Louise – Chairperson – Patient Advocate with Special Interest in Pain and Opioids

I live with the pain of Fibromyalgia and Arthritis. For over 13 years I was on prescription opioids, which caused my health to deteriorate severely. My pain had increased so much that I was almost immobile, living between the bed and the armchair. However, through a wonderful Clinical Nurse Specialist at my local Pain Rehabilitation Service, I went into hospital to come off the opioids rapidly. This was in 2017 and heralded the beginning of my recovery.

I now manage my pain by walking and swimming daily. I still live with pain, but I manage it much better by being as active as I possibly can. You can see more of my journey in this video.

It’s now my personal mission to try to help as many people as possible: both people living with pain and healthcare professionals.

I am Vice-Chair of British Pain Society’s Patient Voice Committee, Chair of Get Involved Committee at Torbay & South Devon NHS Foundation Trust Pain Rehabilitation Service, lay member of the Physiotherapy Pain Association Executive Committee and sit on the NICE (National Institute for Clinical Excellence) Safe Prescribing of Opioids, Gabapentinoids, Antidepressants & Z-Drugs Committee to name just some of my national commitments.

Niki – Vice-Chair – advocate for all things pain related

Niki runs the award nominated Journal Club alongside Chris

I was a Research Executive for the British Horseracing Authority, (and I have a science background.) 20 years ago I suddenly developed severe Trigeminal Neuralgia which derailed that life. I learned to adapt but life was small with much biomedical input. However in July 2018 I discovered a pain management app that completely transformed my understanding of pain and how to live well with it. I now consider myself “recovered” although that still includes living carefully and mindfully.

In the last few years my life has transformed to a very active, fulfilling and exciting one – and I’m very much coming alive in my 50’s! I very much want to reach out to people living with pain who need the positive support of others who have shared experiences, and I want to facilitate the understanding of modern science that really gives hope of recovery, even if that doesn’t look like once imagined.

(I have realised how important the use of fun, joy and creativity is in managing pain and I’m eager to explore this in the Festival environment.)

In Sept 2021 I joined the Flippin Pain Outreach Tour and cycled 170 miles in five days around Lincolnshire! I hope to re-join them this year for the Teesside trip. I am starting to work as a Pain Recovery Coach and I also am the lived experience partner on several research trials and even a PhD supervisor.

Find me on Twitter @Fizzbw

Mark A – leader in pain support

I got involved with the project as a person with lived experience of living with chronic pain. I was honoured to be invited as I thought it was a great way to boost the profile of the condition, share lots of useful ideas and information as well as giving people with chronic pain a sense of belonging and being supported.

I’ve previously worked in publishing until my condition deteriorated too much. I’m now heavily involved with mutual support, being the co-founder and co-organiser for a Camden based, patient-led, pain support group.

This led to me becoming extensively involved in patient partner roles in the NHS, at borough level (Vice-chair NHS Camden Patient & Public Engagement Group and North Central London CCG as a Community Member) and with NHS England/Improvement on the MSK Lived Experience Steering Group.

Chris – a Clinical Psychologist working in pain management

Chris runs the award nominated Journal Club alongside Niki

I have worked in pain management since qualifying as a Clinical Psychologist in 2001. During this time I have specialised in Pain Management, working first for a local NHS Trust and now for Newcastle University where I specialise in Orofacial Pain. I have worked individually and in groups with hundreds of patients to support them in self-managing their pain.

I have been privileged to help many of these people think differently about their pain and develop kinder ways of relating to their symptoms often leading to an improved ability to live meaningful lives. I have also listened to many people tell me that they found it difficult to access traditional pain management services, or would like the support they received from them to continue after they are discharged from them.

I am passionate about playing my part in providing continued input that people can access to support them in their self-management.

Diarmuid – Physiotherapist and cold water swimmer

I am a physiotherapist with a specialist interest and experience in working with people with persistent (chronic) pain. I have a personal interest in mindfulness and trained to be a teacher in 2014. I am a past chair of the Physiotherapy Pain Association , a member of the GAPPA task force, and a member of the Live Well with Pain team. I am currently doing my PhD research with a GUDTP fellowship from the ESRC exploring what emerges in the place between receiving healthcare (treatment) and living well with pain.

I feel it is helpful to know that it can be possible to see changes and improvements even when the pain has persisted for a long time, although I know that doesn’t mean it is easy.

Outside work I have a wonderfully patient family; Sarah and two boys who are fast becoming men! I enjoy walking my dog, playing the piano (badly!), and swimming in cold water, being lucky enough to now live by the sea. I became involved with ChillUK in 2021, an organisation to help people with health conditions to get sea swimming (I love it!).

Frances Cole

Frances Cole was a GP and pain rehabilitation specialist working with cognitive behavioural therapy in pain management:

I kickstarted the first UK multidisciplinary primary care pain management in Bradford back in 1996. This led me to co-author of a CBT self help guide Overcoming Chronic Pain and we added a second edition published in February 2020 to go alongside Living Well with Pain self-help book.

In recent years I have focused on Live Well with Pain web resources for clinicians and for people with pain. These are designed to help positively in response to lessen reliance on opioids and other medications and their unsafe side effects. Footsteps 2021 offers a great way to share the multitude of ways to enjoy and live well in life despite pain.

Ann Holliday

Ann is the co-lead for the successful Create and Chat groups along with Matthew

I’m a pain survivor, living with pain 24/7 for nearly 60 years since I was knocked down by a car. I worked full time until 2006 but took early retirement following a work-based accident which increased my pain levels. I have several diagnoses, including CFS/ME, Spinal Stenosis, Degenerative Disc Disease, Fibromyalgia and Arthritis.

I became reliant on pain medication and spent years in a medicated drug fog. I’ve learned that, for me, there is no medication that takes away my pain, so I’m using other interventions such as mindfulness and ‘distracting tactics’ namely knitting, sewing, crochet, and cooking. I now use my hobbies and interests to take my mind off focusing on my pain.

During the first lockdown I  joined a local group, Taunton Scrubbers, making scrubs, scrub hats and laundry bags for our local hospitals, GP surgeries, care homes etc.

Was I in pain? Yes! Did I need help to stand after a session sitting sewing? Yes! Did I feel a sense of achievement as a completed each item? Yes! Did it make me feel I had a contribution to make? Yes for the first time in years!

Ian Taverner

I am Ian Taverner, creator and writer of Cookfulness, and am a chronic fibromyalgia, arthritis, anxiety and depression survivor. I want to show you that you really can benefit from the therapeutic power of cooking no matter what level of pain, fatigue or anxiety you are feeling!

Claire

I’ve had chronic pain for 30 years now but more importantly, I have recovered from most of it through sheer determination and hard work! I joined the Footsteps project because being someone with lived experience who has had very little support, a resource like this is so very important. I know that it would have meant an awful lot to me if there was something similar when I was seeking help and support. I want to help people like myself access the tools and strategies that might help them find some relief, and for them to know that they are not alone.

Claire Campbell

Often, when pain starts, people give up activities they enjoy to focus on the things they need to do. This can be really helpful in the short term, but as the months go on, people can feel disconnected and feel frustrated. I am delighted to be part of the Footsteps Festival because I know how important it is to meet others living well with pain, and experiment with different activities that have nothing to do with pain.

I work as a physiotherapist in the Fife Pain Management Service in Scotland, and have been interested in the complexity of pain and supporting people to live well alongside pain conditions for over a decade.

I am a committee member of the Physiotherapy Pain Association, a proud supporter of the Footsteps Festival and I am delighted to be part of the organising team.

Ann – specialist physiotherapist, yoga teacher, wellness coach and author

I am excited to be involved with the Footsteps Festival project as I feel the collaboration between pain specialist clinicians and people living with pain is able to create the most helpful offerings for people living with pain. I specialised in persistent pain over 10 years ago and have worked in this area, alongside neurology ever since. I have lived experience of persistent pain and have learnt to live well with it.

I have a special interest in compassion, especially in pain care and healthcare in general.  Self-compassion practices are really important for people living with pain for many reasons, including because self-criticism is commonly high which tends to increase pain and compassion has been shown to decrease self-criticism. Motivating ourselves with compassion is much more sustainable than doing so with self-criticism.

My passion for helping people who are struggling to live well due to pain or another health condition led me to write a book called Dancing through Life: A Guide to Living Well.

I would like anyone struggling with pain to know that it is not your fault, nor is it all in your head. Also that changes in quality of life can be made, so that you can do what’s meaningful and live aligned with your values, even if it’s not in the same way as it once was.

Dr. Deepak Ravindran

Dr. Deepak Ravindran has over 20 years of experience in Pain Medicine and is Clinical Lead in Pain Medicine at the Royal Berkshire Hospital, one of the busiest General Hospitals in the UK.

He is one of the very few consultants in the UK who holds triple certification in musculoskeletal, pain medicine and lifestyle medicine. He also is an honorary consultant to the award-winning community Pain service, IPASS, for the county of Berkshire. Recently, he helped set up and leads the Berkshire Longcovid Integrated service.

He is a speaker, podcast host of “Pain Speak” and author of the Best Selling book “The Pain Free Mindset” – a book aimed at patients suffering with pain but also immensely useful for all healthcare professionals in understanding all the recent advances around pain management and scientific evidence-based way of managing and overcoming pain.  Deepak is an ‘upstreamist’ with a trauma informed approach to pain practice.

Find him at

Twitter: @deepakravindra5

Linktree: https://linktr.ee/DrDeepakRavindran

Instagram: @drdeepakravindran

Matthew Mayers – Youth Representative, Tech Geek, and Gamer

Matthew is co-lead of the successful Create and Chat groups with Ann.

I developed ME/CFS/Fibromyalgia at the age of 14, after a viral illness.  I have little recollection of the first four years, most of it spent in a medication-induced stupor. Ten years on, and pain medication-free, I am still learning to live with fatigue, pain, and depression and develop strategies to achieve as normal a life as possible.

School was a major struggle, eventually leading to home tutoring.  This enabled me to pass four GCSEs.  In the last three years, I have managed to gain additional qualifications through part-time IT courses and I want to pursue further courses that I know will be achievable for me.

As a young person struggling with a debilitating illness, one of the hardest things to accept is the isolation from friends and family, many of whom do not understand the enormous effort it takes to do the simplest of tasks.  For me, computer gaming has been a lifeline from this isolation and loneliness. It has allowed me to ‘escape’ from my bedroom and connect with countless people from around the world.  Some of these have become good friends, and we have been able to support each other through difficult times. Gaming plays a vital role in my life management, offering a welcome distraction from pain and letting me compete in challenging electronic sports activities as part of a team – something I still miss from playing rugby and athletics.

I am also passionate about coffee and love experiencing new flavours and brewing techniques.

Based on my own experience, I have found it difficult to connect with other young people living with pain and fatigue, and I would like to do what I can to reach out to help others in the same struggle as myself.

Mathews Twitter