NCIN Conference 2014 (Day 1)

The NCIN (National Cancer Intelligence Network) 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.

When I was first aware of the NCIN, their goal was “To develop the best cancer information service of any large country in the world – by 2012”.

Because of the work they continue to do, UK clinicians, medics, researchers, NHS purse holders, pharma, charities and, of course, patients are now able to draw on an incredible amount of useful data-sets.  This data enables measures to improve outcomes, drug development, research projects, awareness and own patient care.

This year I was honoured to be invited again to attend the NCIN Conference with a bursary place and below is a summary from my notes at the Conference.  Wherever available I have added links to presentations.

Cancer Outcomes Conference 2014 – the power of information
Sponsored by Cancer Research UK and Macmillan

Chris Carrigan
Director of NCIN Public Health England (PHE) 

Chris opened the conference and welcomed those attending.  This year’s conference attendance is larger than ever before with over 570 people attending.  With national and international spread from primary to end of life, charities and patients.

Chris (@C_Carrigan) wrote a blog at the start of the conference on twitter on how bringing people together can improve cancer outcomes – read here

Harnessing the power of information to deliver quality and innovation in cancer surveillance, services and outcomes

Chair: Prof Brian Ferguson
Knowledge Transfer and Innovation Director at PHE
“Innovation at the heart of Public Health England.

Kris Hallenga
Coppafeel! @krispop @coppafeelpeople
Ensuring everyone stands the best chance of surviving breast cancer

Kris#NCIN2014, Let’s talk boobs

Kris ‘story’ is well documented not least on an incredible documentary that has just been shown on TV “Dying to Live“.

Kris was 22 when she noticed lump.  She ignored for a long time. Eventually went to GP and told more likely to be hormonal.  Went travelling and noticed the lump was getting bigger. Returned to GP. Told nothing. Mum got involved. Returned to GP. 8 months after first going to GP was referred and told breast cancer and spread to spine.

1 in 15,000 chance of getting breast cancer under 25.

“You beat the odds in getting the disease and can beat the odds to get rid of cancer.”

2 months into treatment Kris researched why she didn’t know more about cancer at a younger age and what to expect.

She knew she couldn’t change her diagnosis but she could make it better.  Or as Kris said “You can’t polish a turd… but you can roll it in glitter…”

She kept hearing “Early detection is the best form of defence.”  Why wasn’t there breast cancer awareness in schools, universities, 6th form colleges?  Surely that’d lead to earlier detection.

So Kris thought about where she could reach these young people.   Armed with CoppaFeel! stickers set off to a festival.  Whilst facepainting with her twin sister people started approaching and talking about boobs.  Talking about breast cancer.  Talking about checking yourself.

CoppaFeel! are now a regular set up at music festivals, university campus and many other locations filled with younger people.

As well as Kris and her sister talking about boobs, there are now the Boobettes – young women who’ve been diagnosed with Breast Cancer.  They go into and talk at schools and events about their experiences and awareness and early diagnosis.

Kris has asked “What does BC mean to young people?” and got these answers (amongst others) – life-stopping, turmoil, depressing, threatening, damaging… not good and words that put you off from checking your boobs.
It is a very treatable disease if diagnosed early.

1 in 3 are diagnosed with cancer.  Early diagnosis is key.  #rethinkcancer is a campaign to bring cancer education into schools, colleges and universities.  “I know it will help and I know they want to know it… I’ve spent the last 5 years speaking with them.”

Put an end to late diagnosis of cancer.

Kris Rethink Cancer

The stats of tomorrow are the young people of today… it can happen to young people. It should go through the mind or every GP and medical professional out there.

“If you have influence please use it. If you have colleagues please pass the message on. If you have boobs, please check them.

Think boobs.”


Prof John Newton
Chief Knowledge Officer, PHE
Cancer – A public health perspective


So many things to learn from what Kris was saying. Behind every statistic and data is a real person like Kris. This should be a reminder.

4 things we need to do:

  • Prevention
  • Diagnosing cancer early
  • Make sure very patient gets the best treatment
  • Care of people who are living with cancer, whatever the outcome

Struck by Cancer Research UK stats that 40% of cancers are preventable. There is a huge challenge but we as a population need to address it.

Good news is that we have the best treatment services and charities in the UK. We have some of the best intelligence systems in the world. The best Cancer Registry.

No doubt that cancer intelligence NCIN has played it’s part in improvements. More that we could do with the data to improve outcomes and prevent cancers.

How do we build NCIN in Public Health England to get even better outcomes?

Mission – “To protect and improve the nations health and to address inequalities working with national and local government, the NHS, industry, academia, the public and the voluntary and community sector”

Broken down into manageable chunks – outcome focused.

  • Helping people to live longer and more healthy lives by reducing preventable deaths and the burden of ill health associated with smoking, obesity etc
  • Reducing the burden of disease and disability in life by focusing on preventing and recovery.
  • Protecting the country from infectious diseases and environmental hazards
  • Supporting families
  • Health in the workplace
  • Promoting development of place based public health systems
  • Developing our own capacity and capability to provide professional scientific and delivery expertise

PHE’s jewels in the crown:

  • National Screening Programme
  • National Cancer Registration Service
  • National Cancer Intelligence Network.

PHE inherited some strong partnerships with many including:
National Cancer Peer Review and National Cancer Research Institute.

PHE have a significant local presence:

  • 4 regions, 15 centres
  • 8 cancer registration teams
  • Central coordination and analytical team
  • 8 knowledge and intelligence teams around the country

Track record of delivery is increasing….

  • National Cancer Registration Service
  • Completed the national migration
  • Data going out trusts
  • Published staging data
  • Cancer analysis system implemented
  • Prostate cancer data network

Our public health perspective:

  • Be clear on cancer campaign evaluations have been carried out for lung, blood in pee, breast cancer in over 70s, ovarian, oesophago-gastric, lung reminder and local skin cancer pilot.
  • Analytical work by the central and knowledge and intelligence teams
    • 16 data briefings, 23 in depth reports, 9 press releases
      17 journal articles, profiles, toolkits, routes to diagnosis, workshops for clinicans…
  • New office for data release is established and now operational
  • Reports analytics from the page impressions on our websites show an increase both nationally and internationally.

Collaborative work:

  • Deprivation report with CRUK
  • Routes from Diagnosis with Macmillan
  • Less common cancers – Cancer 52

The patient portal:

  • NCRS and NCIN
  • Brians Trust
  • Cancer Research UK

Summary/Future Look

  • Cancer remains as a significant public health issue
  • Many national cancer bodies inside PHE brings definite synergies, some of which we are now seeing, but there is much more to do… we want your help with it.
  • Growing demands for our intelligence capacity
  • NCIN will grow and flourish as a partnership and as part of PHE’s integrated cancer programme.

Increasing value to assets whilst data, partnerships and resources continue to flourish and grow.  We need to work together to ensure that this data and these collaborations continue to demonstrate improvement for cancer outcomes.


Sean Duffy
National Clinical Director for Cancer – NHS England
Progress on the delivery of optimal care for cancer patients in the new NHS


Optimal cancer care in the new NHS – an absolute commitment to deliver services for better outcomes.

The survival challenge

  • Mortality improvements v survival gap
    • Although we’ve made gains in the survival in the UK. Other countries have also had improvements.  We need not to equal the other countries improvements but to ensure our improvements are greater.
    • Eurocare 5 (2013 analysis of 2007 data)
  • Stage at presentation and earlier diagnosis.
    • We need a cultural and system shift to lead a stage shift.
    • Primary care interface – % flows
      • GP direct access to tests. Does it make a difference. On average access to test should make a difference for 6% cases. BUT hides 15-20% for cases such as stomach, ovarian, pancreas, renal, brain.
    • Route to diagnoss, England 2006-2008
      • All cancers emergency presentations 24%

Ownership of treatment decision
We should ask every MDT in every hospital to look at least once a year at the decisions it has made (treatments) and what it has meant for its patients (outcomes).  By revisiting these decisions they may be able to see improvements or identify changes that need to be made.

National datasets for cancer should enable the work – chemo, radiotherapy and outcomes data
National audits need to be used more.
Transparency is essential

12 senate geographies for the cancer map. If they took a grip of their own survival curves then we could be in a better position.
Plea – Own your 1 year survival and work collaboratively together.

Selection bias

  • Age and outcomes
    • 34% of 80-84 and 43% of 85+ are diagnosed via emergency route compared to 25% of 70-79 year olds.
  • Age and treatment
    • Access to treatment of the older population is variable. There is an age bias that exists and the data sets demonstrate this. Not just for surgery but also chemo, radio and access to a cancer nurse specialist.
    • Perhaps there could be a co-morbitity and late stage diagnosis but not completely responsible for decline in survival in older patients.
    • Older patients get less chemotherapy delivery for colorectal patients.


  • Key factors that influence greatest impact is access
  • The question of volume and outcomes
  • Community of care, not individual or isolated providers
  • Redefine the model – ideal structure within given senate geographers based on IOG principles and evidence.

What is best and where?


  • Gap in survival to tackle together.
  • Effective plan for early diagnosis to ensure the front end of our health care system delivers what you need it to.
  • Local MDT and senate geography focus on outcomes as a result of treatment decisions is vital to improve survival.
  • There is an inherent age bias that if tackled could yield significant survival benefits.
  • The evidence for volume linked to survival outcome cannot be ignored.


Q (Kathy – London Cancer Alliance) – What has happened with the key recommendation in 1995 re early diagnosis?  Ambition was to go much further than they did at the time. The data at that time wasn’t as robust as at the moment. We have to be driven by the evidence. Any change moving forward has to be with improvements.
A (Michael CR_UK) – Are you talking to your colleagues in Scotland Wales and N Ireland about how to tackle the problems as a UK wide problem?
We are an English organisation but we are doing as much as we can with the UK. Spoke last week with the Welsh Health Minister (who are producing a white paper which is very interesting). Certainly on research we are very keen to work across the UK. Every reason and possibility of working across the UK not just England.
Julia Vern NCIN public health lead – UK and Ireland Association of Cancer Registries – absolutely a priority for all of us.

Q (Bob – Former NHS professional and lay rep) – Where is recent data?
A – Pointing you to the right person for the data question.

Q (Ian – Patient) – Emphasis is always on the clinicians rather than the patients. If there was more of a focus on the patient not the clinicians then I think you would see more survival times. Supporting stop smoking, diet etc particularly those of the poorer socioeconomic groups.
A – I think you’re right. Workstreams should be looking at exercise and other actions as a joint initiative between NHS England and Public Health England.
Approach moves away from a health service that provides testament for someone who is ill, rather than helping patients help themselves before they become a patient… it needs collaboration with charities, education and health care systems.

Q (Ms Clifton – Clic Sergeant) – Early/late diagnosis. GP dismissal of patients. Is any research done on looking at the reasons for late diagnosis or sending for tests in primary care?
A – How long have we got? There is a lot of research and simple things that primary care have developed to be more proactive. Got plenty to base a plan and are working on it. Key for me is that this is about public and primary care behaviour. The new changes should enable us to have more conversations and changes in this area.
Kris – We ran a focus group with some GPs. Reduction of the younger patients and also looked at the flip side of empowering patients about what you expect from a GP visit. Makes a huge difference.

Q – (Sara Hyams CR_UK) – Pick up on the age issue. How do we get more on the agenda for early diagnosis of the younger patients? i.e. under 30. How can we also improve things at the other end of the scale too?

Q – CCG – when would staging data be available to CCG levels?
A – Staging data has already been published. By CCG I understand it’s going to be June. NCIN is publishing it later this month.

Q – Health intelligence officer – I’ve got a 23 year old daughter. All this activity around data and intelligence isn’t worth anything unless it is used for the benefit of the patients.


Plenary 1 – Outcomes for young people with cancer: matching commissioning guidance with the evidence

Martin McCabe
Chair of NCIN Young Patient Oncologist

NICE guidance on improving outcomes for young people and children with cancer.  (“CYP” children & young people)

  • Care co-ordinated as close to home as possible
  • Networks should meet the needs of CYP with cancer
  • MDT should provide cancer acre
  • Each CYP with cancer should have a key worker
  • Care appropriate to CYPs age and type of cancer
  • CYP with cancer should be offered the chance to take part in research trials
  • Treatment should be based on agreed protocols
  • Sufficient specialist staff
  • A register of all cancers in people aged 15-24

National Registry of Childhood Tumours
Established in England, Soctland and Wales in 1962

Childhood cancer isn’t well fit with ICCD coding so they have their own code. Birch coding.

TYA cancer
Teenage and Adult with Cancer TYAC founded in 2004.

In children cancer is always rare. Rare because it’s found in a child or because it is rare anyway.

Looking at survival AND important is quality of survival for children and young people.

Treated at a Principle Treatment Centre… but what happens when they’re referred out of the PTC?

One of the main advancements in childhood cancers is the enrollment of children into clinical trials. New paper from NCRI to be published very shortly which demonstrates this.


Kathy Pritchard-Jones
UCL London Cancer
Paediatric clinical outcomes research – UK policy and the role of the European Network of Cancer Research in Children and Adolescents – early diagnosis

Talking about the European agenda for paediatric cancer clinical outcomes research.
ENCCA European network for cancer research in children and adolescents 2011-15
SIOP European standard of care for children with cancer
ExPO-r-NET European Expert Paed Oncology Research Network for Diagnostics and Treatment

Outcomes research

  • Outcomes seeks to provide evidence bout which intervention work best
  • Study of the end results of health services to take account opatients experience and costs to society
  • Provide scientific evidence

NHS Outcomes of framework

  • What can we really measure that is important to patients?

ENCCA – in 4th year of operation

  • Building a strategy to enable biology driven clinical and pre-clinical research. Tissue sampling, biobanking and sharing tissue across boundaries, training for clinicians, researchers and scientist. Long term sustainability of encca is bringing together national paed and cross cutting research groups to take it forward.

Why has overall mortality for children with neuroblastoma in the UK worsened?  Is it because there’s no trial currently open?

Infants with cancer have the highest rate of early mortality. Can we improve their model of care?

Equal access across Europe. Appointed by DG-SANCO to pilot how cross-border research can be done correctly?

Collaboration, defining entities, regulatory, embedding teaching and research.

Tony Moran
Public Health England
Survival trends for young patients in the UK – the good and the bad diagnosis

Lower survival in UK than several other countries
Rate of improvement slower in TYA than other age groups?

[Once the presentation is available, I’ll upload it here]

Kathryn O’Hara
The Christie NHS Foundation Trust
Referral to and from specialist Centres- how widespread is the practice?


Normal for 0-14 year olds to be under the principle treatment centres classified by extent of shared care. It’s not consistent in all areas.


Plenary 2 – Living with and beyond cancer
Heather Monteverde
GM of Northern Ireland with Macmillan Cancer


Considering living with and beyond cancer is a newly adopted consideration… relatively. So many changes within cancer with chemo, radiotherapy, surgery etc.

Consequences of treatment or late affects have a huge impact on the quality of life of people living with and beyond a cancer diagnosis. This also needs to be addressed. The physical as well as the emotional and psychosocial issues.

Raoul Reulen
Uni of Birmingham
Teenage and Young Adult Cancer Survival study

Approx 225,000 5-yr survivors
Population based cohort
Diagnosed 1971-2006
Age 15-39
Covers England and Wales

Study link


Matthew Francis
Public Health England, Knowledge and Intelligence Team, West Midlands
Method of identifying stage IV cancer

Presentation – please refer for charts and graphs.

Matthew spoke about the differences in staging sarcoma compared to other cancers.  The usual methods of staging include tumour size, nodal involvement and if there are any distant metastases identified.

With reference to sarcoma patients only 2% of those diagnosed with stage IV actually comply with these staging rules.  This makes it increasingly difficult to make comparisons and potentially contribute to a less favourable outcome.

In addition the rarity of sarcoma:
450 bone sarcomas new diagnosis
2,800 soft tissue sarcoma new diagnosis
less than 1% of malignancy
occur in different anatomical locations.

Detailed staging data is not available for patients with sarcoma.

Metastases site recording in HES can be the only identifier but this information isn’t always recorded.

4,602 new cases of bone sarcoma
20% of had metastases at diagnosis
27,913 soft tissue sarcoma between 2000-2010
3,602 13% had metastases

Soft tissue sarcoma – some sites have space for growth i.e. abdominal or breast where the tumours have space to grow and therefore not diagnosed as quickly i.e. may be identified at diagnosis with metastases.

Staging data for sarcoma is incomplete.
Those with metastases have significantly poorer outcomes.
The methodology used to identify stage IV sarcoma patients could be applied to other cancer data sites and assist the National Cancer Registration Service.

Chris Brown
National Cancer Registry Ireland
Using routine prescribing data to identify comorbidities in ovarian cancer patients


Please refer to the slides and data of the presentation.


Plenary 2 – “Show me the data!” – information and intelligence for your ovarian cancer service

Chair: Annwen Jones
Target Ovarian Cancer


Ovarian cancer outcomes could be improved. NCIN has provided hard evidence that outcomes can improve and also provided data and insights to shape policy and practice.
7,000 cases diagnosed each year
3/4 of cases aged 55 years and over
4th most common cause of death from cancer in women
4,300 women die each year
Late diagnosis is a major issue

Before 2007 (i.e. before NCIN) we had very little and incomplete data that was also unreliable.

32% of women diagnosed with ovarian cancer via admission to A&E v 24% of all cancers
15% of women die within two months of diagnosis.

Pathfinder Study – Target Ovarian Cancer – 2009, 2012, 2015… ongoing study.
Looks at patient delay, GP delay and system delay.

[Key findings published to date click here]

International benchmarking partnership (ICBP):
1 yr survival for ovarian cancer in England lags behind comparable countries
5 year survival difference results from 1 year difference. In England we do quite well at this point.

Data shows that there are wide regional differences in survival.

What is the underlying cause of variation and what more can we do to improve survival for all women with ovarian cancer? What does the data intelligence that we currently have tell us? What further data do we need?

Put patients at the heart… policymakers, patient organisations, commissioners and clinicians around patients.  The patient must be central.

Screen Shot 2014-08-18 at 13.14.34

The value of data to patient organisations:
Policy – impossible to influence policy without robust data.
Charity – we have to make sure that we’re spending the donations wisely. Data helps make decisions and priorities as a charity.
Patient choice – patients with a voice.  Personal note – it was wonderful to see the faces of patients on Annwen’s slide particularly that of my gorgeous smiling friend, Tish, who I miss so very much.  Tish was such a wonderful patient advocate for Target and others diagnosed with ovarian cancer.

Dr Andy Nordin
Chair NCIN Gynaecological Cancer site specific clinical reference group
Ovarian caner in the UK: the emerging picture

ICBP – opportunity to compare outcomes with other high quality data countries such as Australia, Cancer, Denmark, Norway, Sweden 1996-2007

Gynae cancer hub with NCIN run through of projects carried out.

Results are improving in younger women but data identified that it hasn’t improved in the older patients. NCIN were then able to look at this area too.

Routes to Diagnosis in November 2010 we all know was that a great many people present as emergency presentation… ovarian is one that indicates this highly.

Short term ovarian case mortality:

  • why the elderly
  • late presentation
  • reluctance for referral
  • performance status
  • patient preference
  • access to specialist surgery
  • access to chemo
  • national variation

There needs to be more specialisation at a surgical level.  To look at the number of consultants by caseload and acknowledge that they should be doing more than 15 cases per year.  This surgery should NOT be undertaken by general surgeons but by specialist surgeons in specialist centres.

More use should be made of the cancer e-atlas

Jason Poole
Associate Director, Public Health England
Short term ovarian cancer mortality in and across England

Early results 2006-2009:
5288 women 31% died in the first year
2,592 died in first 2 months

3 contributory factors:
emergency presentation
advanced age
non-specific tumour morphology

case-mix analyses

  • women 2008-2010 resident in England, ages 15-99
  • data from national cancer data repository
  • HES inpatent and outpaitient
  • Ovarian cancer including fallopian tube and primary peritoneal cancers
  • Excl borderline tumours, sarcoma, germ cell tumours
  • 15,000 women in analysis

Patient outcome – excess mortality ie over and above ‘normal’ population mortality
3 periods of analysis – diagnosis to 1m, 1mto 6m; 6-12m

case mix factors

  • age groups
  • deprivation quintile
  • comorbidity
  • route to diagnosis
  • stage
  • morphology
  • treatment
  • basis of diagnosis

Dr Rob Gornall
Clinical Director Cancer Services
The challenge of improving cancer services by commissioning pathways – the increasing value of data


Rob’s presentation reiterated a great many of the points earlier regarding early diagnosis, variation in primary and secondary care services, complex commissioning pathways, patient behaviour and perception of risk.

Please refer to the presentation for more data on the above but please note there are graphic photographs.

Louise Bayne
CEO Ovacome
Robust data – the value to patients and patient organisations of the NCIN

Why is the NCIN data required and quality of it so important?:

  • demographically representative
  • statistically significant sample size
  • non biased enquiry motive
  • highly skilled practitioners
  • published in full

Without NCIN data, charities need to look inwards for data sources and information. That has intrinsic problems about it.  Attract a sub-set of the cancer community who are not representative. Might be questionable motives as to why a charity has come up with a news story or report.

Why does this matter?

Data is used for:

  • NICE decisions on access of treatments.
  • shaping research proposals
  • commissioning
  • advocacy programs
  • patient information
  • individual treatment choice

Without excellent data patient organisation activities risk being characterised as:

  • opinion drive
  • biased
  • questionable motives

Leading to:

  • wasted resources
  • lobby fatigue
  • harm to misrepresented clinical sectors
  • poorer outcomes for community

Making the data count

  • Quality profiles – annual report using NCIN/DH data to provide a local picture of service/standards
  • Available on the Ovacome website
  • Parliamentary outreach day with Ovacome members lobbying their MPs
  • Circumvents clinical gagging clauses
  • Puts clinicians in the driving seat – we don’t say what’s to happen – clinical empowered to suggest improvements
  • Last year resulted in Secretary of State intervention, improvements to the data collection, the recruitment of clinical staff and improvements in clinical service (in one centre the development of a GP helpline)

The drive to improve diagnosis:

  • the majority of women have advanced stage disease at diagnosis
  • received wisdom – ovarian cancer is a silent killler – only symptomatic at advanced stage

But the studies said differently….

Using data for improving diagnosis:
BEAT campaign Bloating Eating Abdominal Talking.

Survivors teaching students

Commissioning – why NCIN is now essential
Commissioning challenges us to consider business as usual or optimal practice
To drive improvement trustworthy data is essential
However gaps in data remain a challenge


PPI Group – Imperial/Cancer Research – Meeting

A fascinating meeting this evening of the Patient and Public Involvement Group from Imperial College and Cancer Research.

We meet regularly however often we discuss aspects that I’m unable to share with you so I don’t post a blog entry about every meeting.  However some of the tweets/facebook posts about upcoming events or opinion may be posted from Living Beyond Diagnosis accounts.

Tonight’s meeting was slightly different to our usual discussions.  In that many of the agenda items related to artistic and creative projects that it is hoped will support, aid and influence both patients and the public.

I am unable to go into the finer detail but wanted to share a little about the items and ask for your feedback.

Artwork in hospitals and cancer clinics.  An artist has been commissioned to produce some artwork for display in a very busy hospital cancer clinic.  Tonight he was able to share with us a few of his ideas of what he would like to produce and also to hear our feedback and comments on the proposed work.  His medium is ceramics and his aim is for the artwork to be uplifting for patients, intriguing and engaging for those who may visit the clinic often and perhaps to also be further dimensional to include some more medical references and in particular research and cells.

No mean feat ahead of this chap.

What a wonderful project… for him to create and of course for others to enjoy.

The discussions this evening were varied.  Some were very much for it being engaging and uplifting.  Some felt that if it had medical references to research and cells it may be too much in this clinic but others thought it may bring about discussion and hope.  We discussed where it should be placed.. or perhaps could it transcend both the reception desk and surrounding walls?  Perhaps to include some clever lighting?  There are many considerations and much planning to also ensure that no matter where you sit or walk within the clinic you can enjoy the artwork.

What would be your considerations?

Video Project.  We were presented with a video project that has been taking place over the past 6 months.  Video cameras were given to 9 women who had been diagnosed with breast cancer (some with secondary breast cancer).  Each women was asked simply to record whatever they liked.  Some did a ‘talking heads’ approach of short interviews to camera; others were determined to show their families and life living WITH cancer; most of them showed bad times as well as the good; living with side effects; what the treatment and drug regime was like; and so much more.

The videos have been sensitively edited (with each of the women involved) and the task of how best to use the honest and open footage to educate the public and also support and inform others diagnosed.

The aim is that it will become part of an art installation where each video is played continuously on 9 walls of a gallery.  Thereby giving the ‘viewer’ the opportunity to watch all or part of each journey.

It is also hoped to edit the footage (approximately 2hrs for each lady) down to a documentary length and to be able to get it onto the TV.

We also discussed the possibility of some of it being used for the training of people working with cancer patients.  Medical professionals but also HR/employers.  Perhaps in a similar way to the GP Training film that I was involved in that is now part of the London Deanery GP training.

Where else do you think this could be used?

I suggested that in addition to the current footage perhaps another video project might be looking at the 360* surrounding the diagnosed.  For example taking a point in time of the diagnosis (perhaps being told of cancer, the start of treatment, surgery dates etc) and asking the diagnosed to tell what that moment was like as well as their colleague, husband/wife, child, parent, neighbour, friend etc etc.  To demonstrate that cancer affects much more than the individual and allowing others to understand.

Portrait Project.  A fascinating project created and considered by a lady herself diagnosed with secondary breast cancer and recently told that she is now in palliative stages.  Her background is in visual media and she would like to share her journey through photographs.  HOWEVER not of herself but highlighting the wonderful team of medical professionals that have been part of her journey, have been keeping her alive and indeed for whom she is truly grateful.  She would like to say thank you and for others to know that a cancer patient’s journey is filled with teams of professionals who work together for the best outcome.

She has put together a team of photographers, videographers, editors and other talented people who will be responsible for capturing each and everyone who’s been involved in ‘keeping her alive’.  From the nurses, breast consultant, sarcoma consultant, oncologist, heart specialist, plastic surgeon, wig fitter, receptionist, cleaner, anesthetist etc etc.  They are asked (and with her guidance) that each portrait will show the person behind the white coat as well as acknowledge the work they have done.

It is aimed that this portrait project will be finished and on display in SW London in September of this year.

Tissue Collection.  At this point, I can’t tell you everything about this agenda item.  However I would like your opinion please.

A great deal of cancer research is carried out on tissue samples taken from patients via a biopsy or surgical excision.  Sadly not everyone knows how to donate tissue to research projects and, historically, consultants are concerned about having discussions about research with patients so this may be overlooked.

My question to you is at what point and with whom do you think you should have a discussion about tissue collection for research purposes?  Was it discussed with you?  How did you feel about it?

Are you aware that cancer cells change during a cancer ‘journey’ and particularly if it spreads to other parts of the body.  There is therefore huge value in tissue samples being examined from each part of the body affected and indeed researchers feel that this information will help guide to the best outcome for individual treatment.

Another taboo that needs to also be overcome (in my opinion) is that of tissue donation after death.  Researchers again have huge value in looking at the tissue of a deceased patient.  If they are able to compare the tissue with that taken from a primary tumour and again any secondary tumours, they believe this may also aid them in understanding cancer development and further treatments.

Would you give your specific consent to tissue sample being taken after you death?  When and how do you think it should be discussed?

Breast Cancer Lecture Series.  There next in the series – “The Secondary Breast Clinical Nurse Specialist: her role in breast cancer patient care.  6-7pm 15th July at Maggie’s Centre, Charing Cross Hospital.

These lectures are in an informal setting and after the talk you are invited, and encouraged, to ask questions of the speaker.  Please do pass on the invitation to others.  If you’re interested in attending please email Kelly Gleason as places are limited to approximately 20 people.

I’d love to hear from you about any of the points above.

Haven – Fulham

This afternoon I was invited to an event at the Haven in Fulham.


During my journey I never contacted the Haven as I believed it was solely for people affected by breast cancer.  I understand it was once, but not anymore, not totally.  Great news for people affected by cancer to have another resource nearby to help them through and beyond a diagnosis.

The Haven is located just behind Harwood Road in Fulham, a few minutes walk from Fulham Broadway tube.  Housed in converted church which from the first moment of entry, feels comfortable and calm.  3423994_c6b1af15The interior of the ground floor hosts a reception area, a seated area and then on a slightly higher platform another seated area with plenty of sofas, a small kitchen on one side for people to get a warm cup of tea and the other side plenty of information leaflets, computers and books.  I understand that there are four floors in total in which there are a great number of consultation rooms, treatment rooms, a large group room and another for exercises.

The kitchen serves great delicious and healthy food at lunches on Monday to Wednesdays.  There are nutritionists available to offer advice and whom also run courses and phone consultations to those who want advice.

I was pleased to hear this evening that they are now open late on a Wednesday evening for people to drop into the Centre.  Whilst I understand that it’s hard to staff cancer Centres in the evening and weekends, I feel it’s imperative that more centres are available to those who are working or perhaps have children that means they’re unable to get away during the working day.

I was also pleased to hear the services are now being offered to people diagnosed with other cancers, other than breast cancer.

If you would like support or information, do have a look at the services offered at the Haven.

They also have centres in Hereford and Leeds with another one opening in Wessex.

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!

Macmillan Voices Conference

As a patient advocate I often get asked to attend conferences and meetings.  Part of my role as a patient advocate is to share my learnings both as a patient and subsequent to treatment.  The piece that is invaluable to organisations is that patients can work independently of any charity or company mandate.  By this I mean we are able to speak our minds and say what we think or what we have learnt without needing to be loyal to the green of Macmillan or Pink of Breast Cancer or Yellow of Sarcoma.

Macmillan Voices are a scheme set up for patients and carers to have a ‘voice’ within Macmillan and help shape future services by their involvement.  It is often by way of focus groups on particular subjects (I’ve done many of these for them) or by completing surveys or reviewing leaflets and documents before publication.  The Macmillan Voices Conference is an annual event where the Voices get the chance to get together.  Throughout the 2-day conference there are workshops and networking groups.

There is clearly a great deal of investment from Macmillan in the Conference and I truly hope that the work we, the Voices, are doing during the Conference is used effectively.  I’m acutely aware that this is funded by people’s hard earned money donated via some fundraising event.

IMG_6647Our Conference Newspaper/Programme

IMG_6654We are welcomed to the Conference during the opening plenary by Juliet Bouverie, Director of Corporate Development at Macmillan.

Juliet introduces herself (she’s new to the role) and tells us a little about why she’s passionate about her role in Macmillan.  She also talks a great deal about the fundraising at Macmillan, some of the events that have happened and how grateful they are for all the monies raised. (Sadly to me, this came across as another plea for money and since we’ve all given up our time to be here and are Cancer Voices doing many things for Macmillan it feels insulting to ask for more!).

Juliet then gave us some facts and figures about fundraising, numbers raised, spent and people living with cancer.

This last year £137m has been raised of which £97m was spent on cancer support.

In 2030 Macmillan believe that the numbers living with cancer will be double that of today.  Currently 2m people living with cancer.  In 2030 they estimate 4m people living with cancer.

There is an urgency not only for a cure for cancer but to ensure there is support and assistance for those living with and beyond a diagnosis of cancer.  Often the emotional and psychological aspects are overlooked in favour of the physical.  All three aspects need addressing and supporting.

Juliet also spoke briefly about a Macmillan project to run training courses for all Boots pharmacists.  Clearly they have a corporate deal with Boots but I’d like these courses to be offered to all pharmacists no matter which company they’re employed by.  Personally I rarely see the pharmacist in a large Boots chemist but am more likely to chat to the pharmacist in a small chemist and aware that they often have more time for me too!


Networking Group

Within our first Networking group we heard a story from another Voice about her experience of surviving cancer.  This led to a group discussion about survivorship and where people had found support and information.  We discussed the survivorsforsurvivors website, the Cancer Survivor’s Companion book, support groups within Facebook and Twitter and of course charity-led online forums.  As also discussed how to ensure that any late effects from cancer treatment, particularly from childhood cancer treatment, was also supported.

I think it’s so important that doors are left ajar for people who have gone through a cancer diagnosis at any age.  Many people ‘just get on with’ cancer and then are left floundering some months/years later when they think about what they’ve experienced.  Or that side affects take very different forms and are at very different times in ones life but still need addressing and supporting when they manifest themselves.  There shouldn’t be a time limit on getting support.

After lunch we headed off to our Workshop One sessions.  I had chosen ‘Treatment Summary’.

IMG_6651Treatment Summaries are a fascinating beast and once that has had much airtime of late.  Essentially ‘Treatment Summary’ or ‘Patient Passports’ are a brief medical history of a patient’s journey with cancer.  They are much like the ‘red book’ that parents were given when I was born and that documented all vaccinations, Dr visits etc until I was 16.  Every parent managed to keep these books safe and take them with them on every medical visit their child made.

What the Treatment Summary/Patient Passport is aiming to do is to keep a full record of the medical journey in one place.  As a patient I am all too familiar with having to constantly ‘remind’ or tell my history with cancer, every date and every detail.  The problem with this is that I may forget some detail or having not understood the medical importance of a piece of information, have missed it out.  This then leads to problems.  For the old/infirm or (err) unwell this is even harder to manage.  Particularly if they have different family members or carers present at different consultations.

Macmillan have devised the Treatment Summary template


All very valuable information and is a great idea.

The barriers to this would simply be asking the medical team who are already stretched, to complete yet another form, ask them more questions and then to organise a method to send these treatment summaries to the GP (in addition to any usual paperwork).

Another barrier may be that each Trust/Hospital/Clinician may require slightly modified forms or information.  Then if the Treatment Summaries appeared in different formats at the GP office, they becoming confusing and laborious to read meaning that they may end up in a file unread.

BUT equally disappointing was that Macmillan (Juliet Bouverie was present in this workshop) appeared to be completely unaware of the other organisations, charities and hospitals that had been working on their own Treatment Summaries.  We have been discussing it on committees that I’m involved with at the Royal Marsden, NW London Cancer Network, SW London Cancer Network, C&W LinK for quite some time and I’ve seen the results of other people’s work.

The Patient Passport (very similar to the Treatment Summary) is now live and working well for many.  There are ones by Royal Marsden, Chelsea & Westminster, West Middlesex, East Cheshire, NWLondon/Imperial and many more.  Some of these are ‘advertised’ as being required for vulnerable patients but can and are used for many more than just the ‘vulnerable.  There are also private companies who sell ‘Patient Passports’ allowing the patient to keep a summary of all their treatment records and to take these with them to any medical appointment.  Much like our parents did when we were children.  Juliet seemed genuinely surprised that anyone else had thought of the idea of Treatment Summaries and promised to investigate.

I’ve heard the argument that we would lose our patient passports.  How many parents lost their red books?

The difference between a Patient Passport -v- a Treatment Summary is that the patient/carer is responsible for their own information.  This is in addition to the information shared between health organisations in the ‘normal way’ but adds another level of information easily accessible and digestible that the patient/carer can produce at every medical appointment… and update at the appointment too.

What frustrated me about today’s workshop was the complete lack of awareness of any other organisation or NHS Trust work in this area.  Macmillan have spent, I’m sure, a great deal of money on this project without consultation with others.  As it is there are perhaps already too many Treatment Summaries out there.  A GP in West London could well get sent 4 different types from the list of those already published.  How on earth are they meant to know the differences on each?  Most urban GPs will have 6,000 patients in their practice of which approximately 200 will be living with cancer.


In the evening of the first day of Conference there is a dinner to which all attendees are invited.  Always a good opportunity to meet new people and catch up with some old faces too.


Day 2


Our day begins in the main hall with a presentation by Michelle Soan, Inspiring Millions Programme Lead.  She spoke to us about a new project called ‘Inspiring Millions’ as a way that we can spread the word about Macmillan and the reasons everyone should be inspired to fundraise for Macmillan.  I can’t help but feel that since we’re all Voices attending the Conference the ‘hard sell’ is overkill but hey ho!  Here’s their video explaining Inspiring Millions.

Workshop Two – Talking to the Media


This workshop was aimed at those of us who are often asked to talk about our experience, particularly with reference to the TV, newspapers and radio.  Many people in the workshop were able to share their own experiences of working with the media.  For many it went well but for others they explained what had happened when they had been put on the back foot or perhaps hadn’t been briefed about the discussion properly.  Many also spoke of the emotional aspect to share your story.  It’s wonderful for others to hear and understand they are not alone in their own diagnosis but there’s a warning that often bringing up your own story brings with it memories or feelings that you’ve long since buried.

Some hints and tips from this workshop:

  • Media is often very reactive to what’s happening in the world.  Therefore you may be asked to participate with little or no notice.  Always be prepared.
  • Some TV/radio can be pre-recorded and edited.  Be aware that punchy shorter statements are more likely to make it into the final version and not on the cutting room floor.  Therefore word your important messages well.. and briefly.
  • Always ask, when first contacted, if the piece will be live or recorded.  If live, how long will you have to speak.  Prepare accordingly.
  • If your being asked to be interviewed for a written piece, ask to read it before it goes live in case of any inaccuracies.
  • Ask what sort of questions you may be asked and if there are any you can see before the interview.
  • Ask for a copy of the finished film, feature, interview or piece.  It’s not always possible but if you can retain a copy for yourself, it will be useful.
  • You don’t have to be an expert on the issue at hand but rely on your experiences and signpost to experts you are aware of such as Macmillan.
  • Its useful to have 3 key things you want to get across during the interview.  Then if you get stuck with a question you can guide it to one of these points.
  • Have some water to hand so you don’t get dry throat.
  • During filmed interviews always look at the reporter not the camera.
  • Be aware that you may feel you have been cut short during a live interview.  This is because of time restrictions not something you’ve said.
  • Try to smile a little.  Even on the phone or radio you can ‘hear’ a smile.
  • Take a deep breath and relax.

Workshop Three – We take information forward

IMG_6653This workshop related to a number of information resources:

Promoting Information Prescriptions – This system that was created and started by NCAT.  You may recall that I spoke of my involvement as a patient reviewer here.  My mention of it from the NCIN conference and my speaking at the recent Learn and Share event.

So this was where the project had got to… Macmillan had taken it over.  No wonder why the wonderful reviewer system had broken down.  How incredibly sad that NCAT had a host of trained volunteers who were ready willing and able to review, write and process the information quickly and efficiently.  So that many information pathways can be put into the system and accessible to people needing it at a time when they need it.  Why on earth wasn’t this aspect of the project taken forward and at the very least these trained volunteers asked if they’d like to continue the project for Macmillan instead of NCAT?

During the workshop we have a walkthrough of the system and I’m astounded at the level of basic information there now is for cancer.  It all appears generic and I know that there is little hope of getting any information about any rare cancers or support for them from the system.  Have a look here.

Getting involved in Information & Support Services – Macmillan run over 140 cancer information and support services across the UK.  In hospitals, libraries, community centres and hospices.  The services offered range from information about specific cancers, treatment options, signposting to relevant clinical, social care or obtaining travel insurance, understanding the information or simply having time to talk.  Each centre is run by a team of people including an Information Specialist and trained volunteers.  Cancer Voices are encouraged to volunteer.

Getting Involved in reviewing books – Macmillan use reviews by people affected by cancer to help compile a list of suggested books for use in public libraries and information centres.  Reviews are also added to Macmillan Cancer Support website.  A link to a review of the wonderful Lisa Lynch’s book ‘The C-Word’ here.  Cancer Voices regularly get asked to review books.

Promoting core book list in libraries – Macmillan have put together a list of core books that are recommended to librarians about cancer.  This list should allow them to make informed judgements about which books to stock, how to select and appropriate range of materials and when to replace books.  This guide will also enable to librarians to recommend specific books when asked by the general public.  Cancer Voices are being urged to get involved by working with Macmillan to contact libraries local to them.

The Conference closed with a session entitled ‘One Voice’.  The programme said this would leave us “feeling positive, energised and confident.”  Sarah Warwick who hosted this session asked the group to stand, dance, move and sing.  An interesting ask and very isolating for those that were in wheelchairs, crutches or unable to move easily.  Even harder for those with a tracheostomy.  As I watched the group of attendees cautiously attempt to follow the instructions, I also noted a trail of people heading for the door and home.  I shortly followed them out.  Furious on behalf of all those who ended a two day conference where they had volunteered their time, energy and commitment to Macmillan to leave feeling humiliated that they couldn’t participate in the closing session.  I’m quite sure, like me, they didn’t leave feeling any kind of positive, energised or confident.