Idle hands…

I discovered I love to crochet in front of the TV.  Actually I also discovered I like to decoupage and bead and well just about anything crafty!  But right now it’s crocheting after first picking up a needle and making the little blanket for Andi.

So I’ve been hunting for a project to continue my rediscovered crochet crafting.  I found Woolly Hugs and also their Facebook page.  There are lots of fabulous projects to knit and crochet items for Nepal, World Child Cancer, Yorkhill Hospital Glasgow, Great North Children’s Hospital Newcastle and the one I chose, Angel Hugs for the Royal Brompton Hospital in London.

My task was to crochet a small blanket in pure white cotton to be sent to the parents of some of the sickest babies in the country at the Royal Brompton Hospital in London.  Devastatingly not all survive.  The Angel Hug blankets are crochet/knitted with love and a hug for the baby and their family at a really difficult time.

This is the beginnings….

AngelHugBeginningsThen after rushing back to the shop (StitchUp) for more Cotton, I joined the squares together and added a surrounding edge to the blanket.

AngelHugNo1It’s not perfect….. but it is made with love.

Why don’t you knit or crochet one too?  Great ideas and causes on the Woolly Hugs website.

I’m happy to keep crocheting for this project or another but would love some help financing the cost of the wool.  If you fancy supporting me, I’ve chosen some wool on my Amazon Wish List, feel free to purchase and send them to me (white for Angel Hugs and coloured for other projects).  Thank you.

Ooh and if this post does spur you on to knit or crochet something, let me know.  I’d love to see what you’ve made.

Rip Off Britain

Did you watch it?  I did warn you I’d be on your tellybox.

Rip Off Britain: Holidays, Episode 4 featuring lots of lovely people and me.

The piece I was asked to be involved in was with reference to the high cost of travel insurance for people with long term conditions.  It’s not just the high price though.  What we wanted to do with this story was highlight that often people don’t know their current travel insurance no longer covers them, or that their premiums will now be absurdly and often inequitably high, even if they’re many years post-diagnosis (as I am).

We also wanted to demonstrate that there are companies who will treat you as an individual, assess your case and provide a quote personal to your circumstance, holiday destination and health. I am so pleased Fiona Macrae of InsuranceWith was also featured on the same programme.  I was fortunate to meet Fiona at a time when I finally thought I’d best not travel anymore without insurance and discovered their personal approach and in turn an affordable cover.

I also hope that this feature may provoke discussions between individuals and their insurance companies to get some of the bigger companies who don’t ‘personalise’ insurance to become better at making the assessments of if they’re unable to offer ‘realistic’ travel insurance then simply not to offer it at all and to direct people to other companies who do offer it.

I’m personally pleased that the BBC also kept in mention of Phyllodes, not only verbally but also as I typed it into my computer.  Odd perhaps to be pleased with this but I was once told I was unique in my diagnosis and felt alone.  Since then I have met hundreds of others around the world (online and in person) who’ve also been diagnosed with Phyllodes and also felt alone.  I can guarantee someone looking at Rip Off Britain today doesn’t feel quite as alone as they did yesterday.

Anyway, I shall leave you to decide if I did the story justice.

Genetic Testing

In August 2011 one of my co-administrators in the Phyllodes Support Group posted in the group a request for 1,000 people who had been diagnosed with sarcoma to be part of a sarcoma research project on 23andMe.  The project was sponsored by 5 charities, Beat Sarcoma, Sarcoma UK, Association of Cancer Online Resources, Sarcoma Foundation of America and Sarcoma Alliance.  The aim was to genetically test 1,000 people who’d already been diagnosed with a sarcoma and see if this testing would find a link between us all.

A spit sample with the aim of producing a valuable research outcome that may help thousands of others in the future.  Of course, I registered immediately.

As part of the testing process each participant received their genetic test results free of charge.  I’d never considered having genetic testing so for me the test results were an added bonus.

Between my spit sample being collected by a DHL courier (who looked horrified when I had to declare the content of the package being sent to the US), and my receiving the results I found myself wondering what I would find out, whether I should even read the results, what I would do IF it told me something I’d not like to know.

At the time in the UK the process for genetic testing was to be referred by your Dr and to have counselling as part of the test.  The counselling is carried out before, during and after your test results to ensure you’re able to cope with the results and what you would do should they not be what you expected.

However as I was participating in a project run via the US, counselling was not offered and I’d not thought it would be of concern when I signed up.

Me being me, decided that I should do my own ‘counselling’ and, as far as I’m able, ensure that I’m in the best mental state to manage any results – good or bad.  I made myself consider what it would be like if I opened the email to discover that I was high risk of an illness, what I would do, who I should tell etc.  I made myself not only consider it but imagine that was the result.  I needed to know how I’d cope and what I would do in those circumstances.

So when I received an email “Your 23andMe Results are Ready!‏”, I felt prepared.  Although I confess to not opening the email for an hour or so whilst I paced and reconsidered what I’d do.

I was fascinated when I opened up the results.  How could a little bit of spit identify that I had blonde straighter hair on average, blue eyes and if a smoker, likely to smoke more!  All correct although I’ve now not smoked for years.

Within Disease risk, I discovered that I’m slightly higher at risk of coronary heart disease, ulcerative colitis, breast cancer, celiac, Crohn’s and Lupus.  But these are all relative.  On most of them I’m only very slightly higher and still it’s only 0.5% chance where the average population is 0.2%.   I can see however that one might read that as over twice the risk of the average population rather than 99.5% risk of NOT having the disease.

With all statistics and numbers it’s difficult to interpret them without emotion and to understand percentage risks in a way that’s meaningful.

I was however angry when I read my results for multiple sclerosis.  Mum had MS and my Aunt was diagnosed after Mum in the early 90s.  I remember Mum telling me that as MS is something that generally passes down the female line, according to her Dr I had now a 50:50 risk of being diagnosed with MS.  I’ll admit that this has weighed heavily on my mind since then and has infuenced decisions I’ve made in my life.  One of my school friends, Belinda, was diagnosed in her 20s with MS and passed away a few years after diagnosis.  And I’ve watched Mum become less able and eventually pass away from MS.  So when the results of my 23andMe genetic testing indicated that my risk of being diagnosed with MS was less than the average population, I was livid.  I was furious that I’d spent 25 years worrying about it.  Every time I had numbness or tingling in my fingers and toes, when my eyesight was playing up and many other ‘symptoms’, I’d wondered if it was the start of MS.  Ironically over the years I’ve never thought that they could have been wrong… 25 years ago they knew far less than they now know!

So what else did my results show me?  Actually I’m quite healthy!  For the most part I’ve a typical result or one that isn’t far off the average population.  I also know I have an increased sensitivity to Warfarin… so should I ever be prescribed this, I will know to tell the Dr that I need a decreased dose!  Nothing of note within my Carrier Status.  Only disease risks that are more than double the average population are melanoma (3.6%), celiac (0.7%) and lupus (0.5%)… but they’re still only very small percentages so I’m not going to worrry about them.

Since my first registration I’ve received regular updates from 23andMe when new research comes to light and my results are re-assessed.  I’ve been fascinated to read them.

Within 23andMe you are able to link your results to others and many of us from our Phyllodes Support Group who took part in the trial have done this.  We thought it may be interesting to see if there were traits/risks that we could identify between our small cohort group.  Sadly we couldn’t see anything that stood out with the exception that many of us had higher than average auto-immune disease risks.

So why this post now?

23andMe have just launched in the UK.  This means that anyone is able, for a price, to obtain their own genetic testing via 23andMe and without genetic counselling.  It’s a service accessible via the internet.

Germany are considering 23andMe being available there.  This week I was asked my views on it and asked to record a piece for their TV channel ZDF.  You can see it here from about 4.10.

Inevitably there’s been lots of discussion about whether it’s a good thing.  Whether genetic testing should be allowed without counselling?  Whether the results provided by 23andMe are accurate enough and using up to date data?  My view, is ‘Yes’ but with caution.  Anyone undertaking genetic testing needs to consider why they’re doing it.  What they want to know/understand from the test results.  How they’d deal with the results being good or bad.  Who they’d tell.

I wouldn’t have had my genetic testing carried out were it not for the Sarcoma Community Project.  However I’m pleased I did.  I feel I know more about myself, my health and my risks than before.

 

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.

Tower Poppy Removal Team

I was pleased as punch when I received notification that I had been allocated a shift as a volunteer on the Tower Poppy Removal Team.

Tower Poppy Removal1I had been so incredibly moved when I visited the Poppies in September.  The representation of all those who lost their lives during WW1 by a sea of vivid red ceramic poppies.

Each poppy being planted one by one to create a beautiful and temporary remembrance.  The Tower of London Poppies has become a ‘destination’ for so many visitors from overseas but also around the UK.  So many photographs being displayed on social media and in the press.  Now, as was intended to display the fragility and temporary nature of life, the exhibit is being carefully plucked from the earth one by one, dismantled, washed and packed up dispatch.

The role of volunteer was fun, a small fun team within a large volunteer group working around the moat.  Trying hard to not chip or break each poppy whilst removing the washers and stoppers that had held the flower in place so well.  Our little team removed poppies first and then changed duties to separate the washers, rods and stoppers.  Other teams were on cleaning duties and others packing the poppies into boxes.

Tower Poppy RemovalIt didn’t go unnoticed amongst our team of volunteers that our task was also incredibly moving once again.  I was acutely aware that with every poppy we were removing it represented someone loved and lost.  There was also the feeling that we were handling the ‘last remains’ of those people and that they were being dispatched to the loved ones left behind.

Truly an honour to have been part of such a moving and beautiful remembrance tribute.

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The Great Debate: Should we use social media to recruit patients in clinical research?

Eeek the Agenda has been published for the annual Clinfield Conference for Clinical Research Staff.

Guess who’s speaking and part of the panel debate? Meeee….

“11:45-13:00 The Great Debate: Should we use social media to recruit patients in clinical research?
Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Anna Wallace- patient representative, Les Gelling- Ethics Chair”

As always it will give me the ability to mention ‘Phyllodes’ and this occasion to a room full of people at the coalface of clinical research.

As you will all know from this website social media has played a huge part in my finding other people diagnosed with Phyllodes; sharing experiences and supporting one another; researching medical/scientific papers and sharing them with the group; discovering clinical trials around the world and again sharing them with the group; and so much more.

I know that when we’ve discussed clinical trials and research within social media, the thirst for knowledge, how to sign up and get involved and interest in any results and findings from group members is enormous.

Using social media as a way to recruit patients into clinical research is a no-brainer.  It should also be used to educate and inform patients on what research is; what and how you could be involved; why it’s important for medical advancement for you and others; etc.

My ‘journey’ would have been a very different one had social media not played a part.

I’d love to hear your comments.

Strengthening public and patient engagement in biobanking – developing plan of action – Cancer Biobank Conference in Cardiff

Strengthening public and patient engagement in biobanking – developing plan of action
Masonic Hall, Cardiff – Wednesday 18th June 2014

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Sadly due to problems on the M4 I missed the introduction to the day and part of the first speaker’s presentation.

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Dr Kirstin Goldring
UCL Biobank and NIHR BioResource Coordinator
Public perception of research – where are we starting from?

Kirstin presented some of the findings from recent research as below:

Findings:

  • Majority of respondents want to take part as long as the research has been approved by the research committee.
  • Involving patients in the group helps with research and information written in a way that can be understood by the non-medics. However our research showed that patient involvement in the research project didn’t make any difference to their involvement.

Findings: Eurobarometer

  • The term “Patient involvement” was not clearly understood either by patients or practitioners.
  • But once understood what it means both practitioners and patients appreciate the involvement of patients.
  • Communication was central to the better outcomes however practitioners are aware that they perhaps don’t have the time to do this well.
  • Patients need to feel empowered to ask questions and get more involved if they need to do so.
  • Practitioners worried about giving alternatives as it may dilute the patient’s focus.
  • Chronically ill patients tend to have more awareness of treatments and self-monitoring their wellness.
    Younger patients had higher expectation of their own involvement but were more reluctant to ask questions.

Findings: The Wellcome Study

  • Participants in research showed overwhelming support for the return of health related findings particularly when a condition is treatable and serious. Feedback throughout the process.
  • Respondents valued the role of a health professional or those they already had an existing relationship with during the process.

Findings: STRATUM

  • There is a high level of public support for biomedical research and willingness to donate NHS for this purpose.
  • More information and interaction they have with the process the more people are willing to be involved.
  • There was concern about where samples may be used. It was essential to provide good consent information.

Public Perception of Research

  • Public are interested but need more information, understanding and communication… Begin the conversation.
  • PPI needs to be considered before you start the process of putting a study together. Involve patients before the study is even designed.
  • Heading in the right direct but need to keep involving, developing and evolving.

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Amir Gander
Lead, Tissue Access for Patient Benefit

  • Falling between the cracks
  • Power of patient involvement
  • Linking across many hospitals over the north and east of London together with NHSBT transplant pathway.
  • Started out setting up and putting in questions about research and consent to all patient questionnaires. This evidenced that most people would give consent but those that didn’t had a doubt as to how their tissue was being used. Simply speaking they weren’t aware of the ethics and rules.

Amir was part of the team who set up a Big Bang Fair which is the largest celebration of science, technology, engineering and maths for young people aged 7-19 in the UK.

During the Fair they were able to speak with the young people about organ transplantation and donating tissue for research.  They also set up questionnaires before and after the process to gauge option on organ transplantation and tissue.  The kids were dressed up in lab coats and participated in many ways including an interactive iPad game and an anatomical model.

What’s next:

  • Going into schools
  • Organising events in neutral locations ie football, community centres etc
  • More Big Bang Festivals
  • Take this format around the country.

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Alison Parry-Jones
Manager of Wales Cancer Bank

Introduced the next section of the conference with a slide from NCRI.

How others raise awareness and increase understanding – case studies

  • Cancer Research Wales
  • Organ Donation Wales
  • Clinical Trials in Wales
  • GE Healthcare
  • How Tenovus use social media
  • Lay / Volunteer consenting for biobanking

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Liz Andrews
Director for Cancer Research Wales
Proud to support the Wales Cancer Bank

Totally dependent on the donations that are given by the public to Cancer Research Wales.

How do they generate and raise awareness that leads to donations:

  • press releases
  • radio adverts
  • social media
  • annual open day
  • newsletter monthly
  • website blogs
  • shops
  • community events

They’re also keen to say that all money raised will be used within Wales for research.

Every January they open the doors to our research labs so that the supporters can come in and meet the researchers and have a tour of the facilities.

Cancer Research Wales have a dedicated library for cancer. It is staffed by an excellent team who are able to research and provide specific information to medical professionals, charities and organisations thereby aiding the process.

Using the monthly newsletter to include a story about the research projects. A story on the researchers which includes details on the projects but also some detail about the researcher themselves. In addition to fundraising projects and fundraisers. The emails these generate from the public is very positive.
They track all the links on the newsletter so we can see how many people read which links. This helps them to know what is important to the public.

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Pat Vernon
Welsh Assembly Government
Organ Donation Wales

There is to be an Opt-Out system for organ donation in Wales.
How do we communicate the change to the public? It’s to be implemented in 01/12/2015.

Organ Donation – why we need to think about it?
The problems – societies’ view, myths and reality

Organ donation:
… is a final act of generosity
One person can save or transform up to 9 other lives by organ donation.
The most successful and cost effective treatment for many.

We have a chronic shortage of organs across the whole of the UK

People who could donate are not becoming actual donors

High rate of family refusal to consent to donation often because we do not know what our relative wants.

People are dying waiting for a transplant – 36 died in Wales in 2012/2013 waiting for organ donations.

What’s stopping us?

  • 9 out of 10 people support organ donation in principle
  • Around 60% never discuss it or get around to doing anything about it.
  • 1m on the Organ Donor Register in Wales but what about the other 2/3rds of the population
  • Reluctant to think about death
  • Faith and culture?

Get informed about organ donation:

  • Age is no barrier
  • Health conditions may NOT preclude organ donation
  • All the major faiths support organ donation
  • Organ donation is a very rare event, 30,000 people die each year in Wales but only around 250 in the way in which donation is possible.
  • Organ donation does not affect the quality of care you are given at the end of your life.

What’s being done in Wales:

  • Changing the law to a soft opt out version. This will happen until 1 December 2015.
  • Means you’ve consented to organ donation unless they’ve said otherwise.
  • Families will still be involved and be able to say if they know their relative didn’t want to donate.
  • Expected to deliver a 25-30 increase in the number of donations or 15 additional donors… which each one could save 9 people!

Awareness raising:

  • All the things above
  • But also the two year period until it is to become fully effective. They need to understand the choices and decisions. If you want to be a donor you can make an express decision to be a donor. Or do nothing and it will be deemed to having no objection to organ donation.
  • If you DON’T want to be donor you can register as that.

Encourage people to talk about organ donation. We know that most people don’t talk to their families about these things and it’s imperative that these conversations take place

The awareness and campaigning will need to continue so that new people to Wales understand their consenting and also so that people are reminded of how they can update their wishes.

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Barbara Moore
Communications and Engagement Manager
National Institute for Social Care and Health Research Clinical Research Centre

Clincial Trials in Wales

  • Cancer Research UK funded nurses and the research body at first. It’s now funded by the Welsh Govt.
  • NISCHR CRC have research nurses embedded within the NHS staff
  • Involving people through training and also payment.

Cancer Research UK do still fund some clinical research nurses at public promotional events in Wales.

Patient understanding of clinical trials is low. A campaign that was carried out is ‘It’s OK to ASK‘.

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Alyson Ayland
PR & Organisational Communications Specialist
GE Healthcare

GE provides tools and machinery to pharma but isn’t a pharmaceutical company.

5 step approach to engagement strategy:

Vision:

  • Be clear about your strategy. What outcome are you looking for? A little like a business strategy.
  • It takes time to build relationships and they develop over time with interaction.

Mapping:

  • Prioritise stakeholders
  • Focus internally and externally so that people understand what your strategy is.
  • Partner with other organisations
  • Programme of public speaking events. Prepare a speakers toolkit and ask your supporters to advocate/speak for you.

Media

  • Your people are your best advocates. Make sure they are all informed enough to talk about it.

Tactics:

  • Launch campaigns
  • Showcases
  • Strategic partnerships
  • Site visits from MEPs and people of influence
  • Guest speakers events
  • Photo opportunities and cross pollinating events
  • Newsletters (hard copy as it stays on desks longer)
  • Personal emails and letters
  • Networking events
  • Awards

Keep looking for conversations about what you can do

Milestones:

  • Keep projects energised.
  • Have events and remind people what you’re doing and why. Space them out so that they keep momentum but not too many.
  • Visit from health minister to show and tell about products and aspirations.
  • Signing of Memorandum of understanding with the local universities. Looking for synergies and collaborations.

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Will Barker
PR & Digital Officer
How Tenovus use social media

There’s a huge amount of people using social media however there’s also a lot of noise. We need to be heard above it.

Tenovus use Facebook, Twitter, Instagram, Youtube, Vine and LinkedIN

  • Want to tell stories of people we support. This increases awareness and also share the work that we do, research , support fundraising and awareness.
  • We want to be heard. A voice of professional opinion and comment.
  • We want to be the voice of cancer patients in Wales.
  • Talk to people that matter to Tenovus in the place that they’ve chosen. i.e. those who are on FB anyway will interact without having to change location
  • Not just broadcasting it’s about having a conversation.

Social media allows your organisation to get what it wants out of it. You can choose how to use it and how to interact.

Social media is a great way to drive people to our website where we can put much more information than we can on a post or tweet.

Must represent all people. Not just pink and female!

We use videos in blogs from researchers to show the ‘face of research’ to the public. A brief introduction but then if someone is interested, they can link through to more information available to them.

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Dr Balwir Matharoo-Ball
Operations Manager, Translational Research and Biobanking, Nottingham University Hospital
Lay volunteer consenting for biobanking

New biobank in Nottingham. Set up 3 years ago.

Patient Public Involvement in Consenting for Biobanking.  The use of language should also determine the level of the patient public part:

  • Participation – You take part
  • Engagement – You’re on the periphery
  • Involvement – From start to finish involvement

The public voice is really important to learn from and why all should listen.

Process of taking consent for inclusion in biobanking should be sensitive and involve the person and family

Asking for PPI involvement, NHSB produced a job application, training by the hospital trust, give them an honorary contract from the trust and also sign a confidentiality agreement.

As they are also facing the public they need to go through the necessary checks.
The PPI advocates are also taken through the whole process full life cycle of biobanking touring the histology labs and receiving an overview of the NHSB clinical/sample storage.
Annual appraisals for the PPI advocates.
Recognise and acknowledge the number of years given to the Nottingham Uni Hospitals by the PPI advocates.

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We broke for lunch during which time we were entertained by a wonderful group of singers from the Tenovus Choir.

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AFTERNOON SESSION

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Dr Bridget Wilkins
Experimental Cancer Medicine Centre Network / NCRI Pathology Networking and Biobank Lead
Swipe here to donate

Would a ‘swipe to donate’ card work for signing up for giving consent to use your tissue for research?

  • Same as a loyalty card, it might be presented to the person with instructions about how to active online. Once online the person is able to personalise the card, say what they would and would not consent to. Additional information about patient groups in the area, current research studies that are local.
  • Your consent would then be added to a database and the card would be the key. Information is updated if you had a hospital episode of someone has done.
  • You could incentivise someone by doing online research or updating it regularly.

Would need to be prompted to check in and update.. perhaps by email, text or on a letter.

You could also say how you wanted to be contacted i.e. by text/email/post. This communication could be used to send additional information or new trial information.

You could also keep it updated with other information such as recent blood tests.

Record mood, wellbeing, lifestyle information, weight/height etc. Enriches the dataset of your tissue which makes it of more use to the researchers.

A simple interactive tool to volunteer our use for leftover tissue samples.

Counter-argument against swipe cards

What happens if I lose the card? Can’t remember the pin number? Website.
I’m happy you can use my tissue, don’t bother me again.
Personal information about me, how will I know it’s secure? Where is it held?

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To close the day there was a round table breakout session to come up with action points and an implementation plan to raise understanding and awareness of research.

  • How do you get more public awareness into biobanking?
  • What is biobanking?
  • Would you attend an open day at a biobank?
  • How can biobanks or the CCB address challenges of public engagement in biobanking?

Discussing a number of challenges:
Appropriate communications, avoiding jargon, plain language.
Unfamiliarity about biobanking.

ST – Posters in waiting rooms in GP surgeries, A&E clinics etc
Start conversations about medical research and biobanking at different levels:
School, W1, community groups, Unis, Rotary, soap opera, magazines.
Divorcing fro own personal health but being part of everyday conversation.

ST – develop toolkits to give to resources so that these conversations can be had at appropriate level, professionals, patients, general public.

Trust – make this type of complex and emotionally laden topic accessible to all, accessibility = transparency = trust. Seeing is believing – tours of biobanks.

Looking at what we can do internally within biobanks.
Getting Biobanks managers and boards to understand the difference between involvement/engagement/consultation. Involving actively or engaging passively.
Sharing best practice with case studies from biobanks.
Research studies to demonstrate the impact that public and patient involvement can have on biobanking.
CCB could set up and provide a professional program to train biobanking managers on how to to do it, engage, involve. As part of CCB membership additional ‘kite mark’. Which will also build trust and transparency.

How can the CCB most effectively translate the findings of biobank into health development.
How do you engage Govt to develop a policy? Incentive?

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An incredible thought provoking day discussing biobanking, tissue and organ donation and also looking at the small amount of people who actually participate and discussing why.

I hope the notes from the above may get you asking questions, perhaps signing up but more than anything having a conversation about it all and letting your friends and family know your wishes.

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

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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

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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.

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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.

Risk Assessment: Breast Cancer, Prediction and Screening

Progress Educational Trust are hosting a series of events relating specifically to breast cancer. The variety of the talks cover genetics, gene testing, prediction, screening and risk.

Tonight’s free talk is being hosted at UCLH in North London and supported by Wellcome Trust. I was told about this event by a couple of people, one of whom had heard of it from the US and suggested I attend.

I was particularly pleased with the variety of speakers for tonight’s event. A spectrum of experiences and also of opinion.

Event Title: Risk Assessment: Breast Cancer, Prediction and Screening

Agenda:
Introductions from the organisers (Sarah Norcross – Director of Progress Educational Trust) and the Chair (Dr Ann Robinson – North London GP and Health columnist for the Guardian)
Wendy Watson (Founder and Director of the National Hereditary Breast Cancer Helpline)
Paul Serhal (Founder and medical Director of the Centre for Reproductive and Genetic Health)
Professor Stephen Duffy (Professor of Cancer Screening at Queen Mary University of London’s Centre for Cancer Prevention, and Director of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis)
Professor Klim McPherson (Professor of Public Health Epidemiology at the University of Oxford’s Nuffield Department of Obstetrics and Gynaecology)

Each speaker only spoke for 10 minutes and this was then followed by an extensive question and answer session.

Wendy Watson spoke about her own journey. She was one of the first women in the UK to undergo a risk-reducing double mastectomy. Her own research led her to make and insist up on this surgical decision. She then sought to set up an advice line and raise awareness for others facing a similar decision. She has published her book “I’m still standing: My Fight Against Hereditary Breast Cancer”.

Wendy told us that 1 in 200 have genetic damage which may imply a higher risk of breast cancer. Wendy believes that more should be done and available on the NHS for women AND men to discover more about their genes and if any mutations have occurred. If you are concerned about a hereditary risk of breast cancer, her organisation, National Hereditary Breast Cancer Helpline offer support, advice and in some instances, funding for screening.

Our next speaker Paul Serhal. Paul spoke passionately about his field. He was responsible for the UK’s first baby born following pre-implantation genetic diagnosis for BRCA1 mutations.

Pre-implantation genetic diagnosis (PGD) is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. It involves checking the genes of embryos created through IVF for this genetic condition. More information can be found at Human Fertilisation Embryology Authority.

Paul was passionate about the importance of his work and what it means to the people he assists.  I was so pleased to hear also that they currently have no waiting time, have some funding arranged for suitable patients and can offer 3 cycles to each couple.  I know of people who have the BRCA mutation and have considered NOT having children because of it. This work would assist many.

The third speaker was Professor Stephen Duffy. Prof Duffy was part of the original team who adapted the Swedish two-country trial of breast cancer screening on which the UK’s national breast screening programme was based. He remains an advocate of our screening programme and is often quoted at times when people say that the screening has led to over diagnosis of breast cancer in the UK. One such quote “In particular, it is good news that lives saved by screening outweigh over-diagnosed cases by a factor of two to one“.

He spoke about the difficulties of screening for women with dense breast tissue. This is often raised when discussing reducing the screening age as younger women tend to have denser breast tissue. Prof Duffy said that often there is less lead time to diagnose breast cancer due to the difficulties reading mammogram results of dense breast tissue.

I was delighted to see that he has also just been appointed as Senior Investigator by the National Institute for Health Research

Our final speaker was Klim McPherson. Klim focusses his research on epidemiological methods and women’s health. He spoke about the factors that contribute to breast cancer. To give you some idea, I found this quote from the BMJ “Klim McPherson is the man least likely to accept an invitation to lunch at McDonald’s

His research has led him to look at and compare the US to the UK. He identified that the US certainly were far more radical with their surgery and treatments – however it wasn’t clear how much of this may be due to ‘insurance’ factors but felt not always necessary.

He was pleased to note that although breast cancer may be on the rise for being identified and diagnosed it was now much rarer to die FROM breast cancer.

So how can we avoid getting it?

  • We are getting periods at a younger age and having children at an older age.
  • He found that if you had your first period at the age of 11, you were 3 times more likely to get breast cancer than a girl who started their period of age 14.
  • There is a higher risk of breast cancer in women who have taken the pill or HRT.
  • 5 years of HRT doubles the risk of breast cancer.
  • Obesity post-menopausal makes you at much higher risk of breast cancer.

There’s a 20% reduction in breast cancer when in the breast screening programme i.e. every three years. It is imperative that people attend their screening when invited.

Q&A

There was then a long period for questions from the audience to the panel. As this was a free to attend event open to all, I was pleased to see a good variety of attendees and hence with the questions raised, I’ve stated who the questioner was.

Q1 Scientist – What’s the extent of genetics, epidemiology & screening connection?
KM – Yes they are connected. There is an Integrated Pathway (which is new) that is assisting with the integration of these three areas in determining healthcare.
Q2 Dr – If money was NOT a factor, what would a perfect screening programme look like for breast cancer?
SD – About right with the current screening programme i.e. 3 yearly mammograms. There is often talk of MRIs being better however patients don’t like MRIs and although they may be marginally more effective experience tells them that they produce more false positives so may lead to unnecessary surgery or treatment. Angular mammograms where using architectural distortion produces measurements of angular distribution i.e. slices of the breast may be more accurate but are complicated to read and produce.
Q3 Patient advocate – Spoke about the importance of trials, clinical and surgical. Asked what could be done to ensure more patient involvement and also of the recent DCIS trial.
Q4 Patient – What is offered to ladies under the age of 30 who have been tested positive for BRCA mutations by way of screening? Mammograms are not offered nor the option of going onto the normal breast screening programme.
SD – He reiterated that most screening is ‘pointless’ for people under the age of 30 due to the denseness of breast tissue.
Q5 Journalist from Pink Ribbon Magazine – To Paul asking more about the PGD programme and requesting information.
Q6(1) Clinical Geneticist – If we delayed puberty then this might/would reduce cancer… why can’t we?
There was much discussion about the ethics around this and although there was a consensus that it may reduce cancer, would it be ethical to do so?
Q6(2) – If each child was tested for BRCA at birth or perhaps a mutated bowel gene and found positive… could we delay their puberty knowing this may reduce their long term risk of cancer?
Again much the same discussion. Yes it may help but would it be ethical? What other implications may this have upon the person emotionally and psychologically?
Q7 Genetic counsellor – How many genetic counsellors are there in the UK and where are they? It was felt that many genetic scientists went on to become genetic counsellors and nurses in this field. However nobody was sure if there was a directory of genetic counsellors in the UK.
Q8 Patient – Why is breast cancer in younger women rising? What are the risk factors and how can people avoid them?
KM – He reiterated earlier periods and later pregnancy. He also discussed the increase in our use of plastic based products from an early life. Makeup, deodorant etc etc often contain oestrogen like products in the plastic and we’re putting this daily onto our skins from an early age.

There are two final events in the series. Sadly I’m unable to attend but please do go along ‘Risk Management: Breast Cancer, Business and Patents‘ on Thursday 5 June, and a concluding event on Thursday 3 July.

Thank you to the Wellcome Trust for supporting this series of events and UCLH for hosting these events by the Progress Educational Trust.