As part of our Finding Freedom with Fibromyalgia course we were asked to produce a report in November 2023 for Redditch and District Borough Councils and Bromsgrove Primary Care Network and Associates Ltd. In the interest of transparency, we wanted to share this with you so it is publicly available. Testimonials from the group members have been shared with their permission, and any personal information has been removed.

Interim Data for Finding Freedom with Fibromyalgia 2023 – A course from Nine Tea Cups

Introduction

Affecting 2% of the population (FMAUK, 2023), Fibromyalgia (FM) is a centralised pain state  and manifests as widespread pain, fatigue and cognitive dysfunction. It has been the second most common reason for referral to a rheumatologist (after osteoarthritis) in Great Britain, diagnosis often taking many years. People with mild to moderate cases of fibromyalgia are usually able to live a near normal life, given the appropriate treatment.

If a person’s symptoms are more severe, they may find that they

• have to greatly modify their typical day,
• or find themselves not being able to hold on to a job.
• or enjoy much of a social life.

Background

In a study published in the BMC in 2022, it was found that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. With the greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services (1. UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study) | BMC Health Services Research | Full Text (biomedcentral.com), 2022).

An ongoing study carried out by PACFiND (PACFiND – Oxford University, 2023) – Patient-centred Care for Fibromyalgia: New pathway Design, with researchers from Aberdeen University, the Nuffield Department of Primary Care Health Sciences at the University of Oxford and other partners, to co-produce a new, evidence-based, costed plan for services for people with FM) has found in preliminary surveys with over 2000 FM patients and service providers, that any service developed must incorporate the following outcomes that are known to be important to people with FM, namely:

• Validation of patient experiences of signs and symptoms of fibromyalgia.
• Sustained and supportive relationships with skilled and knowledgeable health and/or social care providers over time to help build self-management and facilitate re-integration into life and society.
• Prompt access to interventions/programmes of health and/or social care that are coordinated across providers.
• Increased knowledge, skills and confidence to manage independently.

As of October 2023, there is no data on the cost of fibromyalgia to society: (FOI REF: FOI-2023-1471) Fibromyalgia diagnosis and the economy – Office for National Statistics (ons.gov.uk)

The program: Finding Freedom with Fibromyalgia

The program that we have developed with the support of Redditch and Bromsgrove Council meets the needs outlined above. When we started the course none of the participants knew what Fibromyalgia was, let alone how to manage the condition.

While each participant’s experience has been different, group members have reported:

• increased pain tolerance, with some members reporting a decrease in pain.
• increased mobility
• more confidence
• and community

The program uses a variety of methods and exercises that are rooted in an evidence-based background.

We have arranged talks from a pharmacist, a counsellor who has personally recovered from Fibromyalgia and specialises in supporting patients through recovery, and a pain management specialist from NHS West Birmingham and Sandwell.

The group members and all referrals’ symptoms fall into the moderate to severe group. All would recommend the course to other FM patients.

Written testimonials

A note on written testimonials; due to the toll of FM a participant has to manage their energy by pacing. By writing a testimonial this means using energy up that would otherwise be spent on showering, spending time with their children or grandchildren, or another important task. It is for this reason that they have been hard to collect.

“When I was asked to join this group from my doctor, I was told it would help and give me more information on fibromyalgia at first I thought I’m not going but I’m glad I did. It’s amazing what you can learn and listening to other peoples stories at times can be quite sad The pain that you go through with fibromyalgia is unbelievable. The problem is this illness is not believed by many people until they suffer with themselves. From this group. I have learnt that we all suffer in different ways and with the help and support of Hannah and Maxine, on showing us on how to breathe how to rest  Relax position our bodies, light, exercise and equipment that can help to ease the pain that we are in. I do hope that this course will continue for many people that is suffering. It is not often that you can find a course that is free that can help you with a long-standing illness  For one, I’m grateful for what I have learned, and for the lovely people that I have met and I hope to stay in touch with many of the ladies”.

“I have found this course so refreshing and wonderful on so many levels. Being amongst people suffering in the same way is comforting and reassuring. We share helpful information with each other about products etc that have helped us and support each other along the way. Our illness can often feel lonely and you feel isolated, but coming together each week as a group takes away this and everyone understands how you feel and you don’t need to describe your pain etc, people get it.

Hannah has organised and delivered the sessions brilliantly, beautifully assisted by Maxine. Each week we look at a different element of chronic illness. Hannah helps us understand the science behind things and then gives practical way sto help. I especially love the relaxation at the end and learning how to support different parts of my body will help ease the pain. Each week I go home with at least one tip to use for the following week. I also leave a lot more relaxed than when I went in. This course has been fantastic!”

“When I started the course I was 7 years into my diagnosis of Fibromyalgia. In that time of living with this condition I could see a massive degree of change in my life style and how it was affecting me as a whole person.

There were times when i could not understand the changes of what was happening and had no idea how managing my life on the day to day basis, making it harder as there is no knowledge of how to deal with the condition fir quite some time I felt alone and unheard by health professionals.

I went in sceptical when I was told of this course as the UK are not great at research into the condition, and being so limited on how-to research sources myself wondered what could possibly be gained from this course, but I had nothing to loose at this point I was at a loss and loosing my mind with it all.

Hannah and Maxine are a caring team and explain things in a manageable way that I can understand from the start. I was very overwhelmed in the first few sessions and this was recognised immediately. Time really was a big factor as it was established we needed more of it. I genuinely didn’t think I was going to benefit from being in the group but decided I would continue a few more meetings and review my opinion again.

I am glad I did, I am so so grateful that we have had these sessions of learning. We have been educated and taught what drives our painful lives and we have been shown ways on how to manage and maintain a level of support in ways to help ourselves cope with the chronic conditions we have.

The information alone has been invaluable and with the help of these lovely ladies and the hard work they have put into our sessions and providing materials to show us the benefits of use….ie massage ball, might look to a pain free individual a bit of fun, is invaluable…..it gives us back maybe an afternoon of energy that we would not have had previously. For me managing my pain and stress were a very big source of my energy loss and without this course I would never have been aware of the way and how I could benefit. I fully support further research and support for this group as if it was a lifeline for me ….then think if the growing number of individuals this is happening to it could help.

Hannah has worked tirelessly for this campaign and is dedicated to supporting others understand thier bodies and ways to manage it. I also am very grateful to the individual that was able to put into action this course and support this Chronic condition.”

“I have suffered with Fibromyalgia for a number of years and have never truly understood it until I joined the Fibromyalgia group. I have learned so much about the constant chronic pain I suffer from the tips of my toes to the top of my head. Hannah has taught me not to push my body beyond my pain limits, when to rest and relax and not feel guilty for doing so. It has also been good to be in a group of people with the same condition, who understand the pain you are going through and that has made a big difference to me. Hannah and Maxine have worked tirelessly for the group, organising not only our group sessions but also zoom sessions out of group time. In my opinion the group sessions aren’t long enough and need to be 2hrs to get full benefit. I’m only sad that I am unable to finish the course due to travel plans, I am still being included in the light therapy program and Hannah is going to record any zoom meetings I miss. I only hope that the future of the Fibromyalgia program is secured and other sufferers can benefit as I have from this experience. May I take this opportunity to thank Hannah and Maxine so much for all the help and support they have given me”