The Patient Voice Committee (TPVC)


Mission and Aims of The Patient Voice Committee (TPVC) Of The British Pain Society (BPS)

“To make a difference to the lives of people living with pain and those of their carers by making the views of patients, based on experience, influential in the design and delivery of the care and support they receive, by working with and for The British Pain Society (BPS)”. 

The Patient Voice Committee (formerly known as the Patient Liaison Committee) was created to act in an advisory capacity to the Council of the BPS, ensuring that the views of patients are represented within the Society and in external discussions about pain. The role of the committee has developed over the years and its voice is now part of most aspects of the work of the BPS. The following are key areas:

  • To ensure that there is a patient voice within The BPS.
  • To encourage patients to be better informed and involved in decisions about their care.
  • To improve patient information within the Society.
  • To bring patients and professionals closer together.
  • To advise on areas of service improvement and patient liaison and education.
  • To work with external bodies to further the work of The BPS.
  • To raise the profile of pain within the public and professional communities.
  • To keep in touch with a range of voluntary organisations concerned with pain.

TPVC consists of lay members and healthcare professionals. The Chair is appointed by the President and is a co-opted member of Council.

Contents

  1. TPVC on Social Media
  2. Patient Reference Group
  3. TPVC Vacancies
  4. Selfish Altruism by Kevin Bowers

TPVC on Social Media

The Patient Voice Committee can also be contacted via Twitter @PatientBps

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Patient Reference Group

To download the advert for the Patient Reference Group please click here: PRG advert

The Patient Voice Committee, on behalf of The BPS, has created the PRG for patients and carers to feedback by email on our work, publications and consultations.

Individual patients and carers are encouraged to sign up to this online group at: http://eepurl.com/ZaIkv  

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TPVC Vacancies

There are currently no vacancies for the Patient Voice Committee.
 

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Selfish Altruism by Kevin Bowers

Here’s something to consider, what if there was a way to make yourself feel better without using medication? What if, for example, giving time to others made you feel better? This is something that over the last three years I’ve been doing and I gain something every time.

Ten years ago, when my journey with pain began as the result of an infection, I had lots of investigations, scans, tests and surgery and was eventually placed on codeine, gabapentin and nortriptyline. That was the beginning of how my life was going to change; my mobility was becoming restricted and I was having bad and good days and increasing time off work. I was worried but not overly so. I made a few changes, a walking stick for support if I needed it, more rest, better planning etc, but life was plodding along.

Then one morning in June 2014, I awoke in agony! It was as if all the pain I’d felt so far had ganged up on me and was back for another visit. I was hospitalised where I had more tests, scans and investigations and was put on to morphine instead of the codeine I’d been taking and discharged into the community care of my local pain team.

Over the next year it became increasingly clear that I may not be able to return to work, my employer had been amazingly supportive all through my pain journey. They allowed me to move from being a night manager to days, they allowed me to plan and take rest breaks as needed and during the year after coming out of hospital they gave me home welfare visits as we looked at all the options there may be to getting me back. It proved, ultimately, futile. I started that year hopefully as my sick notes were weekly, then fortnightly, then monthly. I was getting a little concerned, then three monthly. Now I was scared, would I go back, what could I do, who would I be?

Financially things were increasingly difficult, I was a manager on a fairly good salary. It was a job I loved as it gave me contact with a huge number of people, both colleagues and customers. Interesting conversations that presented challenges to my own thoughts and ideas, different topics, wacky subjects, laughter, tears and concerns. What was going to become of me? What would I do now? In addition to work, my hobby/passion was drama, amateur dramatics, I was an actor involved in two groups locally performing three or four plays a year. What if I couldn’t do that anymore?

I found myself withdrawing into my shell, isolating myself from the outside world and I was becoming depressed. Relationships at home with my wife and children were becoming difficult, my mood could change at the drop of a hat, I became snappy, something that was tough enough for my wife but for my two daughters was just frightening. I was never violent but it is just as possible to hurt with words as it is with physical means and there are lots of things said that I regret and would take back if I could. Eventually, I found myself on a Pain Management Programme, this is a ten-week programme based in CBT and acceptance. I have to say I was extremely sceptical, what would I get from it?  Where is the cure I need? Nervously I entered the room on the first day, there were ten chairs in a horseshoe, three chairs at the front of the room, a whiteboard and a flip chart. I was back in a classroom for the first time in twenty-six years, it was clear that there was an expectation that we would be learning… but what?

There were nine other people, all in pain, with various causes, three clinicians, a psychologist, a physiotherapist and an occupational therapist. Our first topic was a very dry explanation of the physiology of pain, I worried this was going to be the format over the ten-week programme but it quickly became clear this was merely to ground us, to allow us to understand how the other subjects could fit in with this base.

The first thing we talked about was how we were adding to the burden of our pain, searching for cures, constantly thinking of how our pain was adversely affecting us, all of the voices that are difficult to ignore and seem to be too loud and prominent to dismiss. We talked about ways to quieten this noise, through mindfulness we learned that by focussing on our breath it was possible to be at ease with ourselves. We did some gentle exercises and we learned various CBT techniques aimed at managing the additional burdens our pain gave us. Most importantly though we learned acceptance.

Looking back now I think I felt I could never accept this, there was too much baggage, very restricted mobility, I used a stick for short trips like to the car on the drive, or anything further it was a mobility scooter or wheelchair. I could no longer drive as the increased pain when using the pedals was immense. We had adaptations to the house, extra bannisters on the stairs, grab rails etc and of course, I wasn’t going back to work. Luckily, I qualified for early retirement and an ill-health pension and we slowly started to get back on our feet, so to speak. I was still lost, depressed and wondering what the rest of my life was going to be like. At my lowest ebb I asked my wife “would it be better if I wasn’t here?” I don’t think I meant it but I said it so…

After completing the course it took me a while to piece things together, to reflect and to make sense of all the things we’d discussed. I’d shared a lot and made some true friends who I still see regularly after the three years since we finished.  One of them I found out lived just around the corner from me and she’s become a good friend of my wife too. As I started to understand things I realised that, while many doors were closed behind me, there were many that remained open and there was the possibility that many could be opening in front of me. For example, I could still act, I had to go for smaller more character-driven roles, I could direct and I started writing reviews of local amateur theatre. I qualified for a Motability car, using hand controls I could start helping out picking the kids up or taxiing them places, removing part of a burden from my wife. I didn’t need to ask for lifts anymore I was gaining back my sense of self but I needed something more…

Selfish Altruism! After a follow up appointment with my psychologist he referred me to my consultant, we discussed whether a spinal cord stimulator would be suitable for me, it wasn’t, but then she talked to me about a programme that they were using in Bristol where patients who had completed the Pain Management Programme, come to other sessions and discuss the benefits and encourage the participants to attend follow up meetings that they would control, they would run them, set the agenda and encourage each other to continue the practices they’d learnt on the programme. We would be peer supporters, people with similar stories, we had an authentic voice who could talk from experience. This proves to be very positive and powerful; feedback from participants talks about how hearing from fellow pain patients helps them to buy into the acceptance part of the programme.

I was then approached to take part in symposiums for medical students at my local university, I do three a year, one to second-year medical students, one to psychology students and one to occupational therapy students. I talk about my experience of chronic pain, my journey with it and my interactions with clinicians; this is followed by a Q&A session where my acceptance allows me to be completely open and honest. I’ve started to take a more active role in my local pain support group, I run some of the sessions and attend as many of the three meetings a month as I can. And of course selfish altruism has lead me to the British Pain Society and to be Co-chair of the Patient Liaison Committee, I’m also a lay member of B.P.S. council allowing me to have a patient voice on this committee.

All of the above sounds like a lot but in reality it is spread out and I’ve learned to pace and plan my time. So what is Selfish? The selfishness is goodwill and great feedback and the feeling that I’m making a difference. The Altruism? This comes from giving my time with no reward. Retiring at 42 was really hard. I’d lost most of what made me who I was; it was gone and I had nothing to replace it, I’d lost my place in society. Volunteering has made me feel my life has meaning again, I know I fit into society and I can still make a difference.

 

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