Richmond Hill 101

Posted on 06/09/2015 by AnnaGoAnna

Number 62 on Greig’s list of 101 Things to Do When you Survive is “Enjoy a hot chocolate whilst watching the sun go down on Richmond Hill in 2015”.

I’m quite sure when Greig created the Facebook event on 5 August inviting some friends to meet him at Richmond Hill on 6th September for hot chocolate, he expected maybe 50 or so people would be able to make it. Hmmm I’m not sure that Greig truly understands the impact of his 101 Journey on all those who’ve read his blog or followed his social media posts on Twitter and Facebook. If you’ve not read why then click here. What’s different about Greig’s journey was that not only was it about him and for him, he chose to do something around the world for others and managed to include and inspire us all along the way.

Yes it was inevitable that there’d be a heap of people on Richmond Hill having hot choccie. They’d traveled from everywhere and even from the other side of the world to be there. Many people were sporting 101 t-shirts/sweatshirts (another project that Greig had organised to raise funds for Cure Brain Cancer Foundation and raising no less than £1,668.

Even the hot chocolate day at Richmond Hill was raising funds for another charity North of England Children’s Cancer Research and with donations and an auction raised £1,100 on the day.

AND we had an amazing day. The sunshine was out, great friends (old and new), virtual and real.

Typical Greig… tick off something from his List but achieve so much financially for charity but also for others to be part of this exciting day and visit a place that means so much to him… and now to all of us.

Greig, hope you now know that you were never alone on our journey… we all came along for the ride too!

Sarcoma Support

Posted on 18/05/2015 by AnnaGoAnna

Sarcoma UK‘s Annual report arrived in this post this morning with a little note “.. you may recognise a certain person inside :-)…”

Well there I am! Taken at the Sarcoma UK’s Big Conversation Day last year.My quote “Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. …” remains absolutely true for many today.

Sarcoma is rare. Divide ‘Sarcoma’ into types – soft tissue and bone. Then divide further into the different sub-types. Each sub-type is different with it’s own surgical regimen and treatment plan.

Now try and find others who understand what you’ve been diagnosed with!

(This doesn’t just apply to cancer or sarcoma. There are some very special/rare/unique diseases of other kinds that also must fear the unknown and isolation when diagnosed).

Fortunately with people having more access to the internet and feeling more confident to use it for support, this has meant a far further reach for support. Certainly I’m not sure how I would have coped had it not been for our wonderful Facebook Phyllodes Support Group members. For all the criticism about social media and all that is wrong with it, there is an enormous amount that’s right.

For those fortunate enough to be able to travel or live near a physical support group – Sarcoma UK run a number of support groups up and down the country as well as online forums. More information can be found here

Clinfield Conference – speaking!

Posted on 19/11/2014 by AnnaGoAnna

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.

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.

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.

After 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’.

Teresa 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.

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

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

Last 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.

There 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.

A novel way to celebrate 5 years since diagnosis

Posted on 16/10/2014 by AnnaGoAnna

When Greig Trout, the author of 101 Things to do when you Survive, messaged me to let me know he’d nominated me to take part in a BBC documentary, we had no idea that the filming would take place today, my cancerversary.

I’ll be honest and say that I have been more than a little nervous about doing it at all and the idea of ‘putting myself out there’ for all to see on the tellybox has induced more than a few sleepless nights. Greig had been asked to do the show and would, no doubt, have been brilliant. But the lure of more travelling, proving there is life after not one but two cancer diagnosis, inspiring others and raising awareness was too great for him and he jumped on a plane to Broome in Australia instead!

I can’t explain too much about today’s filming as the BBC want, of course, to have an impact with the show when it’s aired in January. My day started at 7.15AM when a taxi arrived to take me to the first filming location in the City of London. Stupidly I wondered how I would recognise the team I was meeting… until I walked in to a coffee shop to see cameras and lights set up and waiting for my arrival! (blonde moment). Nervously I was interviewed on camera. All the time worried about how I would look, whether I would do a good enough job and trying not to be emotional.

The next part of our day was crucial. I was to conduct an ‘interview’ on camera. I needed to be polite but to needle. I needed to enquire but to listen. I needed to ensure my questions would inform and that the answers received were useful. I needed to be Robert Peston but hope that little old me was an OK substitute.

The final part of the day was about me and filmed at home. ‘About me’ is never something I’ve been particularly comfortable with. I’m usually taking the photos or choose to hide at the back of group pictures. Unsurprising then that when asked by the BBC to find some holiday snaps of me, I had diffuculty locating ones with me in them! Ironic to think I am spending the day being filmed! I was interviewed on camera about my diagnosis and experience with having cancer. Having been in control of my emotions all day, I wonder if I might seem emotionless on camera. We also filmed me doing normal things at home, meeting a friend, juicing, writing this blog, looking at holiday photos etc. All to set the scene about me in the documentary story and why the topic is so important to be aired.

(In my kitchen!)

A very long day (11 hrs) and I was exhausted and emotional by the time the crew had left. Ironic in so many ways. Not least that the filming was taking place 5 years on from when I heard that dreadful phrase “You have cancer”. A milestone I marked with telling my story to camera. Hopefully the film will achieve changes in an industry that takes advantage of those who are living with a long term condition. Hopefully it will raise awareness of the issue and signpost those affected to the right place at an affordable price. Hopefully it will also raise awareness to Phyllodes by the mention in the piece. Hopefully this mention will mean that others diagnosed with this rare cancer will not feel alone and find others in the Phyllodes Support Group. Hopefully I did the piece justice…

Let me know : Rip Off Britain being aired in January.

PS Apologies about the ill-fitting jeans… my excuse – I’ve lost weight and got dressed in the early morning darkness!

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

Posted on 18/06/2014 by AnnaGoAnna

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 2)

Posted on 10/06/2014 by AnnaGoAnna

The second day of the conference began with me being fairly grumpy! The queue to get into the dining room for breakfast was stretching out to reception! After 20 minutes of waiting, I gave up. I only wanted a croissant and some fruit but it wasn’t to be as I was keen not to miss any of the conference… but no breakfast = grumpy Anna! Hilton Hotels get your act together!

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Plenary 3 – Global cancer surveillance: opportunities and challenges

Professor Julia Verne
Director of Knowledge and Intelligence Team SW, Public Health England

Plenary session in the memory of Brian Cottier (1951-2009)

1 in 3 will get cancer
1 in 4 will die from cancer

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Freddie Bray
IARC – International Agency for Research on Cancer
“World wide cancer burden”

Global cancer surveillance opportunities and challenges

Socioeconomic changes and how that impacts cancer incidence and survival.

14.1 new cases in 2012
8.2m deaths
32.5m living with a cancer diagnosis

9 cancers for majority of cancers 2/3rds of burden.

Globocan 2012 provides many graphs and examples.

The changing world – transitions
Major increases in the population coupled with increasing longevity has linked to epidemologic translations Including cancer, moving from infection related cancers toward a western lifestyle.

1 in 3 NCDs are cancers.

A great deal of information and graphs showing changes in some countries for increases in cancer and also decreases eg Japan have an increase in young people with cervical cancer. India have a reduction as marriage age is getting higher. Russia and Belarus have no screening and it has rapidly increased for cervical cancers.

Why registries are so important so we can track what is happening and measure it accordingly.

NCD agenda, of surveillance activities
Training and collaboration with cancer registries around the world. Try to ensure registries are in place to help with cancer control and also for reporting worldwide.

3 way split between high quality data, national and regional data and frequency data but 62 countries with NO data at all.

Current situation
Recognition of increasing global cancer burden.
Despite a long history of cancer registration LMIC have not developed PBCR
Link in with political agenda and tackling of NCDs

UN high level summit talks about cancer registries.
Global monitoring framework

IARC Technical Publication No 42 “Planning and developing population based cancer registration…”

Global Initiative for Cancer Registry objectives

IARC Regional Hubs for Cancer Registration in LMIC

Good data collection and methods of using and sharing data effectively.

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Dr Milena Sant
Instituto Tumori, Italy
EUROCARE 5 – survival of cancer patients in Europe

21 countries with a national registry inc 7 countries from eastern Europe.

50% of European populations including over 10m cancer cases.

Next steps for Eurocare

Reduce inequalities,
Treatment is not only solution for control
primary prevention, early diagnosis, accurate diagnosis – are all factors

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Sara Hiom
Cancer Research UK
The International Cancer Benchmarking Partnership’s Impact on Policy and Practice

What is the ICBP? – unique collaboration in terms of countries, international collaboration involving policy, research, cancer registry and clinical professionals at a global view.

13 jurisdictions in 6 countries
including Scotland for module 5

What are they looking at?

breast, lung, colorectal and ovarian

5 modules

Epidemiological benchmarking study
Public awareness, attitudes and beliefs
The role of primary care and healthcare systems
Variation in patient,diagnostic and treatment time intervals and routes to diagnosis
Data comparability and early deaths

Focus increasingly on the first year post diagnosis. Why are we not getting more patients beyond the first year survival which we can also see affects the 5 year survival statistics.

Module 1 – survival and stage table.

It’s not only early diagnosis that came out from this module and data comparison. It was also access to services and quality of treatment.

Module 2 – awareness and beliefs
Looked at differences in population. In the UK were our people less aware of the signs and symptoms?
Findings: ABC measure was born and has been used for surveying populations.
Generally speaking similar levels of awareness across all ICBP countries.
Generally low awareness across all countries of the increase factor of age.
UK – stood out the reluctance to visit a GP and wasting the Dr’s time. Elements of embarrassment i coming forward in the UK.

Be Clear on Cancer campaign to try to change the belief of wasting GP’s time or embarrassment.

Module 3 – role of primary care
Were there fundamental differences in systems?

Progress 2895 GPs responses to online survey and analysis complete in 11 jurisdictions.

Papers are about to be published.

Latest (unpublished) international data suggests that GPs in England:

Are less likely to send a patient for tests
Report having among the lowest access to specialist advice
Tend to feel more strongly about protecting their patients from over investigation and preventing a secondary care overload.

We need to look at the cost structure to overcome this aspect.

Module 4 – patient, GP and specialist intervals
Still underway…

Looking at via surveys patients, GP and specialist.
Looking at length of time between first noticing symptoms and time to GP and referral.
Collecting this information across the cancer pathway in 10 jurisdictions and comparing each of them.
Anticipated impact is focus in on areas with longest interval.

Module 5 – data quality simulation
Variations in cancer registry practices affect the comparability of key data used in cancer survival analyses

Look in much more depth of the differences in registries.

Should have a key impact on the best practices and developing tools that look at different factors.

Module 5.2 – short term mortality and co-morbidity
Not started yet…

Building on the legacy of ICBP. Lots of questions have left unanswered but needs to continue and keep it up on the agenda. Perhaps political policy will assist keeping it on the agenda particularly as comparing with other countries.

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Reducing Health Inequalities
Chair: Dr Tony Moran
Director of Research and Intelligence (North West) at Public Health England

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Therese Lloyd
Prostate Cancer UK
Lifetime risk of diagnosed with and dying from prostate cancer in different ethnic groups

Process of finalising a publication but as yet unpublished.

What do we know?

1 in 8 men in the UK will be diagnosed with prostate cancer at some stage in their life.

We know there are ethnic differences but don’t know how they translate into incidence and mortality.

Data and analysis
Few date issues that meant we weren’t always able to tell the ethnicity for over 1/4 of the data fields.
Total numbers of deaths in the data did not match up the total number of deaths in the office of statistics.

Several analyses in each ethnic group were done.
Best estimate but also larger groups to get a true value.

Used DevCan – system US.

Major ethnic groups analysed – white, black and asian.

Mixed – were difficult to obtain clear results.

Lifetime risk is calculated as percentage and odds.

Although there is a bit of variability based on the methodology used. Consistent message that Asian men (1 in 13) are at a lower risk of being diagnosed of prostate cancer than white men (1 in 8).

Black men are at a much higher risk, although much more variability the research evidences that approximately 1 in 4.

Best estimate – White 1 in 24, Asian 1 in 44 and black 1 in 12 – dying from prostate cancer.

Looked at data from 2008-2010.

When you compare the diagnose number and deaths all groups indicate that 1/3 (across board) will die once diagnosed. Perhaps there is no difference between the aggressiveness of the disease no matter what colour skin.

Need to reach out to BME communities to be aware of symptoms.

More research is needed and collection of perfect ethnicity data is needed.

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Chin Kuo Chang
King’s College London
A cohort study of mental disorders, stage of cancer at diagnosis and subsequent survival

Presentation

2011 cancers has seen the largest percentage of death in the UK accounting for 30% cause of death.
For serious mental illness it’s the 2nd or 3rd cause of death.

Big gap between the general population and people with serious mental illness (‘SMI’).

Only 1 team in WAustralia investigating this.

2 research questions (looking at data 2010-2013) CRIS
early symptoms ignored or not understood. Is the stage also affected when diagnosed.

Cancer linkage

Cancer register to include incidence of mental disorders
Trajectories of cancer treatments for ppl with SMI
Prognosis of cancer patients with psychiatric comorbiditiy.

Extending CRIS system to Cambriddge, Imperial – UCL, Oxford and Camden & Islington.

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Mark Rutherford
Research Associate, University of Leicester
Understanding deprivation and inequalities using loss in execution of life use to a cancer diagnosis (using only UK data)

Please refer to presentation

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Preventing Emergency Presentations – the need for research
Chair: Stephen Duffy
Wolfson Institute

We know that emergency presentation is particularly common in some cancers such as lung and bowel. Associated with a poorer outcome and may be associated with initial treatment from wrong specialist.

Emergency Presentation is more common in older people.

We need better understanding who’s at risk and what can we do about it?

Targets for today from the interactive workshop:

What are the major knowledge gaps?
What cancer sites are most promising for intervention?
What interventions are ready for evaluation?
Not simply to replace Emergency presenting with routine presentation. We want to replace with someone presenting 6-12 months before with stage 1 or 2 cancer.
Who should take this forward?
Very much in our hands as to which teams should take these interventions forward? Research fellows? Charities?

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Less Common Cancers
Chair: Jane Lyons
Cancer52

Cancer52-NCIN-Report-10-June-2014-FINAL

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Lucy Elllis-Brookes
NCIN & PHE
Setting the scene for rare and less common cancers

Presentation

Big 4 – breast colorectal lung and prostate
Less common cancers e.g. uterous, melanoma, ovary, kidney, CUP, pancreas, cervix, multiple myeloma
Rare cancers…. even more !

Rare and less common cancers:

What is NCIN doing?
Routes to diagnosis – increased look at cancer types and producing data from them 22 in 2010 and 57 in 2014.

Deprivation reports – 23 in 2008 and 37 in 2014

Site specific Clinical reference group work (recent examples)

vulval cancer – trends and variations by age
kidney cancer survival report
penile cancer incidence by age

What do rare and less common cancers have in common?

Each cancer site shows different results.
Different analyses will be required
Specialist advice (clinical and analytical) is crucial.

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Oksana Kirichek
University of Oxford
Menopausal hormone therapy and risk of central nervous system tumours: a nested case – control study

Aim of study:

Is Hormone therapy (HT) associated with risk of brain and other CNS tumours
To test whether the effect of HT varies type, duration or recency of HT preparation used.
To assess the effect of HT exposure on the risks for all CNS tumours

GPRD General Practice Research Database

Holds primary and secondary data. cross linked with other databases and person specific.

Definition of cases

Results
No significant difference in risk by tumour subtype

Conclusions

UK GPRD cohort women who had been prescribed HT
HT associated risks did not vary significantly cross the four main tumour subtypes examined
Findings from the GPRD agree with those reported previously from other studies with prospectively collected information on HT use.

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Nicola Dennis
Knowledge and Intelligence Team (W Midlands)
Incidence, survival and treatment patterns for patients with head and neck sarcoma

Presentation

1% of all malignancies in England are Soft tissue sarcoma
Narrowed down to head and neck the numbers are even smaller

With the very small numbers of incidence there are limited studies looking at incidence and survival rates.

Both Improving Outcome Guidance in 2004 and 2006 specifically had improvements for head and neck.
Because of the small numbers its hard to see if anything has changed.

4796 head and neck sarcomas in 1990-2010

MDT specialty – positive outcomes since the guidance was set out where we can see that there has been a significant increase in referral to the right MDT specialty.

Patient spread for surgical treatment. Data shows that there are number of trusts that might only have treated 1 patient in the entire 10 years of the study!

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Kwok Wong
University of Birmingham
Risk of Adverse Health and Social Outcomes up to 50 Years After Wilms’ Tumour: The British Childhood Cancer Survivor Study

I will post a link to the presentation once available.

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Plenary 4 – Delivering outcomes that matter – Panel debate with Q&A to the panel
Chair: Robert Peston, BBC’s Economics Editor

• Mr Sean Duffy, National Clinical Director for Cancer Services, NHS England
• Mr Ciaran Devane, Chief Executive, Macmillan Cancer Support
• Professor Peter Johnson, Chief Clinician, Cancer Research UK
• Dr Jem Rashbass, Director for Disease Registration, Public Health England
• Mr Andrew Wilson, Chief Executive, Rarer Cancer Forum

Ciaran Devane – Chief Exec – Macmillan
We need to move to a strategy when we think in a different way rather than the economics.

We are talking a great deal about the value of services and NHS etc rather than the value of and to the individual.

Changes in the NHS – are we spreading our resources too thinly?

Sean Duffy – National Clinical Director for Cancer NHS England
No doubt the point of contact for you within the health service should be the most important thing. We’ve not yet got it right. If we’re going to visit better outcomes then we need to tackle the first point of contact too.

We don’t wrap the system around the patients enough.

In terms of the data itself – it’s easy to look at national data and say were good at this or that. We can look at a local level. We need to create ownership of the data around the geographies to be sure their own data is better and is owned. Working collectively to gather for the greater good.

Rich national dataset that we can and must use but we haven’t yet made great inroads in it. Need to make more out of the data.

Finally, with such a rich set of data and the ability to intelligently obtain information from it. We need to get cleverer at using the data in order to year on year look at the services to ensure we can achieve the best.

Prof Peter Johnson, Chief Clinician, Cancer Research UK
Echo the good things said about NCIN and the work they do. No doubt research using the data has been saving lives for many years. We know more about how to reduce the risk of cancer and determine the best treatment and long term outcomes.
How are we going to improve further and get up and beyond the levels of other countries?

We know there are at least 10 different types of breast cancer. We know asbestos causes mesothelioma.

Key obstacles we need to address: Regulation – looking at EU regulations and ability to track patients through system and outcomes will be compromised if EU data systems come in. We must at all costs make sure work is not held down by regulations.
Changes in the health systems recently has given us problems. Relationship with the information centre CPRD and difficulties of joining different data has given us delays and loss of capabilities in the Registry. This has stopped us doing as much as we would have liked and can achieve.

Public perception of data and it’s management has been undoubtedly damaged by care.data. This was a fundamental problem and unsettling. We have to overcome this. There have been ZERO breaches in any confidentiality of the Cancer Registry.

25% to 50% alive 10 years from diagnosis of cancer. CRUK want to bring this to 75% in the next 10 years. We need data to understand this and move forward. Stratified medicine has to understand at a detailed molecular level. We will only be able to capitalise on that if we can get the data systems right and keep them functioning.

Data is a precious life saving resource. Do not take it for granted. Fight to maintain the system that we have.

Dr Jem Rashbass, Director for Disease Regulation PHE
Worth reflecting on how we got here and what this is about We have had earthquakes of public trust. This is YOUR clinical information that we collect and we are duty bound to look after it and my responsibility to make sure that I protect patient confidentiality.
As Peter has said the support we’ve had over the years to look after your data and you can request it’s removal from the Cancer Registry.

This is about delivering care to individuals. You’ll treat them on the basis of the stats but as we move to personal care it’ll be the molecular abnormalities that determine your outcome.

We need to maintain the public support for data collection and NCIN database that puts the potential for cancer care in this country further forward than anywhere else in the world. In the next 5 years we will have extraordinary ability to provide the most personalised cancer treatment.

Andrew Wilson, CE Rarer Cancer Forum
Current state of play for data. Clear that public feeling has been shaken. Rarer cancers are rare. Data on rarer cancers will be much more identifiable. Huge amount of exciting work going on using data for rarer cancer.

Use of data in rare cancers. Hidden cancers and less visible to the public.
Huge demand for this sort of data. Need to meet this and produce reports that are useful.

NCIN route for diagnosis project showed ongoing problems for cancer patients go far beyond those related to cancer.

We need to be much more open with the data that we hold. Ensure patient identifiable information is removed from data sets. Once this has been done the data that we have is published. Closed shop needs to go. Automate data flow around the system to ensure sticking to rules and make better use of data that we do at present.
We need to work collaboratively to come up with solutions where problems exist.

Q&A
Q – How can we ensure the diagnostic experience for young people is improved?
SD – we have a first point of contact system designed 60 years ago. We need to tackle it externally and internally. Simple things needed – proactive approach to primary care. Safety netting – young person with a set of symptoms its probably the last place they want to be… be proactive and should raise a flag for tests. We have created a mechanism whereby the referral is the only route – needs to be challenged. GP should be able to make a clinical decision on the basis of facts not ask the patient to wait!
JR – We need to recognise that a missed diagnosis is one that everyone inc GP regrets. However some cancers in a young person are difficult to detect. They are rare. Symptoms and signs of a brain tumour are subtle. No of patients that a GP sees with those every week, it’s difficult to identify. Where the value of the dataset comes not from surveillance but that we should learn from every case. How do we raise our game?
SD – there are risk assessment tools that allow patients to flag up symptoms.
You can start to identify in an active way any of the GP patients that maybe at higher risk using some of these tools and data set.

RP – GPs feel they don’t have the level of control and responsibility due to other constraints about referring and cost.
CD – The guidance at the moment is written to say send us these patients but often the ones that don’t fit that mould are overlooked because they don’t fit that picture.
Be Clear on Cancer – enables the patient population community to know what to ask for and what symptoms.
PJ – I think there is a massive amount of data that tells us a lot about patterns of referral. And the outcomes from this. Feeding the information back into the system is incredible important.

Q – As a researcher the amount of time it takes to get access to data approved throughout he current regulatory approval system. Is there a strategy to help researchers get access to the data and make use of them in a more timely way.
JR – Richard’s experience shared by others. We’ve tied ourselves in knots frightened about releasing data and protecting the confidentiality. We need to recognise what you want us to do. Inside PHE we are trying to deal with it and create the structures to manage the data release. The demand for the data is large. We have disadvantaged ourselves by separating the people who pull the data and those who analyse it.
I think we do need a clear process of maintaining that public confidence.
Complex area but we need to be better at giving data confidentially.

RP – What is your attitude to selling data?
JR – Govt data is not available. Not a resource from which to make money. The data that we collect on you is for the social good BUT need to protect patient identifiable.
Financial constraints on delivering personalised health care will not be cheap. We need to enter into the discussion with industry to pay a fair price and benefit.

Q – How big a threat to our ability to gather and use data would changes be that require consent to use the data each time? This would negate the value of a Cancer Registry.
A – It’s a risk and will undermine everything that we’re trying to do. We need our MPs to change this view and to ensure that this change does not take place.

Q – One of the ways that we can prove that consenting to use of data is to show the public how the data can be used for good and can be done.
CD – Hugely disappointed when cancer networks became unpopular. People didn’t believe in coordination. We need to make use of the strategic clinical networks. Make sure the patient voice is embedded in the senates, and clinical settings. We need to be more assertive and move together.
JR – Some basic processes. Transparency and openness. Audit – any patient can approach and ask who looked at my data. Every patient who wishes can have access via a patient portal like the brain hub. An absolute right of opt-out. No process that makes it difficult to do that. I think that is what is needed to protect the data set that we’ve got and we need the community to act and educate the wider audience.

Q – Despite significant Govt rhetoric influencing the NHS work we need to collect ht patient voice at and put it back into the system. How can we go about changing this?
SD – I believe in the patient voice entirely. Within NHS England the patient survey is the most successful at influencing. We need to make more use of it.

Q – NCIN was founded in 2008 with mission to provide the UK with the best intelligence in the world. What does the panel think the new mission for the NCIN should be to take us forward in th next 5 years.
JR – We need to move somewhere else. I want a low level objective to make the patient and the clinician at the centre of the data store. So you can ask where am I in the system? You can check you’re getting the best and ensure that no cancer is left out. Patients and the public at the centre for cancer.

RP – When you collect data that is at a granular level are you recording it?
JR – Yes we are. We need to know what receptor it has. If it responded to medication. etc etc. Absolutely linking it into all sorts of datasets to look at a much bigger picture and make it more personalised.
PJ – 4 years of outstanding progress and 1 year of challenge. I think it’s time to reaffirm the quality of the data and now we need to see it and put it in front of the people who generated it, people, public, patients, clinicians etc. Want to see equally superb access to it.
CD – based on outcomes not last year’s data.

Q. – When a patient comes into hospital with advanced cancer, the patient has rarely been recording if they’ve been attending primary care prior to emergency presentation?
Should we incentivise GPs by giving them QoFs? Perhaps to embed good practice for a period of time.
PD – Both London integrated cancer centres have been involved in looking at attendance of A&E and that will give us some answers about the gaps. I do think there is something about incentivising a better pathway of care. We need to use everything in our power to make the system work.

NCIN Conference 2014 (Day 1)

Posted on 09/06/2014 by AnnaGoAnna

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

#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.

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

Posted on 05/06/2014 by AnnaGoAnna

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

Posted on 08/05/2014 by AnnaGoAnna

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.

Sarcoma UK Voices – The Big Conversation

Posted on 22/03/2014 by AnnaGoAnna

Sarcoma UK are today holding their first Voices event. ‘Changing the landscape for sarcoma’ AKA The Big Conversation.

An early start for me to travel from London to Birmingham for a 9am start. Eeek that’s a time of day I try to avoid and I can report that the only others I spotted as I ventured to the tube line was 1 dog walker, 1 jogger and the binmen!

If I’m honest, I wasn’t sure what to expect from today. I’ll do my best below to summarise for you.

9-10am – Registration. I was very pleased to see some familiar faces and be able to catch up with them, find out how they are, what’s happening in their lives and receive/give a few hugs too! I so value the camaraderie between patients, carers and patient/carer advocates. The positive actions of each person attending and sadly often news of those who have passed away.

10-13:00 – The Current Landscape for Sarcoma

Welcome – Lindsey Bennister and Roger Wilson

I have attached links to the presentations given however have also added a few of the notes/highlights that I wrote down during the day.

Key challenges in sarcoma – Presentation 1 – Professor Rob Grimer, Professor of Orthopaedic Oncology at Royal Orthopaedic Hospital Birmingham; Sarcoma UK trustee

As reported in the Mail newspaper – 1 in 4 cancers are missed or misdiagnosed in the UK. However the headline they omitted was – 90% of sarcomas are missed or misdiagnosed in the UK.

1% of radiotherapy patients may get a radio-induced osteosarcoma in later life.

85% of people with 4 of the following ‘signs’ will be a sarcoma:
– lump larger than 5cm
– increasing in size
– deed to the deep fascia
– pain
– any recurrence of a previously excised lump.

Only 15% of sarcoma patients make it onto the 2 week wait rule.

Average time that people live with symptoms BEFORE visiting a doctor for sarcoma is 1.5 years.

Shocking results that younger people don’t tell their parents/teachers/friends about lumps until they have to! Speak out about lumps – the earliest they are diagnosed they can be excised and treated.

Rob also spoke about a campaign that was carried out with GPs and golf balls. The premise was to alert GPs that any lump bigger than a golf ball (42mm) should have a diagnosis at a specialist sarcoma centre. Help spread the word!

The sarcoma patient experience (findings from the National Cancer Patient Experience Survey) – Presentation 2 – Reg Race, Quality Health

Reg talked about the changes that have been influenced by the National Cancer Patient Experience Survey and some of the information that was highlighted by the results. For the most part the attached presentation slides are self-explanatory but the main highlights were:

Patients with a named cancer nurse specialist have a better prognosis. We need to ensure that within the NHS CNSs are available to all.

Did you know you were entitled to free prescriptions when undergoing treatment for cancer? Most don’t but the difference in cost to a patient can be crucial to them keeping up with the drug treatment.

Not enough information about sarcoma available AND given to patients. How can we improve this?

Sarcoma patients fare badly in referral and diagnosis times. More awareness needs to be made to the public but also referral routes for the professionals.

There is still a large (unresourced) quantity of emotional and psychological aspects to a sarcoma diagnosis.

Education for the younger population to be ‘body aware’, open to speak with adults about concerns and to report lumps and bumps when they first are noticed.

Some improvements have been made and we, collectively, need to continue to get changes made.

NHS sarcoma services: how are sarcoma services set up in the new NHS? – Presentation 3 – Professor Jeremy Whelan, Professor of Cancer Medicine & Consultant Medical Oncologist at The London Sarcoma Service, University College Hospital; Chair of the Sarcoma Clinical Reference Group

This presentation (see attached) shows in detail the structure (as it stands today) for the NHS within the new ‘world’. This may well change. However it’s clear from the slides that it’s complex, there are a great deal of aspects to consider and there are voices much louder than the sarcoma and rare cancer ones. We need to ensure that we are not forgotten. That our pathway is as robust as that of other more common illnesses.

Maximising the voice of sarcoma patients and carers in changing the current landscape – Presentation 4 – Derek Stewart OBE, Chair of Throat Cancer Foundation; Associate Director for Involvement in National Institute for Health Research, Clinical Research Network UK

Derek, as always, gave a truly engaging presentation. Derek spoke about the importance and value of the patient/carer voice. The various places that you can be involved and the level of involvement that you may wish to offer. There is much more available than there ever was and don’t be put off and assume it will become a full time job! Some committees and boards only meet twice a year. Others more often. Some roles can be done by email or online feedback and others require you to attend offices. Some simply by speaking about sarcoma or offering to drop in leaflets to local medical facilities.

The important message however is that no matter how you are involved, your voice is crucial to ensuring improvement and changes for the sarcoma landscape.

14-16:15 – Changing the Landscape for Sarcoma

There were four workshops arranged for the afternoon and we were each asked prior to attending the day to choose two to attend.

Supporting others/protecting yourself – practice techniques – Jo Ham

I had chosen this session as I have, within the past 4 years, supported others, spoken at events and participated in conferences without thinking about the impact it has on me. Of course I’m happy to give of myself whenever asked however often ‘retelling’ my story or delving into my experience can take me back to a place I never wanted to return. Supporting others I’d like to be better at, listening without offering answers or advice is something that I know I can improve upon. Lastly, loss. Losing friends to cancer, whether they be people I’ve known for years or know because of my diagnosis, is incredibly tough. Learning how to manage those emotions but not to switch off and stop feeling is also something I’m aware of needing.

Jo Ham, the facilitator for this session started by turning the workshop heading on it’s head. She explained that we should protect ourselves BEFORE helping others. A little like the oxygen masks on a plane – fix your own before helping anyone else!

Jo explained some techniques to protect yourself relating to anxiety, relaxation and breathing. Noticing anxiety appearing and how to take control of it. The A-W-A-R-E technique: Accept the anxiety; Watch the anxiety; Act with the anxiety; Repeat the above steps; Expect the best.

She explained about Dr Siegal’s hand model of the brain and how to use it effectively. Here’s a great clip

Breathing into the diaphragm and counting… in for 7 and out for 11. The 7/11 technique.

Below is a picture with a couple of the exercise notes. You should be able to click on the picture to enlarge and read.

We then did a short exercise about ‘reflective listening’ to help us support others.

A very useful workshop but indeed way too short in time to really be effective. Many of the exercises and principles were similar to ones I’ve learnt at Penny Brohn Cancer Caring Centre in Bristol. I was pleased when another workshop attendee suggested that people should get in touch with Penny Brohn and attend a Living Well course. Within my feedback and a conversation with Lindsey Bennister, I also suggested a collaborative event with Penny Brohn to host a Living Well course.

The power of your personal story: how to tell your story to raise awareness and bring about change – Graham Bound

Graham’s introduction to this workshop was to tell us about his experience with sharing his story, raising awareness for Sarcoma UK and the profile of Sarcoma generally. His background is as a writer (http://www.penguin-news.com/index.php/component/flexicontent/23-features/25-a-stange-sense-of-bereavement-by-graham-bound) and therefore has experience of dealing with written publications and telling your story. Graham explained his ‘journey’ and how valued a patient/carer experience is in so many ways. He spoke about how to write or be interviewed for a piece, the pros and cons, pitfalls and tips and tricks.

The main point was to ensure that we not only mention cancer but our types of rare cancer, Sarcoma and the charity Sarcoma UK in as many appropriate places as possible.

Graham’s account was very insightful, from the point of someone who has used the written word to speak about his experience and raise awareness. I wonder though if this workshop should be co-hosted by a media professional who can provide small vignettes and tips and tricks to work with the media – TV, radio and written word.

Final Plenary – Lindsey Bennister and Roger Wilson

I don’t think I was alone in wondering where the day had gone. Seriously it had flown by in what seems like minutes. The closing plenary reflected the same.

A wonderful day, too short in time, lots covered and lots to take forward to making it an annual event. Clearly it was a valued day by so many people. People at differing stages of their experiences and journeys and I hope one where all attendees came away with ‘action points’, clarification and new friends. I also hope the ‘professionals’ present also learnt from their day with patients/carers.

AnnaGoAnna Wallace

Glass, craft and me

Category Archives: Living Beyond Diagnosis

Richmond Hill 101

Sarcoma Support

Clinfield Conference – speaking!

A novel way to celebrate 5 years since diagnosis

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

NCIN Conference 2014 (Day 2)

NCIN Conference 2014 (Day 1)

PPI Group – Imperial/Cancer Research – Meeting

Risk Assessment: Breast Cancer, Prediction and Screening

Sarcoma UK Voices – The Big Conversation