The power of the ‘patient voice.’

The power of the 'patient voice.'

This week has been an incredibly busy, but extremely satisfying one. On Tuesday I was the guest speaker at St Georges Hospital in London, where I was invited to talk to a selection of staff and patients about my personal journey and  how it has affected my life. This was a fantastic opportunity for everyone to learn from each other, and particularly to help staff understand things from the patient perspective.

This particular engagement meant a lot to me as of course it is my own hospital, and an opportunity to engage with the staff in a very different way to the normal patient/Consultant relationship. All of the staff had read and heard about my work, but few had actually seen me present live. Patients had also been invited, all with various degrees of experience, who were interested in my story. Once I had related my story, we opened up the floor to a Q+A session, which I found to be very powerful. It was interesting to help staff understand the emotions that people go through after a cancer diagnosis and treatment.

BMT day St Georges 2014

However, the most moving part of the day was when a lady stood up and announced that she had brought her husband along to hear my story and meet me. He had been diagnosed two years ago with the same rare cancer as me (Mantle Cell Lymphoma,)  and they had never met anyone else who has had it! I have always known how important it is to share experience, which of course I do via social media and this site, but it means so much more when you actually talk to people face to face.

Having the opportunity to talk afterwards enabled me to meet many other patients who were keen to share their own story, and learn from my experience. But as important was the reaction I received from the staff, so many commenting how much they had learned from the session and the experience of talking to patients outside of the clinical environment. An opportunity to understand the real person behind the medical notes!

I know my team were tired of hearing me tell them about the benefits of this type of interaction, and of course I understand fully the logistics of arranging functions like this in a hospital, but now it is done, I can already begin to see the effects. Positive feedback came quickly, and I have already been invited back to help with staff training days, which is fantastic! I have also heard from several patients via social media how useful they found the session. But this was not something that has happened overnight, and I have been campaigning for this type of interaction for many years, and this presentation actually took eighteen months since it was originally discussed. However I am encouraged to see that we are making progress, even if slower than I would like!

The power of the patient voice

On Thursday I was a guest of Anthony Nolan, at a private viewing in an art gallery in London. My story was one of a few being featured in a photographic exhibition. This featured people who’s life has been transformed by their stem cell transplant. Many like me were attending and also featuring in the exhibition. I found this particularly powerful, as I read the story and could then actually talk to the person too. This is such an innovative way of showing the positive side of stem cell transplants and I can only imagine the comfort that reading some of these stories will have given to people facing this form of treatment.

My wife came along too and it was extremely humbling to be recognised by people who had seen my picture and wanted to know more about my story. Everything really comes to life in the book that Anthony Nolan have produced, and this will certainly prove to be a very powerful piece of literature, and is a refreshing contrast to the standard booklets given out to cancer patients.

My main crusade has been to encourage the medical profession to listen and engage with patients much better, but what I really understood from this week is that the patient voice is also powerful for other patients. As I have said previously, there are many people affected by cancer who have no inclination to get involved campaigning for change, like me. Most are just happy to get on with things the best way they can, but do enjoy learning from others, when a suitable opportunity arises.

Through all the work I have done in the last few years, my story is featured in books, magazines, newspapers, videos and media campaigns by many different organisations. Not because they know me, but because people want to learn more from my experience. When I now do personal presentations there are generally a few people in the audience who have seen some of my work on the internet etc.

Meeting people face to face is my preferred method of communication and this week was a very emotional one for me. To meet so many people who were learning something from my experience, is an incredible feeling, however that process was not only one way! My work introduces me frequently to so many wonderfully inspiring people and I also learn so much from them.

After so many years of campaigning, I can begin to see the buds of change starting to sprout, which I find personally encouraging. I can only see good patient engagement as a win/win, and hopefully progress in this area will continue. I would like to thank Anthony Nolan for a wonderful piece of work, and St Georges Hospital for showing faith in what I do. As always please feel free to share your views and experiences in the comments below.

I have attached a link to a PDF copy of AFTER the book I refer to above from Anthony Nolan.

 

 

 

The Grove Hotel Bournmouth
 I am very pleased to be an official Support Partner of  The Grove Hotel in Bournemouth, which is the only hotel in the UK specifically for people affected by  cancer.
8 Comments
  1. “So interesting to me Chris. This week my experiences with clinical staff have left me feeling less than a person and certainly haven’t felt patient choice was valued. Great to hear clinical staff can be interested in patient voice.”

    • Hi Rynneth
      Thanks for sharing the above comments with me on Twitter but I felt it was important for people to see them here also. This is exactly why I do the work I do, as there is still a long way to go.

      I hope things improve for you soon, Chris

  2. It’s a slow process, but the Patient Voice is becoming stronger.
    It will take even more openness, more sharing, more understanding, more communication – but now, it’s only a matter of time.

    Efforts like yours do a lot to strengthen this voice – thank you.

    • Thanks very much for your comments! It is indeed a slow process, and I have been personally working on this crusade for 6 years. I do see a lot of negative stuff written but I am at the ‘front end’ of things and I can see a chink of light now.

      Many thanks for your support and the work you are also doing, Chris

  3. Chris,
    I just read ‘After’ and shall now be using it as a resource for undergraduate and postgraduate students that I teach here at the University of Sheffield about the experience of health and illness. Thank you. Dave.

  4. Hi Dave,
    That’s a really positive thing for me, and exactly the reason I run this site. To share experience so we can all learn something from each other.

    ‘After’ is one of the most powerful patient resources that I have seen and it is a great privilege to be featured in it. I would like to think that it may change the way in which we produce a lot of bland and poorly worded patient information in the future.

    Thanks so much for sharing with your students. I would be happy to come and give a personal presentation if and when the opportunity arose. Very best, Chris

  5. Catching up on my blog reading and yours Chris is always a must. I am thrilled for you that this day went so well as I could tell how important it was. It just shows you perseverance pays!
    I have just spent three hours at my hospital for a 15 minute essential epilepsy appointment. I kept telling the nurses I was on chemotherapy and didn’t feel well but it made no difference. I think they need something like you have described to help them truly understand the effects of cancer. Thinking cap is on…any ideas gratefully received!
    Dawn x

  6. Thx so much for your comments Dawn and I am honoured that we are a ‘must read’ in your busy life!

    My hospital knew of my work of course, but only when my Consultant was in the audience at a large conference I was speaking at, did he really understand the effect on the audience. He asked me why I didn’t do it at my own hospital and I said I had never been invited!

    It took 18 months to finally happen but so many of the staff had read my story and seen some videos, there was a heightened expectation. It was very important to be able to talk to the staff about the ‘Patient Experience.’ I have since been invited back to talk at the next two nurse training days.

    It’s taking time but I have to be persistent 🙂 Tell your hospital I will come and talk there! Good luck with it Dawn as these are the issues that me need to improve, Chris x

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