HC Deb 10 September 2003 vol 410 cc437-44

Motion made, and Question proposed, That this House do now adjourn.—[Joan Ryan.]

7.15 pm
Mrs. Angela Browning (Tiverton and Honiton)

On 23 October 2001, I introduced an Adjournment debate on Asperger's syndrome and autistic spectrum disorder. I am delighted that the Under-Secretary of State for Health, the hon. Member for South Thanet (Dr. Ladyman), is on the Treasury Bench, as he also attended that debate. At the time, he was chairman of the all-party group on autism and I cannot think of a better person, one with as much experience and knowledge of the subject, to respond to the debate.

I want to move on from that debate in 2001 and focus especially on Asperger's syndrome and mental health services. Although many symptoms of autism are present in people diagnosed with Asperger's, there is a difference, as such people generally have good language skills and may be of average or high intelligence. However, they demonstrate many of the traits associated with autism, which results in communication problems and, sometimes, ritualistic behaviour. They can experience difficulty in social relationships, causing a sense of isolation, especially in adolescents and adults.

Too few appropriate packages of support are available and they can often be obtained only when there is a crisis. However, where health and social services work together, especially with agencies that specialise in the management of autism, the results can be good, not least because stress and anxiety are reduced, thus reducing the patient's mental health needs and an unacceptably high suicide rate among that group.

Although the causes of Asperger's syndrome and autism have yet to be positively identified, research to date shows that they are related to a physical dysfunction of the brain that may have more than one cause, including a genetic base. What Asperger's is not is an illness, nor are the behavioural symptoms exhibited by people with the syndrome caused by psychosis.

Management of the condition is best addressed by individually tailored packages of support. They will not cure the condition—it is lifelong—but they will vastly improve the quality of life for the sufferer and maximise their opportunities for living independently. We are talking about a vulnerable group of people, who have a strange mix of abilities, which can mask characteristics that may include obsessive behaviour and lack of imagination, resulting in their not being streetwise, yet can be coupled with a range of educational abilities, up to degree level and beyond.

Behaviour may be challenging, especially if routines are interrupted or the individual is faced with unexpected changes, such as a break with a familiar environment or people. People with the condition can be quirky at best and, at worst, threatening to those who are not familiar with their behaviour. Such behaviour is almost always triggered by events rather than an emotional response. It is in that context that I shall focus on adults and adolescents who, under stress and perhaps presenting strange or challenging behaviour, find themselves in contact with mental health services, especially in-patient treatment.

It is true, of course, that people with Asperger's can become mentally ill, as with any other person. Indeed, depression is particularly common in that group. As I pointed out in my debate in 2001, apart from any physiological reason, such as low serotonin levels in the body, it is not rocket science to understand why, by adulthood, people with Asperger's syndrome—desperate for the social and employment opportunities in which they see their peer group participating, but finding themselves friendless, locked out and socially isolated because of their inability to relate to other people—start to become depressed and demonstrate behaviour that, frankly, is quite obvious to those who study the condition and understand it. Who among us would not become depressed if we had tried so hard, as many with Asperger's do, to normalize—for want of a better word—our behaviour only to find that we cannot break through the glass wall that divides us from the rest of society?

Given my work with autism charities and in assisting those who seek to improve the lives of those in the Asperger's group, I feel prompted to raise the issue again in the House because of the pattern of treatment that has clearly developed throughout this country, particularly in provincial mental health hospitals. Very few provincial psychiatrists have been trained in either the diagnosis or management of Asperger's syndrome and even fewer have gained the experience, as part of their working lives, to be able to distinguish between a mental health condition and what many of us regard as normal autistic behaviour, which even professional psychiatrists may well interpret as something quite different.

A level of expertise is required. For example, if someone with Asperger's develops symptoms of schizophrenia, very few psychiatrists in this country have the expertise to differentiate between autistic symptoms and a genuine case of schizophrenia. Yet, day after day, people with Asperger's syndrome are admitted to mental health hospitals and find themselves being diagnosed and treated by people with that lack of experience. So they fall foul—I use that phrase quite deliberately—of the mental health services, as inpatients. They are often sectioned under existing mental health legislation.

All too frequently around the country, we find that those in that group are being treated in a way that would not be tolerated in any other part of health care. It is all too common for psychiatrists even to ignore an existing diagnosis of Asperger's syndrome. That is astonishing. One professional has made a diagnosis, yet all too often another professional, who is responsible for caring for the person with Asperger's, refuses to accept the diagnosis. Behavioural symptoms are not recognised as normal autistic behaviour. They are often treated with strong drugs that have little or no effect on the symptoms, but in themselves cause yet another problem for those with Asperger's. When a drug does not work, psychiatrists work their way through the prescribing lists, building a cocktail of medication that fails to address the symptoms. Why should it address the symptoms if the underlying cause is physiological?

It is common for people with Asperger's to be misdiagnosed as schizophrenic and given medication on that basis. Many of those cases result in long hospital stays, with all the damage of long-term neuroleptic drugs, the effect of which needs to be addressed. I know that I need not emphasise this to the Minister, but those are not isolated cases. The problem is becoming increasingly common, even in the casework that Members of Parliament have to take up on behalf of our constituents. The Minister will be aware that we have held meetings in the House with the carers of people who have been treated in that way, so we know of the absolute distress and pressure on those carers.

Liz Blackman (Erewash)

Does not what the hon. Lady is saying point to the fundamental requirement for multi-disciplinary teams to be set up early for autistic young people, including those with Asperger's syndrome?

Mrs. Browning

The hon. Lady has a great deal of knowledge and experience of this subject, and I agree with her. It is necessary for the professionals—the multidisciplinary teams that she talks about—to become actively involved at an early stage in the management of the case. If that worked everywhere—it works in some places—we would not see so many of these people coming under the auspices of the mental health services in the first place.

When those carers try to make representations and to be advocates on behalf of their adult children or—if they are not relatives—on behalf of the in-patient, the health professionals all too often simply will not listen to them. The House will be aware of a high-profile case that has gone to court and is still pending—R v. Bournewood Community and Mental Health NHS trust. I have the carers' permission to quote their experience. They told me personally that when they tried to become involved, they were described by the psychiatrist as "uncooperative". When they pressed further, the term "abusive" was applied to describe them as carers. Finally, when, at their wits' end, they tried to explain to these so-called professionals how this person actually behaved because of his autism, it was suggested that they had mental health problems themselves. That is outrageous. Their knowledge of the individual concerned and the way that he behaved was key to his management and treatment, yet it was not wanted by the psychiatrist. That is an example of arrogance—not of all psychiatrists, as we could all name some who are doing a jolly good job in this area—that should not be tolerated.

Most of the damage done to in-patients will occur in the first four to six weeks, through a combination of inappropriate medication, finding themselves in an environment that exacerbates their difficulties in managing their behaviour, and through carers and parents being resisted by professionals and given the minimum amount of access. That cannot be tolerated. I therefore urge the Minister to introduce the following measures as a matter of urgency.

First, unless a psychiatrist has received an accredited training course and has a recognised working knowledge of the treatment of Asperger's syndrome and autism, a second opinion on the treatment and management of that individual patient must be sought from another professional who has that expertise as an input to the case. Secondly, the Department of Health should set up an immediate investigation into the number of adolescents and adults with an Asperger's syndrome diagnosis who have also been treated for schizophrenia, as we should know how many of these people are being misdiagnosed and mismedicated. When an undiagnosed adult is suspected of having Asperger's syndrome, a referral must be made to a professional who has experience of autism. Diagnosis of adults cannot be learned from a textbook. It takes years of work. It is much more complex than the diagnosis of children, and there are people who have reached their 20s, 30s, 40s and even 50s before being diagnosed, as other factors must be looked for. That requires a huge level of expertise.

Paul Flynn (Newport, West)

I congratulate the hon. Lady on securing this debate on an important subject. The doubts that she has raised about the effects of neuroleptic drugs have been experienced by a large number of people in residential homes for the elderly and by many women in prison. Will a call for such an investigation include a general investigation of the effects of neuroleptic drugs among many other people?

Mrs. Browning

I would not disagree with that at all. We all have concern about this area, and we would like to know much more about it. I know that the hon. Gentleman has knowledge of this area, and I would certainly like to know more.

On my list of what I would like the Minister urgently to consider is the requirement for all primary care trusts to identify their autism and Asperger's professionals for in-patient care and community care—from community psychiatric nurse level to consultants in hospitals—and to implement a structured training and accreditation programme. They should also draw up a referral list, even if it is out of area, so that those people who do not have the expertise know of a professional on whom they can call for case-by-case referral.

If I need an operation for a broken leg, I would expect an orthopaedic surgeon to deal with it. If I were admitted to hospital with a heart condition, I would not expect to be medicated for some other condition. It seems that psychiatrists are laws unto themselves. There is an ignorance and an arrogance that permeates their approach to Asperger's syndrome that is all too common.

In the advice to carers, many of us who are involved in dealing with individual casework, including Members, are not prepared to accept the status quo. It is becoming more common for cases to be tested in the courts. I believe that many more cases will be so tested if the situation is allowed to continue. It is criminal.

I have many files of heart-rending casework. I will not quote from them because I know that those Members who are in their places will have had to deal with such casework in their constituencies. I know that they will understand the heart break for the individual and their carers when they come up against a system that treats them in this way. It is leading to family breakdown, where increasingly ageing parents and carers bear the strain of lack of provision, of failure to diagnose or even a failure to recognise diagnosis on the part of other professionals. In some cases, this has led to permanent damage caused by inappropriate medication.

I can think of no other area of health care where this situation would be permitted. These patients are the least able to self-advocate, yet the people who could advocate for them—their immediate carers—are sidelined. It is cruel and it is unjust, and it must stop.

7.32 pm
The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)

It is a great pleasure for me—I know that Ministers always say that when they come to the Dispatch Box to respond to Adjournment debates, but on this occasion it is truer than usual—to respond and to congratulate the hon. Member for Tiverton and Honiton (Mrs. Browning) on raising the issue again. I know that we are not allowed to refer to Opposition Members as right hon. or hon. Friends, but on this subject I would like to think of the hon. Lady in that way. She has made many constructive suggestions, while speaking with much feeling and compassion.

Becoming a Minister was a joy for me. The one thing that I regretted, however, was that I had to give up chairing the all-party group on autism. The only consolation is that my hon. Friend the Member for Erewash (Liz Blackman) has agreed to take over. I look forward to working with her and the rest of the group in my new capacity.

In one fell swoop, I moved from being Chairman of the all-party group on autism to Minister with responsibilities for autism. Although I hope to move the agenda forward as aggressively as possible, I have been a Minister for slightly fewer than 100 days, so I am not yet in a position to make all the decisions that I would like to make, nor to understand all the ramifications of the things that I would like to do in this context. I know that the hon. Lady will accept that I shall reflect deeply on her comments and shall do my best to implement some of her constructive ideas, and that she will not expect me to commit myself this evening.

As we all know, autism is a complex and distressing condition, not only for those affected by it, but for their families and carers. The hon. Lady was right to emphasise the role of carers, in terms not only of what they contribute to the person with autism, but of their responsibility and their opportunity to help advocate on behalf of autistic people. That is something that we forget when reflecting on the contribution of carers. I wanted to acknowledge that now before I move on any further. I shall certainly look at opportunities to help carers. My portfolio includes all long-term conditions, and I am well aware of the role of carers in all such conditions. I shall take on board the hon. Lady's comments—I am well aware that autistic people often need their carers to be advocates on their behalf.

Asperger's syndrome, as the hon. Lady said, is a developmental disorder on the autistic spectrum, and is a social disability rather than an illness. In the context of tonight's debate, we need to emphasise the fact that people on the autistic spectrum are more likely than the rest of the population to have a mental health problem that needs to be addressed. The hon. Lady highlighted two issues. First, problems arise when a condition on the autistic spectrum is confused with a mental illness, leading to someone being treated for mental illness. However, because they are autistic, the treatment will have no effect and will be entirely inappropriate. Indeed, it may be distressing and damaging, and will not help the autistic person because the things that need to be done to help them are not being done.

Secondly, when an autistic person has a separate mental condition, we need to make sure that that is recognised and treated. Let me make something clear for the record: if someone in the primary care system or social services believes that an autistic person may have a mental illness, they can be referred to mental health services, and must be assessed and treated for it in the same way as anybody else. People should not sit in their office thinking, "This person's autistic—I cannot refer them to mental health services." If there is any reason to believe that someone has a mental health condition, they should be referred to mental health services because they are entitled to treatment for that condition, as long as the assessment is made, as the hon. Lady pointed out, by people who are skilled in recognising autism as well as the mental health condition.

The hon. Lady asked how I shall ensure that that is done, and I have to reflect on that. If I were to introduce regulations—my hon. Friend the Member for Erewash pointed this out eloquently in her intervention—that may affect the multidisciplinary teams that need to be set up. I might regulate in a way that hampered the setting-up of those multidisciplinary teams. We may not want to make it mandatory for an autistic person to be seen by someone who is skilled in the treatment of autistic conditions. We may want them to be seen by a multidisciplinary team that includes expertise in autism, rather than by a psychiatrist who has training in autism and mental health issues. I shall reflect on the way in which we can best achieve that, and whether or not regulation is appropriate. I shall reflect on how we make sure that we distinguish between autism and the mental health issue, and how we make sure that we are going the right way about identifying mental health issues.

The appropriateness of medication is a related issue, and my hon. Friend the Member for Newport, West (Paul Flynn) is right that if people are treated with drugs—I am not a clinical professional, so I am not in a position to judge whether drugs are appropriate or not—we must remember that they have side effects. We must make sure that the right drugs are used at the right time. If the autistic spectrum disorder has been confused with a mental health issue, the autistic person may well be getting drugs that are entirely inappropriate, with distressing results for both them and their carers.

An important time for interventions that may prevent serious mental health issues from developing in adulthood is childhood and adolescence. The standards and targets that we are setting in the forthcoming children's national service framework are intended to help improve services for disabled children, including those with autism. The hon. Lady will be aware that the national service framework for children will include an autism exemplar. We will be developing national standards across the national health service, social care and the interface with education. That will relate to the way in which we handle autistic people and how they are referred for services.

The NSF will include pathways and exemplar diagrams illustrating the optimum approaches to delivering services in a number of different areas. The all-party parliamentary group on autism sponsored the national initiative on autism screening and assessment report, which is now called the national autism plan for children. That will form an important part of the package of care that we shall build to address issues relating to children with autism.

We must recognise that children with autism, whether or not they have a learning disability, are more vulnerable to a full range of mental health disorders, both as a result of their underlying neurological dysfunction and the additional social, family and emotional stresses of everyday life. The child and adolescent mental health services see children and young people with autism who also have mental health problems. As the hon. Lady said, however, specialist care from CAMHS professionals with expertise in learning disability, autism and child and adolescent mental health problems are in very short supply.

As we are aware of the shortcomings of existing provision, the Department published an outline of a comprehensive CAMHS in the "Emerging Findings" document for the children's national service framework. The requirement to develop a comprehensive service was also set out in the CAMHS 2003 circular to health services and local authorities, which was published on 17 January this year. "Emerging Findings" requires a comprehensive service to take account of the full range of needs locally, including those arising from a learning disability or from autistic spectrum disorders. Each local CAMHS development strategy should outline progress towards the establishment of a comprehensive service and refer to children with an autistic spectrum disorder.

The Department's public service agreement targets set an agenda to improve significantly the services for children and young people with mental health problems. The specific target is to: Improve life outcomes of adults and children with mental health problems through year on year improvements in access to crisis and CAMHS services; and reduce the mortality rate from suicide and undetermined injury by at least 20 per cent. by 2010. The priorities and planning framework capacity assumptions underpinning that target are that all CAMHS are to provide a comprehensive service, including mental health promotion and early intervention, by 2006; and that all CAMHS will be increased by at least 10 per cent. a year across the service in accordance with agreed local priorities. To support those challenges, the Government will invest an additional £250 million in CAMHS provided by local authorities and the national health service.

On adult mental health services, it would be naïve to believe that success in improving CAMHS will remove the need for services for adults with Asperger's syndrome and mental health problems. It is also important that we deliver improvements in adult mental health services. When we came to office, we set mental health as a priority for reform, alongside cancer and coronary heart disease. We did so because we believed that the service when we came to power was demoralised and under-supported, and desperately needed to move forward. We had no national standards at that time. Mental health law had been overtaken by developments in services and society. Financial constraints were crippling those with responsibility for providing care, and local services did not have the freedom to make choices that were right for their populations.

The significance of that situation is difficult to overstate. As many as one in six of the population is affected by a mental health problem, and many more families and children are indirectly affected each year. More than 600,000 people with serious mental ill health receive care from specialist mental health and social care services, and suicide is now the commonest cause of death among young men. I am well aware of the suicidal thoughts to which many people with Asperger's syndrome refer in their conversations, letters and writings.

Those are some o the reasons why the Government prioritised mental health service reform. Our national service framework for mental health was the first NSF to be published. It set out seven standards for modern health and social care, covering health promotion, primary care, mental health, specialised services for people with severe mental illness—

The motion having been made after Seven o'clock, and the debate having Continued for half an hour, MR. DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at fifteen minutes to Eight o'clock.