Recognition of Fibromyalgia as a Disability

Sarah Newton Excerpts

Tuesday 15th January 2019 Westminster Hall

[The Minister for Disabled People, Health and Work (Sarah Newton)]

It is a pleasure to serve under your chairmanship today, Mr Bailey. I begin by paying tribute to Adrienne, who I believe is with us today in the Public Gallery. It is through her persistence and determination to use the mechanism of petitioning Parliament that we are here in Westminster Hall today. It is a really good example of how people all around our country can ensure that their voices are heard in this place, so I congratulate her on that.

I also pay tribute to the hon. Member for Chesterfield (Toby Perkins), because he picked up on that opportunity and worked with his constituent. I am very pleased to say, as my hon. Friend the Member for Southend West (Sir David Amess) and everybody else has done, that the hon. Member for Chesterfield is a champion. It is great that he has championed this cause, raised awareness of the issue and made sure that all of our public services are doing everything they can to help people with fibromyalgia, because we have heard today how absolutely debilitating the condition can be and how many people it affects.

Today has been a really good opportunity to build on the work that has been done with the petition and have this debate. I share the frustration that so many people have mentioned that we do not have time to address all the issues that have been raised and hear from the many people who have written to Members across the House because they want their individual voice to be heard.

Before this debate, I extended an invitation to the hon. Member for Chesterfield to bring his constituent into the Department. What we are discussing is a cross-Government issue; it affects the Equalities Office, which is the custodian of the Equality Act 2010. There has been much discussion about what more we can do about health services and research, so I will ensure that, along with me as Minister responsible for the main disability benefits, we have Ministers from the relevant Departments at a roundtable and summit, so that we can properly work with the information that has been provided today and with the great organisations that are undertaking research and standing up for those with fibromyalgia.

I pay tribute to my hon. Friend the Member for Morley and Outwood (Andrea Jenkyns), and to the wonderful husbands who have spoken about wives who are suffering. It is brave of Members of Parliament to stand up and talk so personally about situations that have such a detrimental impact on them. It is difficult for MPs to admit to any sort of weakness; we live in fear of our constituents thinking less of us for expressing that we have a condition or disability that might be perceived as a weakness. However, it is vital that people with disabilities and health conditions are in this place, because they have an important role to play in society. I am absolutely determined to ensure that we have a society in which we focus on what people can do rather than on what they cannot, and in which they are supported to reach their full potential.

I will now draw on some of the points I have been asked to raise. On the support in the health service, we have heard that it is clearly too intermittent. I know that there are good examples; colleagues in the Department of Health and Social Care have told me that there are bespoke services for people with fibromyalgia, but we have heard from colleagues today that it is too much of a postcode lottery and that the services are not consistent. That stems from the fact, which has been recognised today, that it is a difficult condition to diagnose. Because the way in which fibromyalgia manifests is unique to each person, general practitioners want to ensure that they rule out the possibility of other conditions. We have heard so powerfully today that no two people are the same, so GPs, in the absence of a diagnostic tool, need to explore many different avenues before they can get to a diagnosis of fibromyalgia.

[Justin Madders]

It is not just about the postcode lottery. Many GPs do not really know about the condition, and we need to get more understanding out there. My wife saw a number of doctors before she got a diagnosis. Also, her experience of gaining specialist help to access the pain clinic, which hopefully she will do later this year, was that she had to be referred to a rheumatologist to get a diagnosis and then was referred back to the GP, to refer her on to the clinic. That is a pretty inefficient way of doing things.

[Sarah Newton]

The hon. Gentleman makes a very important point, but I understand that to help GPs the Royal College of General Practitioners and Arthritis Research UK have developed an e-learning course on musculoskeletal care, which includes fibromyalgia and is free to all healthcare professionals. It aims to improve core skills in diagnosing and managing any musculoskeletal condition. A medical guide on diagnosis and treatment has also been developed by the Fibromyalgia Association UK, and a mandatory core component of all GPs’ training is an applied knowledge test. This AKT is a summative assessment of the knowledge base that underpins independent general practice in the UK, within the context of the NHS. The content guide for the Royal College of General Practitioners, which serves to prepare trainees for the test, includes specific reference to a required knowledge of fibromyalgia. Clearly, therefore, there is now a consistent attempt to ensure that GPs going through training and coming into general practice have a much better understanding of how to diagnose and treat fibromyalgia than we have seen hitherto.

[Sandy Martin]

Fibromyalgia affects one in 20 women, so it seems bizarre that so many GPs still do not know about it. Training for incoming GPs is clearly effective, and needs to be so, but an awful lot of GPs still possibly need retraining. Fibromyalgia is not the only such condition. An awful lot of GPs have never heard of endometriosis, for instance, which affects one in 10 women. Ought we not to have a system in which GPs are regularly trained in these additional diseases and conditions that affect so many?

[Sarah Newton]

The hon. Gentleman is right. There are so many conditions that we are beginning to understand, as more research and information comes forward, and continuous education for GPs is vital. I understand from the Department of Health and Social Care that such education is ongoing and that there is free learning material for GPs on fibromyalgia.

[Wera Hobhouse]

Will the Minister give way?

[Sarah Newton]

I am really tempted to give way to lots of colleagues, but the more I do the less time I have to address the issues that have already been raised. I have taken a number of interventions, but as the clock is against me I will now press on and try to address as many of those issues as possible, bearing in mind that there will be a follow-up meeting and, as always, I will write to those Members whose particular concerns I do not address in my few remaining minutes.

My hon. Friend the Member for Southend West invited me to invest. We clearly have long-term investment in the NHS, and plans for significant extra investment over the next 10 years have recently been communicated, with a disproportionate amount going into primary care and community services. Since each person is affected in such different ways, the pathway and range of care that people need will largely be co-ordinated in the community, with GPs. The new investment gives us hope, but alongside it we need to ensure that there is both education and training, and improved pathways. The one message I have heard clearly today—I know this from cases in my own constituency, of working with women affected by fibromyalgia—is that people are ping-ponged around the system, between physical and mental health services, with no joined-up care pathway. With so many other chronic conditions, the NHS has got so much better at having evidence-based pathways, so that once people have their diagnosis they understand the pathway they are on, and those who are able to support them know what support is available.

We need to take away and work on so much more from this debate. As many Members have said, it is about getting the ball rolling, ensuring that voices are heard loud and clear, and that we work across Government and the House to improve the quality of life of people with fibromyalgia.

On the benefits system, I want to assure people that fibromyalgia is recognised as a disability under the 2010 Act. It is really important for people to understand that. We have heard today that no two people are affected in the same way, so it is important that we have a person-centred approach to providing support, whether that is encouraging employers to be more aware of fibromyalgia and of the reasonable adjustments they need to make to enable people to stay in work, or looking at how the benefit system supports people.

The benefits system uses a person-centred approach, and I can absolutely reassure Members that the healthcare professionals who undertake the work capability assessments for the employment and support allowance, which is the income replacement benefit for people who cannot work, and the assessment providers for the personal independence payment, or PIP, which is a non-means-tested benefit for people both in work and out of work, have had training in fibromyalgia. A lot of that has been done in the past year, in association with voluntary sector organisations that have provided support. Members will know, because we are often in debates about improving PIP, that I am absolutely determined to ensure that we make the improvements to which we have already committed, so that everyone has access to the support they deserve.