Invisible Disabilities and Accessibility Challenges — House of Commons, 2019-06-05
Topic: Health
Justin Piers Richard Madders (Labour, Centre-left): I congratulate my hon. Friend the Member for East Lothian (Martin Whitfield) on securing this debate. It is an important issue. It is a shame that the Chamber is so empty again because every Member of this place will have constituents who have hidden disabilities. I also congratulate my hon. Friend the Member for Newport West (Ruth Jones) on her speech. She clearly has some relevant experience that she is bringing to this place I am pleased to be able to take part in the debate because I believe that the issue of hidden disabilities can have an immense impact on individuals’ lives. It is something we do not speak about enough in the Chamber. As some hon. Members may know from my contribution in a Westminster Hall earlier this year, my wife has an invisible condition—fibromyalgia—so I am well aware of how some of these conditions can be very hard to deal with. She can look perfectly okay on the outside, but she is really suffering on the inside. Fatigue can wipe out fibromyalgia sufferers for days at a time, and the pain experienced can vary from aching muscles and painful joints to extreme tenderness all over. There are cognitive challenges too, such as brain fog, insomnia and disturbed sleep. In fact, there are so many symptoms, it is not possible to list them all here. Just as with many of the conditions we have heard about today, the outside world cannot see that there is any issue at all My wife, like many others, has tried to find ways to manage her condition. She has to pace herself, plan ahead and make adjustments to keep her symptoms under control. That is the only way in which she can manage her condition. She does not always succeed—it still catches her out. It is incredibly frustrating and tough to know how best to help and improve things, which is why I, along with others, have called for greater awareness of the condition by the medical profession and employers so that fibromyalgia sufferers are not disadvantaged by more than their symptoms, and so that they have support out there in the world In common with many people with invisible, long-term and fluctuating conditions, what matters most to people with fibromyalgia is how their condition is treated and supported. Much more research is needed on the condition and how it begins. We need consistent treatment pathways and better training for medical professionals to recognise those symptoms and recommend treatment. There is a huge need for services to be put in place to support and enable people with invisible conditions to live their lives as fully as possible I should like to discuss the barriers that people with invisible conditions face in their everyday life, beginning with getting back to work. I recently spoke in a Westminster Hall debate on another invisible condition, arthritis. An estimated 16,000 people in my constituency live with back pain. Another 4,000 and 8,000 people respectively are estimated to live with hip and knee conditions. Those are just some of the estimated 17.8 million people who live with arthritis or related conditions across the country. About half of them live with pain every day. That is a staggering number of people coping in their everyday lives, while people around them are blissfully unaware of their suffering. Just because we cannot see their pain does not mean that it should be ignored or written off as just how it is As with fibromyalgia, the problems that people with arthritic conditions face are exacerbated by the fact that they can fluctuate in severity, leaving them unsure how well they will be able to cope from day to day. That can make it difficult to hold down a regular job, but that should not be used as cover for discrimination. Many people with arthritis want to work and can do so if the right support is in place. Such help is available through the Access to Work scheme, but that is not working as well as it should, as various arthritis charities have said. They are also calling for the Government to commission research on the meaning of "reasonable adjustments", and for support to be put in place to help people who challenge employers who do not act on Access to Work recommendations. Employers, as we know, are obliged to make reasonable adjustments but, if someone is in work and not a member of a trade union, who will argue the case for them There was a Westminster Hall debate yesterday on trade union access to workplaces My hon. Friend the Member for Warrington South (Faisal Rashid) has introduced a private Member’s Bill on the issue, as some well-known employers have actively sought to prevent trade unions from accessing workplaces by banning visits or by manipulating shift patterns to prevent opportunities for engagement. It is important that we do as much as we can to ensure that people have access to trade unions at work so that they can be adequately represented. Rights are only as good as our ability to enforce them To return to employment opportunities for people with invisible conditions, on a practical level, how easy is it for them to raise issues associated with their condition at a job interview, or when they begin work? It is a difficult conversation to have because, although discrimination is unlawful, that does not mean that it does not happen or that it is not a difficult subject to raise at the beginning of an employment relationship. If an employer refuses to make adjustments, how realistic is it to expect people to take them to tribunal, especially without support, and what reassurance can we give them that if they raise those issues and put their head above the parapet it will not rebound negatively on them? I want to say a few words about the challenges of employment for people with autism. In a recent survey of over 2,000 autistic adults, just over half of respondents said that they had told their current or most recent employer that they were autistic, but just under a third had not. For people with autism, busy workplaces can be socially overwhelming, or they can overload them with too much information from noisy conversation, bright lights or other sensory stimuli. Many of these barriers can be overcome quickly, easily and cheaply through increased understanding. We recently had some training here in Parliament on autism awareness—I certainly found it valuable. We can also make simple adaptations to the environment. Sadly, at the moment the National Autistic Society reports that about a third of its respondents said that support or adjustments made by their current or most recent employer, both in relation to sensory needs and to autism generally, were poor or very poor. We need to ensure that access to work is working effectively for autistic people and that specialist support is available throughout the country What about those with invisible conditions who are not well enough to work? We have talked about this issue many times, but my constituents’ experience of work capability assessments has not been good. Many decisions are overturned at tribunal and it seems to me that the system does not learn from its mistakes. A constituent of mine with two conditions I have already mentioned, arthritis and fibromyalgia, was assessed five times in eight years. At each assessment she was found fit to work. On each occasion she appealed and on each occasion she won the appeal. How can the process be wrong so many times? How can that waste of public money on five separate occasions be justified when the final decision has been the same every time? What does that say about the Government’s approach to people with long-term conditions? How many times does someone actually have to prove that they are not fit to work before it is accepted?