Recognition of Fibromyalgia as a Disability

Angela Crawley Excerpts

Tuesday 15th January 2019 Westminster Hall

[Angela Crawley (Lanark and Hamilton East) (SNP)]

It is a pleasure to serve under your chairship, Mr Bailey. I congratulate the hon. Member for Chesterfield (Toby Perkins) on securing the debate and on his efforts to ensure greater recognition, research and understanding of fibromyalgia through the mechanisms of the House. I am only sorry that the debate is in Westminster Hall, where the amount of time is so compressed, and that, because of the structures of this place, most hon. Members have had less than three minutes to say what they wanted.

I will try my best to say as much as I can in the limited time I have, but many constituents who have written to me will not be given a fair hearing, which is unfortunate. I know Brexit is going on today and that is important in its own right, but this is equally important to my constituents and it impacts on their lives. I do not think that we are doing them any justice with the limited platform that we have.

As we have heard, fibromyalgia is a chronic condition with symptoms that can be constant or intermittent for years, or even a lifetime. Hon. Members of all parties have said that fibromyalgia can be difficult to diagnose, because the nature of the conditions fluctuates and symptoms often vary. As various Members have said, it has a huge impact on loved ones. The personal contributions of the hon. Members for Carmarthen East and Dinefwr (Jonathan Edwards) and for Ellesmere Port and Neston (Justin Madders), and the personal experience of the hon. Member for Morley and Outwood (Andrea Jenkyns)—who called for the Government to recognise and support people, especially those experiencing depression—are really important.

My hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) rightly called on the Government to recognise the condition as a disability and to look at the way that the Department for Work and Pensions system assesses it. The tick-box exercise is not flexible and does not recognise the impact of the condition. I share the frustration of my hon. Friend the Member for Glasgow East (David Linden) that this platform does not do justice to the subject at all. It is unfortunate that limited speaking times have taken over the debate and a lot of people have not been able to say as much as they would have liked.

Many of those suffering from the condition continue to work. Many constituents who have contacted me are not solely reliant on the social security and welfare system of this Government. They continue to work and want to contribute. There is nothing more soul destroying than having a debilitating condition when all they want to do is go out and provide for their families.

When people are unable to work because of fibromyalgia, it is right that the social security system should help them. For many people, additional support from personal independence payments and other forms of support allows them to reduce their hours and manage their condition. Yet many people find, when it comes to reassessing and reapplying for support, that being seen to be self-managing or trying to manage their condition goes against them. The current process goes completely against trying to manage a condition and continue working. That is exactly what anyone would want to do, and hopefully any self-respecting member of this Government appreciates that these people are trying their best to hold jobs as well as manage their condition. The DWP system should not hold that against them.

I will take the limited time I have to give voice to my constituents. Vivian says:

“The problem is, I look okay on the outside. I can string sentences together. I also make eye contact in social situations, but the process itself is so degrading. Stress makes my fibromyalgia worse, meaning more pain for me and I can hardly move. I take as many painkillers and diazepam as I can to lower my pain to a point where I can move without looking sore. What makes me mad is the appeal board know how fibro affects people, yet still have these processes in place. Surely our system of benefits must shake-up if this is how people with genuine illnesses are treated?”

I hope that the Minister will take that on board.

The reality is that for someone to sit there with a form and tick boxes, and fit people into a condition that says they can make eye contact, do their make-up, walk a distance, is a degrading process. I do not think that is something that we would want to go through ourselves, so why would we administer a process that puts other people through that, especially when we have the ability to change it? I do not think it is that hard to devise a process that fits the condition. Alter it slightly, vary it, create flexibility, but for God’s sake do not have a system that degrades people further when many are already at their lowest point.

I do not believe that the Government are doing enough to support people who wish to return to work or self-manage their condition. Another constituent, Donna from Carluke, recently decided to return to work on a part-time basis. She has had to adapt to her illness and, after two years of treatment, agreed to return to work. She works only mornings because she needs the afternoons to sleep, in order to manage her condition and look after her children in the evenings. She was claiming personal independence payment to allow her to work part-time and to supplement her earnings. However, Donna is currently in the process of challenging a refusal to be granted personal independence payment; the process assessor thought she did not need that additional support, because the tick-box exercise does not recognise her condition. The cut in the support that she receives from the disability element of the working tax credit and a council tax reduction means that her household budget is cut by £750 per month, which is more than she earns for working part-time. She still wants to continue to work. She feels she would be better off not working, but she continues to maintain her part-time job and to manage her condition because she has two young boys and she wants to set them an example. That is nothing short of admirable. This woman has gone through years and years of trying to get a diagnosis and a lot of personal stress and trauma in her life, yet she continues to work and give a prime example to her sons. I do not think anyone should be penalised for that.

William from Netherburn was forced to give up work because of the dramatic changes to his lifestyle. He has many other conditions on top of fibromyalgia. He is in constant pain, goes numb and has acute memory problems, yet he was awarded the lowest rate of care when moving from disability living allowance to personal independence payment. This is a flaw in part of the process of transitioning people from their legacy benefits. It is something that could have been altered. There have been countless debates about that in the House. Obviously, it is easy for the Opposition to criticise the Government, but we have given ample opportunity and made many suggestions about how to review, change and adapt the system. It cannot be that hard to adapt a system, even slightly, to recognise that it is not user-friendly for anyone with a condition.

A close friend, Emma Richmond, who I have known since I was 17, was one of the most lively, vivacious, bubbly people I have ever met, but in the last two years I have seen a huge change in her because of this condition. I want to use her words, not mine. She said:

“At the age of 30 I’m using a cane and find I’m losing my social life to pain. Every day I’m in pain and it has never let up. There are days when I can’t get off the sofa due to the pain and fatigue. It’s a debilitating condition. It’s a humiliating condition. I get to the stage where I don’t see why I’m here anymore. I fight to be normal every day. It’s not like me to feel like giving up.”

Emma, like others I have spoken about today, has a full-time job. She works for Her Majesty’s Revenue and Customs, of all Departments. They have been an understanding employer, which prompts the question that if a person who works for a Government Department can have that level of understanding and flexibility, why cannot an individual in society, who engages with other services and other Departments, have exactly the same flexibility and understanding? It seems highly hypocritical, but it shows it can be done—I believe it can be. The Government only have to make minor modifications and changes to the system to deliver the best services they can. With respect to the Minister, I know she always wants to do that.

I ask the Minister to discuss this with her colleagues in the Department and look at the many ways in which the initial assessments can be made fair for people with fibromyalgia and mental health issues to avoid them needing to go through the taxing and arduous appeals process. An appeals process that consistently overturns decisions is clearly flawed. I ask her to get to the root cause, and make the process fairer and more flexible, for my constituents and for my friend. I want to be able to ensure that they enjoy their lives as much as we all can.