On the 11th May 2016, a Fibromyalgia Awareness event took place in Parliament, hosted by Andrea Jenkyns MP, and organised by Fibromyalgia Action UK (FMA UK).
The event was well attended by MPs, researchers, healthcare professionals, students and people living with fibromyalgia, their families and carers. There will be some exciting outcomes of this event resulting in greater collaboration of different stakeholders in the fibromyalgia field: patient organisations, healthcare professionals, researchers and policy makers.
During the event Dr Toby Garrood, a consultant from the Guy’s Hospital fibromyalgia clinic, gave an overview of the award-winning and excellent fibromyalgia multidisciplinary service, which can act as a role model to be replicated easily and for low-cost in rheumatology departments of hospitals across the country. FMA UK will look at how to facilitate the spreading of the knowledge about this service to relevant healthcare providers, CCGs, the NHS England and the NHS in devolved nations.
As part of preparing for the event, FMA UK started a good conversation with NHS England on service delivery for fibromyalgia patients; and this will be followed up, including considering how to make information about the fibromyalgia clinic in the Guy’s Hospital accessible to healthcare providers.
During the event we heard a briefing from NHS England on multidisciplinary clinical networks project, run in collaboration with ARMA (Arthritis and Musculoskeletal Alliance), of which FMA UK is a part. Federico Moscogiuri, the CEO of ARMA, gave an overview of the clinical network project and the exciting prospects it provides for collaboration and sharing knowledge amongst the different stakeholders in the musculoskeletal field.
Andrea Jenkyns MP opened the event and told her personal story of living with fibromyalgia. John Nicolson MP spoke about his personal experience of having a close family member living with fibromyalgia. A number of patients spoke and shared touching and moving stories about how fibromyalgia affects their lives and what they do to manage the condition. Ella Vine, Executive Officer of FMA UK, gave an overview of the current situation of fibromyalgia in the UK and called for a greater collaboration of all the groups involved in fibromyalgia: doctors, patients, patient organisations, researchers, MPs and policy makers. The outcome of the meeting is that all the groups mentioned need to work together and talk to each other in order to achieve change, and that a positive change is achievable. Ella has also called for an effort to get the data released on how many people currently are diagnosed with fibromyalgia in the UK.
Dr Kim Lawson, a researcher from the Sheffield Hallam University presented the research he is currently undertaking on the treatment of fibromyalgia. He said that there are three main pillars to better treatment of fibromyalgia: acceptance, diagnosis and management. Dr Lawson spoke about the slow, albeit steady progress in the understanding of the biology of fibromyalgia, as more research is coming through. He also spoke about the current problems with acceptance of the condition and with diagnosis – where the diagnosis in the UK takes on average 8 years.
Dr Lawson said that we need to have a faith and confidence that positive changes will be achieved, and he called for support and backing to novel approaches to fibromyalgia, for example, CBT (cognitive behavioural therapy) and treatments that already exist, which can be utilised to treat the symptoms of fibromyalgia, like physiotherapy, CBT, relaxation techniques etc. He quoted a research paper from 2006 that shows a huge fibromyalgia-related cost to the government and asked that something be done urgently to lower costs and save government’s money. FMA UK supports that call to action.
Dr Toby Garrood said that we need more fibromyalgia clinics that treat the whole spectrum of symptoms rather than just treating the pain on its own. He said that “you cannot treat the pain without treating anxiety, depression and many other symptoms” hence a multidisciplinary and a holistic approach is the most effective. Dr Garrood said that listening is the most important thing a doctor can do; also to understand the impact fibromyalgia have on lives. In the Guy’s Hospital Fibromyalgia Clinic there are rheumatologists, physiotherapists, psychologists, all are involved in patient’s holistic treatment. Dr Garrood would like that model to be replicated everywhere: “any rheumatology department can do that,” he said.
Dr Garrood spoke about the reluctance of doctors to diagnose fibromyalgia, which results in patients suffering unnecessarily. He called for an early diagnosis and early treatment. He mentioned the issues of disability and work and said that “it is in everybody’s interest to get the patients better”.
Federico Moscogiuri of ARMA has also advocated a holistic approach, which ARMA promotes: looking for a more preventative, more-person-centred approach with a better understanding and awareness of the impact musculoskeletal conditions have on individual and on the society. Federico outlined ARMA’s partnership with the NHS, which promotes a coordinated care that not only treats the illness but is also preventative, keeping people healthy and at work. He stressed the importance of self-management and described ARMA’s awareness campaign in collaboration with Public Health England “One You”, which focuses on a prevention of disability and physical activity to keep people mobile.
FMA UK would like to thank everyone for attending and for their contributions and would like to thank Andrea Jenkyns MP for hosting this landmark event, which hopefully will lead to exciting things and will start collaboration between the different stakeholders.
FMA UK would like to also thank all other MPs who attended the event: John Nicolson MP, Jack Lopresti MP, Philip Hollobone MP, Alex Chalk MP, Paul Maynard MP, Brendan O’Hara MP, Natalie McGarry MP, Mark Durkan MP and Nick Thomas-Symonds MP – and those MPs who couldn’t attend but take an active interest in the issue of fibromyalgia.
If you have any questions related to the event email Ella Vine ella.vine@fmauk.org
Information on the Fibromyalgia clinic at the Guy’s Hospital:
http://www.guysandstthomas.nhs.uk/our-services/rheumatology/specialties/fibromyalgia/patients.aspx
Guy’s Hospital fibromyalgia clinic won the Best Practice Award by the British Rheumatology Society:
http://www.rheumatology.org.uk/publications/best_practice/guys_and_st_thomas_nhs_foundation_trust.aspx