Recognition of Fibromyalgia as a Disability

Justin Madders Excerpts

Tuesday 15th January 2019 Westminster Hall

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. I congratulate my hon. Friend the Member for Chesterfield (Toby Perkins) on securing this debate.

I have an interest to declare: my wife is a fibromyalgia sufferer. I want to talk primarily about her experience of the condition. Perhaps the hardest symptoms to understand are the ones that we cannot see. The fatigue literally wipes her out for days at a time. There is also the pain: to the outside world she looks okay, but underneath she is suffering. In her own words, she said:

“I do experience various aches and pains. These can differ from aching muscles to painful joints, especially knees and ankles; tenderness all over my skin like I’m covered in a thousand small but painful bruises; and sometimes it feels as if every bone in my body is burning.”

Of course, I just want to give her a hug, but doing that makes her wince. It is so frustrating knowing that I cannot help.

My wife considers the cognitive challenges—the “brain fog”, as she calls it—the most irritating symptom. She also said:

“Sleeping does not come easily. It is very difficult to get to sleep and when I fall asleep, I wake up within minutes.”

There is not enough time to go through all the symptoms, but we have heard about many of them today. The biggest thing I would like the Government to take away from today is the experience we had in getting diagnosis and treatment. My wife said:

“When I was first diagnosed with fibromyalgia, three years ago, I was actually quite relieved…I knew things were getting worse. Despite numerous tests, there seemed to be nothing wrong with me.

I recall multiple visits to my doctors where I would tell them how exhausted I felt and they told me that I was probably depressed—that being a working mum with three kids was tiring and difficult.”

Hearing that just made her despair.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

On that point, my constituent James wrote to me saying that a lot of medical professionals look at him as if the condition does not exist, and that the worst part is that nobody understands it and it is not recognised. He got zero support. He suffers from physical depression. The antidepressants do not work and he cannot get the support or the treatment that he needs from the NHS.

[Justin Madders]

That is exactly the experience that we have had and so many other hon. Members’ constituents have had. Speaking about how she felt before she got her diagnosis, my wife said:

“Sometimes, just having a bath would wear me out. I spent most weekends in bed or on the sofa…I just had no energy to move. I couldn’t do stuff with my children or even cook dinner. And I couldn’t understand why I felt like this. I knew other people got tired, but they still managed to live their lives. And so I thought I must just be lazy or completely lacking in any self-control…So when I was finally given my diagnosis, I was pleased that it wasn’t just me making it all up. It was not all in my head or character flaws leading to laziness and ill-discipline. I was and am actually ill. This is something beyond my control. And although it might be unfortunate, at least I now knew what it was.”

I was relieved as well. I knew that something was wrong, but I did not know what. On reflection, I think we both realised that she probably had the condition for years and all the time it was getting worse. We knew something was wrong, but we felt that nobody was listening.

[Tonia Antoniazzi (Gower) (Lab)]

The most shocking thing about fibromyalgia is that it mostly affects women—seven women to one man. My constituent came to visit me on Sunday at a surgery and she has just emailed me now to say that after that five-minute meeting it has taken her until today to recover. Does my hon. Friend agree that we cannot continue to ignore this?

[Justin Madders]

That is certainly something I recognise. My wife tries to live by pacing herself. That is the only way she can manage her condition. She knows it is a lot worse in winter than in summer and it will flare up if she over-exerts herself. She can save energy for specific occasions, for example a conference, work or an evening out, but no matter how much she plans, it can catch her out. She will be too exhausted or in too much pain to meet a deadline or go to a meeting. She ends up giving her apologies and feels that she is unreliable. She has practically given up trying to plan social things in advance. It is incredibly frustrating.

Unless more research can be done into this condition and more awareness raised among the medical profession and employers, fibromyalgia suffers will continue to be disadvantaged by more than just their symptoms. For us, this is not just about how fibromyalgia is classified under the Equality Act 2010, but, in common with many recurring and fluctuating conditions, about how people with these conditions are treated and supported. There needs to be much more research into the condition alongside consistent treatment pathways, with better training for medical professionals to recognise and then treat the symptoms.

Services should be in place to support fibromyalgia sufferers to enable them to live their lives as fully as possible. It has taken my wife two years, at her insistence, to be referred to a pain management clinic. A year on, she is still waiting to be seen. All the time she is suffering and her condition is deteriorating. I hate what this condition has done to my wife and our family. It is so frustrating not being able to help her make the pain go away, not being able to help her find a way for her to live her life as she should. It is so frustrating that there appears to be no hope on the horizon that things will get any better soon.

--- Later in debate ---

[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.