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, especially on 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 four years ago 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. 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.

Hence, 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 National Institute for Clinical Excellence Safe Prescribing of Opioids, Gabapentinoids, Antidepressants & Z-Drugs Committee and the National MSK Steering Group.

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.