Dementia Services (South-West)

Julie Hilling Excerpts

Monday 11th June 2012 Commons Chamber

[Mr Bradshaw]

I agree absolutely. As I said, and as I hope the Minister will endorse, training and awareness of dementia are vital not only in primary care settings but in secondary care settings, as in the case my hon. Friend raises. Some people who may seem to be extremely ill with dementia and who are in the situation she describes may in fact be physically perfectly fit and able to carry on living for some time. I hope that her local hospital will take up the case and provide a satisfactory response.

As I was saying, there is a strong feeling on both sides of the House that we need a sustainable and fair solution to the challenge of long-term care. That challenge particularly, but not solely, affects families with members who suffer from dementia because of the enormous costs imposed on them by having to pay for long-term care. I do not think it an exaggeration to say that there was great disappointment when the Queen’s Speech again failed to include a Bill to implement the Dilnot proposals. As far as it goes, the Government’s commitment to a draft Bill was welcome, but it would be helpful if the Minister told us when that draft is likely to be published and guaranteed that a Bill will be passed in this Parliament. May I boldly suggest that that would be a real legacy and worth working for?

[Julie Hilling (Bolton West) (Lab)]

Does my right hon. Friend agree that part of the reason people are not diagnosed is the great fear of what dementia means? In fact, if we provided good care in their own homes, they could stay there longer before needing to go into residential care. We should look not only at the cost of residential care, but at the cost of home care and reach a settlement on that, too.

[Mr Bradshaw]

My hon. Friend is absolutely right and makes an important point.

I would be grateful if the Minister also gave a commitment that the Bill, when it comes to the House, will address the postcode lottery in the availability and quality of services. Tower Hamlets in London, for example, spends five times as much on dementia services as Cornwall in the south-west, which is the lowest spending authority in the country. That simply cannot be right.

The urgency of meeting the challenge of long-term care is all the greater as figures uncovered by my hon. Friend the Member for Leicester West (Liz Kendall) show that pressure on local authority budgets is already leading councils to increase their charges and tighten their eligibility criteria, so that many people are losing the assistance they previously received. The situation is getting worse and will continue to do so until the Government grasp the nettle of long-term care and implement the Dilnot report.

At any one time, one in four hospital beds is taken up by people with dementia. Delayed discharges from hospital and unnecessary admissions to hospital cost every hospital in the south-west hundreds of thousands of pounds a year. As my hon. Friend the Member for Bolton West (Julie Hilling) has just said, all the evidence shows that early intervention with community services is cost-effective, it keeps people out of hospital, it is what people with dementia and their families want, and, in particular, it is what the people who have the main responsibility for caring for those sufferers want.

However, the tightening of the eligibility criteria and the cutting of local services are having the opposite effect: they are increasing the costs for the NHS. I do not know whether the Minister has any figures with him. If he does not, perhaps he could write to me, as I would be interested to know whether he has made an assessment of the impact on the NHS in the south-west of the tightening of eligibility criteria by local authorities in the area for people with dementia.

By 2021, more than a million people will be living with dementia in the UK, and this year dementia is set to cost us £23 billion. In the next 10 years, the number of people in Devon with dementia is set to increase by a third. It has been said before, but I will say it again: we face a dementia time bomb. Addressing it will require leadership and more public investment in the short term, but a successful dementia strategy will be much cheaper and equitable in the long run, and it will also reduce the strain on and suffering of patients and their families. Surely it cannot be too much to expect that someone with dementia can receive a decent level of care wherever they live in the country and that their families should no longer to be subjected to the ruinous costs of long-term care simply because they happened to have a relative who suffered from this illness.

--- Later in debate ---

[Julie Hilling]

What are the Minister’s views on the funding of dementia groups and carers’ groups? I visited my local group a fortnight ago, and it is struggling for money because of cuts in its local authority grants and health grants. Will there be money behind the new strategy for carers, and more money to support dementia groups in the community?

[Paul Burstow]

I say two things in response to that question. First, the picture is actually quite varied, and I will come on to the investment that is being made in the support network of voluntary and community organisations in Devon. Secondly, the Government have provided £400 million, through the NHS, to support carers through carers’ breaks and other arrangements. We have specifically said that local plans will have to be signed off by carers’ organisations to ensure that the voice of carers is heard when decisions are made.

The right hon. Gentleman asked me about the costs facing families. I understand that concern, which the House has been debating for at least the past 15 years, and it is important that we reach conclusions. We will shortly publish a White Paper and a progress report on our deliberations on funding reform. Dilnot produced a clear set of recommendations, which the Government welcomed when they were published last year.

It is also important to stress that funding reform, important though it is, is only one of a number of issues to consider in improving social care in England. Others include variability of quality, a lack of focus on prevention and early intervention, services that do not join up well for families and do not always integrate well with the NHS, and a lack of personalisation. We expect to address all those issues in the White Paper that we will publish shortly.

When it comes to legislation, we will publish a draft Bill before the summer recess, which will set out the details of a comprehensive reform of social care. We will address the fact that for 60 years, social care legislation in this country has evolved in a piecemeal fashion and as a consequence, in my view, constitutes something of a dog’s breakfast. It is hard for people to navigate their way around the system and identify when they are entitled to support from their local authority and when they are not.

Innovation is important in driving improvements in quality for people with dementia. That is one reason why, as part of the dementia challenge, we identified an innovation prize of £1 million for NHS organisations developing ideas for the transformation of dementia care services. In the south-west and south of England, the NHS has specifically identified and made available a further £10 million for such innovations.

I said that I wanted to mention briefly some of the other actions in the south-west. The Royal Devon and Exeter NHS Foundation Trust has piloted patient passports in a very good piloting exercise. It has alighted on a scheme proposed by the Alzheimer’s Society called “This is me” passports, which are very useful for people with out-patient appointments and those who are being discharged from hospital. The trust is also running an “An hour to remember” training programme to raise the awareness of staff about both the people who have dementia and the people who are with them—that is, their family members and carers—and that is ever so critical. Every fortnight, there is a day’s training in dementia care for clinical and ancillary staff. The trust has also recently strengthened its mental health liaison services and is reaching out into its communities to pilot a virtual ward scheme, which is a very important way of avoiding unnecessary admissions into hospital. Beyond the hospital, there are networks of support and there are 37 memory cafés around the county—I believe that there is one in Exeter itself—and more than 200 volunteers have been trained in dementia awareness to help support those areas.

The right hon. Gentleman also mentioned the role of GPs. I am not certain that we have the same figures, but my understanding is that 67 of the 107 GP practices across Devon have already undergone GP-led dementia training, which has already led to a significant increase in the number of referrals going through.

There is much to be done and much that the Government are doing already. There are significant signs of progress up and down the country. The dementia challenge set out by the Prime Minister in March is real and it is about ensuring that we mobilise not just the national health service and our local authorities but our whole community to engage with one of the biggest challenges faced by our society. I would certainly say that the evidence points towards a lot of hard work being done by NHS and social care professionals across Devon and the south-west that is beginning to lead to a significant increase in the diagnosis rates. As a consequence, many more people are getting the treatment and care that they need and that their loved ones deserve. I thank the right hon. Gentleman for securing this debate.

Question put and agreed to.

NHS Risk Register

Julie Hilling Excerpts

Wednesday 22nd February 2012 Commons Chamber

[Mr Burns]

I will not give way. I am afraid I do not have time.

As a Treasury Minister, the right hon. Member for Wentworth and Dearne wrote to Mark Oaten, the then MP for Winchester, upholding the Chief Secretary to the Treasury’s refusal to disclose information about gateway reviews and the identity cards scheme.

Tony Blair—a name that is not often heard with joy on the Opposition Benches now—understood that too. In his memoirs, he calls himself a fool, a nincompoop and an imbecile for introducing the Freedom of Information Act, because, in his words, Governments need to be able to discuss issues

“with a reasonable level of confidentiality”.

He said:

“If you are trying to take a difficult decision and you’re weighing up the pros and cons, you have frank conversations…And if those conversations then are put out in a published form that afterwards are liable to be highlighted in particular ways, you are going to be very cautious. That’s why it’s not a sensible thing.”

Several hon. Members asked about the strategic health authorities that published their risk registers. I would like to clarify this point, because there seems to be considerable confusion about it, particularly among Opposition Members. The purpose of the Department of Health’s risk registers is to allow civil servants to advise Ministers properly about the potential risks of a policy. SHAs, on the other hand, are further removed from Ministers, and are more concerned with operational issues—not policy formulation—and the more day-to-day business of health care. They are not concerned with providing objective guidance to politicians. Their risk registers are routinely published every quarter, and are written with publication in mind. That is evidently not the case with Department of Health registers, which, to remain useful, must be confidential.

Risks are inherent in any programme of change, and we have been open about them, having published a vast amount of detailed information, including the original impact assessment, in January 2011, and the revised impact assessment last September. In addition, the Public Accounts Committee’s health landscape report was published in January 2011, and there has also been the annual NHS operating framework, and the oral and written evidence presented to the Health Select Committee and the PAC. The risks must be scrutinised, we have supported that scrutiny and the risks have been scrutinised. The Bill received 40 sittings and two stages in Committee, and as one hon. Member mentioned, there have been 100 divisions. Even the lead shadow spokesman said, on conclusion of the Committee stage, that the Bill had been thoroughly scrutinised. To claim otherwise is ludicrous.

[Julie Hilling (Bolton West) (Lab)]

I wanted to ask the Secretary of State this question earlier because I was rather confused. The Information Commissioner has said that the risk register should be released. If the Government lose the appeal, will they publish it, given that it would be the right thing to do?

[Mr Burns]

I am grateful for this opportunity to clarify the situation. The hon. Lady is right that the Information Commissioner has taken a view, and under legislation my right hon. Friend the Secretary of State has the right to appeal to the tribunal. That appeal, which he lodged some time ago, will be heard on 5 and 6 March and a decision will be made according to a timetable set by the tribunal—we have no control over the timing.

Of all the topics that the Opposition could have chosen to debate for the past six hours, this is probably one of the most pointless. The tribunal for publishing the risk register sits in a fortnight’s time, as I have just told the hon. Lady, so why not wait for it to report back and use this opportunity to talk about something more useful? Since they have chosen to race down this particular dead-end, however, all I can say to them is this: wait until after the tribunal. There is nothing to add until then. We have explained which areas the risk register covers; we have subjected the Bill to unprecedented scrutiny and consultation; we have debated it for countless hours, and yet still the Opposition bleat that we have not been open. My advice to them is this: change the record. What they are doing is cynical, opportunistic and shallow. I urge my hon. Friends to vote against the motion.

Question put.

Life Sciences

Julie Hilling Excerpts

Monday 5th December 2011 Commons Chamber

[Mr Lansley]

I am clear, and I know that my hon. Friend agrees, that we must ensure that the regulatory processes are effective and that the medicines that are available in this country are of the necessary quality, safe and effective. However, we must not allow the delays that are inherent in some of these processes to prevent information from being provided on the basis of which clinicians, with the active, informed consent of patients, can access what they regard as potentially effective medicines. In the overall context of patient safety, we do patients a serious disservice if we know that there is a potentially effective medicine available and do not give them the first possible opportunity to access it.

[Julie Hilling (Bolton West) (Lab)]

The Secretary of State says that his proposals reflect his commitment to the national health service. If GPs will be commissioning treatments, how will he ensure that they commission new and more effective treatments that might be more expensive?

Oral Answers to Questions

Julie Hilling Excerpts

Tuesday 22nd November 2011 Commons Chamber

[Mr Burns]

I am grateful to my hon. Friend, and I am glad that she had such a positive experience visiting her local A and E. I can categorically tell her that reconfigurations must be carried out in accordance with the Secretary of State’s four tests and that clinical safety and quality of care are paramount.

[Julie Hilling (Bolton West) (Lab)]

17. What discussions he has had with the Chancellor of the Exchequer on the future costs of long-term social care.

[The Minister of State, Department of Health (Paul Burstow)]

The Government are committed to publishing a White Paper and a progress report, responding to both the Law Commission and the Dilnot commission recommendations. As part of ongoing work, there have been numerous discussions throughout the Government, including with Her Majesty’s Treasury.

[Julie Hilling]

At least 5,000 families a month are having to make decisions about the long-term care of loved ones. Since the election, thousands have had to sell their homes and spend every penny on care. How many more people—and for how much longer—will have to be terrified about their future?

[Paul Burstow]

If the hon. Lady had prefaced her question with an apology for failing to sort out the problem for 13 years, I might have taken it more seriously. This Government moved urgently to establish the commission chaired by Andrew Dilnot, we are now actively working through his proposals, and we will come forward with legislation and a White Paper in due course.

Hinchingbrooke Hospital

Julie Hilling Excerpts

Thursday 10th November 2011 Commons Chamber

[Mr Burns]

I am grateful to the hon. Gentleman. I can say that this is the best chance for the hospital, which has had a very troubled history, as he knows as the constituency Member for Cambridge, because of the financial problems and governance and management problems. I am confident that this is the best way forward to establish this hospital once again on a firm footing to provide the finest health care for his constituents and those of hon. Members in the Huntingdon and Cambridgeshire area.

[Julie Hilling (Bolton West) (Lab)]

I do not understand how there can be a surplus to be given to the private company. Surely every penny of taxpayers’ money should be spent on the care of patients. Does this mean that Circle will be inclined to reduce care so that it makes profits?

[Mr Burns]

I have to say that I am disappointed by the hon. Lady’s question.

NHS Care of Older People

Julie Hilling Excerpts

Thursday 27th October 2011 Westminster Hall

[Julie Hilling (Bolton West) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Brooke. I congratulate the hon. Member for Stourbridge (Margot James) on securing this important and timely debate. I beg your indulgence as I tell a personal story about my mum’s recent journey through the national health service. As many colleagues will know, my mum had a bad stroke in June this year, and we have had a bumpy ride over the past four months. I want to make it clear at the outset that the vast majority of care workers, nurses, doctors and other staff with whom we have come into contact have shown my mum a great deal of loving care, but she seems to have been let down by system failures.

Mum is 86, but before her stroke, she was still working, teaching three yoga classes a week, doing reflexology, driving her car and leading a totally full life. As hon. Members can imagine, it has been devastating not only for her but for all of us. After the stroke, she was first admitted to Luton and Dunstable hospital’s accident and emergency department. At about 4 in the morning, she was medically ready to be transferred to a ward and was taken up to the stroke ward. However, when we got there, we were told that there was no bed. We were not too fazed at that point—it was the middle of the night—so we accepted it, and she was transferred back to the emergency admissions ward. At the time, the medics were not sure that Mum would survive, so it was a difficult time for us.

By the following afternoon, we were getting agitated—[Interruption.] Excuse me, Mrs Brooke; you can tell how it made me feel. Anybody’s journey through the national health services in such circumstances is difficult, and ours has not been made better by what has happened to us. We were agitated by the following afternoon. Mum was still on the emergency ward, which was very busy and noisy. Eventually, we started the journey back to the stroke ward, to be greeted at the desk again with “Sorry, there’s no room.” At that point, I started to become six foot tall, thinking, “My mother is going to come into your ward.” Fortunately, a sister behind the desk treated us nicely, saying, “This woman will be admitted on to our ward.”

Some time later, concerned about her breathing, I called for a nurse. The nurse came in and said, “Well, you know she’s do not resuscitate, don’t you?” I said, “Yes, but I’m concerned about her breathing.” The nurse said, “Oh no, she’s fine. She’s actually in a deep sleep and things are good, but oh dear, I’ve not hung up the drip.” I spent the next half-hour holding up the drip so that Mum would get saline and holding Mum’s hand until the nurse eventually returned with the drip stand.

That is just the start of a chapter of system failure. It was a great frustration going to the desk and seeing all those people behind it, but being totally ignored. I did not know whether they were physiotherapists or doctors. When I said, “Mum needs the commode,” or “Please can you,” I was ignored. That was not just our experience but the experience of everybody on the ward.

[Stephen Pound (Ealing North) (Lab)]

Sorry, but I cannot believe I heard that. Can my hon. Friend confirm that the charge nurse said to the patient’s daughter that the patient was do not resuscitate? Please God, I heard that wrong.

--- Later in debate ---

[Julie Hilling]

No, indeed. That was what was said to me when I questioned her breathing. We knew that Mum was gravely ill and that they would not make extraordinary efforts to save her at that point, but the way that it was done did not make it the best thing that happened.

As I was saying, the great frustration was being ignored. One day I went to the desk, saw the doctor who was doing the round and said, “We really need to speak to you.” The doctor said, “I’m very busy at the moment, but I promise I will speak to you before I go home.” I went back to the desk a few hours later to discover that the doctor had gone home. We only got results by complaining. It was a difficult period.

Mum was on thickened fluids because she had difficulty swallowing. Each day when we went in, on her trolley would be a glass of ordinary, unthickened water. However, the good thing was that every day it was out of reach, so fortunately she could not choke on it. Then they complained that she was not drinking enough.

Food was a mystery. We would fill in the menu form, but each day it would be a lottery what turned up. Mum was on puréed food, but three times in one week, the lady in the next bed got no evening meal. Each time, they said, “Well, you didn’t fill in the form.” Her family said, “Yes, we did,” and they said, “Oh well, we’ll give you sandwiches.” Fortunately, that happened to Mum only once. Thank heavens my sister was there, because they said, “We’ll give her a sandwich.” My sister said, “Look on the chart over her bed—puréed food only.” Had she not been there, goodness knows what would have happened.

One day, Mum choked. They had got her out of bed, so she was sitting next to the bed, and she was choking. She was unable to ring her buzzer at that point, so another patient rang it, trying to get somebody to assist. Nobody came for about 10 minutes. The other patient’s young husband then had to assist my mother, mopping her up and getting her sorted out so that she was no longer choking.

For a few days, there was a lady in the bed next to Mum’s who sat on a pad that spoke every time she stood up. Clearly, she wandered, and they needed her to stay in place, but the message on the pad said, “Dear Mr Such-a-body, please sit down again and somebody will come to you.” Of course it was no trigger for that woman, as that was not her name. The name had not been changed. The lady opposite Mum could eat, but was not eating a great deal. She was not helped to eat or given prompts such as “Please have a bit more”; somebody would just come and say, “You need to drink a bit more,” instead of helping her.

I asked my assistant to send a card from my right hon. Friend the Member for Doncaster North (Edward Miliband) and the Chief Whip. I nearly asked for a card from the Prime Minister. I thought that maybe if they knew that I was an MP—I have never in my life told as many people that I am an MP as I did during that period—they just might give my mum a bit of extra care or show more concern. I even took in a box of House of Commons chocolates, as if to say, “Look after this lady, please,” but that did not make a great deal of difference. The staff did care, but the system was not in place. We felt that we had to make sure that, every day, somebody stayed for the full length of visiting hours.

After two and a half weeks, mum was transferred to Biggleswade rehabilitation hospital. Again, the staff were very loving, but they also let us down. They loved mum, and we felt that that was partly because mum is a proud, undemanding and polite woman. She was in Biggleswade for eight weeks and, again, we did not dare to not have somebody present to visit for a substantial part of the day.

Mum had pneumonia, along with the stroke, and after a couple of weeks at Biggleswade, she did not seem very well to us. We had to tell the staff that, despite the fact that she was getting close personal care at this time, mum was not well. They took her temperature and, yes, she had a chest infection. Treatment was good, but why was it us—she was in hospital—who had to raise the alarm? Mum was losing weight—she ended up losing 3 stone during this period. She was supposed to have protein drinks, but the drink only ever turned up on one day. Mum came to absolutely hate meal times at Biggleswade.

The second major incident was equally frightening for us. Mum had bumpers put on the side of her bed, to prevent her paralysed leg from getting caught in the bars. One night the bumpers were not put on and her leg got stuck. She, of course, did not realise this and it was only in the morning when she said that she was in extreme pain that it became apparent that this was why. Why were the bumpers not put on? Moreover, if it was a mistake, why did not somebody on their night tour know that the bumpers were not there? It is an 18-bed hospital, not an enormous one with hundreds of beds. Why, indeed, did the nurse in charge not check on the patients throughout the night? When we went in, mum’s leg was hugely swollen. The sole of her foot was purple. We are not medics—we did not know what was the matter—but we thought that something was wrong, so we raised the alarm again.

I want to tell this story because I think it is typical of other people’s experiences. Mum needed close personal care, so why did the carers, who were putting her in a hoist and changing her clothes and pad, not raise concerns about her leg being three times the size of the other one? The unit at Biggleswade is nurse-led, so a GP was called. He thought that she had a deep vein thrombosis and tried to get a scan the next day. He did not think that she should wait 36 hours, which was the time we would have had to wait for the appointment on offer. He thought that he had succeeded in getting a scan for her the next day, but, sadly, he had not, so we had a desperate day of trying to get mum scanned. We asked whether there was any other hospital that she could go to, and—remember that I am a good socialist, Labour MP—I even asked, “Can I pay?” I am grateful to mum’s MP, the hon. Member for South West Bedfordshire (Andrew Selous), who also helped and pulled out all the stops to try to get mum a scan, but we only managed to get her in the next day.

I asked to see the matron to see whether anything else could be done. Although I remained at the hospital all day, I was told that they had seen a posh car drive away from the hospital and had therefore decided that I had left—I am not too sure why they thought I drove a posh car—so the matron had left the site without seeing me. The medics were not too concerned, because they said that they had started treatment—a treatment that we were later told should not have been started before mum had had a brain scan, because she had had a hemorrhagic stroke.

I also discovered that there are only four slots for GP referral scans at Bedford hospital. The hospital serves many thousands of patients, so why are there only four slots for that huge population? We went to the hospital and another chapter of problems started. I will not bore everyone with the full details, but suffice it to say that there was a lack of communication, which resulted in mum missing her slot to be scanned, and a full day of a woman, frightened and in pain, sitting around in a hospital.

The overwhelming feeling was that everybody blamed everybody else. It was said that the day ward at Biggleswade should have sent her on a trolley. Somebody else should always have done something, but very few people said, “I will do something.” Mum was diagnosed with a DVT from toes to groin and was in the ambulance about to go back to Biggleswade while I was still in the hospital demanding answers from the doctors and asking questions. Fortunately, the consultant appeared at that point—I am not sure whether he turned up or was asked to come—and said that, because of the medication that mum was on, she should stay in and they should not send her home. That was the turning point in mum’s journey—good care and good treatment in Bedford hospital. She started to eat.

After two and a half weeks at Luton and Dunstable hospital, eight weeks at Biggleswade and one week at Bedford hospital, mum went into respite care in Swiss Cottage care home in her home town. What a difference. She is eating well, has started to put on weight and is starting to walk. She is making amazing progress and we hope that she will go home soon.

There has been only one bad incident in the care home. It asked a GP to visit and the one who was on duty—it was not her GP—refused to come, because he did not know her case, even though all the information had been sent to the GP. He referred her to Stoke Mandeville hospital for another scan—another day of pain and distress for this woman. They said, “She’s got a DVT,” but we knew that. That seems to be another failure.

I am grateful for the opportunity to tell my mum’s story, because, sadly, it seems typical of that of so many older people. It seems that if people have something that is wrong and treatable, they get good service from the NHS, but if they are older and just need care, the results are not so good. There also seems to be little consideration given to who that older person is or was; they just become “an old person.” Yes, she is 86, but my mum was a working 86-year-old, teaching yoga and apparently fitter than me—she was not just an old lady.

A GP in Biggleswade told me that my mother is lucky to have a family who have been fighting for her. It should not be that way. Every older person deserves to be treated with respect and care. I am grateful for this opportunity and I hope that, through all of our efforts, a real difference will be made to the treatment of older people.

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.