With thanks to my recent collaboration with the Academy of Fabulous Stuff run by Roy Lilley and Doctor Terri Porrett I am having many more conversations with N.H.S health professionals who are interested in my views around cancer support. Of course we have different perspectives of the problems but I am yet to find anyone who doesn’t agree these services could be a whole lot better. Below is a piece written by Dr Oliver Minton, after a conversation we had recently. Purely by chance Ollie is a Consultant at my own hospital, and he gives his own views on the subject! (Please note that the picture used in this piece is NOT Dr Minton)
“I was invited to attend the inaugural cancer survivorship conference in Brussels—at the time our interests aligned (and indeed still do). The conference felt different with patient groups, bankers, actuaries and even royalty alongside all the usual suspects. I left feeling hugely positive about what could be achieved with governmental and organisational backing. However this was in 2014 and as we all realise the world is now a different place.
The cancer strategic direction has turned more to personalised medicine and potentially a focus on immuno-oncology. Blockbuster drugs and science will always make good headlines, but for many patients are diagnosed, treated, and cured of their disease and have to live with the sequelae of treatment. This goes beyond follow up appointments and blood tests, fear of recurrence, and into resuming normal life with work, family etc.
Figures for those living with or beyond cancer “survivors” will vary depending on how you define it but conservatively 3-5 million in Europe. The largest numerical group this happens in is breast cancer – you’re diagnosed with cancer but it is picked up early and treated usually with a combination of things and you are cured. I do not mean to minimise this but for many this is their “journey.”
As a result if you google any support groups or look on social media there are a myriad of people to turn to for advice and practical help. There is a hashtag #bcsm (breast cancer social media) , indeed there is a whole oncology ontology for every type of cancer and treatment. This has been produced by my learned virtual colleague Matt Katz (@subatomicdoc). There is a survivor perspective provided by Marie Ennis O’Connor (@JBBC) amongst others. I have been particularly struck by these aspects of being engaged in healthcare social media.
America will always do things bigger and better—MD Anderson have a bell that’s rung every time someone completes treatment , the American cancer society has a national survivors day with tips for health promotion alongside. There is also healthcare resources for veterans. We in the UK adopted Livestrong for a time with the ubiquitous wearing of a yellow bracelet. We also had the awareness raising Movember and annual moon walks and endless charitable events.
I don’t think there is a lack of awareness of the impact that cancer has on our lives more broadly—the many charities see to that. There is a specific awareness of the needs of those who are living beyond cancer—even the term survivor has helpful connotations akin to the battle and war metaphors used when “fighting” but I use the term as at least it is recognised widely.
There is a sense that most responsibility falls on the individual so far and perhaps this is true but there is a professional onus too. The last health care professional you may see before being discharged back to your GP is variable—surgeon, oncologist, clinical nurse specialist and so on.
There is also an assumption everyone needs the same things and degree of follow up. This is slowly changing but the national strategy did not address this in detail although Macmillan have encouraged the use of individualised treatment summaries and plans. There have been no significant changes to this since 2014. The onus falls to the patient & once again to primary care. The level of knowledge has increased about the medical effects of treatment such as on the heart and bone density with well-funded cohort studies. However in practice the links back to the necessary services within secondary care are haphazard at best if several years have elapsed.
Best practice means an individualised contact through a CNS or designated support worker but the availability varies and initiatives come and go. This is much more rigorously enforced during cancer treatment and the benefits on patient reported outcomes are well recognised through case studies and targeted commissioning.
I would like to see the same rigour applied beyond the immediate end of treatment and given the funding it needs. I don’t need to attend another conference but facilitating further collaboration nationally and indeed internationally would help. This isn’t about updating a strategy or updating NICE guidance to promote supportive care or health behaviours.
This is recognising the impact that over 1 million people in the UK alone who have been successfully treated for cancer and are resuming their lives and who need coherent guidance and support. It is too important to be left to the engaged connected communities or to a campaign that sparks the public’s imagination. Nor can we ask GPs to manage the complex range of problems in primary care.
I appreciate there are other life events or diseases that can have a similar impact such as heart disease but there is not the spectrum of ages and sheer numbers that are affected by cancer and its treatment.
I am not calling for another hashtag, report or necessarily more money but to put cancer survivorship back high up on the agenda as either directly or indirectly its impact is immense.”
Oliver Minton is a consultant in palliative medicine with an academic interest in the long term effects of cancer treatment. He tweets @drol007
Competing interests: I am Macmillan consultant and secondary care adviser and the trust is funded for one day a month for me to undertake this.
Below is my own reaction to how I felt when leaving the hospital after transplant.
I would like to thank Dr Minton for sharing his very eloquent views and opinions on the current situation regarding cancer support. As always it would be great to hear yours!
Chris this is something I feel passionate about since completing treatment for primary Breast cancer at 34. I requested to take part in a rehab/back to fitness course with my health trust a year ago & it still hasn’t happened. Only for the fact I’ve got off my backside and done it myself I dread to think the state id still be in physically & mentally.
Unfortunately Sharon it was exactly the same for me, and is for most of the people I talk to. I am shocked that from a social and economic issue this situation is allowed to continue. It seems that you are forgotten about once you leave the hospital. I am running a campaign about survivorship and am talking to a lot of HCProfs. It was great to get Oliver’s perspective as he also sees that we can’t continue as things are.
Very interesting read as always Chris I still feel we who have survived cancer are forgotten, that is my thought and I have been so thankful for your support and blogs thank you love to you and your family xx
Thank you Georgine, it certainly does feel like that. We are doing our best to change that situation. Thank you both for your fabulous support which is so valuable in the work I do. xx
My findings exactly. Chris, do you mind if I share this?
It’s the same everywhere I go Karen, and I will be talking about this a lot in the coming weeks! Please feel free to share. The more people that join in this discussion the better.
Thank you Chris, and excellent read and interesting to hear from an oncologist on this issue too. Survivorship is a concept I think a lot of people struggle with, and I find the word itself makes me feel uncomfortable because that’s what other people often tell me I am, but being stage 4, and yet having so far done pretty well to still be here, I don’t want to count my chickens by even whispering that word! This has certainly made me think and I think it will for others too – so sharing on Coke Floats with thanks. Hope you and the family are well xx
Hi Yvonne, many thanks for your comments. Yes, I guess like you I have many private conversations with HCP where personal opinions are exchanged, but Ollie wanted to put his down in writing. We know that many in the N.H.S think the same as us patients but find it difficult to talk publicly. But things are beginning to open up now as surely what is better for the patients is good for the system? This post has certainly provided many with food for thought. I think we all feel the same way about the word survivorship, but at this stage everyone does understand what it means. All good hear thanks Yvonne and hope the same for you and your gang. xxx
So pleased everything is good with you. And it’s so encouraging that there is a shift in openness and culture taking place within the NHS. I wrote a very upbeat cheerful blog about our wonderful experience at the dentist with Toby this week – it’s not just in cancer medicine where things are progressing, Toby’s learning disabilities are becoming more catered for, generally staff are bringing down the barriers that caused a “them and us” culture, and I now that both you and I and dozens of others are continually banging the drum in our little way to help it happen faster! Ollie’s post was excellent and a very encouraging read indeed. And this word “survivor” does it apply to us or only to those who have had treatment and come out the other side without a stage 4 diagnosis hanging over their heads? I just don’t want to tempt fate by applying the word to me!! Take care and lots of love xxx