of much of the global data, including the USA.

CPRD is looking at the quality of the data, setting and monitoring standards.  Looking at randomised trials with regard to the data and every day improving it and the standards for it’s retrieval and inclusion.  Currently they have 52m signed up in England and are adding another 12m for Scotland, Wales and Northern Ireland.

The data is accessible, searchable, cross-referenced and linked to many systems.  Thereby allowing the users to really determine patterns, information, requirements, costs etc associated with the data.  It’s aim is so that utilising this data becomes easier so do the results to predict AND address trends or increases in disease but also to be able to report on where something didn’t go as it should or can be improved upon.

Fascinating and I shall be watching the news with regard to CPRD.

Kerina Jones, Senior Research Fellow, Health Information Research Unit (HIRU)
The Secure Anonymised Information Linkage (SAIL) system: challenges and opportunities in health data linkage – presentation

Kerina’s presentation of the SAIL system once again highlighted many of the challenges idenitfied by others.  THey are however tackling many of them head on with this system.  Certainly worth watching for other integrated systems, how to integrate and why integrated data is required if we are to make headway in healthcare.

Kerina also showed us the MS Register which is being used to understand more about ‘living with MS in the UK’ and trying to make sense of MS.  As you know Mum was diagnosed with MS and although she lived a long and active life for many many years with the illness, it ended her life early.  She sought answers to why, what if, how since diagnosis and importantly questions such as how do I lessen the effects, deal with the side affects or get by day to day.  Perhaps this MS Register will lead others to the answers that Mum so desperately sought or perhaps the people currently providing answers will help a new generation to manage life with MS.  If you know someone diagnosed with MS, perhaps they would like to register and become involved?

Cathie Sudlow, Chief Scientist, UK Biobank
Research opportunities in UK Biobankpresentation

Are you part of the Biobank database?  I am.  So I found it really fascinating to hear more about Biobank from the aspect of how the data is being used, rather than the questions that I see and reply to.

It was a huge project to implement with over 500,000 UK adults taking part.  Questionnaire to be completed, physical health tests to take, blood and spit to be given and analysed and then the follow up processes.  As a participant I found the inclusion process very easy to do and well organised.

Cathie showed pictures of where samples are stored and also how they may be utilised for testing.  Her slides in the presentation and the information on the site itself show how the data collated and utilised on this scale really can make improvements in care in the UK.  It also demonstrates that projects, even on this large scale, can also be carried out efficiently and make a difference.  However it really does require our involvement – would you get involved?


We then headed to parallel sessions chosen by each delegate from the following:

Health economics
International focus
Co-morbidity and risk adjustment
Recurrence and late effects

I attended: International focus

The session was introduced by Dr Jane Hanson, Lead Advisor for Cancer, Welsh Government & Head of Cancer National Specialist Advisory Group Core Team.

There is something so fabulously refreshing and encouraging to hear from a group of clinicians and researchers about collaborative working across borders.  All the speakers in this section were able to demonstrate joint working, the reasons for it and also sourcing some results.  Excellent and I truly hope that other, perhaps insular projects, look to join forces with others.

Harry Comber, Director, Irish National Cancer Registry
Towards a European cancer information system; the EUROCOURSE project and beyond – presentation

EUROCOURSE was new to me.  It’s growing and the buy-in from a multiple level of sources and countries is growing.  The strict regimen for which data is accepted is being acknowledge and addressed (after many iterations and refinements).  The future, albeit, a great deal of work could benefit more than just cancer.  By sharing into a joint portal all european cancer registry, we will be able to not only improve healthcare but also to look at Europe being the choice and specialism for some cancers – and accessible.

Home (European Cancer Observatory)

There is a conference in September 2012 (that I’m not attending) IACR Conference 2012 at which it is hoped to define further registration methods, data quality issues, evaluation of clinical care, survivorship and survival and linkages with other data.

Dr Roberta De Angelis, Senior Researcher, National Centre of Epidemiology, Italian National Institute of Health
Cancer survival in Europe: first results from the EUROCARE-5 study

Dr Roberta De Angelis presented information for the first results that haven been drawn from Eurocare-5 study.  The Eurocare-5 study looks at the survival and care of cancer patients in Europe.

The project has been going for some years and has grown with each iteration.  Increases in numbers of patients included, numbers of registries participating and is now from 12 European countries with incidence and survival data available.

Because the data is now stretching back some years and has been validated and improved by some hardlined protocols and rules, they are now able to utilise the data for the purposes of good reporting.  There have been a great many results and documents produced from this data and is accessible on their website, including reports with reference to the relative survival in Europe for breast cancer patients.

Dr Martine Bomb, Programme Manager, Cancer Research UK 
The International Cancer Benchmarking Partnership (ICBP)

The ICBP is a unique and innovative global partnership of clinicians, academics and policymakers.  Dr Martine Bomb was terrifically excited to be able to let us know that there were 4 papers about to be published (currently in final review) relating to their findings.

They have been particularly working with breast, colorectal, lung and ovarian cancer.  The collaboration of their work spanning 12 jurisdictions in 6 countries and 3 continents and trying to establish WHY cancer survival rates vary between countries and jurisdictions.

I think its also important to note that the first phase of this project was funded by NCAT (National Cancer Action Team in the UK) but the next phases are to be funded by each jurisdiction contributing to the cost.  Hopefully this will not mean that things will slip due to funding issues but that the impetus of the work already undertaken and published will keep the project going and growing.

A link to some of the ICBP publications can be found here

Dr David Brewster, Director, Scottish Cancer Registry introduced the first afternoon session
Data visualisation

Alan Slater, Cancer Research UK
Using data visualisation to engage the public and to communicate the messages to cancer research and control – presentation

Alan Slater, as always, gave an engaged presentation relating to data.  I know it’s a little difficult to imagine how data can be engaging but really it is… I think I love it so much because I know how the experts, analysts, clinicians and researchers are improving the quality of the data, the breadth of where the data is retrieved from and then how the data can be interpreted to make a difference.

The first few slides of Alan’s presentation was using design and infographics from Facebook to show how the presentation of data can be deceptive.  He then presented the data in a different way and then a further method – same data but a very different visualisation and view.

His presentation and many different ways of presenting data, highlighted that it is terrifically important to know and understand your audience.  To present data accurately and specifically for the audience but not in a way that it appears to be false or inaccurate but perhaps simplified or indeed in depth.

He also provided a list of good tools that could be used for data visualisation tools.  But importantly he also confirmed what we all know (we being involved patients or patient advocates) is that data is important in a patients decision making processes and the patients should be empowered with information provided accurately and told well.

David Ardron, Lay member, National Cancer Intelligence Network Steering Group
What s a Kaplan-Meier Plot anyway? – presentation

David’s presentation into what a Kaplan-Meier Plot really is was a very personal one.  He used the case of his father to demonstrate the need for patient involvement, the value of choice and quality of life.  It also spoke of learning from examples past and present.

Sarah Stevens, Eastern Cancer Registration and Information Centre
Insight Track; a new tool for visualising and following the patient pathway – presentation

Sarah’s presentation related to ENCORE data.  A great deal of the issues that she spoke of with regard to data input, transfer, value and use had been covered by a great many previous speakers.  However one line she said really did resonate we should use data registries such as ECRIC in order to “Fight cancer with information”


The final and closing plenary session was chaired by Richard Stephens, Chair, National Cancer Research Institute Consumer Liaison Group.

Simon Davies, Chair of Cancer52 – representing 57 cancer charities that focus on rare and less common cancers
Less is more!  The way forward – presentation

Often when we’re talking about cancer data, information and resources, we hear only about the ‘main’ cancer types.  So it was very refreshing to have Simon Davies speak at the closing of the conference about the importance of data with regard to rare or less common cancers.  53% of deaths in the UK are attributable to cancers that are defined as rare or less common.  However the difficulty is that of those 53% there are many different types of rare or less common cancer types!

Simon spoke of Cancer52 which now represents 57 cancer charities and work together to ensure that rare and less common cancers are on the agenda for research, discussion, information and support.

Mike Richards, National Cancer Director for England
National cancer intelligence: where now; where next? – presentation

Mike advised that the NCIN is to be moved into Public Health England.  What this should mean is that is has more governance within the health arena in the UK.  He spoke of where the information was obtained, where it should be accessed and how it should be used.

We also learnt that there is to be a new collection of genetic information added to the NCIN dataset in the near future.  It is hoped that this will lead to better output, better and more accurate commissioning and all this in a time effective period.

Mike’s final point was “Most importantly – cancer intelligence will be THE primary driver of improved outcomes – as a lever in itself and as the bases for other incentives (e.g. financial)”.

My conclusions of the conference.  Data is valuable.  But it’s only as good as the input data in order to accurately be used.  There needs to be buy-in from multiple levels of people, organisation, jurisdiction, continent and countries.

NCIN (National Cancer Intelligence Network) – Cancer Outcomes Conference (Day 1)

Ray Murphy, Chair, National Cancer Partnership Forum, opened the conference and welcomed delegates in attendance.

Ray had a couple of questions that he posed in advance of the conference starting:

“If we are to equal the European rates, we need to save an additional 5,000 lives a year by 2014/2015” – I’ve heard that number before and I can’t help but quiet down the nagging voice in my head that lets me know that the number will be much greater than that – Europe are imrpoving their cancer survivorship numbers too and 5,000 will only equal their numbers today. We need to try much much harder!

“How far are we away from the best cancer (useful data) in the world?”

Chris Carrigan, Head, National Cancer Intelligence Network
The evolution of the Networkpresentation

Jem Rashbass, National Director for Registry Modernisation, National Cancer Intelligence Network
The vision for cancer data in England

Data should allow personalised and stratified medicine. What we’re discovering and confirming is that no one person’s disease is the same as the next. Recently there’s been the discussions about how many types of breast cancer there is, for example. This means the surgery and treatment thereof should be tailored according to the type of breast cancer AND the person diagnosed.

By providing a personalised care plan the patient is further empowered in their own decision making of their own health and life plan.

A great example of a patient portal is the Brain Trust

We should be able to “predict” services availalbe to patients and clinicians based on the statistics and indeed we’re starting to see trends for this purpose emerging.

Dr Mick Peake, Clinical Lead, National Cancer Intelligence Network
Using data to change clinical practicepresentation

Ciaran Devane, Chief Executive Macmillan Cancer Support
Is data really benefiting patients?presentation

Ciaran spoke of data (good data) being critical in commissioning.  Data can identify where all are diagnosed for the purposes of treatment, followup, survivorship and end of life care.

By collecting and managing this data we are able to call upon the commissioning at the right time and in the right location ie local for anyone diagnosed with cancer.

42% of deaths per annum have had a cancer incidence however we have to consider that the numbers of cancer patients WILL go up.  Not because there are more people diagnosed but because people are surviving cancer.  Therefore the need for more survivorship and end of life care is critical.

More is being written about survivorship than mortality however we need to ensure there is a shift in the care for patients (and carers) to be able to manage survivorship.

Breast Cancer Care have been able to utilise data to evidence the need for more resources surrounding secondary breast cancer patients.  Crucial changes to the care for breast cancer patients that comes from data being gathered, analysed and acted upon.  See Breast Cancer Care’s paper ‘Spotlight on secondary breast cancer‘.

Macmillan are trialling a tool which it is proposed will assist people diagnosed with cancer to choose the right treatment and care in a location that near them, or their family.  At the moment the tool is being trialled for colon and rectum cancer in England.


We then headed to parallel sessions chosen by each delegate from the following:

Early diagnosis, screening and prevention
Patient experience and reported outcomes
Cancer Audit

I attended: Patient experience and reported outcomes

The session was introduced by Dr David Cromwell, Senior Lecturer, London School of Hygiene and Tropical Medicine.

Robert Whistance, University of Bristol
Patient-reported outcomes (PROs) of colorectal cancer surgery: a systematic review of outcome measures – presentation

He spoke of the difficulties of patient reported outcomes and data in some areas, particularly with regard to obtaining the information when a patient has left hospital or for the followup appointments or indeed a patient’s perception of pain, for example.

The problems surrounding standardisation of trials, questions and information gathered.  However he was also able to evidence that although the earlier periods of classification and clarification can be trying, the results were critical to getting the care right.

He also pointed us to The Cochrane Collaboration, whose tag line is ”
Working together to provide the best evidence for health care”.  I would urge you to take some time to review the site and content.

Dr Anas El Turabi, Cambridge Centre for Health Services Research
Variations in satisfaction with involvement in decisions about cancer treatment: analysis of the National Cancer Patient Experience Survey 2010

Dr Anas spoke of the research that they had been conducting in to the variation of the patient experience resulting from the 2010 survey.  We know that there are several influences such as socioeconomic, ethnicity, age, sex etc however their task was to evaluate it further with a view to being able to draw out what is actually required to change in each area.

There will always be variables and therefore the task is to allow for the variables but to ensure that issues are not overlooked or perhaps addressed to heavily because of the variables but indeed that these variables are managed.

It was evident, more than any other aspect of the survey, that a “Shared decision is an important aspect of cancer care”.  Certainly I know from my own experience and conversations with others, that being part of a decision about ones own healthcare is empowering and healing.

Natalie Blencowe, University of Bristol
Which outcomes are important to patients and surgeons? Core disclosure prior to oesophageal cancer surgery – presentation

The team chose to look at the oesophageal cancer surgery which has the largest morbidity of all NHS surgeries.

What information and how much is good and right for cancer patients?

First there must be a ‘Core Disclosure Set’ established and added by patient belief, expectation or needs.  This Core Disclosure Set once developed would then be used in surgical consultations prior to oesophagectomy.

The methodology and iterations are best detailed in the presentation prepared by Natalie, however I think it’s very evident that the process is long and drawn out but as it should be in order to gain the best possible questions and answers, to be asked and answered in the best possible language and wording.  Each list of questions in any ‘surveys’ or questionnaires must be tested and revised many times by both the clinicians, patients and lay representatives.  Terminology is new to those entering a procedure but old to those who have practiced it for years!

Natalie also referred to the The COMET (Core Outcome Measures in Effectiveness Trials) Initiative (Web and twitter @COMETinitiative) which aims to set standards and agreed measures for this type of work.  If agreed standards and measures are implemented then the iterations of future work may be reduced.


Dr Mark Davies, Medical Director, NHS Information Centre introduced the first afternoon session

Using clinical information to improve services and outcomes

Professor Julietta Patnick CBE, Director, NHS Cancer Screening Programmes

Information to improve cancer screening services

Julietta’s presentation related to the screening programmes that were underway in the UK.  The importance of these programmes, the cost and the benefits.  She spoke of the difficulties in getting people to take up new programmes, particularly those such as bowel cancer screening… however she was also able to demonstrate that screening programmes do work and do pick up signs of cancer early.  They may ‘stand-alone’ as being an expensive option however evidence indicates that by picking up the early signs of illness, most cases are treatable and therefore more extensive surgery or treatment and long term care avoided.

Julietta also spoke of the ‘celebrity affect’ that sees peaks in screening being undertaken. An obvious one was regarding Jade Goody and the sudden increase in cervical cancer smear tests.  At these times the service is hard to manage due to the numbers of tests being required at short notice however many cases were identified at a time when they would have otherwise potentially have been missed with the patient not attending the regular screening.

We therefore concluded that more emphasis was required to urge people eligible for screening, whether it be cervical, bowel, breast or prostate to attend clinic and keep the appointments made for them.

Di Riley, Associate Director, Clinical Outcomes Programme, National Cancer Intelligence Network

Information to improve clinical servicespresentation

This presentation was relating, more particularly, to the commissioning aspect of cancer care in the UK currently and also with reference to the changes that are taking place in the NHS structure.  Di, once again, demonstrated the need for data, it’s analysis and, of course, the imperative requirement for the data to be entered and managed in a good standardised format.

She also explained further the decisions that are made at a clinical level but also with regard to the cost and distribution of services, hospital beds and medication etc.  I guess we are often quick to say that drug A isn’t available or there wasn’t a hospital bed when it was needed or indeed we’re told the cost of something means that it’s too much for our care… but all these factors ARE considerations and hard decisions do need to be made by someone and the buck stops with them.  I can’t imagine the task in hand or the times when they must consider that perhaps they’ve got it wrong or allocated funding to a necessary place when they also know it’s needed elsewhere.  But that’s reality.   It think this presentation really showed other considerations that aren’t usually discussed in the public domain but perhaps should be.

Di also showed us through some of the pages of the Cancer Commissioning Toolkit which is online and available to health professionals, allied healthcare and of course commissioners.  It was fascinating to see the depth to which the system goes and how it can be utilised to assist with ‘best’ decision making at a local level.  The presentation shows many pages and search profiles to give you an idea of the system if you’re unable to create an account.

Like most of the discussions today, this highlighted once again the importance of good, clean data, accurate inputting and standardised information.  Sharing information and accessing information and data for joint decision making.


The afternoon’s parallel sessions where again each delegate from the following:

Access to medicines
Less Common Cancers
Information for the public
Supporting commissioning

No surprise here, I attended: Less Common Cancers

The session was introduced by Baroness Morgan of Drefelin, Honorary President, Cancer52 and Chief Executive, Breast Cancer Campaign

The focus of the introduction was really expanding what we already know that although each individual ‘rare’ cancer may well be small in numbers, unfortunately together they make up over 52% of the deaths from cancer in the UK each year.  It is terrifically difficult to research or support each of of the individual rare cancers but together we can ensure there is a voice, advocacy and pathway to secure more funding and projects.

We also know that some of the ‘rare’ cancers may switch places on the ‘league table’ of cancers with others that are currently reducing in numbers.  Always a positive mark for those that are being reduced in numbers but not necessarily for those that are increasing and not funded for research!

Matthew Francis, West Midlands Cancer Intelligence Unit
Patients with Soft Tissue Sarcomas of the Limbs: who treats them? – presentation

Matthew spoke about the reasons why specialist centres are required in the UK, why a specialism will assist patients in the future and indeed improve the care and quality of surgery.  It’s obvious really, if a team perform an operation repetitively they should only improve.  They should find  a new better way of doing things.  There should be less room for error.  However there is also the difficulties of specialist centres not being as accessible as a local or district hospital to consider.

Some brief statistics to demonstrate the rarity of soft tissue sarcomas as well as the variety in age and anatomical site were shown.  Around 2,800 diagnosis in England and approximately 1% of all malignancies diagnosed.  However over 100 different types of soft tissue sarcoma.

Matthew spoke of the absolutely critical importance of the Improving Outcomes Guidance (IOG) which includes a recommendation that ‘patients should undergo definitive resection of their sarcoma by a surgeon who is a member of a sarcoma MDT which treats 100 or more cases per annum’.

Perhaps selfishly, I considered my own Phyllodes case and those of my fellow English people diagnosed – rarely can any of us say that we have been referred to a specialist surgeon who is a member of a sarcoma MDT and who has treated 100 or more cases per annum!  If ever.

On the fifth page of Matthew’s presentation he identifies that there are only 5 centres in England that treat both bone and soft tissue sarcomas.  15 centres that treat soft tissue sarcomas and another 20 diagnostic centres around the country.  The purpose of these are to provide specialist help on sarcomas for GP’s generic information on sarcoma.

The second part of Matthew’s presentation “Where are patients with soft tissue sarcomas treated surgically?” he provided some statistics from the information/data available.

Matthew was able to demonstrate that there is a lack of accurate recorded data in a number of areas and stressed the importance of this information being included.

He showed us the validation and methodology in his referencing and analysis and then was able to show where treatments were in fact carried out.  Only 51% was carried out in specialist centres.  More shockingly were the figures that identified that there was no HES (Hospital Episode Statistic) record for patients diagnosed or indeed surgery recorded as relating!

There will be some instances where surgery isn’t an option (because of other health issues, at the request of the patient or because the outcome wouldn’t warrant the surgery) however the figures don’t seem to stack up.

There is still a great deal more analyses required to be done, together with encouragement by bodies such as NCIN, NCAT and NHS to ensure that data is input correctly, time efficiently and accessibly.  More information regarding staging of sarcomas should be included as should the discussions held at MDTs and more specifically sarcoma MDTs.

Admissions to specialist centres for surgical treatments are increasing but need to increase further. There’s still substantial amount of work to do for sarcoma and rare cancer reporting however having attended this conference last year and spoken with Matthew at each conference, I am confident that headway is being made, and we should thank them for this.  This evidence will aid the case for investment into rare cancers.

Tania Tillett, Royal United Hospital
Evaluation of a Cancer of Unknown Primary Service; the first two years – presentation

Cancer of Unknown Primary (CUP) is something that is rarely spoken about.. even more than rare cancers!  It was hard enough to be diagnosed with a rare cancer but to be told that you have a cancer but the medics don’t know where it started from or where the primary site is, must be even more frightening.  The question must arise so often – why don’t they know?

Tania is part of a service that has been going for the past two years and is utilising data to try to establish some evidence why CUP cases exist and indeed can be do something better with the data and records to assist with the identification of a cancer primary site.

Tania spoke of some of the difficulties in the project, not least that often by the time a CUP is reported it is because it is metastatic at the time of diagnosis and unfortunately higher in mortality levels.

Despite the lack of clarification or reporting, Tania was able to report that there have been improvements in the care  of CUP cases, that there are cases where specialists have been involved at a much earlier stage in the care and that there is far more optimism for CUP than previously.  There was however more than needs to be done with services, research and classification.

I came away from this presentation a little buoyed by her work and hopeful that Tania and her team will be able to assist more people diagnosed with CUP.

Lucy Elliss-Brookes, ASWCS Cancer Network
Routes to diagnosis for less common cancers

Lucy spoke about some collaborative work to set up standards and specific routes for diagnostic tools.  She identified again the need for better more conclusive data.  She also spoke of shared data and working WITH other health professionals and bands to ensure that a cohesive reporting structure can be found together with standards for asking, receiving and inputting data.

NCIN Cancer Outcomes Conference 2012

I am privileged enough to be invited back to this year’s NCIN Cancer Outcome Conference in Birmingham over the next few days.  I attend in the capacity of patient advocate involved in the many groups, boards and committees as well as moderator for our Phyllodes Support Group.  As always, my aim is to learn as much as I can about different aspects and to report back to the many others who are interested in learning more.

NCIN by way of reference is the National Cancer Intelligence Network and “is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.”

In short, they are joining together different data collation systems, ie hospital records, GP records, chemotherapy records etc.  Doing some work with the data input sites (ie hospitals and clinicians etc) to ensure the data is good, clean and accurate.  Then analysing the data many many ways.

This analysis will lead us to identify trends in cancer, perhaps geographically, perhaps by age or even occupation!  We will also be able to determine if there is a bottleneck in good outcomes, perhaps at the GP level or perhaps lack of information and awareness about symptoms.  We can see see where surges in screening have taken place and then work out why – such as the Jade Goody effect for cervical cancer screening.  The data will also be able to identify if there is a better patient outcome if treatments such as chemo/radiotherapy are given for different cancers and at different times.  The data could perhaps also tell us if the quality of life and survival is acceptable IF prolonged with additional treatments.

I know the next few days will be inspiring, rewarding and enlightening but I also know that I have two days of data and information coming straight at me.  Don’t bother asking me my name by Friday night!