Patient Involvement In Cancer Care.

Patient Involvement In Cancer Care.

The last few weeks have been a bit of a whirlwind with so many positive things happening, it’s been very difficult to actually review the impact until now. Firstly, I have been receiving some innovative holistic treatment for the last few months, which is beginning to make an incredible difference to how I am able to focus my life. I would like to thank my incredible team at St Georges hospital for helping me and encouraging me to find the appropriate support. If I’m honest I don’t think it is a coincidence that good things have happened since I have started to be able to view my life differently. My confidence is slowly returning, and with it my enthusiasm for the challenges that lie ahead, both personally and professionally. Confidence plays a major part in our lives, and I struggled to understand why it was draining from me as the years went on.

It wasn’t something that was ever in short supply in my life, but with continual health uncertainty over many years, there were many occasions I didn’t even want to leave the house! So as my demons tried to pull me down I did my best to push forward with my work and became empowered by my illness. Entering areas I had never been and facing challenges I never thought I would be, after all what did I have to lose as my life has been hanging by a thread for some time? In recent weeks I have given two very important presentations to really contrasting audiences, both with a very different impact.

My first was in London for my friends at Dimbleby Cancer Care, who were running a celebrity quiz evening and wanted me to remind people why they were actually giving their money. 12022381_1073910499293253_353166287021246753_oIt was an incredible few minutes for me as the room fell extremely quiet whilst I spoke. As I returned to my seat I was congratulated by many people who are presenters on television saying how powerful my talk had been. But a couple of days after that I was flown to Lisbon in Portugal to present to a team of international executives from a large pharmaceutical company, who wanted to hear from me about how their treatment had improved my life. A doctor spoke before me, about why he used the treatment, then I completed the session about how the treatment had impacted my life. It was an incredible experience to have all the links in the treatment chain talking together and sharing experiences!

For the last seven years I have worked in between my treatment to do my best to ensure, that people were aware that living with cancer may just be the start of another struggle, now known as ‘survivorship.’ Of course anyone who is able to survive a cancer diagnosis is extremely grateful for that, but that is now no longer enough. Our medical system is full to bursting point but economically and socially if we do not do something practical soon, I feel we will have a very divided society. So I was delighted to receive a recent invitation from N.H.S London to share my views, as a guest speaker and expert panel member at a conference in London on the 29th October.  I have done some work previously for this team who are in charge of cancer care in this country, and I am delighted that they see the long term value in collaborating more effectively with patients.

Finally I have also been invited to help train new starters at Anthony Nolan, by sharing my in depth knowledge of the stem-cell transplant process. Finishing ECP treatment Dec 2014This is a fabulous opportunity for all of us, which will ultimately mean that more people have a greater understanding of the impact that blood cancer and transplant can have on people’s lives. These are just several examples that I am seeing personally, of dialogue now beginning to open up between service providers and patients, who are actually ultimately the customer! Coming from a business background, I have never really understood the reluctance from health organisations to involve the patients in any serious decision making. My experience has shown me that in most cases we were in attendance purely so a box could be ticked, without really ever playing an effective part in the process. Don’t get me wrong, this has never been a speedy process, but I have seen a dramatic improvement recently.

I have been chipping away via my personal work for more than seven years, I never believed it was in vain, but when you are affected by cancer, time is rarely your friend. However I am feeling that the key decision makers in this process totally understand the issues, and there is a real intent to improve things. According to official sources, by 2020 50% of us will be directly affected by cancer, so doing nothing is not an option. Surely if all parties can work together, we can make life so much better for people affected by cancer, which is really all of us, as I am sure everyone knows someone who has cancer. I will be doing my best to ensure that this progress is accelerated and not lost ‘in the long grass.’

As always, the above is my personal experience and views and it would be great to hear yours. Do you feel that the patient voice is becoming more important? Are you able to get your voice out there? Can you see improvement in how we are dealing with the issues around cancer support?

The Grove Hotel Bournmouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

14 Comments
  1. Hi Chris,

    I also come from a business background, was married to a surgeon, and never understood the myopic perspective of the “medical model” except for its ego and inertia. I am heartened to see some awareness of the human dimension of the experience; it’s long overdue.

    Cancer rehab is a hot topic here in the states. Many well meaning medical people are creating “models of care”. But in my mind, the tunnel vision of their medical experience limits their ability to understand the actual human experience of cancer. Weigh ins and checks on charts are not survivorship care. In my mind, it involves a patient’s willingness to evolve their nutrition, exercise, stress and social habits to insure a balanced, healthy life. Quite honestly, such a life is the antithesis of our modern western culture and certainly isn’t present in the interventional oriented “medical model”.

    Einstein once said you can’t fix a problem with the same energy that created it. I think we need a “model of care” that is about health, not illness; about the patient, not the medical professionals; based in the community and home, not the hospital; and leverages technology for connection and re-inforcement. One of the things I plan for the Anti-Cancer Club is on line meetings where we can learn, share and evolve. Survivorship is about more than medical tests. It’s about learning to be healthy and whole, whatever that means for you, while having to adjust to a new body and often a different perspective on life. It’s an unexpected new beginning. How will you manage it?

    Take care and be well! Carpe diem, today and everyday!

    • Hi Pat, I couldn’t agree with you more! You have written so eloquently about the issues that are not only for the States unfortunately. It is exactly the reason that I am shouting about true patient involvement, where we are also involved in key decision making, not just turning up for a cosy chat with tea and biscuits.

      There are now many people contacting me from large health organisations who understand they need to change the way they work. We are just not properly equipped for survivorship on the scale we are now achieving.

      My best to you too and of course Carpe diem everyday!

  2. Chris, you are amazing! Sooo well done for achieving so much whilst struggling with not always feeling great, the tiredness, emotional toll, loss of confidence and everything else. I’m sure your talks and the personal insight you can give have a huge impact on all your audiences. Health care and pharmaceutical professionals definitely need to listen more to the patient voice and understand the true impact of cancer and its treatment on individual lives. Well done for making a difference. You should feel very proud of yourself. Thanks on behalf of all of us in the same / similar position living our difficult lives with cancer. Big love and hugs, and huge respect! xxxxx

    • Thx so much Soraya! As you know from your own experience, it can be extremely tough at times! But this work just feels the right thing to do, and it has helped me focus on something positive, and enables me to use my business skills too. As you know we can’t work alone so your support means a great deal, helping to get the word out there to your community. We all want the same things, and it is a great pleasure working with you xxxx

  3. Well done Chris – sounds like an exhausting but rewarding time for you – all very positive

    • Thx Ken. Yes it is tiring for sure, but when you can see progress the pain becomes a little less! As you are well aware, sometimes you can wonder if you are making the right decisions, so these sort of times can be a great reassurance.

  4. Well done on everything Chris; life after cancer is an uphill struggle at the best of times but add in all the work you are doing and its a wonder you manage to fit everything in. It is great that organisations are listening to you and hopefully what you say will benefit other cancer patients in the future. xx

    • Thx so much Kaz! Yes it is difficult and is gettting harder as demand increases, but the people I work with understand my personal situation. We have come so far in this time to let things slip, so must continue as long as I can. Thank you so much for what you are doing too, together we are stronger!! xx

  5. Chris this is fantastic! The work you do is just amazing, I’m so pleased you are noticing a difference and feel the people’s voice is now being heard!

    • Thx so much Cerrie, and I appreciate the part that you and your team are playing too!

  6. Very well done Chris!

  7. Thx so much Eleni! It is certainly a long road, but great to see daylight at times!

  8. So pleased you are on our side Chris.

    • Thx so much Alison! It is a massive task but as they say every little helps! There is a lot of fab work being done now and I’m just pleased to be able to use some of my business skills, to connect people, and try and influence improvement for people affected by cancer. Tu for your support x

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