Wheelchair Services

Julie Hilling Excerpts

Monday 28th June 2010 Commons Chamber

[Mr David Anderson (Blaydon) (Lab)]

Some five years ago, as a new Member, I was approached by a number of children from Ryton comprehensive school in my constituency to see whether I would attend a lobby by the Muscular Dystrophy Campaign that was being held outside the Department of Health. The lobby was held to support a teacher at the school who had a son by the name of Sam who had been diagnosed as suffering from Duchenne muscular dystrophy—the type of muscular dystrophy that attacks young boys in particular, many of whom do not live to see out their teens.

As a result of that lobby, I was approached by a colleague who is now a Minister and asked if I would take on the role of chairing the all-party group on muscular dystrophy. As a young volunteer—well, not so young, but a lot younger than I am today—I did not know what I was letting myself in for, but I can quite safely say that that was one of the most important decisions that I ever took in the House. As a result of the work that we have done over the past five years, we have made great strides in helping people with muscular dystrophy. However, the truth is that we are still a long way from finding a cure. As part of that work, we decided to hold a series of hearings, to which we would invite patients, professionals and people from the Department of Health, as well as people from the specialist commissioning groups and the Muscular Dystrophy Campaign.

Following that work, we produced a report last summer entitled “Access to specialist neuromuscular care”. Its subtitle is “The Walton Report”, because one of the key players in producing it was Lord John Walton. He was born 88 years ago, and is one of my constituents. Based in Newcastle upon Tyne, he has a long history as a leading light in the work on neuromuscular diseases. He has been a distinguished Member of the House of Lords for about 20 years. He brought to the Committee a real sense of purpose. Others who were involved include our old colleague Dr Ian Gibson, who is no longer in the House, and many others from both sides of this House and from the House of Lords. We produced the report based on people’s real-life experiences of living day to day with muscular dystrophy.

We knew that it was not going to be possible to find a cure. We knew that we were not going to get into a debate about research or about trying to find a drug that would be the silver bullet that cured muscular dystrophy. We knew that that would not be possible. However, we heard time and again from people living with the disease that their basic care needs were not being properly addressed. An example is hydrotherapy. Why is it that children who have hydrotherapy during term time cannot have it during the holidays because the caretaker is not at their school? If access to drugs were involved, and a child was told, “Go away for six weeks. You can’t have your drugs because we’re on holiday,” there would be an outcry. Similarly, parts of the country have good access to physiotherapy, but other parts do not.

A further important issue that cropped up time and again was that of access to powered wheelchairs. Because of the frequency of this complaint, we asked the representatives of the Muscular Dystrophy Campaign to go away and work with people to produce a new report. That report came out last week, and it is called “Get moving—the case for effective wheelchair services”. I have sent the Minister a copy, and I hope that he has received it, because he will then be able to give us all the right answers later. I am sure he will not mind if I put my glasses on so that I can read it properly.

These are some real-life experiences of people with muscular dystrophy. They are setting out some basic stuff very clearly indeed. Wendy Hughes from Devon describes her son’s situation, saying:

“I have never been more angry or upset about a seemingly hopeless situation. Zak’s fight for independence has been an upward battle and completely frustrating, demoralising and hopeless for the whole family”.

A patient whose 10-year-old wheelchair is described as “falling apart” said:

“I have had no chance of trying another chair. I need a different type and shape of chair now. No one is listening and it’s soul-destroying.”

Jill Brown, from Wiltshire, is 68 years old and has progressive neuropathic myopathy. She has been waiting 12 years for the powered wheelchair that she needs. Six weeks ago, she finally received it. Sadly, because her condition has worsened, the chair no longer meets her needs.

The report contains a catalogue of complaints and heart-rending real-life stories. Christopher Powell lives in Plymouth, and has a muscle-wasting condition. He says:

“My current wheelchair has so many faults and I’m paying through the nose to get it fixed. I actually had to make my own headrest for the wheelchair, made out of a Pringles tube wrapped in a sock. It’s very embarrassing.”

Mark Bishop is from Herne Bay and has had problems getting a wheelchair adapted to suit his needs. He says:

“It ended up taking two years for wheelchair services to adapt a wheelchair they had to what I wanted, and even now it’s not finished…Someone with a Meccano kit could have done a better job.”

Karen Duckmanton lives in Essex. She, too, has Duchenne muscular dystrophy. She says:

“Even though I can’t walk and I need to be in my wheelchair all the time, wheelchair services told me that because I still had a small amount of power in my arms, I could not have an electric wheelchair. I think pushing the wheelchair has made my arms worse. I’ve been told I would be on the waiting list for 18 months for another wheelchair assessment.”

Carol Lawson from Chester-le-Street, quite close to where I live, said:

“I was given a manual chair by wheelchair services but I live on my own so lots of things like windows and shelves were out of reach for me—I couldn’t even hang clothes in the wardrobe. So I asked wheelchair services for an electric chair with a rising seat but they told me they couldn’t fund it.”

That is the story we hear left, right and centre when we approach the Department of Health and the various primary care trusts, although the need for provision has been accepted. It was recognised last year by Phil Hope, the former care services Minister, who said as recently as 19 March:

“Not having the right equipment to get about easily can restrict freedom, isolate and prevent an individual from fully contributing to society. That’s not right. That’s why we are developing a national entitlement standard for wheelchairs services.”

There has been national guidance on wheelchair services for a number of years now, but what is the real experience of the people concerned? They tell us plainly that the guidance is not working, but why is it not working? Here are some of the reasons given by the health service:

“Lack of awareness: Wheelchair Services may not have the specialist knowledge needed for these complex conditions.

Limited funding available: Wheelchair Services may have been allocated a limited budget by PCTs.

Equipment is restricted: Wheelchair Services may have a limited list of equipment it is willing to fund.

Equipment rationing: Equipment may be limited to one piece per patient.

Excessively strict criteria: The provision of equipment is often based on strict assessment criteria rather than actual need.”

Wheelchairs are not just a means of getting about, however. For some people, they are life support mechanisms.

[Julie Hilling (Bolton West) (Lab)]

Is my hon. Friend aware of the excellent work done by the charity Whizz-Kidz, which provides bespoke wheelchairs for young people? Does he agree that wheelchairs that fulfil the needs of young people, fit them and are suitable for their purposes, enabling them to lead fulfilled lives, should be funded by the national health service?

[Mr Anderson]

I entirely agree. I have done some work with Whizz-Kidz, and the appendix to the report contains a reference to its work. However, while everyone welcomes the great work that is being done by the Muscular Dystrophy Campaign and other charities—especially Whizz-Kidz—we should not have to rely on charity.

Mobility is as important to the quality of these people’s lives, and in many instances to their longevity, as medication. If someone was told, “I am sorry but you will have to get into a queue because there is not enough medication to go round,” every one of us here tonight would be knocking on the GP’s door, or asking the primary care trust or the strategic health authority, “What are you playing at?”

This is not like an assessment by the National Institute for Health and Clinical Excellence, when people are told “Yes, it would be good if you could have this, but we cannot afford it.” In this instance, people are being told, “You cannot have it for a variety of reasons.” In some parts of the country, such as Newcastle, there is a one-week waiting list; in others, there are waiting lists of up to 18 months. However, it ultimately costs the NHS more when people do not have the right wheelchair. They end up in hospital with diseases caused directly by the fact that they are not mobile, and experience physical as well as mental difficulties caused by the stress and strain of living with their problems.

At a lobbying event last week, a gentleman from Essex spoke to the main provider of wheelchairs there. That gentleman was almost in tears. He said—this was a gentleman in his mid-forties—“I have had this wheelchair for 12 years, and I cannot cope with it any longer.” But the truth is that this is not a difficult problem to solve. The Minister will probably talk about resources. We could all come into the Chamber every night and speak about a particular health-related problem, and I accept that there are limits, but the fact is that this could be cost-effective. People would not be in hospital, there would be fewer emergency admissions, and people could lead much better lives if they were not tied to equipment that does not work properly.

We must accept that the current position is not the position of 10, 20 or 30 years ago. People who are disabled now, thank goodness, expect more, and we as a society should give them more. Some great young people are involved in the Muscular Dystrophy Campaign who go to university and lead independent lives in their own houses, with access to transport and travel around the world, and we should help them in every way we can.

There are a number of things that I should like the Minister to do. I hope that he will agree to meet me, along with representatives of the campaign and of the working group of the all-party group on muscular dystrophy. We are asking the Government to act on the following recommendations. We want them to set up a short-life review group led by the Department of Health to address the failings of wheelchair services, and to get that review group to examine the savings and improvements made by new service models and to ensure they are implemented nationally. We want them to set a national target for waiting times for wheelchairs at a maximum of 18 weeks from the initial referral to the delivery of the chair—I know the new Government are not keen on targets, but we are talking about really looking after people. We also want the Government to set aside an adequate ring-fenced budget for wheelchairs in each PCT under the supervision of a specialised commissioning group. We want them, too, to set up uniform eligibility criteria and a national consensus regarding the features and equipment that should be provided by the NHS so that that can be developed fully. As it is pointless providing a wheelchair if its condition is not maintained, PCTs must accept the cost of maintaining all wheelchairs, including those that have already been bought, modified or privately funded, and that maintenance should be carried out quickly and efficiently.

We should also look to the scheme set up by the people involved in the campaign which is aimed at ending the wheelchair postcode lottery, so that there is the same access to wheelchairs across the country. It is wrong that people in some areas get better access than people in others, but people with muscular dystrophy find that that is the case time and again and it is totally out of order. We should fully implement definition 5 in the specialised services national definitions set, with a named lead for special equipment on the specialised commissioning group. The above recommendations should be used to develop and form a national strategy for wheelchair provision to reduce waiting times, improve access and bring an end to the current postcode lottery.

I know those are big demands, but these people need them. The first young gentleman I saw in a specialised wheelchair was a young man of 25 who had served in the Army Signals. Most of his contemporaries were dead, but he has been saved because his father and mother went to a fête and Lord Tebbit and his wife were there. We all know the sad story of what happened to Lord Tebbit’s wife, and she was in a specialised wheelchair. The young man’s parents talked to Lord Tebbit on that day, and he pointed them in the right direction. They were therefore able to go and see the people who had built the wheelchair for his wife and get a purpose-built one for themselves, which they had to pay for.

This is not on in the 21st century. It should not be a matter of luck in bumping into somebody somewhere who says, “Why don’t you do this?” We are talking about saving lives and improving lives. The truth is, sadly, that a lot of these people will be dead before they are out of their teens. The lucky few will probably live to 30. In other parts of the world, they possibly live for 10 years longer and we can learn lessons from them, and a key part of the way they look after people is access to wheelchair services.

I have spoken specifically about the work we have done in the Muscular Dystrophy Campaign. Since this debate went on to the parliamentary agenda, at least five groups have contacted me and my office, saying these issues apply across the board. I have no doubt that they do, and I will be happy to work with them and the Minister to try to see whether we can find a strategy that works. It is very important, and it is life-saving.