Arthritis Champions
Arthritis Champions is our new model of delivering self-management services that has enabled us to significantly expand our reach and the support we offer people affected by arthritis in the UK.
Arthritis Champions developed from a wide ranging consultation which revealed that people with arthritis felt that they lacked information about how to manage their condition and didn’t know how to find local services. People also told us that they felt GPs did not always fully understand what living with arthritis is like and that talking to someone who has personal experience of arthritis can make the most difference in helping them to gain control of their own condition. Some of these needs are illustrated by the summary findings in the box below from our 2013 Arthritis Watch Survey, which asked 500 people with arthritis about their experiences of treatment and care.
People have to wait at least 1-2 days and sometimes up to five days for urgent appointments after a flare-up in symptoms leading many to seek immediate pain relief at A&E;
The majority did not have a care plan;
Lack of written information provided to people on their condition;
People with rheumatoid arthritis generally think their treatment is effective whilst most of those with osteoarthritis think their treatment is not effective;
Pain was the unifying experience of respondents with treatment for pain generally seen as inadequate;
Lack of confidence in the quality of care provided by General Practice (GPs);
Lack of referral to supportive organisations like Arthritis Care or educational programmes.
Arthritis Champions are trained volunteers who provide peer support, information and awareness, and an introduction to self-management techniques. Their aim is to increase awareness and self-management of arthritis in their community. The volunteers use their life experience and understanding of arthritis to help people in their community. They support others to make positive life changes and work with local health and social care providers to improve their quality of care.
The Arthritis Care Hub is the core delivery while other self-management services can be offered depending on available funding. The Hub consists of trained Community Champions who run regular drop-in events or talks at local health and community centres.
The Champions are available to talk to people about anything to do with arthritis. Through practical information on everything from getting the most from doctor’s appointments to relaxation techniques, the drop-ins give people with arthritis the tools they need to start dealing with their pain. For those needing more help we refer them to our self-management courses (with options including One2One, face-to-face and telephone group courses.)
The Hub offers:
Information & Literature – Community Champions at the drop-in events and talks share Arthritis Care booklets and can demonstrate some self-management techniques e.g. goal setting or action planning.
Arthritis Care Helpline – Community Champions at the drop-in events and talks raise awareness of the Arthritis Care Helpline staffed by professional counsellors.
Local signposting to other services – The Community Champions at drop-in events and talks can signpost people to local health services such as Health Trainers, smoking cessation, weight management and exercise.
In England and Wales, the Champion drop-ins have involved volunteers manning Arthritis Care branded stands at health centres and community venues for up to three hours at a time. The Champions are equipped with information booklets, factsheets and our membership magazine. Many of our Champions also have electronic tablets in which they can demonstrate useful web resources. In Northern Ireland we have run roadshow events which have featured talks on arthritis, exercise taster sessions such as Boccia and stands from podiatrists. Volunteers from branches have helped support the events promoting membership of their local groups.
2013
Pilot of Arthritis Champions in West Cheshire and Gateshead
20 Community Champions trained
71 drop-in events run visited by 1,070 people affected by arthritis
Results of evaluation
89% said they had increased knowledge about their condition
67% of people said they would try new self-management techniques
29% are making changes to their diet or exercise
17% of people said they would try new methods to relieve their pain
11% are going to visit their local branch helping to reduce isolation
100% of participants found the Champions helpful, with the most recurring theme being the fact that there was someone to talk to about their condition.
2014
Arthritis Champions rolled out to five areas in England and in areas of Wales and Northern Ireland
57 Community Champions trained
266 drop-in events visited by 2,888 people affected by arthritis
5 Roadshow events run in Northern Ireland.
Results of evaluation
In England, 100% of people asked found the service useful, 65% reported increased knowledge of their condition and how to cope with it, and 69% have gained information that will help them make changes to their eating habits and exercise.48% will consider joining their local Arthritis Care support group.
In Wales, 92% found the service useful,64% reported increased knowledge of their condition and how to cope with it, 80% have gained information that will help them make changes to their exercise and 36% planned changes to their eating habits.
In Northern Ireland, over 70 people visiting an Arthritis Champions drop-in went on to access other services delivered by Arthritis Care including self-management training courses, Staying Connected project and branch support.
Arthritis Champions and Commissioning
We were commissioned by four Clinical Commissioning Groups (CCGs) in West Berkshire in June 2014 to run a pilot of Arthritis Champions. The CCGs had identified Berkshire West as an outlier for secondary care Musculoskeletal services (MSKs). More people are choosing to have hip and knee surgery here compared to the national average. The CCGs have commissioned Arthritis Champions with the aim of reducing surgical interventions by supporting patients in managing their condition and shared decision making (helping patient weigh up all their options before surgery).
People referred to Arthritis Champions in West Berkshire have the choice of a drop-in appointment, a two half day over twoweeks Challenging Pain course, the Pathway through Arthritis online course or the Chat4Change tele-befriending course. People are also supported with Shared Decision-making aid, an online tool helping people to reflect on the decision to have surgery in the context of their lives. (
We received 176 referrals between June and November 2014. Of those 176, 143 people have chosen a programme within the service. Due to availability/dates of programmes available, 43 people have completed either a Challenging Pain course or have attended a drop-in session. All 32 people who have chosen Pathway through Arthritis (online course) has been sent log-in details. No Chat 4 Change tele-befriending programme has been completed to date.
100% found the programme useful and 100% would recommend the service to family and friends.
Later this year we will have results on whether Arthritis Champions has helped to reduce the number of people choosing surgical interventions.
How are the drop-ins helping?
“It has given me the information I needed to do something about my arthritis. Three GPs have just said “Take more pain killers”. I don't want to kill my kidneys; it’s good to know there are other steps.”
“It was helpful talking to someone who has arthritis and has had knee replacement surgery.”
“Excellent service being able to drop by and have your fears allayed. Helpful information.”
Case study
Nick was given conflicting information from his Consultant and GP regarding injections for pain management. Visiting the drop-in allowed Nick to talk about how he felt and he got guidance on the steps he could take. He made a plan involving four small goals; to ask specific questions, write these down before his appointment, find out about hydrotherapy (warm water therapy) and find out more about his condition from Arthritis Care publications. In a follow up visit, Nick said he had now received his injection and was feeling more positive. He said:
“It has been so valuable chatting without the clock ticking. There is never enough time, the professionals are so busy. Thank you so much!”
Nick has since added his health care experiences to Arthritis Watch (our national survey tracking people’s experiences of their local health care services)
What our volunteers have told us
‘I thought it sounded a far better way of reaching people with arthritis than what we had done before. It is going out to the places people go in the community and telling them what we can do for them. It doesn’t rely on people responding to a newspaper advert to sign up for a course or a GP telling them to get in touch with us. It also gives us the time to offer emotional as well as practical support.’ John, Arthritis Champion, Cheshire
‘People have been surprised by how much we could help their situation. Many did not know about Arthritis Care or the local branch but we are now getting it out there so more people know we are here when they need us.’ Jan, Arthritis Champion, Cheshire
‘It’s very rewarding when someone comes up with a problem and we can help. Sometimes the doctors don’t have time to fully analyse their problems – they might say it’s natural to get pains as they get older. So it’s a nice feeling when we’re packing up and we know three or four people are really happy that they’ve received helpful information from Arthritis Care that they might not have had from the doctor.’ John, Arthritis Champion, Llanelli, Wales
What health professionals have told us?
‘It has given my patients with arthritis tremendous support and confidence to deal with their joint related issues. It has empowered them to try new things and helped lift their spirits considerably.’
Dr.Rajan Rajesh, Frodsham Medical Practice, West Cheshire
‘We recognise that promoting self management with this type of approach can make a big difference to individuals’ lives, allowing them to take more control over their condition by advising on factors like improved diet, increased exercise and reducing isolation that traditional health services find hard to influence.’Dr. Steve Ollerton, Practicing GP and Clinical Lead, Greater Huddersfield Clinical Commissioning Group
Future plans
We have received funding from the Department of Health Volunteering Fund to establish Arthritis Champions in three areas in the North of England (Kirklees, Leeds and Central Lancashire). As part of this funding, we will begin an independent evaluation of Arthritis Champions in 2015. This evaluation will consider:
- Formative aspects: related to the delivery and management of Arthritis Champions and
- Summative: examining the effects and outcomes of the project.
The formative evaluation will examine how Arthritis Champions actually works and the quality of its implementation by considering the organisational context, staff, procedures, inputs and so on. The summative evaluation will focus on what has been achieved, assessing whether the project can be said to have caused the outcome or result. It will also consider any unintended or unexpected outcomes and involve estimating the relative costs associated with the project. The evaluation will aim to identify good practice as a result of the project.
We hope the evaluation will help us understand more on how the use of peer volunteers improves the health and wellbeing of participants as well as benefits the volunteers themselves, and positively impacts on their use of healthcare, including any cost savings.
Contact for more information
Stewart Long
Director Nations & Services
Arthritis Care
T 0207 380 6575
M 07836 675 104
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