Invisible Disabilities and Accessibility Challenges

Justin Madders Excerpts

Wednesday 5th June 2019 Commons Chamber

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

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 debate 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 understand. 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?

[Debbie Abrahams]

My hon. Friend is making a very powerful speech, particularly in relation to the work capability assessment. Is he aware that sanctions are more likely for people with invisible health conditions? This is a real issue that needs to be addressed.

[Justin Madders]

I thank my hon. Friend for her intervention. From my experience in the constituency, those with mental health issues in particular sometimes have real difficulty engaging in the process. That does, very unfairly, lead to sanctions.

Some constituents have raised concerns about the speed at which assessments are carried out and the fact that assessors do not listen to the answers given. Others have had their request for a home assessment refused, despite medical evidence being provided that they are necessary. I am thinking, in particular, of one of my constituents who has an invisible condition but was refused a home assessment. That condition was agoraphobia. Surely the need for a home assessment in those circumstances was obvious? People who enter the system deserve compassion, respect and support. They should not be made to feel that they are on trial because they are ill. I am afraid that that is the experience of so many people who come to see me about the assessments.

I want to say a few words on accessible toilets. I recently met a constituent who has a stoma, which, as I am sure Members are aware, is where the bowel is diverted through the abdomen so that bodily waste can be collected in a stoma bag. Stoma surgery is often used to treat a number of invisible illnesses, including cancer, Crohn’s disease, colitis and diverticulitis. People of all ages are affected and have additional needs—for example, when using a toilet. But, as their condition is hidden, they often, as we have heard, face prejudice. There are no accurate figures on the number of people with stomas in the UK, but estimates range from 120,000 to 150,000. A lifestyle survey by Colostomy UK in 2016 of over 1,300 people with stomas found that 19% had experienced discrimination, either in the workplace, in public or elsewhere, and 30% of respondents had been challenged or criticised for using an accessible toilet. A constituent I met last week is actively campaigning in my local area, raising awareness of the needs of people with stomas. This has included encouraging local businesses and organisations to change the signage, so that accessible toilets are able to reflect the hidden nature of conditions. We have accessible toilets here in Parliament, which have signs to remind us that not every disability is visible. I see no reason every disabled toilet could not have accessible toilet signage along the same lines.

People with a stoma have additional needs when using the toilet, which can make even a simple day trip to the shops or the supermarket extremely stressful. A few easy-to-implement changes to accessible toilets would make a huge difference to people living with a stoma: ensuring that every toilet has a hook on the door to hang clothing, handbags and luggage while changing stoma bags; a shelf to spread out the items they need; a mirror to allow users to see their stoma while changing; and a disposal bin in every cubicle to avoid embarrassment for men and women having to dispose of their stoma bag in public view. I do not see why those changes cannot be implemented across the whole country.

Many people have conditions or disabilities that affect their everyday lives and they are disadvantaged by barriers in society and in the workplace. It is incumbent on all of us to do what we can to remove barriers that restrict opportunities and choices for people with disabilities, invisible or otherwise. We need to ensure that no one is held back because of these conditions, not just because we know that fairer societies are better for us all, but because everyone deserves to be treated with dignity and respect.