Footsteps Festival 2021

Meet the team

Who’s behind the festival?

The Footsteps Festival was borne out of personal passion to support people who were trying to work out how to live well with pain. There was a group of us who started to coalesce around blogs, videos, questions and moments of connection around pain posts on Twitter.

Some of us were wrestling with our own journeys to try to live better with the pain that we were experiencing. Some of us were working with people in pain and learning or researching things that were clearly helping. But all of us felt were united in the sense that the information, research and tools were hard to find. We wanted to change that! And with Covid-19 making online tools much more prevalent, we launched the Footsteps Festival with a trial at the end of 2020 and a launch for 2021.

We recognise that the pain journey is personal and complex. We hope that the festival format can help you to find the sparks that shed light on what you are working with, and the Community to talk about it and get emotional support (because you are not alone).

We also work constantly to balance and support both the patient voice and the clinician credibility to find real insights that genuinely support people. Hence, we are a very democratic team with everyone contributing from their view of the challenges. And we welcome all additional ideas and builds on how this festival can help – email us with your ideas.

We also want to thank Live Well with Pain for hosting the Festival site, the Liz and Terry Bramall Foundation for their financial support and the PPA.

Louise – 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.

Karen – making sure that the Carers get cared about too!

I’ve been married to Louise since 2007 and for a large part of that time I was her full-time carer. I also live with persistent low back pain and was medically retired from The Post Office over 10 years ago.

I’m a cold water swimmer, keen walker and lead a walking group for people with pain and/or long term health conditions. My other passion is photography and I find all of these activities help me manage my pain.

I became involved in the festival to support not just people living with pain but their friends, family and carers that need help and support to live the best life they can.

Niki – a vlogger, influencer and advocate

I was a Research Executive for the British Horseracing Authority, (and I have a science background.) 18 years ago I suddenly developed severe Trigeminal Neuralgia which derailed that life. I learned to adapt but in July 2018 I discovered a pain management app that completely transformed my understanding of pain and how to live well with it.

I’m now rebuilding my physical fitness and learning to live life very much to the full despite challenges coming off opioids. 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 new 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.)

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.

Jenny – a former GB-level age-group triathlete working to live well with pain

My journey to trying to live well with pain was a lonely one, so my passion for the Footsteps Festival is to give support and signposting to others so that they can move through it more quickly and with the feeling that there are others by their side.

My message to anyone grappling with pain is that there is a lot of great help available and whilst not all of it will work for you, keeping up the search and finding your personal ‘formula’ can enable you to build a (new) life of joy and fulfilment.

As a part of facing into my challenges I qualified as a Personal Trainer specialising in Corrective Exercise, and am also a Triathlon and Running coach, with a geeky interest in movement patterns.

Chris – a Clinical Psychologist working in pain management

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 became involved in this project because I think more collaboration between health care professionals and people who live with pain can only be a good thing!

My work/life background is as a physiotherapist. I qualified in 1995 and have worked specifically in pain services since about 2005. I have a personal interest in mindfulness and trained to be a teacher in 2014. I am also a qualified non-medical prescriber. I am lead physio in a large pain management centre in London and have worked both with people individually, in group pain management programmes and as a 1st contact practitioner. I am also the current chair of the Physiotherapy Pain Association and recently became a member of the Live Well with Pain team. I have valued working with people who live with pain to develop our services especially during COVID19. I also like swimming in the sea.

My personal message to people grappling with pain is to be kind to yourself, and as much as possible hold goals lightly but if possible identify things to work towards that bring joy. Getting comfortable with the unknown can help, which I appreciate is easy to say but very hard to do!

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

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.

Amanda C de C Williams

Amanda C de C Williams is a Professor of clinical health psychology at University College London, and a consultant clinical psychologist at the Pain Management Centre, University College London Hospital, UK. She also works for the International Centre for Health and Human Rights, and is Section Editor for Psychology on PAIN.

After years of full-time clinical work in an inpatient and outpatient pain management programme, during which she did research that formed part of her PhD, she moved increasingly into academic posts, joining University College London in 2004. She also worked in a torture survivor charity part-time. Her research interests include evidence-based medicine applied to psychologically-based treatments for pain; evolutionary perspectives on pain; behavioural expression of pain and its interpretation by clinicians; better recognition and treatment of pain from torture; and responsive wearable technology to extend healthcare into patients’ own environments. She has written over 300 papers and chapters on pain and psychology; these can be viewed here.

Mark Farmer

Mark Farmer suffers from chronic pain due to Fibromyalgia and Arthritis. In 2015, Mark set up the national Fibromyalgia Friends Together Group which now has over 12,000 followers. He is a Healthwatch Board Member in Leicester and Leicestershire, a member of the Royal College of Psychiatrists Equality Taskforce and a member of the British Pain Society’s Patient Voice Committee.

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 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.

Dr. Deepak Ravindran 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. Dr. Deepak Ravindran is an ‘upstreamist’ with a trauma informed approach to pain practice.

Find him at

Twitter: @deepakravindra5

Linktree: https://linktr.ee/DrDeepakRavindran

Instagram: @drdeepakravindran

Hollie Beatty

Hollie lives with fibromyalgia, depression, and anxiety which she has found extremely difficult to manage at such a young age of 32. It has been especially challenging because she is a single parent and like many others, she has to try to balance her health needs with the needs of her 9yr old son. She is learning so many new ways to cope with her pain, her system can not tolerate pain medication very well so finding alternatives is vital. She has become involved with the Festival because she is passionate about helping others find ways to live well their pain! She is learning all the time and would like to help others with their journey.

Hollie’sTwitter: @Hollie52519545

 

Matthew Mayers – Youth Representative, Tech Geek, and Gamer

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