Art Exhibition – The People Who are Keeping Me Alive

Many months ago one of our PPI Clinical Trials group at Imperial Cancer Research, Rina, presented to us an idea.  Rina was super excited and you could see such animation and fun when she explained what she was thinking of.  Rina was also so clearly passionate about demonstrating that during her care and treatment for cancer she had been looked after by so many staff.  As Rina said we often only talk of our consultant or nurse during treatment but there are in fact so very many others who have looked and continue to look after us.  The receptionist, the phlebotomist, radiographer, radiologist, surgeon, anesthetist, appointment maker, chemo nurse, clinical nurse specialist, research nurse, porter, scientist, cleaner, hospital catering team, etc etc.  In fact Rina was able to name so many not only by title but by first name I, for one, was terrifically impressed!

Rina-hero-hero

Rina wanted to honour those who had been keeping her alive.  She wanted to show the world that there were so many more involved than just her surgeon or nurse.  She wanted to demonstrate that they all had names (not just titles) and also that they had passions and loves outside of the environment that she knew them, ie the hospital.

Tonight was the launch party for the exhibition.  A time when all those of us to see the idea become a reality.  For Rina to be able to get her ‘team’ in one location and say “Thank you for keeping me alive”.

Clinfield 2014

The exhibit is kindly sponsored by Cancer Research UK and will be on display at The Cancer Research UK Imperial Centre in South Kensington until the end of November.  If you’re in London, do make time to visit.  More info – here

Because of Rina’s exhibition, Cancer Research UK have launched a campaign on twitter for YOU to nominate your hero.  Who was your hero?  Nominate them using #RinasHeroes and @CR_UK.

Clinfield Conference – speaking!

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The Clinfield Conference provides an opportunity for research nurses, allied healthcare professionals and all research practitioners to get together in a formal setting.  The Conference programme is put together with care to provide sessions to share good practice, things that worked and didn’t work, speakers talking about their career development pathway, patient advocates talking about their experience with research and how they can assist the researchers, debates and also invaluable time for networking.

I have previously been invited to attend this Conference twice by Kelly, who also leads our PPI Clinical Trials Group at Cancer Research Imperial.   In April this year I received an email, from Kelly, asking if I would like to do a session, as a patient voice, for either a panel or a debate on the use of social media for recruitment to clinical trials.  Of course, I said ‘yes’, put it in my diary and forgot all about it!

Conference Agenda

09:30-10:00 Registration

10:00-10:10 Welcome Professor Janice Sigsworth

10:10-11:00 Why clinical trials and the people who run them matter. Key Note Speaker: Mr Charles Sabine

11:00-11:15 Inspiring the next generation through student placements.  Mary Harrison

11:15-11:45 Coffee

11:45-12:45 The Great Debate:  The use of social media enhances dissemination and engagement in clinical research.

Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Matt Ballentine, Dr Les Gelling- REC Chair, Anna Wallace- Patient Representative

12:45-13:00 Considering a Masters in Research? My experience so far. Stuart Gormley

13:00-14:00 Lunch

14:00-14:25 Stratified Medicine:  the challenges and ethical dilemmas genetic testing brings to research.  Professor Martin Wilkins

14:25-14:45 Can I retweet please? Health research recruitment and the Twittershpere. Professor Heather Skirton

14:45-15:15 Coffee

15:15-15:30  Regret in patients with acute and chronic conditions recruited to stem cell clinical trials Katrine Bavnbek

15:30-15:45  Beyond Research Delivery to Design and Dissemination- Extending the Role of the Research Nurse Caroline French

15:45-16:00 Closing Remarks and Award Presentations Professor Christine Norton and Kelly Gleason

The whole conference was inspiring but none as moving as Charles Sabine’s presentation.

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Charles spoke candidly about his career as a TV journalist where he spent many hours and years reporting from war-torn parts of the world.  No doubt an incredible career and something that few of us would be brave enough to do.  But then he spoke about something way braver than his time in journalism.  He had the whole audience hanging on his every word and, at times, wiping a tear away.  Charles’ father was diagnosed with Huntington’s disease (AKA HD).  He watched as his father ‘disappeared’ before his eyes.  From an intelligent, articulate and ‘alive’ man, he became reliant on others for everything.   HD is a progressive and hereditary disorder for which there is currently no cure.  Charles and his brother have had genetic testing and both tested positive.  Charles’ brother, John, an incredible successful lawyer, is now battling this fast moving and progressive disorder.  For the moment, Charles has no signs.

Charles, like so many of us when we are told ‘there is no cure’ ‘there is no research’ or ‘you’re unique’, uses his experience in journalism and as a son, brother and person affected by HD to a different use.  He is now a spokesman for freedom of scientific research, and sufferers of degenerative brain illnesses (including HD).  He has been talking about his experiences at conference such as this, raising awareness, rallying and organising groups of people affected by HD to speak up and get involved.  He spoke of HDBuzz, Huntingdon’s Research News.  He also spoke about The Huntington’s Disease Youth Organisation (HDYO) where younger people diagnosed with HD are able to get together in person, online, via social media to support one another but also to push for changes and research.

Charles’ presentation without any hesitation was moving.  I wasn’t familiar with HD.  I am now.  But what I also see is the impact that a patient voice (albeit one from the tellybox) can have on improving awareness, patient care, support and, the everso needed research.  Charles’ experience with HD is similar to other rare conditions and diseases and what Charles demonstrated was that by using social media, by using our voices we CAN make an impact.  Research may not be within our lifetime nor may it make a difference to our own health but to KNOW that we  have made a difference for future generations and that, particularly in the case of hereditary disease, our children or grand-children will have the benefit of our involvement now.

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I felt for Mary Harrison, the next speaker on the podium.  How could anyone possibly follow Charles’ presentation?  She did, brilliantly.

Mary is clearly passionate about encouraging and enthusing the next generation.  About engaging all new students in research so that it becomes part of their ‘everyday’ no matter which medical field they end up in for their career.  Research should be second nature to consider for each and every person, patient and non-patient.  Without research medical advances cannot be made.  Healthcare improved and a better and longer quality of life gained.

It was wonderful to hear some of the initiatives and working methods that have been implemented and that Mary is championing.  I hope that others attending the conference were able to go back to their workplaces and implement similar projects.

10690252_790103731037931_4089365723065417337_nAfter a short coffee break, it was time for the Great Debate: “The use of social media enhances dissemination and engagement in clinical research”.  I was on the stage!  We had four debaters, 2 for the motion and 2 against.  My job was to debate against the motion.  The chair for this session, Gordon Hill, introduced the debate and asked for a show of hands for and against the motion.  There was one lonely hand waving ‘against’.

10687141_790104117704559_3378078328530090806_n10421999_790103884371249_2477100869151685393_nTeresa Chinn, @WeNurses, presented her arguments FOR the use of social media.

Compelling arguments and we could see a great deal of nodding from the audience.

Dr Les Gelling @Leslie_Gelling was first to present his arguments against.1932271_790103911037913_2057804842392007702_n

Again I looked out at the audience and saw nodding and acknowledgement of the points Les raised.

10351655_790103937704577_40107761402128731_nMatt Ballantine @ballantine70 stood next to argue FOR the usual of social media.

 

1538625_790103957704575_6793728141737878822_nLast to speak was me.  I questioned if you could really engage people with 140 characters and provide enough information for them to make an informed choice.  I queried the use of acronyms to reduce the character size reminding the audience that patients and carers don’t yet know what these acronyms mean.  I was also able to mention ‘Phyllodes’ in my short presentation 3 times… hehehe a room full of researchers have now heard of our rare cancer!

Without a doubt the debate was difficult.  All four speakers are active users of social media and see the value of the medium for dissemination of information.  Les and I had discussed before the debate how it was difficult to sound passionate about  an argument you didn’t believe in.

In the summing up, Les did a wonderful job of putting doubt into the audience’s mind.  About ethics, confidentiality, understanding, interpretation and audience.

1486625_790104004371237_6015179206767551081_nThere were some very interesting questions from the floor and even some examples of where the use of social media had worked already.  Namely when recruiting young mothers to a trial via MumsNet.

Finally a show of hands from the audience to see who was now FOR and AGAINST the motion.  Les and I had won the debate – there was now no longer a lonely arm waving but a large number in agreement with our arguments.

I must admit to despite winning the argument feeling a little disappointed.  I am in favour of the use of social media for dissemination of information.  However what was highlighted in the arguments and questions was that perhaps we’re not quite there yet.  Not everyone feels comfortable with social media.  Not everyone uses it.  We’re not yet au-fait with using social media effectively nor do we know the true impact of using it.  Social media is still in its infancy and as such there is still a great deal to learn.

It should be something that is used for some aspects now.  It is somewhere that we can learn more and engage and encourage people to become active in research.  It is somewhere that can clinical research trials can be advertised or links to recruitment programmes be discussed.

I think the debate was wonderful as it clearly made the audience think more closely about their use of social media.  It will hopefully mean that it can be used as ‘part of’ a recruitment project but with consideration for confidentiality, ethics and understanding.

 

The afternoon sessions at the conference were fascinating.  It was wonderful to hear from various people about their passion for research, inclusion, consideration of patient side effects and quality of life but mostly about the willingness to share with others their experiences (good and bad).  I know that all those attending this conference will have left with a new understanding of some aspects of research and I’m quite sure many will have been implementing changes or looking at the way they’re currently operating to improve the research landscape.

I’m passionate about research.

It should be part of everyday conversation.

Sadly most of us only think about research when we or a loved one is ill.

Research is also conducted on people who are well with the use of surveys, spit or blood samples.

Research doesn’t have to be invasive or require the taking of medication.

YOUR involvement in research could make a difference in the future.

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.”

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

Presentation

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:
NCIN

  • 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.

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

Presentation

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.

Structure

  • 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?

Summary

  • 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&A

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.

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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.

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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.

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

Background
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]

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

Presentation

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.

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

Presentation

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.

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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

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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.

Conclusions
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.

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

Presentation

Please refer to the slides and data of the presentation.

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

Chair: Annwen Jones
Target Ovarian Cancer

Presentation

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.

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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

ICBP
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

Presentation

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 k.gleason@imperial.ac.uk as places are limited to approximately 20 people.

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

London Focus Group on Research Strategy

Following on from the “Your Say, Your Day, Your CRUK” event, I was invited to attend a Research Strategy day at Cancer Research’s head office.  Cancer Research are running a number of these smaller events around the country (each one with approx 8 people) following on from a number of points raised from the Your Say Your Day event. Well done Cancer Research for following this up.

The purpose of creating a research strategy is to bring forward the day when all cancers are cured.  However in order to fund all the research it would take an inordinate amount of money and way more (sadly) than Cancer Research have access to from all the mammouth fundraising efforts of you all.  This sadly means that not everything can be funded and research has to be ‘put on hold’ or simply not undertaken.  Inevitably this means difficult decisions based on so many factors.

Cancer Research have four main objectives in their research strategy which in brief are:

  1. Reducing risks of developing cancer.
  2. Diagnosing cancer earlier.
  3. Developing new treatments.
  4. Improving cancer treatments.

Each of these objectives were discussed in length at our meeting.  It was a great opportunity for each of us to add our own voice, experience and opinion as to the impact and importance of each of these objectives, in our minds.

Throughout the day there was a lively discussion.  For those of us affected by rare and rarer cancers it also gave us the opportunity to ensure that these were not forgotten in the discussions and included in the objectives.  Over 53% of all cancers fall within the classification of rare or rarer cancers however these are often not in the public eye as there are many cancers but only a minor number of people with each cancer so their ‘voice’ is quieter.

We discussed the emotional impact of cancer, particularly with reference to funding or working with parties looking at the psychoncological aspects.

Discussed was the ‘topical’ conversation of collecting data for BRCA 1 & 2 as to outcomes and how many chose mastectomy -v- lifestyle/surgery.

The EPIC study – where over 500m people from 10 countries have been recruited to research into diet and nutrition with reference to chronic conditions including cancer.

Our group, after lengthy discussion, thought that lifestyle research should be undertaken collaboratively with other charities, organisations, NHS England.  We felt that by working on a larger project across boundaries there would be more access to specific patients and carers able to provide research data and feedback before during and after diagnosis.

With reference to Objective 2 about early diagnosis, a question was raised “Do we find early diagnostic tests for cancers that are curable?”.  A difficult question to answer.  Logically, of course, so that noone needs be diagnosed and can live cancer free.  Logic would also say though that as not every research project can be funded, should the money not be spent on a cancer where there is no cure?

With reference to Objectives 3 and 4, there was a very lively discussion.  Where there are some treatments already should we develop new treatments?  Clearly a difficult one however logically (oooh logic eh?) medicine and technology is always improving, so why shouldn’t there be advancements are simply because of improved technology.  Just because something works it doesn’t mean that there may be a less toxic chemo or less invasive surgery?

One of the many aspects we looked at with reference to this was not only the survival statistics but the length of survival, quality of life and mortality rates.  Each of these have a slightly different bent to them but as people affected by cancer, we all said that actually quality of life was essential in surviving.  Therefore some surgeries which mean that a persons lifestyle is inhibited in such a way to make it ‘difficult to live’ may not be the best option (for some).

We also said that we appreciated Cancer Research (like any organisation) needs to make an impact.  We often, within business, talk of ‘quick wins’ and I guess for many within cancer research, this might be seen as an easy solution, not overly complex, perhaps for a ‘popular’ cancer or a project that perhaps doesn’t take long to complete.

We discussed the possibility of Cancer Research’s involvement in surgical trials.  Could they be carried out in a way that each one would be comparable and thereby determine an advancement in treatment?  This is a difficult one as we know that as humans we have different skills and perhaps are better at one thing than another and indeed each patient is different too.

Discussed during the day was also the Genomics England project.  Worth reading and understanding a little more, if you don’t already know about it.

We were given £350m each (in monopoly money!) and asked to consider how we would allocate the funds within the four objective areas.

Those of us with a voice for rare and rarer cancers were also keen to ensure the addition of monies being ringfenced for rare and rarer cancers.  The main reason simply being that the time required to recruit patients or obtain tumour samples takes much longer due to there being fewer of each available.  We wanted to ensure that the funds, although allocated for a project in Year 1, would be available for an extended period of time, should the project not be able to begin until the data had been gathered.

As part of the focus group, we were handed a pack of post-it notes.  On the wall was a series of points which marked the different stages of the research cycle.  We were asked to use the post-it notes to write our concerns, feedback, thoughts, etc on each of these stages and more particularly where we believe patients, carers, advocates should be involved in the discussions AND decisions of Cancer Research’s Strategy and how the monies raised by the public is to be spent.

A terrifically interesting day and I do hope our voices and opinion will be considered and valued by Cancer Research.

Cancer Research – “Your Say, Your Day, Your CRUK” event

Today’s excitement was that I have been invited to attend a Cancer Research UK event in London.  10 other similar events are taking place around the UK simultaneously with the hope that together we (at all 11 events) will provide Cancer Research with valuable input with regard to more patient/carer engagement in research together with policy and campaigning.

In London there were approximately 100 patient/carers in attendance and I was really pleased to note that Cancer Research had been able to get a good balance of men, women, older, younger, working, not working and different stages of cancer diagnosis/treatment/remission.  I’m always very aware that often the people who dedicate time to attend these events are often those who are no longer working and often older – we need to get more younger participants so that the views of young adults, new parents etc are also represented.  But Cancer Research appear to have done this today!

IMG_3998Having just made that point all girls in this pic!

The day’s agenda is focusing mainly on two main discussions (below) followed by a talk by Professor Bob Brown, Head of Division of Cancer and Chair in Translational Oncology at Imperial College.  Then (thanks to technology) a message broadcast to all locations by Harpal Kumar, Chief Executive of Cancer Research UK.

The first discussion – Involving people affected by cancer in research.  On our table it was a lively discussion leading to our facilitator writing super fast to take down all the notes.  We divided the discussion into three main categories:

  • What patients could be involved in
  • Helping to train researchers in how to talk to patients
  • What motivates people to be involved.

In summary (and believe me this post would be pages long if I put it all down), we said that we believed patients/carers should be involved in everything Cancer Research did.  We asked that there should be more of an open dialogue between the organisation and patient/carers.  We could help with reviewing documentation, website, information and also media.  Don’t assume that patients won’t want to be involved, have an opinion or perhaps enhance the services and products.  We advised that patient/carers can provide input at meetings, events and in person but also by email or via online surveys and forums.  This additional way would allow people who aren’t able to leave the house to also provide their input.  Could the researchers/scientists provide more information to the patient/carers about what they do?  Perhaps tours of research facilities.  Leaflets and newsletters with updates.  We also asked if results could be published… even for projects that didn’t complete or failed.  Collaborative working between the researchers and the users… think of it like translational research!  If we can take research from the lab bench to the patient bedside then we should consider the same for patient/carer involvement.

We suggested that patients/carers who were advocates or past clinical trial patients could train utilise their experiences to train others.  Nurses and doctors could understand the patient journey with regard to clinical trials.  What they had been worried about.  What could have been explained differently or in more/or less detail.  What their experience was and why it was important to them to participate.  We felt that these people could also be part of a video/tv campaign to educate the public about clinical trials.  Not just the ones that include taking medicines or drugs but also those that mean tissue samples being sent from operations or perhaps completing surveys or research about side effects etc.  So many people, until they need to understand, don’t come into contact with clinical trials and therefore many just remember the ‘elephant man’ trial a few years ago and assume this risk for all.  Utilising the patient/carer message could dispel this myth and many more and encourage people to always consider a trial as part of their medical journey (if available).

Patient/carers input needs to be valued.  After all, all these people were also someone before they were diagnosed or cared for someone who was.  Maybe worth remembering that in one chemo ward an organisation may have all the skills they need for the whole project AND now they all have first hand experience too!

What motivates people to get involved?  In the most part the answer is usually because they have been affected by  cancer.  However it can’t always be assumed that this is the case as often it may be more altruistic.

Everyone needs to be realistic and understand the requirements on the participants.  Perhaps they have time but don’t have energy.  Perhaps they have a great deal of time at the moment but know they have treatment coming up.  Perhaps they want short term assignments or to help remotely.  Ask.  Ask the participant and also build rapport so that they don’t feel overwhelmed or ‘put upon’.  We discussed that usually you get a better response and longer involvement.

The second part of our day regarded ‘Involving people affected by cancer in policy and campaigning’.

Something that was raised in the earlier part of the day was that patients and carers should be involved in deciding WHAT is to be campaigned for and what policies were prioritised.  We felt it was a little patronising to be told what we should be campaigning for without knowing that there was sufficient patient/carer input at the start of the discussion.  After all if it was something we were passionate about, would we not then put more emphasis on getting the message heard?

We asked for training, support and feedback for all participating.  For many public speaking is part of their career however for some talking about something so personal can be difficult.  Perhaps as part of the training use other patient/carers who have previously spoken publicly to talk about their experiences, how they overcame their nerves, what they felt got the point over etc.

We also felt that it was important for Cancer Research to publicise more the work they do with regard to influencing policy and campaigning.

This posting is only part of what was discussed and Cancer Research have also put together a blog with some more of the points raised.  Do post any feedback or comments on their page.

In London, we were also treated to a performance by the Combination Dance Company – Code.  Code are preparing a performance project that will be seen throughout the UK which will, through dance, words and music, tell a story about cancer and particularly research.  Do keep an eye out for Code where you are.  In the meantime you can follow their progress on Facebook and Twitter.

International Clinical Trials Day

Each year, International Clinical Trials Day is celebrated around the world on or near the 20th May to commemorate the day that James Lind started his famous trial.

Tonight I’ve been a guest of Cancer Research UK at their Imperial Cancer Research UK Centre in West London. The purpose of tonight’s celebration is to launch a series of short films which feature key research programmes currently being undertaken. These films will be displayed in public areas within partner hospitals and for use by the teams on websites and during public and patient involvement events.

As you know I’m passionate about the improvement and advancement of cancer care. I have spent time to try to understand what clinical trials really involve. What is being undertaken and where. Why people should get involved (greater good and personal good). I can’t stress enough that without patient and carer involvement, medical advancements will be slow or in some cases not exist at all!

Clinical trials used to fill me with fear. I thought, as I think many do, that being involved in a clinical trial would mean being injected with drugs, high levels of danger and perhaps ending up like the Elephant Man case or worse.

What my investigations and questions have led me is truly a very different understanding. There is so much more to clinical trials and a great deal of it non-invasive. Participation can be as little as completing surveys or questionnaires during your treatment or whilst caring for someone else. It may be changing your diet slightly. It may be helping with the wording on a funding application from a patient/carer perspective. It might be the occasional blood sample. It may be speaking to researchers about your experience first hand. It may be donating part of a excised tumour. It may be regular scans. It may also be changes to your chemotherapy regimen, radiotherapy frequency or taking new drugs.

However with all patient/carer involvement there is a huge duty of care to ensure you understand your involvement, the level of involvement. Continued support and, if you’re participating in drugs trials, constant access to the clinical and research team.

They can’t do their work without us!

Personally, I’ve authorised for tumour samples from my excised Phyllodes to a tissue bank for a clinical trial relating to Phyllodes. Sadly due to the small number diagnosed the trial remains on hold whilst new samples are slowly collected.

I’ve also authorised for tumour samples from my excised DCIS to be used in a trial. This trial is known as the ICICLE trial and there is a brief explanation from Cancer Research about what it is researching.

As part of the Patient Participation Group at Imperial, I’ve also helped out with the wording of funding applications, trial designs and patient/carer leaflets. I’ve participated in discussions and provided feedback at meetings to researchers and clinicians. I’ve also been fortunate enough to have a tour of the research centre and see exactly where the work is carried out, the scans performed, the ward for inpatients and consultation rooms. Amazing facility. Incredible work.

So I guess it’ll come as no surprise to anyone that I’ve been involved in another project at Imperial. The only surprise is that I’ve put myself in front of a camera – I so hate myself on film! But needs must.

As I mentioned earlier, tonight saw the launch of a number of films. Well yours truly appears in a couple of them! Even more so, I was presented with a lovely gift from the team at Imperial to thank me for my involvement and all that I contribute to the group.

I hope the films make a difference and encourage people to get involved in clinical trials… remember they’re not scary!

Here are a few films that explain what taking part in a clinical trial involves and below there are more specific trial information films.….

Link to films – I may well appear in them so don’t be scared!

Cancer Research Share Event

Many charities and NHS divisions ask for patients and carers to share their experiences via a presentation, a video or a talk to staff.  The premise is always that this helps their staff focus on why they’re doing a job and perhaps understand aspects of their services from a ‘user’ perspective.

I was asked to speak this afternoon at Cancer Research to a group of new members of staff who’ve joined within the past 3 months.  A mixed audience of all levels of staff, some of whom will be working in a clinical setting or a lab, others in an office, some on fundraising teams and others within the media team.

I prepared what to say.  The outline of what I wanted to say was:

  • Introduction and thank you for invitation
  • Who I am and my journey
  • Why you’re doing what you’re doing
  • Thank you
  • The future

Sounds simple, doesn’t it?  I’ve had many sleepless nights thinking about that I’m to say, how it will be received and if I can say it at all.  It’s hard to talk about some aspects as I’ve safely stored those in the mental ‘do not revisit’ box and need to dip in and get it out.  I also know that the patient experience is so valuable and even the heartstring stuff is useful to ensure that people remember why they are doing the job they’re doing.

So when the event was cancelled this morning I’m not sure if it was relief or disappointment I felt.  Certainly I wished I could get back that missing sleep from the past few nights!