Terminal Illness (Access to Medicines)

Gregory Campbell Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) on bringing the matter to the House. I want to focus on the end-of-life issues that he dealt with in the second part of his speech. Obviously those concern us all, but I want to concentrate on them because of several interactions that I have had with constituents on the subject, and because there is a need for drugs. I am confident that the Minister will respond positively and I look forward to her comments.

I have spoken recently about ending the so-called GP death list—a term that I use very carefully; some people see end-of-life issues in that way and are concerned. I was shocked when I read an article that stated that thousands of patients have already been put on those so-called registers,

“which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital”.

That is one thing that has emerged from discussions that have taken place. The article states that nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to pass away within a year. It is claimed:

“As part of an unpublicised campaign endorsed by ministers, GPs have been encouraged to make lists—officially known as End of Life Care Registers”—

which the hon. Gentleman mentioned towards the end of his speech—

“of people they believe are going to die soon and should be helped to do so in comfort.”

That is the terminology that is used. In my opinion if a patient refuses further treatment this is their decision, not the doctor’s. Treatments must be made available throughout the NHS to those who want and need them—those who need care.

How many times have we heard of patients with no hope suddenly going into remission? An example concerning a child with cancer recently came to my attention. The doctor advised no more treatment, but the sister of the little boy was not ready to say goodbye, and for her sake the family asked for one more course of chemo to prolong the time left and prepare the other child for the expected death. The little boy responded to the chemo that was given in the hope of allowing a few more weeks of life; but that time has turned into six months. Who knows what the future holds? The point I am making is that there are probably many examples from across the United Kingdom where a wee bit of extra effort can be made and where it may not be necessary to prepare for the inevitability of death, if there is also a possibility of life through drug treatment. Imagine if that family had not been allowed to ask for, or the doctor had had the power simply to refuse, the last bout of chemotherapy. That is not an everyday occurrence, but it does happen and it should give us reason to pause and think before making drastic moves.

In 2008 the Labour Government announced a range of proposals aimed at improving the care available to patients with life-threatening conditions. They stated that a key part of the new proposals was a change to the way the National Institute for Health and Clinical Excellence decides which medicines are approved for diseases that affect only small numbers of people. The hon. Gentleman focused in his speech on some diseases that do not kill a great many people in the United Kingdom, and on which, therefore, drugs companies do not spend money; but perhaps they should. I want to discuss that issue. What has changed in the past five years? Is there a greater availability of drugs? I am not sure that that is the case, and would appreciate confirmation from the Minister of how many more medicines have been approved on the list. Many UK universities do great work investigating drugs and conducting research with pharmaceutical companies, and Queen’s university Belfast is one of them, at the forefront of the good work being done on new drugs for ailments including cancer, diabetes, and dementia and Alzheimer’s. Students come from all over the world to do research and to learn there. I commend the university, which has been able to source individual funding, and the many other UK universities doing similar work.

The campaign Empower: Access to Medicine, set up by a man suffering from motor neurone disease, recently caught my eye. The campaign calls for a review of the law and ethics on drug development, as it takes many years and billions of pounds to take a new drug to market from A to Z. The last drug licensed for motor neurone disease, which damages the nervous system, leaving muscles wasted and weak, was riluzole, which has been in use for 20 years. Can there have been no scientific advances since then? I do not believe that. Les Halpin has commented that

“to see primarily it’s the regulations that are slowing the whole process down, it just means we could be waiting an awful long time until a new drug is produced.”

I have a dear friend, whom I have known for many years, who has motor neurone disease. I have seen a healthy man go from being a fun person in the peak of health to someone wasting away in a chair. The drugs have given him a longer life, and perhaps a better quality of life latterly, but they cannot stop the onslaught of the disease. The finality of what will happen to him is clear.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that beyond the difficult and onerous issue of NICE approval of drugs that he and the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) outlined, and which needs to be resolved, is the cost of drugs, post-approval? We need more work to be done on dragging down the cost, to make them more accessible.

Diabetes

Gregory Campbell Excerpts

Wednesday 9th January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I thank the hon. Member for Torbay (Mr Sanders) for bringing this issue to the House. Secondly, I declare an interest, as I am a type 2 diabetic and have been for four years. It has given me a knowledge of, and an interest in, the issue, although not a total knowledge—far from it. It has also made me more aware when constituents come to me with issues relating to diabetes and has given me an interest in those issues.

The disease has completely changed my life, as it would, because it is type 2. Diabetes is a major issue in every constituency. As someone who enjoyed the sweet trolley more than anyone else—to use Northern Ireland terminology, when there was a bun-worry going on, I was at the front of the queue—the sweet stuff was something that I indulged in regularly. Along with my stress levels, that has meant that I am a diabetic today.

The statistics have been mentioned, but they bear repeating, due to the seriousness of the UK’s problem, which is etched in everyone’s minds. The UK has the fifth highest rate in the world of children with type 1 diabetes. In Northern Ireland, we have 1,040 children with type 1 diabetes, some of whom are born with the condition. I want to give a Northern Ireland perspective, but I will bring in the UK strategy, because diabetes affects the whole UK, and that is why it is important. Some 24.5 children in every 100,000 aged 14 and under are diagnosed with the condition every year in the UK. We had a reception where we met some of those young people, and if we needed a focus, the focus was there that day for those of us who attended. I think that most of the people in the Chamber were there.

The UK’s rate is about twice as high as that in Spain, where it is 13 children in every 100,000, and in France, where it is 12.2 children in every 100,000. The league table covers only the 88 countries where the incidence of type 1 diabetes is recorded. There are 1,040 children under the age of 17 with type 1 diabetes in Northern Ireland, and almost one in four of them experienced diabetic ketoacidosis before a diagnosis was made.

Diabetic ketoacidosis can develop quickly. It occurs when a severe lack of insulin upsets the body’s normal chemical balance and causes it to produce poisonous chemicals known as ketones. If undetected, the ketones can result in serious illness, coma and even death. The diabetes itself is not the killer; it is the offshoots from it, the effects on the heart, circulation, blood pressure and sight, and the possibility of strokes and amputations.

The number of people living with type 1 and type 2 diabetes has increased by 33% in Northern Ireland. In my Strangford constituency, the number has gone up by 30%, with 800 people—I am one of them, by the way—becoming diabetic in the past seven years. That compares to 25% in England, 20% in Wales and 18% in Scotland. In our small part of the United Kingdom, the total number of adults—aged 17 and over and registered with GPs—with diabetes is 75,837, and a further 1,040 young people under the age of 17 have type 1. There has been a significant rise in that number also, with the prevalence in Northern Ireland now at more than 4%. An estimated 10,000 people in Northern Ireland have diabetes and do not know that they do. They have a ticking time bomb in their bodies; they wonder why they are not well, and the cause is diabetes.

[Mr Gregory Campbell (East Londonderry) (DUP)]

My hon. Friend is talking about the different prevalence of diabetes throughout the UK. Does he agree that best practice regarding early detection and the promotion of an active lifestyle could be a target for all the devolved regions across the UK and here in England? The Minister would do well to respond in relation to Ministers in the devolved regions taking on such best practice to combat diabetes.

[Jim Shannon]

Yes, I agree. When people make interventions, I always wonder whether they have read my script—preventive medication is the very next issue on it.

In my doctors surgery in Kircubbin and, indeed, across Northern Ireland preventive measures are in place. There are diabetic surgeries, and the matter is taken seriously. The UK strategy that we have had for the whole of the United Kingdom of Great Britain and Northern Ireland and that will come to a conclusion this calendar year has made significant progress towards reducing the potential numbers, but diabetes has increased over the same period. There are some 100 diabetics in my doctors surgery in Kircubbin.

Induced Abortion

Gregory Campbell Excerpts

Wednesday 31st October 2012 Westminster Hall

[Jim Shannon]

I thank the hon. Lady for her intervention, but life is life as far as I am concerned; that is where I am coming from.

The survival of more than 70% of babies born between 22 and 25 weeks when high-quality care is available blows away the argument that a baby can be aborted until it is viable at 24 weeks. Recently, in America, a baby of 21 weeks responded to stimulus, crying and smiling, so there is evidence that shows clearly that it can happen. All the things that we associate with life are in evidence before the time of so-called viability.

I will give the example of a young girl from my constituency. A friend of mine had a grandchild who, they were warned, would not survive as she was so premature. The family prayed hard, and asked for all possible treatment to sustain the baby’s life. Today, Zoe-Lee is 13 years of age and is the light of her parents’ life. It is scary to think that if an abortion had been allowed at that time, that young girl would not be here today.

The question that has been posed to me by members of the medical fraternity is: how much longer can we justify doctors desperately—the hon. Member for Mid Bedfordshire referred to this as well—trying to save premature babies born at 23 weeks, while down the corridor in the same hospital, another doctor is aborting a 23-week baby, which is perfectly healthy, for social reasons?

A 24-week upper limit in the UK is outdated and out of line with other EU countries. In 2008, our 24-week upper limit was double the 12-week limit for most EU countries. Some 16 out of 27 other European countries had a gestational limit of 12 weeks or less, so if we want to be in line with other countries that have high standards, then let us do that.

Ask any woman who has miscarried a baby in early term—at, say, at 12 weeks—and she will tell you that she saw its perfectly formed fingers and toes, its spine and head, and that wee face. For me, it is almost unimaginable to take it from the womb at this stage, never mind any later, and to ask any general practitioner to do this is grossly unfair. I am no man’s judge, and I feel for those women who have felt that they had no other option than to take this step.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree—he seems to be coming to this point—that we need to try to develop a caring, compassionate approach to women who find themselves in the circumstances that he is outlining, but feel that there is no alternative to an abortion? We need to offer them another viable alternative.

[Jim Shannon]

I thank my hon. Friend for his intervention, because that is exactly the point I was coming to. For the reason I mentioned, I supported the calls by my colleague, the hon. Member for Mid Bedfordshire, to have better counselling in place for women considering abortion. Will the Minister update hon. Members on when new counselling will come into play, and on what has been done thus far?

Obesity

Gregory Campbell Excerpts

Wednesday 9th November 2011 Westminster Hall

[Mr Gregory Campbell (East Londonderry) (DUP)]

It is a privilege to speak under your chairmanship, Mrs Riordan. I am delighted to have secured the debate. I have come to notice, particularly with health-related issues, that an hon. Member may think they are well informed on a topic when they succeed in securing a debate, but once they have succeeded in securing it, the administrative back-up kicks in and all the groups involved start supplying them with significant amounts of promotional material, and they are even more well informed by the time the debate arrives. I thank all the groups involved with this issue for providing me with information.

Sometimes it is wise to start a very serious debate with a slightly humorous anecdote. I am reminded of the overweight gentleman who was sent along to his local well man clinic by his wife, as men are wont to be. She instructed him to go to the well man clinic and to come back with precise instructions on what he was to do to lose weight. When he came back with a smile on his face, his wife said, “There’s something wrong here. What exactly were you told?” He said, “Well, I’m exactly the right weight—for someone who is 7 foot 8.” Unfortunately, that encapsulates part of the problem.

A sedentary lifestyle is not only costing those members of society who are overweight very dearly; it is costing all of us exceptionally dearly. From the correspondence that I have had and my own research, it appears that obesity currently costs us—depending on whom we believe—between £4 billion and £7 billion a year directly and indirectly. Whichever figure is right, the reality in 2011 is that we are talking about an exceptionally expensive but preventable series of conditions. The situation is bad at the moment, but unless we take radical steps and measures, unless we do something fundamental—I will come to that later—the rates of obesity are likely to double in the next 30 years.

Currently, almost one third of children are overweight, so obesity is not a condition that is the preserve of either the elderly or the middle-aged. All of us in society, right across the age spectrum, are being affected. Only 20 years ago, people who visited America—perhaps somewhere such as Florida—would come back here and say, “The United States has a terrible obesity problem. Thankfully we will never be like that.” But we are, and things are likely to get worse.

For example, 25 years ago, about three quarters of schoolchildren walked or cycled to school; now, less than 10% do so. When giving that figure, I take into account the fact that there have been lifestyle changes, school closures and so on, but the fact remains that there has been a significant increase in sedentary lifestyles. There has been a change in attitudes. The unfortunate reality is that more and more of us are spending more and more time at desks, in front of computers. Many people become couch potatoes—unfortunately, that analogy is all too accurate.

I will give another statistic to show how things have got considerably worse. In the early 1980s, roughly 7% of the population were classed as overweight. That ratio has trebled in the past 30 years. We can see the trend. It is likely to double again in the next 30 years. We must get to grips with a problem that, as I said, is proving exceptionally expensive for us all.

Obesity is linked to socio-economic deprivation. The figures that I have been able to establish indicate that the ratio of children in lower-income households suffering from obesity is twice that of those in higher-income households. Again, we see the repetitive nature of the problem, the cyclical response that is indicative, because many obese children are, unfortunately, the children of either one obese parent or two.

Of course, we all know of the additional and subsequent health risks associated with this condition. We are all aware that heart attacks and strokes, coronary artery disease and type 2 diabetes are much more likely among the overweight. There is an additional cost further down the line, in years to come, as people who begin to be overweight today begin to show the symptoms of those other conditions only in years to come and then of course have to be treated by the NHS.

[Jim Shannon (Strangford) (DUP)]

Type 2 diabetes is one of those hidden diseases that some people do not know they have. The indications are that there will be a 50% increase in the number of diabetics in the next couple of years. Does my hon. Friend believe that diabetes itself needs a direct Government plan in order for that issue to be addressed, because it is a hidden disease that can kill?

[Mr Campbell]

I thank my hon. Friend for that intervention. I hope that the Minister will respond to it. I want to come on to some of the things that Health Ministers throughout the United Kingdom—in the devolved regions as well as here—can do to deal with the issue, but my hon. Friend’s point is certainly well made.

Having diagnosed the problem, as it were, I want to consider what is being done. It is not all negative. A considerable series of measures is being taken, not just nationally but locally. Various councils, various health trusts in Northern Ireland and other bodies are actively engaging in trying to come to terms with the problem. Many programmes that promote healthier food choices are being actively promoted. I am aware of the healthy eating awards, and of course we are all aware of the food labelling issues that have come to the fore in recent years. There have been other programmes aimed at reducing the salt, sugar and fat in some foods. All those things are creating greater awareness among the wider community, but we are fooling ourselves if we think that the measures currently in place will arrest the problem.

I will turn at this point to what needs to be done now and for the foreseeable future. Obviously, the fast food industry is a key player in relation to the problem. Some people in that industry are quite responsible. Some have responded to the campaigns driven locally and introduced more healthy eating options—they are to be commended for doing so—but some have not. We need to see best practice not just nationally but internationally being analysed and then promoted, so that we can see significant progress.

At the moment, there is—certainly in Northern Ireland, and I assume across the UK—a better educational approach in schools. Our young children, particularly primary school children, are now getting information that simply would not have been proper protocol 25 years ago. Many people then would not have even seen the need for primary school children to receive that type of education. That is changing, but again, more needs to be done to increase awareness. We have all seen issues where, for example, healthy eating has gone wrong. Sometimes we see photographs in newspapers that show parents queuing up to give other types of food to children because healthy eating standards have gone awry. We need to ensure that the whole educational process about healthy eating for children is properly assessed and rationally implemented.

When we ally the fast food sector—I do not want to name any of the organisations—with a sedentary lifestyle, I think we can account for 80% to 90% of the obesity problem.

[Nick Smith (Blaenau Gwent) (Lab)]

The hon. Gentleman’s point about a sedentary lifestyle is important. The Welsh health survey 2008 showed that 21% of the population in Wales were obese. Does he agree that encouraging people to exercise and to avoid the sedentary lifestyle that he is talking about is important to reduce the alarming obesity rates, in addition to eating more healthily?

[Mr Campbell]

I agree with that; I was just about to come to the issue of exercising. I love walking, and when I get the time to walk, as I try to weekly, I despair at the rarity of seeing other people walking and exercising.

[Jim Shannon]

Surely, my hon. Friend does not just walk; he marches. When someone marches, they lose more calories, and I understand that he marches often.

[Mr Campbell]

I thank my hon. Friend for bringing us back to basics with a Northern Ireland and Scotland perspective on that. That is true.

I do despair when, for example, I see very few people exercising between October and March or April, and even fewer children.

[Simon Hart (Carmarthen West and South Pembrokeshire) (Con)]

The hon. Gentleman will be aware, as I am, that part of the problem lies in the Department for Education, not the Department of Health. One of the obstacles to kids exercising is that teachers do not want to take them out of the classroom because of the raft of health and safety obstacles in the way. We need to address that in this Chamber as much as we do the health aspects.

[Mr Campbell]

I knew that the dreaded health and safety would come in at some point, and I am glad that the hon. Gentleman managed to get it in. I agree with him totally. Many teachers, administrators and principals would dearly love to get their children to exercise more, but they know that all the dreaded health and safety boxes have to be ticked.

[David Simpson (Upper Bann) (DUP)]

I congratulate my hon. Friend on securing this important debate. I shall encourage him by telling him that I have started to walk; it has not made a lot of difference, but I have started to do it.

Surely fast food outlets have a responsibility in their marketing tactics, which offer “buy one, get one free”. That needs to be addressed.

[Mr Campbell]

My hon. Friend is absolutely right, and I hope the Minister will respond to that. I know that a small number of fast food outlets in Northern Ireland have acted responsibly, but unfortunately they are a small number. It appears that the behemoth of consumerism will simply market and promote the message of “stack them high and sell them cheap.” We have to come to terms with that reality, because it is driving many people to an early grave—it is as serious as that. In 2011, many in the younger generation are not only overweight, but will be diagnosed in 20 years’ time with health conditions that could shorten their lifespan by up to 10 or 12 years, unless we get to grips with the problem.

There is, as the hon. Member for Carmarthen West and South Pembrokeshire (Simon Hart) indicated, an educational and health problem. It is for all of us in society to promote a healthier lifestyle. That is where I think we can do more to get role models to do what they can to promote healthy eating and a healthy lifestyle. Some role models, unfortunately, do anything but promote a healthy lifestyle, but we need to ensure that more suitable role models are approached and asked to try to promote such a lifestyle, so that we can address this horrendous and difficult problem.

[Mr Nigel Dodds (Belfast North) (DUP)]

I, too, congratulate my hon. Friend on securing this important debate.

Does my hon. Friend agree that although good progress on the issue has been made on a voluntary and self-regulatory basis, the time has come for more legislation? We have seen that approach with the compulsory wearing of seat belts and the banning of smoking in public places, which was resisted on all sorts of grounds. That approach has had a beneficial effect on health and public safety. Is it not time for the Government to go further in forcing food and drink companies to act more responsibly?

[Mr Campbell]

I agree with my right hon. Friend. We also need to look at the cost of products on supermarket shelves. Again I refer to some of the correspondence that has come my way. Fizzy drinks are quite attractive to younger people, and to some who are not so young. Is it fair that their low-calorie equivalents, some of which contain one calorie, and the fully fizzed-up versions, which can contain 139 calories, cost virtually the same?

A range of approaches needs to be co-ordinated and best practice needs to be introduced. I hope that the Minister will be able to speak about the devolved Health Ministers, with whom I hope he will have discussions about the best way to promote best practice and to ensure that, wherever practical and possible, close co-ordination can take place, so that across Scotland, Wales, England and Northern Ireland we can begin to address and—I hope—reverse this horrendous and difficult problem.

Ovarian Cancer

Gregory Campbell Excerpts

Wednesday 12th October 2011 Westminster Hall

[Ian Paisley (North Antrim) (DUP)]

I, too, congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this important debate, which I hope will be a springboard for increasing awareness and for encouraging the Department to pick up the gauntlet set before it today.

In the next 12 months, between 11 and 15 women in my constituency will die because of ovarian cancer. That is not a high or low figure; it is the average across the United Kingdom. We must wake up to the reality and that figure must be checked. We must embark seriously on a national campaign that will achieve better survival results, as has happened with major cancers such as breast and lung cancer.

I want to put four important and sobering statistics before the House. Most of the women who are diagnosed—75%—have late-stage disease, when survival rates are very poor. That is a very high figure. Also, 30% of women are diagnosed following admission to their local accident and emergency ward, not by their GP. Women with ovarian cancer are five times more likely to die within a month of diagnosis than women with breast cancer, and the UK’s late diagnosis is thought to be the key driver for those survival rates. Only 4% of women are confident that they can spot the symptoms of ovarian cancer.

I have two questions for the Minister. First, why, as the hon. Member for Winchester (Mr Brine) said, is there not yet any Department of Health-led activity to improve awareness of symptoms? That is the key to addressing the issue. Secondly, I take the view that what is not measured is not done, so why is there no national measurement for ovarian cancer?

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that greater awareness and early detection were the key to the significant progress made with other cancers? Many charities became involved with departmental officials to ensure that those things became the driver, which led to reductions in numbers. That is the key for ovarian cancer as well.

[Ian Paisley]

I thank my hon. Friend for making that point incredibly well. We have all come to realise that there is a lack of awareness because of lobby groups, patients in our constituencies and the families who come to see us saying, “Why did we not know? If we had known, we would have done something else and gone to the GP earlier.”

As I have said, a gauntlet has been thrown down to the Department. Let us have better national measurement of outcomes established and followed up—year in, year out—so that the disease, which has been described as a silent killer, can be properly tackled and we can achieve the same successes as we have with breast, lung and bowel cancer survival rates.

Caring Responsibilities

Gregory Campbell Excerpts

Wednesday 15th June 2011 Westminster Hall

[Sheila Gilmore]

That is clear example of what is happening up and down the country not only for older people who need care but for older carers themselves, who have very specific needs. Half of the 6 million people who are providing unpaid care in the UK are aged over 50. In England in 2010, nearly 1 million people aged 65 and over were providing unpaid care to a partner, a family member, who might be younger than them, or some other person. The largest number were aged between 65 and 74, but there were nearly 50,000 people over the age of 85 who were giving substantial amounts of care. A quarter of all carers aged 75 and over provided 50 or more hours of unpaid care per week. Carers over retirement age are a particularly vulnerable group because they tend to have health issues themselves. Such people say that they really have no retirement or that they have not been able to enjoy the retirement that they had expected.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate the hon. Lady on securing this debate. She refers to the age of carers. The survey to which she alluded earlier indicated that about half of all carers are in poor health. We often use the expression “a time bomb”, and it can be a cliché, but here we have a living example of a literal time bomb. If 50% of carers are in poor health themselves, we will, within a few short years, have a double whammy of a problem to deal with—the people who are being cared for and the carers themselves.

[Sheila Gilmore]

I thank the hon. Gentleman for that contribution. That is exactly the point that I was trying to make. The carers face not only health problems, but financial difficulties. Carers over retirement age do not receive a carer’s allowance even though they incur additional costs. They could use additional funds to buy some respite time that they might not otherwise get. They often become cut-off and isolated because they are not able to get out of the house to enjoy the sorts of social activities that enable people to live healthier and more fruitful lives.

Furthermore, there is an anomaly that needs to be resolved. Those on a low income who are over retirement age claim carer’s allowance, but they do not get paid it. Instead, they get access to a carer’s premium in pension credit. We have about 250,000 carers in that category. It is very confusing because they are claiming a benefit that they do not receive in order to get access to a completely different benefit. Hopefully, that is something that the current Government, with their zeal for simplifying the benefit system, will move very quickly to address.

As we debate this subject in Westminster Hall, the main Chamber is considering the Welfare Reform Bill on Report. Many colleagues who would have liked to be here are taking part in that debate. They know how important the Bill is to carers as well as to other people. The proposed changes to benefits are a big worry for carers. At present, carer’s allowance can be claimed if the person being cared for qualifies for either the middle or higher rate component of the disability living allowance. The successor benefit, the personal independence payment, will only have two bands of the daily living component, which is the equivalent of the care component. What is still not clear is how eligibility will work under the new benefit. Will it apply only if the cared-for person receives the new higher rate? How many people will lose eligibility for carer’s allowance as a result of these changes? In the Bill Committee, the Minister was unable to give us an answer to that question. However, Disability Alliance has calculated that to achieve even £1 billion of cuts to DLA—the Government’s forward projections expect there to be a £2 billion saving overall—there could be a risk to 643,000 people who currently receive the lowest rate and to a further 100,000 people on the middle or higher rate.

We are told by the Government that we cannot assume that everyone who currently gets the lower rate of DLA will lose out in the benefit changes because the new test will be very different to the old one, which leaves a question mark over an undetermined number of people. We cannot assume that all the losers in the new personal independence payment regime will be people who do not have a corresponding link to the carer’s allowance.

Neuromuscular Care (North-West)

Gregory Campbell Excerpts

Wednesday 9th February 2011 Westminster Hall

[Graham Evans (Weaver Vale) (Con)]

I thank Mr Speaker for allocating time for this important subject. I pay tribute to the excellent Muscular Dystrophy Campaign, which does such brilliant work in this field and has assisted me in preparing for the debate. This morning, I will bring to the attention of the Minister the significant gaps in specialist neuromuscular care services in the north-west region that many people living with muscular dystrophy and related neuromuscular conditions currently experience. Vital review work undertaken by the NHS North West specialised commissioning group in the past six months is encouraging, but families need to see it translated into real improvements to services. It also provides an opportunity to improve patient outcomes and to reduce the amount of money spent on unplanned emergency admissions to hospital for people in the north-west with neuromuscular conditions.

Let me briefly outline my personal connection to muscular dystrophy. I am 47 years old, and I had a cousin, Stephen Payne, who, if he was still alive today, would be of the same age. He was diagnosed with Duchenne muscular dystrophy at the age of six, and I remember the devastating effects that it had on our family. This was in the late 1960s, when not a lot was known about the condition. I remember my uncle, Mr Barrie Payne, taking his son to Harley street for a diagnosis. I am afraid to say that it was not good. None the less, Mr Barrie Payne is a fighter and a campaigner and he threw all his energies into fundraising to see if a cure could be found for Duchenne.

My very earliest memories, therefore, are of a family fighting and campaigning for a cure for that dreadful disease. I also have very early memories of politicians getting involved in this vital subject. I pay tribute to Lord Alf Morris of Manchester, who, at the time, was the MP for Wythenshawe. Coincidentally, Lord Morris’s sister lived on my council estate, and I remember him driving to our estate in his Wolseley car. At the time, those cars were for very special people. He came to see my family when he visited his sister and I remember thinking at the time what a special man he was. In those days, in the ’60s and ’70s, it was thought that politicians could help ordinary people from working-class backgrounds such as mine. I remember so well the work that my family and Mr Morris did to get a change in legislation. I am pleased to say that Alf Morris was behind the Chronically Sick and Disabled Persons Act 1970, which was the first Act in the world to give rights to people with disabilities.

I did my best to raise money for the muscular dystrophy charity. I used to sell pens, pencils, rulers and pencil cases in my school yard at primary school. Imagine a head teacher allowing a child to go into school with a bag full of goods to sell for cash in these politically correct times. Coincidentally, my head teacher lived next door to my cousin, Stephen Payne, and at school fairs he used every opportunity to raise money for muscular dystrophy.

My uncle continued to campaign to raise money and awareness. People in wheelchairs were often not allowed access to places such as airports and museums, which led to considerable arguments. My uncle rightly felt that people with disabilities should be allowed in. I am glad to say that in the 21st century, things are a lot different.

Stephen was a bright and articulate individual, and he was always forthright in his opinions. He was a Manchester City fan, while I was a Manchester United fan. When Manchester United got relegated in 1973, he certainly let it be known how pleased he was about that. Stephen died in California when he was 21. His peers died when they were in their very early teens, which just goes to show that palliative care and hydrotherapy can extend the lives of people with Duchenne.

The Muscular Dystrophy Campaign is the leading UK charity and focuses on all neuromuscular conditions. It is dedicated to improving the lives of all people with such conditions. Founded in 1959, the Muscular Dystrophy Campaign funds vital research, provides and supports care services and gives information, advice and direct help to individuals living with neuromuscular conditions. I am honoured to be a member of the all-party parliamentary group for muscular dystrophy, which has highlighted shocking gaps in service across the UK and continues to call for improvements in access to specialist neuromuscular care to follow up recommendations in the Walton report.

There are more than 60 types of muscular dystrophy and related neuromuscular conditions. It is estimated that more than 1,000 children and adults in every million of the population are affected by muscle-wasting neuromuscular diseases—in the north-west around 8,000 people in total. Such disorders can be genetic or acquired. A number of conditions, such as Duchenne muscular dystrophy, are particularly aggressive. They cause progressive muscle wasting, weakness, orthopaedic deformity and cardiac and respiratory compromise, and result in premature death. Many young boys in the UK with Duchenne muscular dystrophy are dying before they get beyond their teens; that is unacceptable.

Specialist multidisciplinary care has been developed by leading clinicians as the best model for delivering effective care for such complex multi-system diseases. The provision of expert orthopaedics and early cardiac monitoring and intervention has been shown to improve muscle function and maintain independent mobility. People with neuromuscular conditions, therefore, need specialist multidisciplinary care, support and intervention from a range of professionals and specialists. That was recognised as part of the specialised services national definitions set. Leading neuromuscular clinicians fought hard to get those services recognised as specialist by the Department of Health.

Specialised services are defined in law as services with a planning population of more than 1 million people, which means that a specialised service is not provided by every hospital in England. The SSNDS describes the services in more detail. The definitions provide a helpful basis for service reviews and strategic planning, which enables commissioners to make comparisons of activity levels and spend. They help with the identification of activity that should be regarded as specialised and therefore subject to collaborative commissioning arrangements. The 10 specialised commissioning groups, acting on behalf of the members of primary care trusts, are responsible for the commissioning arrangements for specialised services.

Neuromuscular conditions come under the auspices of a number of specialities; they are genetic conditions, so geneticists sometimes deal with patients. The conditions sometimes affect children, so paediatricians are involved. A number of the adult forms come under the heading of neurology. Some of the conditions require respiratory care, which is provided by a respiratory practitioner, and some are metabolic conditions such as Pompe, and patients are treated by specialists for metabolic disorders. Therefore, health care for people is quite fragmented, and that clouds professional responsibility. “Neuromuscular” must be recognised as a speciality along with neurology.

Dr Ros Quinlivan, a leading consultant in paediatrics and neuromuscular disorders, has outlined the effects of neuromuscular conditions and how they need to be managed:

“Neuromuscular conditions are rare and include: Muscular dystrophies, metabolic myopathies, congenital myopathies, inflammatory myopathies, Spinal Muscular Atrophies. Many of these conditions affect only skeletal muscle and thus cannot be considered to be neurological disorders, in fact skeletal muscle can be considered to be the largest organ in the body. Most neuromuscular disorders are genetic in origin and affect families, but the inflammatory myopathies are acquired and require specific treatment. Affected patients range from newborn infants to elderly people. The effect of many of these conditions is on the skeleton causing skeletal deformities due to muscle contractures and on the heart and lungs causing respiratory or cardiac failure which can significantly limit life expectancy.

The physical management of these disorders is quite distinct compared with conditions affecting either the nervous system or the musculo-skeletal system (bone and joints). Proximal and axial muscle weakness caused specific functional difficulties not seen in patients attending clinics in other specialist areas. The progressive nature of these conditions means that a multi-disciplinary approach to care, with experienced clinicians specialising in neuromuscular disorders, is essential to achieve the best outcomes.”

It is now felt by the clinical community that it is time to make a neuromuscular curriculum part of the medical career, to establish the neuromuscular field in its own right. The conditions have a lot in common, so it makes sense that they are treated by the same person. For example, some forms of limb-girdle muscular dystrophy exhibit similar symptoms to some forms of spinal muscular atrophy, but one is a muscle disease and the other more a neurological disease. They are long-term rare conditions, which makes them quite different from neurological diseases such as Alzheimer’s and Parkinson’s.

Neuromuscular services need to be commissioned on a regional basis. Currently they are commissioned by the 10 regional NHS specialised commissioning groups, with top-slicing of PCTs. That method of commissioning services for these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society. It makes no sense for one PCT to commission specialised services. Unlike conditions such as Parkinson’s or multiple sclerosis, there are no guidelines from the National Institute for Health and Clinical Excellence for these neuromuscular conditions, which presents real difficulties when trying to set standards of care across the country.

That situation has been a contributing factor to the postcode lottery that has arisen, and which was highlighted in the all-party group on muscular dystrophy’s Walton report, published in August 2009. That followed reports by the Muscular Dystrophy Campaign, as part of the charity’s “Building on the Foundations” campaign, which revealed the shocking lack of specialist care in many parts of the country. The lack of knowledge, training and skills in the sector is a significant concern. For example, there is no specific training or curriculum for neuromuscular services in the neurological field.

I am sure that hon. Members will share my concerns and the frustrations of people living with neuromuscular conditions in the north-west, as expressed in the Muscular Dystrophy Campaign’s patient survey in 2010. Deborah Hurst from Liverpool is affected by facioscapulohumeral—FSH—muscular dystrophy. However, she was not diagnosed with it until she was in her late thirties. She is now 47. Her two daughters were born before she was correctly diagnosed and one of them, who is now aged 25, has inherited the condition. Deborah says:

“I have two daughters and I knew one was affected, but the doctor told me I was fussing and silly. When I finally got them tested, he congratulated me on my actions, which I was very mad about as my daughter took her diagnosis very badly at the time and ‘congratulations’ was not what we wanted to hear.”

Mrs H from Lancashire has a son affected by a neuromuscular condition. She says that in her experience, GPs do not understand such conditions:

“My GP is very good but says, ‘We have about two hours of tutorial on muscular dystrophy in the whole medical training.’ So therefore they have no in-depth knowledge.”

Elaine Sands from Stockport is also affected by FSH muscular dystrophy. She does not receive any specialist care, but she would value the support of a neuromuscular care adviser. She says:

“As I am housebound, it would be nice to have someone give me physiotherapy and also some kind of visitor who knows about my condition, as I live alone and I would appreciate being able to talk to someone who understands the disease.”

However, the situation is different for Joanne Ashton. She has a five-year-old son, Liam, who has Duchenne muscular dystrophy. Through the specialist neuromuscular service at Alder Hey hospital, Joanne and her family have access to a specialist consultant, Dr Stefan Spinty, and to a full multidisciplinary service, including a neuromuscular care adviser. Joanne says:

“Shirley, our Care advisor, is fantastic. We only have to ask and she’s there. Liam had his wish granted, through the “Make A Wish Foundation”, because he was nominated by Shirley. So we are all impressed with the care advisors.”

The Muscular Dystrophy Campaign’s clinician-led report, “Building on the Foundations in the North West”, which was published in June 2009, made a number of findings about neuromuscular services in the north-west.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I thank the hon. Gentleman for giving way and I congratulate him on securing this debate. He has rightly referred to the issue of care advisers. Obviously I understand that the north-west of England is his particular concern, but does he agree that if more emphasis were put on having excellent care advisers right across the UK, like the adviser who he has just referred to, that would help those who suffer from this condition immensely in trying to come to terms with it?

[Graham Evans]

I thank the hon. Gentleman for that intervention. I wholeheartedly agree. When someone is suffering from a condition, there is nothing quite like having people trying to help who understand what they are going through, both physically and mentally. So I wholeheartedly agree.

As I was saying, the “Building on the Foundations in the North West” report found that three out of four neuromuscular patients and their families have no access to a key worker or a care co-ordinator. About 6.5 regional care advisers are needed to serve the estimated 8,000 people —which is up from an earlier estimate of 6,500 people—in the north-west area who have a neuromuscular condition. Many of those people are simply not known to providers of health services.

The report also found that neuromuscular patients have very limited access to treatment, in particular to ongoing physiotherapy. Specialist physiotherapists are required to support outreach clinics and to provide training and professional development for community physiotherapists. In the north-west, two fifths of neuromuscular patients said that they do not receive enough physiotherapy.

Another finding of the report was that there is no dedicated physiological service for neuromuscular patients, despite the importance of such a service as part of multidisciplinary care for that patient group, who have rare and very progressive conditions. Those conditions are often genetic, there are no known cures and there are only limited treatments available. Greater support at the transition from paediatric services to adult services is needed, given the evidence that services are removed or greatly reduced when patients leave paediatric services, even though their needs may well increase given the progressive nature of many of these conditions.

People with Learning Disabilities (NHS Treatment)

Gregory Campbell Excerpts

Wednesday 14th July 2010 Westminster Hall

[Chris Skidmore (Kingswood) (Con)]

As the secretary of the all-party group on disability and a member of the Select Committee on Health, I have a dual interest in this debate. I am also a member of the all-party group on learning disability. I am sorry that I could not attend yesterday’s AGM; it sounds as if it was a fascinating event.

I thank the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) for calling the debate, which is clearly necessary. If I repeat any of the points that he made so eloquently, it will be only because they need to be driven home. The debate highlights some current failings in the NHS with respect to people with learning difficulties. As the right hon. Gentleman said, there have been several reports on the issue in recent years. The Disability Rights Commission’s report, “Equal Treatment: Closing the Gap”, published in 2006, showed that although people with learning difficulties were more likely to develop conditions such as obesity and respiratory diseases, they were less likely to receive adequate care, treatment and health checks.

In the following year, as the right hon. Gentleman also mentioned, came Mencap’s report “Death by indifference”. That seminal study highlighted some of the failings of the past several years and showed that six people with learning difficulties had died prematurely owing to discriminatory care. Yet after those reports were published, and despite moves towards dealing with the situation, the most recent survey by Mencap, which was released in June—again, the right hon. Gentleman referred to it—showed that half of doctors and a third of nurses had witnessed a patient with learning disabilities being treated with neglect or a lack of dignity, or receiving poor quality care. Those statistics are clearly unacceptable.

What can be done? The right hon. Gentleman has already referred to the issues that we need to address. I shall probably repeat some of what he said, and I hope that he does not mind. To my mind, the first issue is training for professionals in the NHS. There is clearly an institutional failure to make adequate provision for people with learning difficulties in the NHS, despite the fact that they receive £1.7 billion of NHS money. The Mencap survey highlighted the training issue; it found that 53% of doctors and 68% of nurses felt that they needed specific guidelines on how to care for people with learning difficulties, and how treatment should be addressed to them, to meet their needs. There is clearly a gap that we need to examine in closer detail.

I welcome the plans in the White Paper that has just been published to end the top-down managerial approach and the current centralised funding of education and training, because previously the multi-professional education and training levy was not accountable in relation to the amount of training and continuing professional development that it provided. The White Paper sets out welcome plans to give employers greater autonomy and, above all, accountability. Accountability is what we need, because training has been available but there is no way of showing that it works. We need to get back to a local level, which is what the White Paper sets out to achieve, so that there will be greater professional ownership of the quality of training. I welcome that accountability and recognise that accountability at local NHS organisational level must also ensure that people with learning difficulties are treated adequately.

The second issue that I want to mention is the broader one of communication. That is at the heart of treatment for people with learning difficulties. The question is how to cross the communication barrier between professionals—doctors and nurses—and people with learning difficulties, who often cannot express their needs, which may be very individual. One of my constituents was recently rushed to the Bristol Royal infirmary on a weekend. He had a procedure on his heart and a doctor explained his condition to him as if he were communicating with a normal member of the public. That approach was clearly inadequate for someone with learning difficulties. The nurse then presented him with some complicated leaflets, which he could not understand. There was no co-ordination with his carer at NHS level—or certainly not at the acute hospital level—and that led to a man who was already very sick being further distressed and scared.

It is in that context, to which the right hon. Member for Coatbridge, Chryston and Bellshill referred, that the role of learning disability liaison nurses is crucial, for the support of patients, families and those who support people with learning difficulties. It is not yet clear how many such posts exist. In my area of Bristol, which has the Frenchay and Southmead hospitals, there are only two. However, I was surprised to discover that that is pretty good by national standards.

I understand that interesting new moves are under way towards developing the role of liaison nurses, and in particular that St. George’s healthcare trust in south London has gone further, by appointing a nurse consultant in learning difficulties. The success of that probably says something about the need to examine the NHS staffing structure in relation to people with learning difficulties. The holder of that nurse consultant post remarked:

“This job would not have had the impact it has had if it was not at consultant level.”

That shows an interesting divide, by which those with learning disabilities are often dealt with at a nursing level, when to get the impact that is needed it is necessary to go higher up the chain. Clearly, there is a need to explore the greater use of liaison nurses, the employment of a number of such nurses, and what happens at local level.

The White Paper gives us much encouragement about the personalisation of services, and, above all, the determination to put patients at the heart of the NHS. I note with interest that one of its principal aims is to ensure that shared decision making will become the norm. To use the familiar maxim that we use in the all-party group on disability, “No decision about me without me.” Sadly, we know that for some with learning difficulties that will be impossible.

We already know about the difficult ethical issues, which have been reported in the national media, in respect of those with learning difficulties having treatment forced on them. For instance, a lady with cancer was forced to undergo an operation. I do not want to touch on the ethical issues today, but such cases clearly raise questions about the relationship between patients and professionals. Given the White Paper, the greater personalisation of services and putting patients at the heart of the NHS, we must ensure that patients with learning difficulties are not left behind.

Personalised care that reflects individual health care needs is just as relevant for those with learning difficulties, if not more so. If we want to realise the promise of the White Paper—I note that it is also committed to promoting equality—we must understand the importance of health outcomes for those with learning difficulties. Moving from targets towards outcomes will benefit those with learning difficulties, as some of their problems need to be considered over a greater period, and hospitals cannot always deal with them in a single session. However, those outcomes are not being met, and that reflects on society.

Above all, it is important to ensure that the most vulnerable, particularly those with learning disabilities, receive the greatest care. In that regard, the introduction last year of incentive payments for GPs to carry out annual health care checks for those with learning difficulties was welcome. However, there is clearly a problem. Take-up has risen by about 60% between 2008-09 and 2009-10, yet still only half the money allocated for such checks by doctors is being used.

The White Paper and Government statements show that giving GPs greater control over their budgets will circumvent some of the centralised mechanisms. GPs will thus know exactly what tailored care is necessary for their patients, including those with learning difficulties. I hope that GPs will take the opportunity to expand the use of health checks within their allocated budgets. That will ensure that prevention is at the heart of treatment.

Above all, the issue is about prevention. As the right hon. Gentleman said, those with learning difficulties and disabilities are often at greater risk of illnesses that could have been prevented; they could avoid reaching the acute hospital stage, which can often be confusing and stressful, early in their treatment. Personalised care will ensure that GPs monitor patients more carefully. I hope that having annual health care checks in place will ultimately prevent people with learning difficulties from reaching the stage in the NHS that they find so disturbing—the stress of late diagnosis.

Finally, I echo the right hon. Gentleman’s comments about the national health service. We are not here to criticise the institution. We share a common cause; we wish to make it better and more effective for those with learning difficulties.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I thank the hon. Gentleman for giving way. He touched on the excellence of the national health service. Does he agree that we must try to ensure best practice throughout the United Kingdom, particularly in devolved regions, and that we should not have patients in one part of the UK demanding of the health service a level of service that they see elsewhere? We should aim for equality and best practice across the UK.

[Chris Skidmore]

I agree with the hon. Gentleman. We are learning that health inequalities throughout our nation are extremely profound. Only by dealing with health inequalities can we raise the standard of public health in the nation as a whole—something that applies to many of our public services. Having a greater drive towards the localisation of services and the personalisation of care will get us to the stage where prevention is at the heart of NHS treatment. Through prevention, we will achieve greater equality; it will iron out some of the inequalities that we see in our most deprived communities.

The principles on which the NHS was founded are still relevant today, and we agree that that must remain so. However, although free health care at the point of access should be available to all, based on need, we must look harder at how to ensure that the needs of the most vulnerable are met. That includes those with learning difficulties. More clearly needs to be done, but I hope that we will be able to achieve it.