Fibromyalgia

Nick Thomas-Symonds Excerpts

Wednesday 1st July 2015 Westminster Hall

[Alok Sharma (Reading West) (Con)]

I beg to move,

That this House has considered treatment of fibromyalgia.

It is a pleasure to serve under your chairmanship for the first time in this Parliament, Mr Crausby. I welcome my hon. Friend the Minister to his place. He did brilliant work in his two Departments in the last Parliament, and I am sure that he will continue to excel during this.

I want to use this debate to throw a spotlight on a not particularly well known or medically well researched, but incredibly debilitating condition: fibromyalgia. I shall set out the views of some of those suffering from the condition, highlight the treatment available to help sufferers and, ultimately, make a few suggestions as to what can practically be done to improve life quality for those debilitated by fibromyalgia.

The last debate that I held in Westminster Hall was on sentencing for dangerous driving. That attracted significant interest from and participation by fellow Members from across the House. As you can see, Mr Crausby, today’s debate has attracted more modest interest. That is not because fibromyalgia is not a serious medical condition, but simply because it is not particularly well known, not least within some parts of the medical community.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Does the hon. Gentleman agree that a critical issue is awareness— public awareness and the awareness of sufferers themselves of what help is available? To give just one example, local support groups can be tremendously helpful. This is a two-track issue: it is about public awareness and the awareness of sufferers themselves.

[Alok Sharma]

Yes, of course; the hon. Gentleman is absolutely right. I shall go on to provide more details of what is going on locally and perhaps what we ought to be doing nationally.

I first learnt about the condition almost by accident a few years ago, through a chance conversation with some constituents. Since then, through the work of the excellent Reading fibromyalgia support group, which meets regularly in my constituency, I have been able to learn more about fibromyalgia and meet many of the people locally who are trying to cope with the condition, as well as medical practitioners who are focused on helping sufferers.

--- Later in debate ---

[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— 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 at NHS England for improving outcomes for long-term conditions, 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, FMA 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 on 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, raise the profile of a disease in this place and elsewhere, build a head of steam, bid for research projects—the NIHR stands open and ready to receive bids—and 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 on 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.

Question put and agreed to.