George Freeman sets out the case for research into fibromyalgia

1st July 2015

George Freeman responds to a debate on the treatment of the debilitating condition fibromyalgia and what can be done to improve sufferers’ quality of life.

The Parliamentary Under-Secretary of State for Life Sciences (George Freeman): I congratulate my hon. Friend the Member for Reading West (Alok Sharma) on securing a debate on this important issue. In his constituency, he has shown great support for his local fibromyalgia patient group by advocating on its behalf, raising money and raising the profile of the disease, which is so debilitating for its sufferers. He has helped the group to continue its important work of improving awareness of the condition and providing advice to patients and their families. I pay tribute to the work of FMA UK, other fibromyalgia charities and the many patient support groups around the country who work tirelessly to raise the profile of the disease and support those who are affected by it. I welcome today’s merger of FMA UK and FibroAction, which will help to give a stronger patient voice to those who are affected.
 
Fibromyalgia is an incurable musculoskeletal condition of unknown cause that can have a debilitating impact on those who are affected. Although no exact figures are available, research suggests that fibromyalgia affects around 2.5 million patients in the UK, the majority of whom are women over the age of 40. Fibromyalgia symptoms affect the soft tissues, muscles, tendons and ligaments of the body and result in widespread and variable pain throughout the body. Poor-quality, non-refreshing sleep contributes to an ongoing cycle of chronic pain and fatigue, and, in some cases, poor concentration and short-term memory problems. Irritable bowel syndrome, restless legs, head and neck pain and sensitivity to temperature change are also associated symptoms of fibromyalgia. The symptoms and their severity differ from patient to patient.
 
Diagnosing the symptoms of fibromyalgia can be challenging for GPs. Some 20% of the general population consult their GP about a musculoskeletal problem each year, which amounts to more than 100,000 consultations a day. The symptoms of fibromyalgia are common to other conditions such as rheumatoid arthritis, lupus and chronic fatigue syndrome. In addition, patients with fibromyalgia can often visibly appear well, despite their symptoms. GPs face a further obstacle because there is no diagnostic test that accurately identifies the condition. A diagnosis is usually made via a process of diagnostic investigation to exclude other potential causes of the patient’s ill health. It is, therefore, important that clinicians have the training, tools and resources to help them identify fibromyalgia symptoms when a patient presents.
 
Musculoskeletal conditions are a key part of the generalist undergraduate MBBS medical curriculum. The General Medical Council requires that the MBBS curriculum provides enough structured clinical placements to enable students to demonstrate the outcomes for graduates across a range of clinical specialties, including musculoskeletal health. Musculoskeletal health is also a key component of GP training, and the Royal College of General Practitioners’ curriculum statement on musculoskeletal conditions sets out that GPs should be able to diagnose and manage common regional pain syndromes such as fibromyalgia.
 
In addition to their clinical training and experience, GPs have at their disposal a number of tools and resources. They include: the Map of Medicine, an online evidence-based guide and clinical decision support tool available to GPs and other healthcare professionals in the NHS, which has a fibromyalgia and chronic pain pathway, and helps clinicians to identify the symptoms and make the right referral; a free e-learning course on musculoskeletal care, including fibromyalgia, developed by the RCGP and Arthritis Research UK, which aims to improve skills in diagnosing and managing musculoskeletal conditions; NHS evidence services, which provide access to a vast online repository of clinical knowledge and guidance covering a wide range of conditions, including fibromyalgia; and a fibromyalgia medical guide for health professionals developed by FMA UK.
 
Once a patient is diagnosed with fibromyalgia, a number of treatment options are available to them. In the absence of a cure, relieving pain and restoring quality of life are the primary clinical goals. Treatment options include pain relieving medication, physiotherapy, dietary and exercise advice, counselling or cognitive behavioural therapy, and self-management programmes to give patients the skills and confidence to manage their condition. The routine assessment and management of pain is a required competency of all health professionals. Many patients can have their fibromyalgia successfully managed through routine access to locally commissioned services via GPs, and community and secondary care services. I will turn to my hon. Friend’s point about specialist clinics in a moment.
 
Jim Shannon: The hon. Member for Reading West (Alok Sharma) and I asked how we can raise awareness within the GP profession to ensure that GPs understand the symptoms of fibromyalgia and diagnose it earlier. As I pointed out in my intervention, only 3% of people in Northern Ireland have been diagnosed with the condition, but the number of people who suffer from it is far larger. There seems to be a gap between those who have been diagnosed and those who have not. Is that because GPs are not really aware of the condition? How can we make them more aware?
 
George Freeman: The hon. Gentleman makes an excellent point, and he is helping to raise awareness today. I will pass on the points made today to the team at NHS England with responsibility for this issue. The answer to the question on awareness is to support debates such as this, and to promote the work of the charity and the patient advocacy groups.
 
The routine assessment of pain is a required competency for all healthcare professionals. However, patients who remain in high levels of pain after conventional approaches to treatment have failed are able to access specialised pain services, which are nationally commissioned by NHS England. Patients referred to such services receive multidisciplinary team care from clinicians with expertise in pain management.
 
Mr David Jones: The Minister heard my earlier intervention, and he now mentions specialised pain relief centres, most of which are located in England. He also heard my points about the bureaucratic difficulties experienced by patients living in Wales when accessing such centres in England. Will he liaise with his colleagues in the Welsh Government on whether a smoother path can be achieved for patients from Wales?
 
George Freeman: My right hon. Friend is an outspoken advocate for addressing such needs in Wales, in health as in other issues. He will know that pain centres in England are distributed evenly, but they are a devolved matter in Wales and the other devolved Administrations. I will happily write to the relevant people in Wales to highlight the importance of this condition and what we are trying to do in England, and to encourage them to adopt similar best practice. I cannot vouch for their response and, as in other areas, it is a matter for the local Assembly, but I will happily pick that up.
 
In addition to the specialised pain services that are available, a number of NHS trusts provide dedicated fibromyalgia clinics, such as that at the Royal National hospital for rheumatic diseases in Bath. That clinic offers expert support and advice, as well as a fibromyalgia coping skills programme to facilitate self-management. Some constituents of my hon. Friend the Member for Reading West have raised concerns about the co-ordination of their care; I reassure him and them that improving care and support for people with long-term conditions, and improving the co-ordination of that care, is a central ambition of this Government, as reflected in our mandate to the NHS.
 
Nick Thomas-Symonds: Is there not also a social aspect to this—the issue of sufferers being able to support each other? I am delighted to hear the Minister’s point about co-ordination, because improving co-ordination is crucial to such support being more widely and more consistently available across the UK.
 
George Freeman: The hon. Gentleman makes an important point. Such co-ordination is happening across different therapeutic areas. Charities have a role in providing a strong voice for patient empowerment. Patient networks, increasingly including social media, allow us to advance the voice of disease sufferers in research, treatment and patient support. I am delighted by the news of today’s amalgamation of the two charities, which can only be a good thing for developing wider understanding and a patient voice in new treatment pathways.
 
We want everyone with a long-term condition—currently around 15 million people—to be offered a personalised care plan that sets out their needs and preferences for care. Martin McShane, who is responsible for improving outcomes for long-term conditions at NHS England, and Peter Kay, the national clinical director for musculoskeletal care, are working hard to make that happen. I will ensure that the points raised today are passed on to them as part of that work.
 
My hon. Friend the Member for Reading West mentioned research. Nationally, the Department of Health has substantially increased overall medical research investment from £885 million a year in 2010 to the more than £1 billion allocated for 2015-16. The usual practice of the Department’s National Institute for Health Research, for which I am responsible, is not to ring-fence funds for expenditure on particular topics but to invite and assess research proposals in all areas. Although no fibromyalgia projects are currently funded by the NIHR, the European Commission is contributing nearly €6 million to a project seeking better ways of treating chronic pain, including fibromyalgia. I look forward to the results after the project ends in 2018, and I urge hon. and right hon. Members who are present, Fibromyalgia Action UK and the patients it represents to feed their comments into that project and to welcome the results.
 
We are considering further ways to showcase the world-class research funded by the NIHR, and we are working in this place, and with the public and charities, to drive accountability. I am working with the NIHR to put together a parliamentary open day to allow Members such as those who have spoken today to see where the £1 billion a year is spent, and to work with charities and patient groups on making applications.
 
A number of colleagues on both sides of the House have talked about discrimination in the workplace, which is a serious concern for people both in my hon. Friend’s constituency and in local fibromyalgia support groups. It is completely unacceptable if patients with long-term conditions are misrepresented as malingerers at work. Historically, we have seen that happen with other conditions, and as research and understanding of the disease develop, we need to be aware that people who present with conditions that are not well understood may be suffering from diseases that have yet to be properly diagnosed. People with long-term disabling conditions are rightly protected from discrimination in the workplace under the Equality Act 2010. Where a disability, such as one arising from a long-term condition, has been established, the Act requires employers to make reasonable adjustments to ensure that the disabled are not placed at a substantial disadvantage compared with their non-disabled colleagues. Failure of an employer in that regard could amount to direct disability discrimination under the Act.
 
My hon. Friend and a number of others spoke about the establishment of a network of specialist fibromyalgia clinics. We are aware of a number of dedicated fibromyalgia clinics across the UK, including the UK’s leading centre at the Royal National hospital for rheumatic diseases in Bath, but I will write to Martin McShane, the head of long-term conditions at NHS England, to ask whether more formal networks can be established and whether, with the support of active patients and charities, there is more we can do to develop such groups and to help them to support research into developing new treatments and pathways.
 
I genuinely thank my hon. Friend for his tireless constituency work to raise this issue, and I congratulate him on securing this debate. So much medicine begins with the small voice of misunderstood patients who get together through charities to promote research, to raise the profile of a disease in this place and elsewhere, to build a head of steam, to bid for research projects—the NIHR stands open and ready to receive bids—and to build cross-party support. I have no doubt that, in the years to come, this work, this discussion and this topic will come to be seen as one of those occasions when the more we come to understand a condition, the more we drive research into cure and diagnosis and the more we improve treatment across the NHS. I warmly welcome his leadership in bringing fibromyalgia to the House’s attention today.
 

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