Pain Concern – Recent Achievements
We’re starting 2023 with a round-up of our recent achievements, including updates on our core services and the support that they provide.
Activities
Every month Pain Concern reaches over 8,000 people. Our charity provides high quality information and support to people living with pain and those who care for them, whether family, friends or healthcare professionals.
A key objective has been to consolidate our activities: helpline, pain education, Airing Pain podcasts, publications, The Self-management Navigator Tool so they coherently fulfil Pain Concern’s vision of empowering all people living with pain to manage their condition and live life to the full.
Last year, we produced a promotional video that explains what we do and how we can help. We have made subscriptions to our magazine Pain Matters free to anyone living with long-term pain.
Our reach
We either attend, or our video is played at 6 different NHS Trusts across the UK, and a growing number of NHS pain management programmes promote our free evidence-based resources, for example, 11 of the 14 NHS pain clinics in Scotland receive our magazine. In primary care, we have developed our relationships with Link Workers and GPs, for example recently we met with the Royal College of General Practitioners.
‘The group members were saying they really appreciated the info and hadn’t known about other forms of support‘ – Dr John O’Sullivan, Clinical Psychologist, Chelsea & Westminster Hospital
Social media
We achieved a steady increase in social media followers to 500 followers across each platform over the year. We use our presence on LinkedIn to reach health care professionals.
Helpline
‘I really appreciate your help and time‘ – service user
‘I have learnt so much and I feel like these skills are being put into practice and making a positive difference to people’s lives‘ – helpline volunteer
The impact of the COVID-19 pandemic on NHS waiting times has been profound. Our helpline now provides a lifeline to those on the long waiting lists or those just struggling to get an appointment. In recognition, in the winter of 2022, the Scottish Government awarded us a 3-month grant. In that short time, we showed that over half of our callers felt better/more positive after speaking to us.
We presented a poster of the results at the Scientific Meetings of the North British Pain Association and the Scottish Pain Research Community (SPARC).
Our helpline is one of only a few which focus on chronic pain. It has grown steadily, since “lockdown” with over 150 service users contacting us each month by phone or email. We plan to extend our opening hours to 3 days per week and to make better use of our pain educational materials, including the Self-management Navigator Tool. To do this, we are training additional helpliners. Training covers contact skills, pain education and understanding self-management.
Ongoing supervision and support of our helpline team is provided by expert counsellors at Professional Help. To ensure that we provide a high-quality service, we are members of the Helplines Partnership and SAFEcic, following their standards. We have worked extensively with Evaluation Support Scotland to monitor and evaluate our service.
In 2021 Louise Cromie, one of our helpliners won an Inspiring Volunteer Award:
Online Community
At HealthUnlocked the Pain Concern online community remains one of the most active forums in the UK, providing high quality and humane support to its 33,964 members. This year we attracted 2,000 new member and received over 5,000 posts
The Self-management Navigator Tool
The award-winning Self-management Navigator Tool (Navigator Tool for short) is an interactive booklet which is designed to foster supported self-management and actively focus healthcare appointments on meeting the patient’s concerns.
Our helpliners use the Navigator Tool to help our callers identify their needs and prepare of healthcare appointments. Our web-based edition of the Navigator Tool has made it more accessible. It is used routinely in NHS Gloucester, NHS Grampian and NHS Greater Glasgow and Clyde. Its use is supported by the Scottish Government and it is mentioned in the recent NICE Clinical Guidelines for Chronic Pain.
We continue to promote its importance, so we were delighted to be contacted by the Pain Society of Alberta. They had watched our videos and loved the Navigator Tool. They invited Pain Concern’s chairman, Dr Martin Dunbar to give a presentation to their 2022 World Pain Summit.
Praise for The Self-management Navigator Tool
‘The Navigator Tool can help patients to recognize all the different ways in which pain affects them, and therefore all the ways in which they can be helped or can help themselves. It also allows their healthcare professionals to get a quick in-depth snapshot of the most important areas to address. Most importantly, it allows an informed and realistic conversation about how we can all work together, as patients and professionals, to improve life with pain‘ –
Professor Blair Smith, former National Lead Clinician in Chronic Pain
‘The Navigator Tool is a literal treasure chest for the busy clinician. It allows one to discover root pain beliefs and concerns that could otherwise take months to uncover. The tool guides conversations and self-management treatment choices, while avoiding the dreaded pit fall of the patient thinking we don’t believe in their pain. It does the opposite…helps the patient feel heard, and gives us reassurance we are on an “evidence-based path together‘
– Alexandra Chisholm, physiotherapist, Calgary, Alberta, Canada
‘The tool really helps alleviate my nerves about not being able to get my point across properly‘ – Ruth Barber, service user
Quality Standards
In the past our leaflets were accredited by Information Standard. This prestigious award certified that they, and aspects of our website, meet the quality standard required by the NHS. The PIF TICK award, administered by the Patient Information Forum, has replaced the Information Standard. We will ensure that we achieve this award in 2023.
Collaboration
‘The Four Nation Strategy for Pain Management is patient focused from point of first contact including, self-help signposting, personalised care and shared decision making‘ – Dr John Hughes, Dean of the Faculty of Pain Medicine
We were glad once again to support the work of the Faculty of Pain Medicine, by endorsing The Four Nation Strategy for Pain Management which was published in 2022. Likewise, we have endorsed the British Pain Society’s leaflet Managing your pain after surgery.
As members of the Scottish Government’s National Advisory Committee for Chronic Pain, we have had a say in shaping the Framework for Pain Management Service Delivery. The government’s plans are to work with the Third Sector Network to support the NHS and government to build sustainability in commissioning and coordinating community-based support for people with chronic pain.
Our helpliners have signposted callers to Flippin’ Pain’s excellent webinars on self-management and we participated in their roadshow campaign to change the way we think about, talk about and treat persistent pain.
We attended a conference organised by CRPS UK as well as a number of community groups throughout the year. We are all stronger through collaboration.
Airing Pain
‘When I was first diagnosed, I listened to every Airing Pain radio programme. It gave me a bit more hope‘
‘So much more information than I got from the consultant, that’s why we need Pain Concern‘
Airing Pain radio programme is a series of half-hour podcasts supporting Pain Concern’s vision to empower people with chronic pain to manage their pain and live life to the full. They are produced and presented by Paul Evans, a multi-award-winning producer with forty years of experience as a programme maker – 30 years with the BBC and 10 years as an independent producer. He has lived with fibromyalgia for over half his working life, the experience of which combined with his professional expertise bring a unique quality and authenticity to Airing Pain.
Paul’s purpose is to provide support for everyone who lives with chronic pain, their families, supporters, social circle, employers and healthcare professionals, bringing them all under one umbrella: the pain community. Airing Pain promotes the concept of supported self-management as a recommended, effective intervention for chronic pain, and provides a powerful platform to hear the views and experiences for the all-the-often voiceless patients.
The assistance of the British Pain Society has enabled us to interview world-class experts and patients at their Annual Scientific Meetings. This year we collaborated with The International Association for the Study of Pain to provide a global perspective on back pain. Pain Concern collaborates with the UK’s only disability internet broadcaster, Able Radio, who broadcast each new edition of Airing Pain.
Every edition of Airing Pain is on Pain Concern’s website, along with programme transcripts. In 2021-22 we produced five new podcasts covering: a global perspective on back pain, neuropathic pain, Parkinson’s, shingles, post-herpetic neuralgia – facial pain, pain management programmes and benefits of an online community. Our listener numbers are 13,000.
From our Airing Pain contributors
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
‘Your body needs movement. I’ve always kept that with me that despite the pain I have to move’ – Janet Kerr, on managing Parkinson’s.
‘By sharing our problems, it becomes easier, first of all to really navigate, but it also becomes easier to understand that we are not in this alone‘ – Otieno Martin Ong’wen, physiotherapy ambassador for Kenya in the Global Physical Therapy project.
‘There’s not one part of my life that is untouched by pain. So, I would encourage anybody who doesn’t have pain, just to talk to the people they know who do. You just have to say ’How can I be a better support to you? What would make today easier for you?’ – Vina Mohabir, Clinical Research Project Assistant, The Hospital for Sick Children, Toronto.
‘There is only one answer to post-herpetic neuralgia, and that’s don’t get it. And the only way we have of not getting it is by shingles vaccination‘ – Dr Richard Johnson, Honorary Senior Research Fellow, Bristol Medical School
Pain Matters magazine
‘Your magazine offers hope‘
Staff and patients from NHS pain management programmes have guest-edited the different editions of Pain Matters quarterly magazine. This has brought fresh content and personal accounts that are inspiring to read. Articles that proactively help people in pain to acquire self-management skills and take more control of their lives are appreciated by readers.
Last year guest editors from NHS North Bristol explored how pain services have adapted during the pandemic. We covered the global year about back pain with guest editors from the International Association for the Study of Pain’s Global Alliance of Partners for Pain Advocacy, while in another issue guest editors behind the Advance Pain Discovery Platform showed how researchers and patients are collaborating in their efforts to advance our understanding of pain.
From our contributors
‘Ask yourself: when your doctor prescribed a tablet for your pain, did they discuss what you might do while you wait to see if they help?’ – Professor Michael Nicholas, on the importance of adopting a collaborative approach to care
‘It’s hard to explain that this invisible pain in my legs, feet and hands has caused major disruption to my life. It’s an unwanted soundtrack and I can’t turn the volume down‘ – Fiona Talkington, broadcaster, writer and presenter, on how difficult it is to describe pain.
‘I’d walk in the park or around the block, just for a few minutes every day. I still miss social interaction so I made sure I spoke to someone each day, just a ‘good morning or a ‘how are you’ helped‘ – Cathy Parker, former attendee of North Bristol pain management programme, on what helped her through the pandemic.
‘How could we all work together to ensure changes in the lives of people in pain?’ – Professors Lesley Colvin and David Walsh explain why researchers set up the Advanced Pain Discovery Platform
Other publications
Our popular pain education publications remain available on our website and we will post leaflets free of charge. With the support of two charitable trusts, The Stafford Trust and R. S. MacDonald we have created new publications covering Nocturnal pain in Parkinson’s disease (that is when most pain occurs) and, with the Shingles Support Society, Shingles vaccination, explaining why vaccination is central to preventing post-herpetic neuralgia. These publications accompany the Airing Pain podcasts on Parkinson’s pain, shingles and post-herpetic neuralgia. We have been heartened at the response.
The Immunisation and Vaccine Preventable Diseases Division of the UK Health Security Agency has invited us to collaborate with them in 2023 in updating their information. We have progressed our information on opioids for chronic pain, once again collaborating with the charity Maggie’s to produce a new publication on Opioid-induced constipation. We have collaborated with the Brain and Spine Foundation, to publish their article on Signalling for support – navigating life with a hidden condition.
Pain Press is a free e-newsletter which supplements Pain Matters and keeps beneficiaries and supporters up-to-date with our activities and achievements. We have published 7 editions of the supplement in the year.
Highlights from across the years
2009 – Pain Concern wins Napp Award in Chronic Pain which allows us to launch Airing Pain radio programme in 2010.
2015 – Paul Evans wins best Nationals and Regions Producer at the Radio Productions Award, with the judges singling out our Airing Pain programme on ‘Female Genital Mutilation’ as a ‘stop what you are doing’ moment.
2016 – Our research Barriers to Self-management in Primary Care wins poster prizes at the annual scientific meetings of the British Pain Society and the North British Pain Society.
2016 - We contribute the chapter ‘Communication with patients’ to the Royal College of Anaesthetist’s Core Standards for Pain Management.
2017 – Barriers to Self-management is published in the British Journal of General Practice.
2017 – NHS Greater Glasgow and Clyde’s Pain Education Sessions, along with Airing Pain win Highly Commended Award at the Grünenthal Pain Awards for ‘widening access to pain education.’
2019 – The Self-management Navigator Tool wins a Best Poster Prize at the Annual Scientific Meeting of the Scottish Pain Research Community (SPaRC).
2020 – A pilot evaluation of the Self-management Navigator Tool to enhance communication in primary care consultations about chronic pain is published in The British Pain Society’s Pain News.
2020 – Open Access Government publishes 2020: Global Year for the Prevention of Pain.
2020 – Evaluation Support Scotland publishes Pain Concern Helpline: A Case Study; in 2022 they publish an update on their website.
2021 – Our helpline volunteers receive an Inspiring Volunteers Award in recognition of their service throughout the pandemic.
2022 – We present a poster Impact of a Patient-led Helpline on NHS Services at the scientific meetings of the North British Pain Association and the Scottish Pain and Research Community (SPARC).
