§ Motion made, and Question proposed, That the sitting be now adjourned.—[Mr. Mike Hall.]
§ 10 am
§ Dr. Brian Iddon (Bolton, South-East)I am grateful for the opportunity to introduce this debate on Down's syndrome in the 30th anniversary year of the Down's Syndrome Association. I intend to highlight some of the difficulties facing the 60,000 people with Down's syndrome in the hope that we can change society's attitudes towards them. I congratulate the association on the work that it carries out on behalf of people with Down's syndrome.
My involvement with the DSA was catalysed by one of my Farnworth constituents, Mrs. Flo McBrien, the mother of Shelley, who was born with Down's syndrome. Flo had to campaign for vital surgery that has given Shelley a much better quality of life, and she now campaigns on behalf of other children with Down's syndrome, such as 18-year-old Joanne Harrison from Shrewsbury, who desperately needs a heart-lung transplant. If Joanne's heart defects had been detected by screening at birth and the necessary surgery carried out at that time or shortly afterwards, her physical condition would not be what it is today. I am grateful to Esther Rantzen, who highlighted Joanne's case and other similar cases in her television programme.
Down's syndrome is a genetic condition, linked to the presence of an extra chromosome that may manifest itself in learning disabilities of varying severity and in physical problems, especially cardiac abnormalities. Sadly, people with Down's syndrome experience discrimination throughout their lives due to ignorance and misunderstanding. In the previous parliamentary Session, I tabled an early-day motion requesting that the Government combat such ignorance and misunderstanding, especially as it affects the treatment of those with Down's syndrome under the national health service. It was the 12th most successful early-day motion in terms of the number of signatories.
I am rightly proud of the modernisation programme that the Government initiated and implemented for the national health service. Thousands of nurses are returning to the NHS and thousands more are in training. Many more doctors are coming through the process, and in a few years they will be able to practise. Thirty-seven new hospitals have been approved, many of which are under construction. Some, like the one in Carlisle, are already open.
The Government have produced two important documents about learning difficulties: "Once a Day" and "Signposts for Success". They highlight good practice for the commissioning and providing of high-quality health care for those with learning disabilities, who include adults and children with Down's syndrome. Many people receive excellent care under the national 2WH heath service, but some patients with Down's syndrome do not. That is unacceptable. Prejudice is encountered in two ways: by reduced access to clinically appropriate services and by the attitudes of staff who discriminate against Down's syndrome patients on the basis of disability alone.
Last year, the Down's Syndrome Association published a survey of parents of children with Down's syndrome, entitled "He'll never join the army". It showed that 28 per cent. of the 1,509 parents who were surveyed reported a high level of dissatisfaction with the standard of health care that their children receive. There have been cases of overt and covert discrimination, particularly by general practitioners, cardiologists and ear, nose and throat specialists, but also by other hospital doctors and health care workers.
Discrimination against people with Down's syndrome contravenes the Human Rights Act 1998 and the Disability Discrimination Act 1995. The rights of the disabled are exactly the same as those of any able-bodied person. Discrimination is illegal, and we must raise awareness to prevent further discrimination against people with Down's syndrome. Ignorance and misunderstanding must not be allowed to taint the image of one of the world's finest health services.
Every day in the United Kingdom, one baby in every thousand will be born with Down's syndrome, 50 per cent. of whom will be born with a heart defect that is detectable using simple, non-invasive diagnostic techniques. If such simple investigations are not conducted and the abnormality goes unnoticed, irreversible pulmonary complications can set in, resulting in a shortened life expectancy. Early diagnosis and surgery at an optimal time can save 80 to 90 per cent. of such children. Successful surgery can prevent problems that can severely compromise quality of life and life expectancy later in the child's life. The profound significance of such simple investigations and appropriate treatment must not be underestimated, because they can extend a baby's life expectancy by several decades.
Unfortunately, the existence of screening programmes is patchy, arbitrary and, where they do exist, variable in quality across health authorities. Even when screening is conducted, doctors do not always convey the diagnosis accurately or give appropriate advice, guidance and support. To illustrate the awful consequences of such inaction, I give the example of Katie, a nine-year-old with Down's syndrome. She received cardiac screening at four weeks of age, but was not strong enough to undergo surgery until she was four months old. That delay in treatment unfortunately resulted in irreversible pulmonary damage. Katie now requires a heart-lung transplant, but she is unlikely to be entered on the list for transplant surgery, simply because she has Down's syndrome. I urge Ministers to introduce a policy ensuring that all babies born with Down's syndrome routinely undergo cardiac screening to detect any abnormalities, and are referred for treatment if clinically necessary. No child should be discriminated against on the basis of disability: that is wrong, socially unjust and probably illegal.
The physical symptoms of Down's syndrome are unfortunately not confined to cardiac abnormalities. More than half the people with Down's syndrome experience difficulties with their hearing and have 3WH varying degrees of visual impairment. Given the nature of their disability, such sensory impairments should perhaps be corrected more speedily than for other patients so that the potential of people with Down's syndrome can be maximised at the earliest opportunity. It is therefore disturbing to learn of patients being denied access to NHS treatment on the basis of that primary disability.
The DSA has provided a catalogue of serious cases of discrimination within the NHS. For example, one mother of a three-year-old boy was told by an audiologist that if her son developed hearing problems for which grommets were the clinically appropriate treatment, he would not be offered them, simply because he had Down's syndrome. Another mother, of a 16-year-old boy, remarked:
I was asked by an ENT specialist how I thought my son's life could be improved by having his hearing increased.Denial of treatment is denial of opportunity for those people.From the moment of diagnosis, parents can be subjected to discrimination. Imparting the initial diagnosis of Down's syndrome is a crucial opportunity to convey positive, not negative, messages about the child's disability. One mother of a 17-year-old told the DSA:
When she was born we were told by a doctor that it would have been better if she had died at birth.A mother of an 11-year-old stated:Shortly after his birth a midwife told me that had she known she was carrying a child with Down's syndrome, she would have had an abortion.A parent of a 10-year-old boy commented:I was advised to have my son fostered or adopted when he was three months old as he wouldn't amount to anything and that it was best to try again for another baby.Such anecdotes are profoundly shocking. Parents have recounted horrific tales to the DSA of derogatory value judgments being made about their beloved children. Other parents have met with comments that verge on racism. Imagine the gut-wrenching feeling when one's child is described as a Mongol. That is how 12 of the parents surveyed by the DSA felt. That fiercely insulting term was discarded by The Lancet in 1964, and banned in publications by the World Health Organisation in 1965. However, the term was used to parents, by staff in the national health service only two years ago. In a society that espouses equality as a virtue, such practice must be not only reviled but eliminated.Prejudice is manifested not only by the use of insulting and derisory terms, but by implicitly and explicitly limiting the aspirations of people with Down's syndrome. One parent was told, "Well, he'll never be a brain surgeon." Another was told by an opthalmologist, "We won't bother with glasses, as he's not what you would call university material." The father of Rhian commented:
It has become apparent to us over the years that there is a general reluctance on the part of health care professionals to fully understand and treat with sympathy and interest the needs of our daughter aged 16. There has been far too much of the approach from them that, because she has Down's syndrome, this or that ailment is to be expected and not much can be done. This is almost always inherent and coupled with a patronising attitude.4WH Thankfully, such comments and treatment are not typical of the modern national health service. If such treatment occurs just once, however, that is surely once too many. Even if the majority of staff do not behave in that way, the minority must be forced to change.The Department of Health's documents "Once a Day" and "Signposts for Success" acknowledge that some people with learning disabilities do not get a fair deal in the national health service. It is estimated that, on an average list size of 2,000 patients, a GP may have approximately 40 patients with learning disabilities, some of whom may have Down's syndrome. Despite the existence of good practice and the large amount of guidance available, no national strategy currently exists to ensure that people with learning disabilities can access high-quality mainstream health services.
However, there are many examples of good practice within the NHS. Professor Tim Eden is a paediatric oncologist at the university of Manchester who works at both the Christie hospital and the Manchester children's hospital. He informed me recently that he and his colleague, Dr. Robert Wynn, a consultant paediatric haematologist, have overcome the difficulties inherent in treating Down's syndrome children who develop leukaemia. As a result, the prognosis for those children may be better than for other children with the same disease condition. Following chemotherapy, Down's syndrome children are noticeably more prone to contract infections than other children, which is the main problem. However, those medical practitioners have discovered that, by employing up-to-date nursing techniques, that difficulty can be overcome. That is good news for Down's syndrome children.
It is of paramount importance to ensure that doctors and health care workers are trained in the care of people with learning difficulties, and that any allegations of prejudice and discrimination are investigated and dealt with speedily and with due seriousness. Pressure needs to be exerted on the deans of medical schools—for example, through the General Medical Council—to ensure that training to deal with people with learning difficulties is taken seriously.
St. George's medical school in Tooting, London, is a beacon of good practice. The DSA is working with the school to develop a pioneering on-line learning package, which is funded, I am pleased to say, by a £25,000 Department of Health grant. That will allow doctors to diagnose correctly people who have learning difficulties and train them, and health care workers, to deal with that group of patients more sensitively.
Disgust at the apparent discrimination experienced by people with Down's syndrome is not confined to patients, their parents and other relatives. It extends into the health professions. Dr. Vivian Nathanson of the British Medical Association said:
Doctors are making blanket policies about treating patients. This is ethically dubious. They should all be treated as individuals, not on the basis of some classification.Alexander Harris is a solicitor who represents a child with Down's syndrome. He contacted 180 parents of Down's syndrome children, five of whom claimed that doctors had failed to give access to vital surgery. Eight of them said that children had died or were expected to die shortly due to delays in diagnosis and surgery.I call on the Department of Health to ensure that four steps are taken. First, cardiac screening must be compulsory for all babies born with Down's syndrome. 5WH Secondly, they must have faster access to all required health services and, in some instances, receive positive discrimination in order to maximise their potential. Thirdly, training has to be in place in all medical schools so that doctors and health care workers can better understand the needs of those born with Down's syndrome and other learning disabilities. Fourthly, the Department must send out a firm message to everyone that the national health service should be a model of good practice and that discrimination against those with Down's syndrome will not be tolerated.
The chief executive of the DSA and I recently met the Minister of State, Department of Health, my hon. Friend the Member for Southampton, lichen (Mr. Denham), and our proposals were given a good reception. I hope that they will be enacted. I look forward to listening to my colleagues and to the response of my hon. Friend the Minister for Public Health.
§ Mr. Mike Hancock (Portsmouth, South)I am delighted to take part in the debate. I heartily congratulate the hon. Member for Bolton, South-East (Dr. Iddon) on his good fortune in having the debate chosen, and on the splendid way in which he presented the case on behalf of Down's syndrome sufferers in the United Kingdom.
For a long time, I worked for Mencap and encountered daily the problems about which he spoke so eloquently. I repeatedly came across examples similar to those that he described, although many were far worse. One thing that always arose was the long wait that parents and young Down's syndrome sufferers had for everything. Nothing was ever available when needed. The fact that the issue had to be dealt with was recognised, but there were always long periods before their needs were met and before the health service, education, respite care and housing requirements were in place. Carers, and especially parents, had infinite patience. They never asked for a great deal, but only for a fair deal, which was and is still sadly lacking in too many cases.
Down's syndrome and learning disability sufferers were forgotten after the war, 60 years ago, in the speedy process that brought our health service together for the first time. They were to be considered later, but time continued to pass. Forty years had passed before people had started to get to grips with many of the issues, which is a sad reflection on all of us. It reflects the way in which the ignorance associated with the syndrome and learning disabilities generally has been allowed to persist. For one reason or another, Governments, local health authorities and local councils have ignored the issues and decided to prioritise elsewhere. That is why debates such as this are fundamentally important.
If we are to give all individuals in our nation, whatever the skills, disabilities or intelligence they are born with, the right to fulfil their true potential at their own pace and their own level, we must make sure that we put an end to that ignorance and desire to ignore the problem. The Down's Syndrome Association, which has existed for 30 years, has made a remarkable achievement, as has Mencap, which has been in existence for 50 years. Those organisations have had to struggle to educate the public and professionals about the issues.
6WH It is a great shame that the Down Syndrome Educational Trust, whose national headquarters is in my constituency, failed in its recent lottery bid. That money would have given the trust an opportunity to develop the Sarah Duffen centre, which is named after a young lady with Down's syndrome who fought against all the odds to reach her true potential. She is a classic example of what can be achieved when people are prepared to give someone an opportunity. Very few people with Down's syndrome, and very few of their parents, who are given that opportunity refuse to take it. Had the lottery bid been granted, it would have enabled the trust's work to expand and develop. It would have helped the trust to make people more aware of the problems faced by those with Down's syndrome. More importantly, it would have enabled it to give expert training, which is vital if we are to help those with Down's syndrome to reach their true potential. That has been denied the trust by the lottery decision. Perhaps the Minister for Public Health might influence her colleagues elsewhere in Government to reconsider that application. No reasonable excuse has been given as to why it was not granted.
This Government and the previous one have done a lot to bring the debate further into the public domain and set things in motion. However, there are deficiencies in the ageing policy adopted in social services and health authorities, which tend to treat older people with Down's syndrome as if they were 17 or 18 years old. They have not adapted their policies to ageing people with Down's syndrome. In many day centres, those people have the same experience that they had 30 or 40 years ago when they first went there. People aged 60 with Down's syndrome are no different from other people. They do not want to sit in a room full of loud music; they want peace and quiet, and the space to develop in their own way. That space is denied to many people because of a lack of resources. Some day centres have changed, but others have not and need to do so. More needs to be done.
We must also consider the issue of respite care for the ageing population of mums and dads who have cared for their children all their lives. The needs of those parents have changed. For example, they need to be trained to let go of their children. I have spent a lot of my time, as a professional in the field, trying to educate parents to let their children take the risks that children normally take and allow them to go to mainstream schools or further education colleges. However, we had to arm wrestle people to get such children into colleges, because those children were not perceived as having the same rights as others to go into further education. Every case was a personal struggle for parents and people campaigning on their behalf. That cannot be right but, sadly, it continues to happen.
We must ensure that the benefit system is easily understandable and offers opportunities for people with Down's syndrome to do more than simply be cared for. It is important that housing is provided for those who want to be independent and are able to live alone without being a threat to themselves. However, that accommodation must be provided close to their friends and family, so that support is on hand, just as we prefer our families to live close to us so that we can support them. Housing for people with disabilities is often the 7WH last thing that is thought about. Often, such housing is situated in places that are out of the way and difficult to reach.
We must also provide work opportunities. I remember many examples of youngsters, who previously were given no chance, responding when they were offered proper opportunities. A classic example is that of a young lad who moved to Guernsey from his home in Glasgow when his father retired from the Glasgow police force. He had lived in a long-stay institution for 15 years, but he went to work, first on a day placement and then at Grow Limited, an organisation that was formed by Mencap and gave such youngsters in Guernsey an opportunity to work. Within two years, he had learnt to drive and had passed his driving test. Had he remained in Glasgow, he would not have had that opportunity. He was able to take it because people could explain to his parents nicely that their son was now a young man and deserved the right to be released from their care for long enough to take some of the risk that we all experience, to fulfil the potential that was always there and to gain some satisfaction in life. The boy's life changed completely, as did that of his parents. Many other examples show how much can be achieved when time is taken and the pressure is off.
This debate opens the door for a great deal of opportunity and I am delighted and proud to have taken part in it. Once again, I congratulate the hon. Member for Bolton, South-East on his contribution to the struggle to get a fair deal. People with Down's syndrome do not ask a lot; they want only to be treated in the same way as every other young person and adult in Britain—to be given a chance and an equal share of resources, to be taken seriously and to be treated with respect and dignity. In my opinion, that is not a great deal for people to ask. After a 50-year struggle, it is about time that we as a nation recognised their rights.
§ Mr. Ian Stewart (Eccles)I congratulate my hon. Friend the Member for Bolton, South-East (Dr. Iddon) on having secured this important debate. I come to the issue as a constituency Member of Parliament. Although I had a general awareness of Down's syndrome as an individual, my attention was focused and heightened by my contact with the Bell family, who live in my constituency and about whom I shall say more later.
When my attention was drawn to Down's syndrome children and the problems that they face, I found out some statistics. Two babies with Down's syndrome are born every day. As my hon. Friend the Member for Bolton, South-East pointed out, half of those children will have some form of heart defect. Failure to detect such problems early in life can have serious consequences. If they are found early, they can be fixed through surgery, as has been pointed out. If screening does not occur until later in life, however, a degenerative heart condition can cause serious health problems and even death. Because of the stigma attached to Down's syndrome, many patients are not given the essential heart screenings that can avoid such grave health consequences. The Down's Syndrome Association 8WH recommends that every child born with Down's syndrome should be given an echocardiogram to screen for heart defects. That is the only test that can provide an accurate diagnosis. The majority of defects are surgically treatable with a good prognosis, but if they are left too late, there can be irreversible change from pulmonary vascular disease.
Last year, the Down's Syndrome Association conducted research among 1,500 families with a Down's syndrome child. It showed that 28 per cent. of its members had experienced discrimination. It was alleged that in some cases discrimination went as far as withholding treatment and that children had died as a result. Discrimination against Down's syndrome patients is rampant. It ranges from name calling to the denial of necessary medical treatments. I have been told that some Down's syndrome cases have been passed over for heart and lung transplants because it was felt that their lives were of less value. Article 2 of the Human Rights Act 1998 states:
Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which the penaltyprovided by law is death.More than half of the people with Down's syndrome have significant hearing problems, and problems with vision are at least as common. Help for vision and hearing problems is available through surgical intervention or by providing glasses, hearing aids and other techniques, which are offered routinely to other groups of people. It is imperative that hearing and vision problems are recognised and treated so that they do not create further obstacles to full development. Those children have the right to develop as fully as other children.
To combat the mistreatment of Down's syndrome patients, the Down's Syndrome Association recommends that every medical student should receive longer training on learning disabilities. Improvements need to be made to many aspects of treatment, including the manner in which the medical staff first inform parents that their child has Down's syndrome, and the actual treatment of the child. Such programmes have been developed, but should be given a higher profile.
St. George's medical school in London has developed a successful course, which uses practical case studies of people with learning disabilities and their problems. It addresses not only the medical issues involved but the attitudes of the students. However, the class is optional. The Down's Syndrome Association is working with St. George's to develop a web-based learning tool on how to diagnose effectively, and treat sensitively, people with learning disabilities as well as those with Down's syndrome. The Department of Health has donated £25,000 to that cause. The money is welcome, but more needs to be done.
At the beginning of my speech, I referred to the Bell family in my constituency of Eccles. I am proud to have made the acquaintance of Ms Alex Bell, who fosters six Down's syndrome children. I have rarely met a more happy, secure and loving family, but I mention the Bell family only to highlight the problem. I am sure that there are many other loving families throughout my constituency and, indeed, the United Kingdom. They 9WH need understanding and support, but that demands a change of attitude in our society. I know that the Government will take steps to ensure that proper support is forthcoming and to engender such a positive change in attitudes. I support the four demands made by my hon. Friend the Member for Bolton, South-East and congratulate him again on securing this debate, which highlights such an important issue.
§ Sandra Gidley (Romsey)I should like to congratulate the hon. Member for Bolton, South-East (Dr. Iddon) on bringing this matter to our attention. I also congratulate my hon. Friend the Member for Portsmouth, South (Mr. Hancock) on his contribution. It was heartening to hear him say that matters have improved in the past few years, although we have a long way to go.
We heard that 60,000 people in the United Kingdom have Down's syndrome. Every day two people are born with the condition. The key word in both those sentences is "people". Down's syndrome people look a little different, are more prone to a range of health problems and, yes, may act a little differently, but all people deserve to have the best health care possible so that they can lead happy and healthy lives. Who are we to decide that people with Down's syndrome do not deserve the very best—and believe me, they are being denied the best. I read the survey entitled "He'll never join the army", which I would recommend to anyone because it is a real eye opener. I defy anyone who reads it not to be shocked and horrified.
From the moment of their birth, comments about Down's syndrome babies are commonplace. The survey gives several examples. For instance,
When it was discovered that the baby I was carrying had duodenal atresia, one doctor suggested that we withhold permission for the operation that was essential to save her life.Or,An eye specialist recently told me that my daughter needed glasses 'but with her condition one would not be able to tell if there was any improvement in sight'.Or again,He was screaming and rolling around in agony. The doctor asked if he was in pain—as if he was an alien.Finally,Our son was described by a senior physician as 'an unacceptable burden on resources medically, socially and educationally'.Those examples are indicative of an oft-prevailing attitude—but it gets worse. One in two children with Down's syndrome are born with a heart defect. Some are minor, but others are severe and require medication or surgery. It is essential that those problems are identified in the first few weeks of life, but although the possibility of heart problems is well known, all too frequently an echocardiogram is not carried out and the symptoms are ignored. It should be compulsory for testing to be conducted in the first couple of weeks of life. Again, the examples are heart wrenching:I was told by our original paediatric consultant that it would cost at least £10,000 for heart surgery and that they would rather spend that sort of money on a 'normal' child…and:Our daughter's heart problem was not found until she was two years old, which we found strange as so many children with Down's Syndrome have some sort of heart defect. Then we were told it was too late to operate.10WH Those attitudes are still prevalent, yet there is a body of evidence to show that an early operation is less of a financial burden on the health service, and is in the best interests of the patient. If the operation is not performed, the prognosis is poor. In their early 20s, sufferers will probably be wheelchair bound and in a great deal of pain and discomfort, not to mention the fact that that will cost the taxpayer a great deal more money than the original £10,000.All that makes harrowing reading, but I do not believe that the majority of medical staff involved are deliberately cold and uncaring. Their comments often stem from ignorance and lack of sensitivity. A seemingly cold and callous remark at birth can make it difficult for parents to bond with their new baby, and I would go so far as to say that it can potentially cause long-term problems with the relationship.
We witness discrimination. The basic training need must be addressed, because health professionals must be able to see the person, not the disability. It will take a long time to change entrenched attitudes, but we can make a start by insisting that students in the health professions receive training in learning disability issues, as mentioned by the hon. Member for Bolton, South-East.
I have come across children with Down's syndrome ranging from the cheerful and happy to the downright disruptive—exactly the same range of behaviour found in so-called normal children. In any group of people there are a wide range of behaviours and abilities, and we typecast any group of people at our peril. Health professionals must learn to see the person, not the condition. People with Down's syndrome no longer regard themselves as sufferers.
It is more difficult to insist on on-going training as, in my experience, those who are most in need of training are least likely to seek it. Once that is in place, attitudes will begin to change. I would then hope that no person with Down's syndrome would be treated differently or would ever be denied treatment because of his or her condition. By that, I also mean that the appropriate medical tests should be undertaken. Those are some of the aims of the Down's Syndrome Association, as outlined by the hon. Member for Bolton, South-East. I wholeheartedly support those aims and urge the Government to do all they can to deal with those problems.
§ Mrs. Caroline Spelman (Meriden)I add my congratulations to the hon. Member for Bolton, South-East (Dr. Iddon) on securing the debate. This is the first time that I have followed the hon. Member for Romsey (Sandra Gidley), so it is nice for me to be able to welcome her to Westminster Hall for an Adjournment debate.
The topic that we are considering is a classic subject for an Adjournment debate, because all political parties are trying to tackle fundamental prejudice in society. We have talked about health professionals, whose response has a key part to play in achieving what we want for people with Down's syndrome. The truth is that prejudice in the population at large is extensive. We are tackling a big problem in society, and that can be done effectively only by taking a cross-party approach.
11WH Probably the most anxious moment for any parent of a newborn baby is when the child is passed to the paediatrician for health checks. What the health professionals then say to the parents is paramount. I expect that there is not a parent in this place who would not recognise the worry of that moment. The words that doctors use often replay in the parent's mind for years to come, and if crass or insensitive language is used, the damage can be very real. We have heard examples of just the wrong kind of language being used.
Many women opt for tests for Down's syndrome during their pregnancy, but for many that is a difficult decision. The classic test of amniocentesis carries a risk of miscarriage, and women who have miscarried may fear such a test. Faced with the dilemma of what to do if it were established before birth that the child had Down's syndrome, many mothers decide not to cross that bridge at that stage and do not have the test. The birth is often the moment when the discovery is made. In a handful of cases—an example occurred recently—the test can be wrong. That, as we saw from the interview with the parents, causes real distress.
A cultural problem has arisen. With new technology, we are moving into an era when prospective parents think of having a perfect baby, a perfect birth and no problems. The truth is that human beings are born in different shapes and sizes, with a wide range of variations in ability and disability. That huge variation is part of our make-up. As the hon. Member for Portsmouth, South (Mr. Hancock) said, there is a huge variation in the severity of Down's syndrome. In some people with the condition, the symptoms are very mild and they are perfectly able to lead a virtually normal life. I wholeheartedly agree that they should be given every opportunity to do so. Set against that, the appalling statistic that more than a quarter of parents of Down's syndrome children have experienced discrimination at the hands of health professionals needs to be tackled.
Like the hon. Member for Romsey, I read with horror the results of the survey carried out by the Down's Syndrome Association, "He'll never join the army". I read the whole document, and was aware of the same telling phrases that several hon. Members have referred to, which show how damaging language can be, and of the fact that decisions made by health professionals have adversely affected the outcome for some Down's syndrome children. I was also shocked by the responses to the two questions in appendix 3, which show the scale of the problem. There were 1,509 responses to the survey, and beyond the 28 per cent. who were dissatisfied with the NHS help that they received, 126 respondents experienced specific difficulty in certain disciplines of medicine. It is important to dwell on that finding for a moment, because it may help the Government to focus their efforts on the relevant areas.
Interestingly enough, the greatest difficulty was experienced in cardiology. We should not be surprised by that: cardiac conditions in people with Down's syndrome need special attention. The survey showed that, for those parents, that discipline's response was inadequate. Next came general practitioners, which suggests that an extra effort needs to be made in training 12WH GPs, as they are often the gateway to specialist treatment. I suspect that that is the cause of some dissatisfaction.
In third position came ear, nose and throat specialists. We have already heard that prejudice may exist and that quite straightforward procedures such as the fitting of grommets are sometimes not thought to be worth while. That is clearly a long way from the guidance given to the profession on how to deal with such cases. Such instances highlight where the Government should focus their attention.
The view of those at the top of the medical profession is clear. Dr. Ian Bogle, chairman of the British Medical Association, said:
All patients are entitled to good standards of practice and care from their doctors. A person with Down's syndrome has the same rights as any other person.That, however, contrasts with people's experience. We heard that St. George's teaching hospital has a special programme to help doctors to learn more about what might benefit patients who have learning disabilities. My immediate thought was that if St. George's hospital can do it, others can too. Distance learning packages, such as the one described by the hon. Member for Portsmouth, South, are a good answer. We often see best practice in the NHS, but it seems incredibly difficult to disseminate that throughout what should be a national service. I ask the Government to redouble their efforts to cross-fertilise those good ideas.I want to talk a little about age management, mentioned by the hon. Member for Portsmouth, South. I have a residential care home for people with Down's syndrome in my constituency. By coincidence, I was there on Saturday. Some of the residents are over 60 years old. That is a long lifespan, especially for people who have different requirements at various stages of life. I am pleased to say that that residential home is much more a home than an institution for the residents, some of whom have lived there for more than 30 years.
I was struck by what the hon. Member for Portsmouth, South said about older people not enjoying beat music blaring out from a ghetto blaster in a corner of the room, because some of the rooms in that residential home had been made quieter and more suitable for those women who were getting on in years. As a result, activities were possible in those quieter rooms that would appeal to ladies at that stage of life, such as weaving and other crafts. We must be careful not to take a "one size fits all" blanket approach to the needs of people with Down's syndrome. As the hon. Gentleman said, the condition varies so much that provisions need to be tailored to bring out everyone's full potential.
What more does the Minister think could be done to enforce the existing guidelines for dealing with Down's syndrome? Those guidelines are clearly not respected by all health service practitioners. If the guidelines are not adhered to, sanctions must be available. No one with Down's syndrome should be refused treatment on the grounds of that condition alone. Such action cannot be right. If hospitals were aware that claims could be made against them for negligence, they would be much more careful about what they said and did to patients who have Down's syndrome.
13WH I agree that an echocardiogram should be carried out on all newborn babies to ensure that Down's syndrome children are not discriminated against. There is no good reason for denying them that procedure. Indeed, it is a cost-saving measure, as has been said. If it is carried out early, it can save considerable problems later. It is difficult to understand what the justification could be for failing to do that. If a hospital fails to carry out that procedure and it is decided that it should be policy to test all newborn babies with Down's syndrome, the hospital should be subject to negligence claims.
In reply to a question from Lord Robertson of Oakridge in the other place last October, Lord Hunt of Kings Heath said:
The current guidance on health services for people with a learning disability…which includes Down's Syndrome, makes clear that they have the same right of access to NHS services as everyone else and that special care should be taken to ensure that they are not denied health care because of their disability.—[Official Report, House of Lords, 11 October 1999; Vol. 604, c. WA35.]That is a clear and unequivocal ministerial statement, but nevertheless the guidance is ignored. I should be interested to hear from the Minister how that guidance can be made effective. The good-practice programmes "Signposts for Success" and "Once a Day" have not got to the root of the prejudice against people with Down's syndrome. We must start training the health professionals involved much earlier in the process.The sanctity of life is the principle that underlies our demand for an end to discrimination against people with Down's syndrome. I do not believe that there is party political division on this issue. The problem is how to achieve our aim.
§ The Parliamentary Under-Secretary of State for Health (Yvette Cooper)I congratulate my hon. Friend the Member for Bolton, South-East (Dr. Iddon) on securing this debate on an extremely important issue. His points and the statements that he and other hon. Members quoted from their constituents and the Down's Syndrome Association report "He'll never join the army" are extremely powerful testimony to the trouble and torment that discrimination and indifference can generate for people with Down's syndrome and their families. They highlight the problems that people with Down's syndrome can face in practice.
People with Down's syndrome have the same rights of access to health and social services as anyone else. They should not be discriminated against simply because they have a learning disability. I am proud that the Disability Discrimination Act 1995 and the Human Rights Act 1998 are on the statute book. Those measures are designed to stamp out unacceptable practices and to make people more aware of when they are discriminating against others or undermining or denying others' rights. The Acts apply as much to health services as to other spheres of our lives.
Guidance issued to the national health service in 1996 made it clear that it is against the law to offer a service that is not as good as that being offered to other people, purely on the grounds of an individual's disability. Discrimination on the grounds of learning disability in our health services is unacceptable. However, in 14WH practice, discrimination and prejudice continue. Some of that discrimination stems simply from ignorance, and I pay tribute to the valuable work of the Down's Syndrome Association and other organisations in raising awareness of the needs of children and adults with Down's syndrome. The Minister of State, my hon. Friend the Member for Southampton, Itchen (Mr. Denham), met representatives of the association and my hon. Friend the Member for Bolton, South-East to discuss their anxieties, especially about possible discrimination in the health services against people with Down's syndrome and about training medical staff and others.
The association also had the chance to give evidence to the second stage of the Brompton hospital inquiry, which is considering parents' anxieties about the matter. However, raising awareness and setting standards to prevent discrimination are not a matter simply for the law and voluntary organisations. The NHS also has a part to play.
Guidance issued in 1992 reminded authorities that people with learning disabilities have the same rights of access to NHS services as everyone else, and stated:
Special care must be taken to ensure that they are not denied health care because of their disability.That guidance was followed up in 1998 by far more detailed guidance in "Signposts for Success", which was mentioned by my hon. Friend the Member for Bolton, South-East. That publication provided good practice guidance on commissioning and providing health services for people with learning disabilities, stating that commissioners of services should develop service specifications, standards and monitoring to ensure that there are guidelines for sensitive sharing of information with parents about their child's impairment—points that were raised this morning by hon. Members. It also recommended that commissioners should ensure a shared understanding of the needs of families and the specific needs of children with disabilities and, importantly, the provision of early intervention services and counselling, as well as access to the necessary specialist services, for families.We continue to reinforce the guidance contained in "Signposts for Success" by publishing booklets aimed at specific groups of health service staff. "Once a Day", to which reference has been made, was aimed particularly at primary health care staff and stressed the need for the sensitive sharing of information about a child's disability. It also stated:
Particular conditions, such as Down's Syndrome, carry an increased risk of certain health complications such as cardiac disorders, respiratory problems, thyroid disorders and hearing impairment.We are preparing guidance based on "Signposts for Success" for staff in in-patient and out-patient services. That guidance has received considerable support from professionals, from those responsible for commissioning and providing services and from family carers.The big question is how far that guidance is implemented in practice. A recent survey commissioned by the Department of Health, entitled "Facing the Facts" shows that there is still considerable variation in the health and social services provided for people with Down's syndrome. In other words, provision is patchy. 15WH That situation has also been spelt out in the work of the DSA and by the contributions of hon. Members this morning.
Implementation is vital, as is ensuring that we spread to every area the best practice that we know occurs in some areas. It is unacceptable that the care received by people with learning disabilities and Down's syndrome should depend on where they live. That is why we announced last year a new national learning disability strategy, to be launched towards the end of this year. We do not envisage a radical departure from existing policies and guidance, although we need to build on them; the central task is to make sure that we eliminate inconsistencies in service delivery and that all services meet the level of the best.
Work on the strategy therefore seeks to identify ways in which current policies and good practices can be implemented across the NHS and social services. As part of that work, we will consider what monitoring arrangements need to be put in place to ensure the proper implementation of the strategy and the prevention of unfair and unacceptable discrimination against people with Down's syndrome. The work is being taken forward in several small sub-groups that address a range of issues on children, supporting independence, health and work force planning and training.
We are involving a wide range of interests, including people with learning disabilities, family carers, professional organisations, providers, the Association of Directors of Social Services, the Local Government Association, the NHS Confederation and voluntary organisations throughout the sub-groups, the Department's learning disability advisory group and focus groups. We have also commissioned work on such issues as access to primary and hospital care, research issues, cancer services and services for black and ethnic communities. Dr. Oliver Russell chairs the health subgroup and he, with other officials, met the DSA last year to discuss its concerns about cardiac screening, discrimination and medical and other staff training. The sub-group on children has also considered such issues as early intervention and family support and has involved a number of advisers, including the DSA. I hope that our debate will inform work on the development of the new learning disability strategy.
I shall now respond briefly to the points that have been made in the debate. As my hon. Friend the Member for Bolton, South-East said, children with Down's syndrome are known to have a much higher risk of congenital heart disease than the average population: 40 to 50 per cent. of such children will be born with a cardiac abnormality. Given the known predisposition of that group of children to such problems, it is clearly good clinical practice to assess such babies for cardiac abnormality at the earliest possible opportunity, using the full range of non-invasive diagnostic methods that are available. That is the best way to ensure that appropriate treatment can be offered at the optimum time to achieve the best possible outcome for the child. Obviously, it is a matter for individual clinical judgment to ensure that the assessment is undertaken at the most appropriate time, taking into account the condition of 16WH the baby and the state of mind of the parents. How we ensure that that best practice is followed up certainly needs to be part of the new strategy.
My hon. Friend referred to the need to speed up access to care for those with Down's syndrome. All children have access to child health surveillance programmes, but it is clear that those with known needs often require referral for assessment earlier than the usual developmental checks. For those children, earlier detection and intervention can be helpful in best achieving their full potential. The child development centre, working in conjunction with the child, parents and professionals in many agencies, should be well placed to draw up an appropriate plan for the child's health, skills, development and play.
My hon. Friend referred also to the training of medical undergraduates and health professionals. University medical schools determine the content of the curriculums in the light of the recommendations of the education committee of the General Medical Council. Furthermore, the medical curriculum development scheme was launched in April 1998 to encourage national health service bodies and partner medical schools to work together on curriculum development to meet NHS needs. The chief medical officer has made available funding for six projects, the purpose of which is to consider what permanent mechanisms can be put in place to review and address NHS needs in curriculum development.
One of those projects is based in Leicester and is called "Learning from Lives". It is aimed at third-year medical students and has two themes, one of which is a comprehensive understanding of the nature and consequences of chronic disability. Students undertaking the course explore the differing needs of elderly and younger mentally and physically disabled patients and investigate the range, roles and accessibility of the multi-disciplinary teams that are involved in the care. Organisations from the voluntary sector are also involved. Students will be expected to develop professional behaviour and adopt a positive regard towards disability.
The projects are now in their final year and the Department of Health intends to publicise as widely as possible the good practice that is emerging from them to encourage similar collaboration in curriculum development elsewhere. The NHS executive is currently looking at suitable ways in which to do that. In addition, as a result of a meeting between the Minister of State, my hon. Friend the Member for Southampton, Itchen, and the Down's Syndrome Association, we have provided support for new website work that is being developed by the association because we must ensure that all clinical staff involved in the care of babies with Down's syndrome are aware of the health problems commonly associated with the condition, so that they can be picked up at an early stage.
I have mentioned other measures that we are taking to improve the recognition of wider health needs, but the work being carried out by the Down's Syndrome Association, supported by the Department of Health, to develop interactive web-based training is aimed specifically at raising the awareness of the condition among medical students. That is an important step forward.
17WH The Hon Member for Portsmouth South (Mr. Hancock) spoke about the importance of promoting independence, opportunities for work and education and developing full potential. Clearly, that is vital for people with Down's syndrome and for all people with learning disabilities. Opportunities should exist for everyone, whatever their circumstances. He also raised the issue of supporting older people with Down's syndrome. I wholeheartedly agree with him on that; it is another of the issues being considered in relation to the learning disability strategy.
§ Mr. HancockThe Minister has made great play of the part that the strategy will play. Many people outside this Chamber will be interested to know when it will be published, when and if any associated action plan will materialise, and whether it will be resourced in such a way that it will be deliverable.
§ Yvette CooperThe approximate timetable for the plan, which was launched at the end of last year, is to conclude its work and publicise the new strategy towards the end of this year. Clearly, the strategy must be deliverable. I cannot, at this stage, provide details of the content and form that it will take, because work is still under way, including in the sub-groups.
The hon. Member for Meriden (Mrs. Spelman) asked about enforcement mechanisms, and how to ensure that guidance is properly followed. Clearly, we must consider how to monitor the implementation of the strategy. That raises a broader question of how to spread best practice across the NHS in many different fields, which has been given detailed consideration as part of the development of the national plan, not just in this area but across the board. It is important to spread best practice rapidly, rather than in isolated examples.
My hon. Friend the Member for Eccles (Mr. Stewart) and the hon. Member for Romsey (Sandra Gidley) referred to communications skills in relation to training for the medical profession. That is already part of the guidance in "Signposts for Success" and "Once a Day", and must be reinforced in the additional guidelines for in-patient and out-patient staff. More work will be necessary, as part of the strategy, to make that difference.
I shall touch briefly on some more general issues in relation to helping Down's syndrome children and their families. They will benefit from initiatives to improve the services available for those with learning disabilities. Following a baby's birth, all children with Down's syndrome and their families must have a named health visitor. They should receive support from that health 18WH visitor, who, along with the family's GP, will be the main source of support and referral to other agencies. The primary health care team should offer the child health surveillance and a screening programme as agreed locally, and should work closely with the local community child health service to ensure that a care plan for child and family is properly formulated. In some cases, the child and family will be referred to a child development centre for a fuller assessment of their needs. That will provide a single door for multi-agency assessments to be carried out by health, social services and education staff. Clearly, there are implications not only for health services but across the board.
The Department of Health guidance, "Welfare of Children and Young People in Hospital", recognises and promotes the cardinal principle behind treatment—to provide support for the child as a whole and not simply for the condition for which treatment or care is required. The guidance acknowledges that children with disabilities who need hospital admission are doubly disadvantaged. Health service providers are therefore advised to ensure that facilities, procedures and staff can cope with the special needs of children with a physical, intellectual, sensory or communication disability.
We also recognise the need to provide for specialist staff training and orientation, which is reflected in the use of the court budget funding. The purpose of that budget is to stimulate training initiatives for child care health professionals. That is the source of the support for the Down's Syndrome Association. Through that support, we produced a template for the correct approach to families with a disabled child. It provided standards against which services could judge their performance, and was included in the Department's guidance document for health services in the community.
Considerable work has been carried out on this important subject, but we know that there is much more still to do. I congratulate my hon. Friend the Member for Bolton, South-East on bringing the issue before Parliament, raising public awareness and working with the DSA to provide proper information about the difficulties often faced by Down's syndrome sufferers—adults and children—and their families. We are committed to supporting such action. We have much work to do across the NHS, with the voluntary associations, and with all those who believe that discrimination is completely unacceptable in our health services.
§ Sitting suspended.