§ Mrs. Angela Browning (Tiverton and Honiton) (Con)
I am pleased to see the Under-Secretary of State for Health, the hon. Member for South Thanet (Dr. Ladyman) in his place in what is becoming an almost annual occasion, for which I make no apology. You will recall, Mr. Deputy Speaker, that I secured a debate on Asperger's syndrome on 10 September 2003 to discuss the impact on adults and adolescents who had been misdiagnosed by psychiatrists, particularly provincial psychiatrists, who confused their autistic behaviour with schizophrenia. They were the, to their detriment, treated as schizophrenics, with all the drugs that that treatment involves. Difficulties then arose in managing their lives, and damage was done.
To set the scene, I shall repeat something that I said at the beginning of my speech last year because it is still relevant to today's debate: very few provincial psychiatrists have been trained in either the diagnosis or the management of Asperger's syndrome; even fewer have gained the necessary experience in their working lives to be able to differentiate between a mental health condition and what many of us would regard as normal autistic behaviour, which sometimes even professional psychiatrists might well interpret as something quite different.
Very few psychiatrists in this country have the expertise to differentiate between autism and schizophrenia, and yet, day after day, people with Asperger's syndrome are admitted to mental health hospitals and are diagnosed and treated by people with that lack of experience. I want to build on that point this afternoon because it is still as much a problem today as it was when I raised the matter last year. Indeed, my hon. Friend the Member for Aylesbury (Mr. Lidington), who is sitting next to me, told the House on 30 April of the tragic case of his constituent, Mr. Piers Bolduc, a young man with Asperger's syndrome who had been diagnosed quite mistakenly as schizophrenic and who had been in Broadmoor hospital for 10 years. As a result of my hon. Friend's intervention—I know that the Minister is familiar with this case—Piers was moved to the Hayes unit, which is a much more appropriate placement for him. With permission, I shall read part of a fax that his mother sent to me this morning when she saw that the debate was going to take place. She wrote:After one month there he is doing his laundry, helping on kitchen cleaning duties, hoovering, kicked a football about outside, played scrabble, monopoly and chess and has even made some design patterns on the computer…In Broadmoor he just shuffled from his windowless bedroom to the dayroom and tried to keep himself safe for ten years.That sums up what can be done for adults with Asperger's syndrome when they are given the appropriate help, support and treatment, but it also signifies the desperate vulnerability of these people and the damage done to them when their condition is not recognised by medical professionals.
I singled out provincial psychiatrists, but I now want to discuss some of the other problems that psychiatrists acting in various areas of life are causing and that are 309WH affecting adults with Asperger's syndrome. This is not just a question of health. People with Asperger's syndrome get caught up in the court system and find themselves in prison. They also become involved in tribunals fighting for benefits or for appropriate packages of support. I particularly want to mention the case of Mr. X. It would not be appropriate to name him because his case is likely to come before the courts.
Mr. X is a married man with Asperger's syndrome who ran his own business and fell foul of the Court of Protection and other parts of our legal system. As a result, a psychiatrist attempted to pass an opinion on Asperger's syndrome without understanding the condition and without a working knowledge of the specialism. I advised the spouse of Mr. X to inquire about the background and qualifications of that psychiatrist who was appearing as an expert witness against him. When pressed, the psychiatrist withdrew because it became quite clear that he had no expertise in Asperger's syndrome at all, yet he was identified as someone who was available at huge remuneration to himself to appear as an expert witness in legal cases. That, too, gives cause for concern.
These are serious matters. These are life-changing circumstances that affect people with Asperger's syndrome. I particularly want to raise my concern about the medical professionals who put themselves forward in court cases as expert witnesses against the person with Asperger's, causing havoc to their lives and infringing their human rights. We have already a classic example of what happens when so-called medical experts put themselves forward as expert witnesses without the proper qualification and validity in the cases of Munchausen's syndrome with which the Minister will be familiar. This is an area in which he should be personally involved. He should talk to the health bodies to ensure that we do not have these people who quite clearly see a lucrative future for themselves, but a future that is bleak for the person against whom they speak.
§ Mr. David Lidington (Aylesbury) (Con)
Would my hon. Friend agree that not only is there a duty on the Minister to take action in order to prevent the sort of case she describes, but that the precedent of Munchausen's syndrome should stir the Government into carrying out a review of the cases of misdiagnosis which everyone agrees have taken place in recent years? There are still people who have suffered the same fate as my constituent Mr. Bolduc and are still in secure mental hospitals as a result of misdiagnosis and mistreatment.
§ Mrs. Browning
Indeed, Mr. Deputy Speaker. I do not want to repeat much of what I said last September. My hon. Friend has identified how we simply do not know how many cases of misdiagnosis there are. These cases are purely anecdotal at present, but as all those of us who take an interest in this subject have discovered, they are too frequent simply to be odd cases. Every odd case is bad enough in itself but there are just too many of them.
§ Liz Blackman
Alongside the recommendation that both hon. Members have made, would the hon. Lady 310WH not agree that we need more dialogue with the Royal College of Psychiatrists to ensure that expertise and capacity are properly increased during psychiatric training?
§ Mrs. Browning
I certainly agree. When the Minister replies, I hope that he will give us the assurances that we seek about his Department's involvement with the royal colleges to set out a blueprint for how we take this forward. We cannot leave this lying on the table any longer. That is why, for the second time in a year, I bring this subject to the attention of the Chamber. I would like to run through one or two of the issues that I have raised in the last year with the Minister, both in correspondence and written questions.
Two things are in the back of my mind. The first is the Mental Health Bill, which was published today and on whose scrutiny Committee I will serve. The second is the Mental Capacity Bill, which has had its First Reading and will proceed through the House. We are in the process of making changes to the way that people who lack capacity are represented. On the mental health front, it fills me with horror to think that we are still dealing with misdiagnosis, yet the Mental Health Bill will give professionals even more draconian powers to exert on people. I have no confidence that, uniformly throughout this country, there are psychiatrists who, as yet, can even differentiate between schizophrenia and Asperger's. How will they deal with personality disorder, another rather nebulous condition, which even the professionals admit is a spectrum?
I want to raise another issue with the Minister. In June, I tabled the following written question:To ask the Secretary of State for Health what assessment his Department has made of the appropriate qualifications and experience required of psychiatrists treating (a) in-patients and (b) out-patients who have an autistic spectrum disorder.The Minister replied:None. This is a professional matter. It is the responsibility of the Royal College of Psychiatrists.I know that officials draft such replies in all good faith, but the Minister has a detailed understanding and knowledge of autism. I put it to him that his Department should speak to the royal college, because such an assessment is desperately needed.
I tabled other questions on that same day and I am sure that they are in the Minister's folder. I apologise if I am becoming autistic in my behaviour, but I make no apologies for the fact that this is becoming an obsessive subject for me. I hope that he will see this as an opportunity to sort out my questions so as not to have to repeat his answers next year. I asked,what assessment his Department has made of the number of people with Asperger's syndrome who are misdiagnosed as schizophrenic.Again, he replied:None. Where people have Asperger's syndrome or any other form of autistic spectrum disorder, it is important to distinguish behaviours due to their autism from any that might be attributable to a mental health problem".—[Official Report, 15 June 2004; Vol. 422, c. 892W.]As I have already made clear in previous debates, like any other member of society, somebody with autism can develop a mental health problem—depression is a common problem. However, being misdiagnosed with 311WH schizophrenia is a very serious matter. I beg him to take another look at the issue. It should not be left to medical professionals. Direction is needed. There must be a strategy to deal with the problem; we cannot keep leaving it.
On the question of expert witnesses, I tabled a question to the Home Office askingwhat criteria are set for doctors and psychiatrists who offer themselves as expert witnesses on autistic spectrum disorders.The Under-Secretary of State for the Home Department, the hon. Member for Wythenshawe and Sale, East (Paul Goggins) sent me a long reply and I will not repeat all of it. However, he said:The decision whether or not to allow the evidence of an expert witness to be admitted rests with the court, which must be satisfied that the material comes within a recognized field of expertise and that the witness is indeed an expert in that field."—[Official Report, 18 June 2004; Vol. 422, c. 1157W.]As it happened, in the case of Mr. X, it was not the court that made a judgment about the doctor's eligibility and qualification. Judgment was made because, out of the blue, I suggested to the wife that she make inquiries.
I have seen correspondence with the royal college and it is not satisfactory for somebody to self-nominate in such cases. That is a cross-departmental matter that needs to be examined carefully by all sections of Government. It should not be left to the old boy network—the Minister will know what I mean by that. A chum in the hospital should not be able to nominate or second someone to be an expert witness.
In this country, we have some very good, although too few, psychiatrists. It would be invidious to name them, but many here know who they are. They are excellent psychiatrists and experts in autism, particularly Asperger's syndrome. We cannot go on praying in aid that the syndrome is difficult to diagnose. However complex the case, it is difficult only if the person trying to diagnose an adult does not have a life's working experience and is unable to untangle those symptoms that might present as some form of mental health disorder but are in fact symptomatic of somebody with autism and not just mental illness. I must emphasise that autism is not a mental illness. In the case of Mr. X, a very concerning comment was made by a Lord Chancellor's visitor—a retired psychiatrist employed by the Court of Protection—who wrote an opinion stating that the person concerned suffered from mental disorder, namely Asperger's syndrome. Asperger's syndrome is not a mental disorder under the Mental Health Act 1983. It is critical that the matter be dealt with—not just left to the royal colleges—and that the Government take a hands-on approach with the royal colleges on some of the suggestions that I humbly made in my approach to the Minister last September.
For example, when psychiatrists in provincial hospitals, who genuinely do not have a working knowledge of Asperger's syndrome, are presented with either an in-patient or an out-patient, there is no reason why, as in other medical disciplines, they should not have an list of authorised people with expertise from whom to obtain a second opinion. They could, at least, pick up the phone and share the case with a recognised expert—such people are genuinely out there.
312WH However complex the case—some cases become very complex indeed when adults with Asperger's syndrome fall foul of the criminal justice system and of in-patient mental health services in the provinces—all that is required is a structure that obliges non-specialists to make contact with a specialist and to get a second opinion and guidance as to how to manage and treat the case. That is not unreasonable, and it should not require loads of money. I am not asking for a hike in the budget, or telling the Minister to go to the Chancellor to ask for umpteen more pounds for his Department; it can be achieved at minimal cost. That is why it is so sad that it is not being done. I hope that the Minister will give me the reassurances that I seek, because we have made no progress in the past year. I hope that all of us can work together before next September to make sure that I do not have to stand here again and repeat bits of this year's speech because no progress has been made.
§ The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)
The hon. Member for Tiverton and Honiton (Mrs. Browning) has again shown herself to be a true champion of people with Asperger's syndrome and autistic spectrum disorders. I pay tribute to her energy and will be very happy to come back to answer her annual Adjournment debates on the subject if for no other reason than that it will mean I have survived not only reshuffle week but the general election that might intervene between now and next September. The hon. Lady knows that I share her wish to improve the life experience of people with autistic spectrum disorders.
In recent years we have made significant progress. It might seem as though we have not made as much progress as the hon. Lady would wish in the area on which she has concentrated today, but she might find some messages of comfort later in my speech. A week today, with the national service framework for children, we will launch the next step in improving the life chances of autistic people. That will include an exemplar for autism, and I think she will find a great deal to be pleased about in that document. I am sure that the all-party group chaired by my hon. Friend the Member for Erewash (Liz Blackman) will find a great deal in it to be pleased about as well.
As the hon. Lady said, some aspects of service provision for people with higher-functioning forms of autism require a specific understanding of the conditions. We need to do all we can to ensure that those with responsibilities for service delivery have that understanding, and that it is shared outside the specialist health and social care services—across housing, employment, leisure, the police and the court services—as has been so eloquently pointed out.
Asperger's syndrome is a developmental disorder on the autistic spectrum, and there is wide variation in the social adaptation of people with the syndrome in adolescence and adulthood. As a result, it is often difficult to identify the best way of supporting each individual. Those who need health or social services sometimes find themselves less than ideally served by learning disability or mental health services; I recognise that they often fall between them. Next week's national service framework will have something to say about that aspect of the care system.
313WH This afternoon's debate is specifically about services for adults with Asperger's syndrome, and I fully acknowledge that those are not as well developed as I would like. It is clearly the responsibility of government, nationally and locally, to ensure that good, effective support services are in place. It is important that people with Asperger's and other forms of high-functioning autism should get their fair share of resources and services, according to need.
In her Adjournment debate last September on the mental health issues affecting people with Asperger's, the hon. Lady raised the issue of professional education in autism for psychiatrists. She has mentioned her concerns again today, with particular reference to provincial psychiatrists and others. She said that the matter needs leadership from the Department of Health. By instinct, I am a bossy boots, and I would be prepared to order people from the Department of Health about in all sorts of ways that are not fashionable these days. However, we have devolved responsibilities, and leave professional standards and training to the royal colleges. That does not mean to say that we do not talk to them, or that we do not express our concerns and engage in conversations with them. However, we do not do so in a Stalinistic way, or order them to take steps.
The matter is one for the Royal College of Psychiatrists, which recognises that psychiatrists in every area of psychiatry need specific training in autism, to raise their awareness of issues such as consent, capacity, mental health legislation, diagnosis and treatment. It also recognises that although psychiatrists should have such training, not all of them do at the moment. It is particularly conscious of the problems of overlapping diagnosis and misdiagnosis that the hon. Lady identified. I am pleased to be able to tell her that it has set up a working group to consider psychiatrist services for adolescents and adults with autistic spectrum disorders. The group's report is awaited, and I understand that it will include a discussion about the training of psychiatrists in that field.
That is not all that the Royal College of Psychiatrists has done to increase its members' awareness of autism: it has already made it a requirement that all trainee psychiatrists do six months of developmental psychiatry in either learning disability or child adolescent psychiatry before they can go on to higher level specialisation. That will ensure that they have at least some exposure to people on the autistic spectrum before becoming consultants. No doubt the hon. Lady will want to see more intensive exposure to autistic spectrum disorders than is currently the case, and I hope that the report being produced will take us there.
§ Mrs. Browning
The Minister will know that the diagnosis of an adult, as opposed to a child, is complex. We have seen a lot of progress in child diagnosis, but many more complex cases require someone who has a specialism and whose working life is dedicated to working with autism. I appreciate what he is saying, but only such long-term expertise allows people to get an accurate diagnosis. That is why I like my idea of referrals—I hope that the Minister will listen carefully to it again. People who specialise in coronary heart disease obtain, in many complex cases, a second opinion from 314WH an expert who concentrates on that aspect of the spectrum. I hope that the Minister will take that on board.
§ Dr. Ladyman
That is a very helpful suggestion, and I shall ensure that my officials consider it and pass it on to the Royal College for inclusion in its report.
The hon. Lady and the hon. Member for Aylesbury (Mr. Lidington) spoke about expert witnesses, and I am delighted that Piers Bolduck is now receiving the treatment that he should have got some time ago, and to hear from his mother that he is now thriving. Long may that continue. We are aware of the expert witness problem, and I freely admit that we became aware of it because of the issues of child pathology and Munchhausen syndrome. However, the hon. Lady and the hon. Gentleman may remember that just before the recess, my right hon. Friend the Minister for Children and I issued a written statement saying that we had asked the chief medical officer to set up a review group into expert witnesses, which would consider their training, selection and preparation for giving evidence in court. Although our primary focus in setting that up were the sad issues relating to children, it is intended to be a general review of expert witnesses. I shall ensure that the comments made in today's debate are passed on to the chief medical officer so that they can be taken into account in that review.
Although the hon. Lady may say that we have not made any progress since she raised the issue last September, I hope she will acknowledge that there has been some, although perhaps not so obvious as she would have liked. There is still a heck of a long way to go before the work is completed.
We have also been doing other work. Work has been completed on a project called "Green Light: How Good Are Your Mental Health Services for People with Learning Disabilities?", which was commissioned by the National Institute for Mental Health in England and the Valuing People support team. It is a guide to developing good services to meet the mental health needs of people with learning disabilities. Although people with a diagnosis of Asperger's syndrome do not always have a learning disability—or, at least, not what is traditionally understood by a learning disability—we ensured that that work addressed the importance of seeking an expert opinion when a person with mental health problems has any form of autistic spectrum disorder. If the hon. Lady is interested in following that up, the information can be found on the Valuing People support team's website.
In addition, the Department of Health has started some work for those with responsibility for developing more specialised tertiary services for people with a learning disability and a mental disorder. That work is being led by Professor Louis Appleby, the national director for mental health. Points made in this debate and in the recent Adjournment debates on Asperger's syndrome will be fed into that work, and a report on Asperger's is expected early next year.
The hon. Lady mentioned a couple of pieces of legislation that concerned her. I am delighted to hear that she will be on the pre-legislative scrutiny committee for the Mental Health Bill. That joint scrutiny committee has just been established and has been asked to present its report by the end of March 2005. 315WH It provides an important opportunity for stakeholders to have an input into developing an effective and fair piece of legislation.
The revised Mental Health Bill represents the first major overhaul of the legislation since the 1950s and is an integral part of the Government's wider strategy to improve mental health services for all, along with substantially increased investment and the reform of service development. It will be an important piece of work although no doubt controversial, and many debates will be had before it finally starts to make its way through Parliament. However, the committee will have the benefit of the hon. Lady's expertise from her interest in Asperger's.
The hon. Lady also mentioned the Mental Capacity Bill, which was introduced to Parliament on 17 June. It will help to bring about a cultural shift in the way in which we treat people who lack capacity, and will include provision for those with autistic spectrum disorders. The Bill sets out the key principles to be taken into consideration in making decisions for people who lack capacity. It starts from the presumption of capacity—everyone is assumed to have the capacity to make decisions—and places an obligation on the decision maker to take all practicable steps to help the person make a decision. It sets out a functional test of capacity—capacity must be assessed in relation to the decision to be taken. All decisions taken must be in the best interests of the person concerned, and the Bill sets out a checklist of factors to be considered in determining those best interests. It stipulates that the decision should involve the least restrictive action.
The Mental Capacity Bill will increase the expectation that decision makers such as clinicians should take into account the wishes, feelings and values of people who lack capacity. The Bill provides a new safeguard—the independent consultee—for people who are particularly vulnerable because they have no friends or relatives. The decision maker must consult the independent consultee about serious medical treatments and decisions about long-term care. However, I entirely accept the point made by the hon. Lady that experts who are involved in that process must be genuine experts. We must ensure that they have the training necessary to give proper advice to the courts and to the individuals concerned.
Mr. Deputy Speaker
Order. We were due to commence the final time-allocated topic for today's consideration at this point. However, as the Division bell is ringing, I propose to suspend the sitting for 15 minutes.
Sitting suspended for a Division in the House.