Asperger's Syndrome

HC Deb 30 April 2004 vol 420 cc1182-90

Motion made, and Question proposed, That this House do now adjourn.—[Ms Bridget Prentice.]

2.31 pm

Mr. David Lidington (Aylesbury)

I am grateful for this opportunity to raise the case of Piers Bolduc, the son of my constituents, Eugene and Cris Bolduc, and to press the Government about Mr. Bolduc's case and about some of the wider lessons that we may learn as regards the treatment of people with Asperger's syndrome within our secure mental hospitals.

It is now 10 years since Eugene and Cris Bolduc first came to see me. The case of their son, Piers, is tragic. He is now 28 years old, and he has been detained in secure mental institutions for a decade. His childhood, family and school life seemed normal, although with hindsight, it can be recognised that he showed some of the characteristics typical of Asperger's syndrome, such as finding it hard to socialise with other people.

The real problems for Piers started at about the age of 16, while he was studying for his GCSE examinations. At the age of 17, Piers was first prescribed neuroleptic drugs, which as the Minister will well know, are intended for the treatment of schizophrenia and other comparable mental conditions, and not for the treatment of Asperger's. By this stage, Piers was showing increasing symptoms of confusion and an inability to cope with normal society—classic features of Asperger's syndrome. His ability to cope with life was being made worse by the inappropriate drug treatment that he was being given.

While on a course of this drug treatment, Piers travelled alone to High Wycombe and a violent incident took place in which Piers slashed a young man with a penknife. I do not for one moment, and nor would the family, wish to minimise the importance of this event, and particularly the impact on the victim. It also needs to be recorded that the victim's life was not in danger, although he did need stitches in his back.

Piers was later charged with grievous bodily harm with intent. At a hearing at Reading Crown court, he pleaded not guilty on grounds of insanity. That defence was accepted by the jury and Piers was acquitted and then sectioned under section 41 of the Mental Health Act 1983.

The history thereafter is an unhappy one. Initially, Piers was held on remand at Reading prison. After lobbying from his family, in which they enlisted my support, he was transferred to a private psychiatric unit at Stockton Hall in Yorkshire. There, he was wrongly diagnosed as suffering from schizophrenia and once again injected with drugs that were completely inappropriate to his condition.

According to his parents, Piers was locked in a room for eight months while at Stockton Hall, with only a mattress on the floor rather than a bed. No activities or recreations were provided for him and he had no access to radio or television.

The following year, in June 1995, Piers was transferred to Broadmoor. There, in 1996–97, Dr. Lorna Wing finally diagnosed Asperger's syndrome. Few people would claim that a secure mental hospital is the best environment for the treatment of people with Asperger's. By 2001, Piers's then doctor, Dr. Vermeulen, had told his parents that the hospital wished to transfer Piers to a more appropriate environment where he could finally receive the treatment that would help his condition. In November 2001, Broadmoor began to assess his suitability for transfer to the Eric Shepherd unit in Watford. That transfer proved not to be possible but by 2003 attention was centring on the Hayes unit in Gloucestershire.

It is important to make it clear that the Hayes unit would not, as a matter of principle, have accepted Piers Bolduc as a patient if he had still been considered to be a danger to other people. The fact that the transfer has been in preparation for a number of years indicates a recognition on the part of the NHS, which is responsible for Piers's care, that he no longer appears to pose the threat that he may once have posed.

On 15 December last year, Dr. Julie Hollyman, chief executive of the West London Mental Health NHS Trust—responsible for Broadmoor hospital—wrote to me about the case, saying: I can confirm that it is the clinical opinion that Mr. Bolduc is now ready to move from Broadmoor High Secure Hospital to the Hayes Unit.

On 19 December last year, Mr. Shaun Brogan, chief executive of the Vale of Aylesbury primary care trust, wrote to me that the PCT have committed to Piers' future care after discharge from Broadmoor". So there would appear to be no clinical or financial obstacle to that long overdue transfer, but still the family wait.

My understanding is that the transfer needs to be authorised by the Home Office. The family have been pressing both Broadmoor and the Home Office for that to happen, but it seems that, despite all previous correspondence, Broadmoor did not formally contact the Home Office until March 2004, after considerable pressure from Piers's family. It is known that, as of today, no reply has been received from the Home Secretary's office.

If Piers Bolduc had been convicted of a crime and been disposed of through the criminal justice system, perhaps by way of a custodial sentence, it would have been over years ago and he would rightly have been rehabilitated by now. It is an indication of something seriously amiss with the way in which our country deals with people like Piers Bolduc that, after more than a decade, we should still be talking about this young man, incarcerated in an institution like Broadmoor, having had a history of misdiagnosis and mistreatment. He has been let down badly by the system.

May I ask the Minister a couple of direct questions about Piers's case? Can he confirm that there is no clinical or financial obstacle to Piers's transfer to the Hayes unit? Can he say what progress his Department and the relevant trust have made with the Home Office towards authorising that transfer? Will he undertake to press his colleagues in the Home Office, in view of the history that I have recounted, to deal with the case as swiftly as humanly possible?

This case raises wider questions about the treatment in secure mental hospitals of people with Asperger's syndrome. Piers Bolduc's detention in Broadmoor has probably cost taxpayers in the region of £2 million so far for that 10 years, in part for the wrong sort of treatment in the wrong sort of institution. I therefore have several issues to put to the Minister, to which I hope that he will be able to respond during this short debate or, if time does not permit, take advice on so that he can write to me later in greater detail.

First, will the Minister comment on the legality of holding people with Asperger's syndrome under the Mental Health Act 1983? My understanding is that a report by the National Autistic Society back in 1996, instigated by the three special hospitals, suggested that Asperger's syndrome was not actually a mental disorder under the meaning of that term as laid down in the 1983 Act. If that is so, it raises serious issues about the detention of not only Piers Bolduc, but a fair number of other people. I hope that the Government will make their view on that clear.

Secondly, can the Government say how many people with Asperger's syndrome are being detained under the provisions of the 1983 Act? In a written answer to me of 10 November 2003, the Minister of State, Department of Health, the hon. Member for Doncaster, Central (Ms Winterton) told me that the Government did not have that information. The Government should have had that information and, if they did not have it then, they ought to have found it out by now. The Government should inquire into the number of patients with Asperger's syndrome who have been misdiagnosed, as was the case with Piers Bolduc, and given the wrong treatment.

I should make it clear that my aim, and that of Piers's family, is not to point fingers at people who may have taken incorrect decisions in the past. Rather, we want to establish the truth about what is happening in our secure mental hospitals now, and about the scale of the problem, so that we can understand what steps need to be taken to put matters right.

Thirdly, what action are the Government taking to improve the quality of training in the management of Asperger's for the staff at secure mental hospitals? It was two or three years after Piers's arrest before he was diagnosed as having Asperger's at all. despite the fact that his parents had raised that possibility at an earlier stage. Even after that diagnosis, the family expressed to me serious concerns that not all the staff responsible for Piers's care really knew how to deal with a case of Asperger's syndrome. They also commented to me that internal communications between staff from different disciplines often appeared to be lacking.

Fourthly, are the Government reviewing the quality of care available at secure hospitals for people with Asperger's? In a letter to me of 8 February, the Minister of State, Department of Health, the hon. Member for Doncaster, Central stated: The normal practice is to allow increasing freedom within the grounds of the hospital followed by escorted visits into the community and to a possible placement. However, on the information given to me by the family, despite the fact that Piers was approved as ready for transfer three years ago, none of that happened in their son's case until November last year. Coincidentally, that was after critical reports of Piers's treatment were published in The Sunday Telegraph and broadcast on Radio 4's "Woman's Hour". All that has apparently happened since then is that Piers was allowed to prepare and cook a pizza for himself in the Broadmoor kitchen and has been on two day visits to the Hayes unit. That seems to fall a long way short of what that Minister suggested to me should be the normal regime for a patient being prepared for transfer.

Finally, will the Minister and the Government accept the principle that families ought to be part of a process of healing and readjustment to life outside mental institutions? For me, the most distressing aspect of this case is Mr. and Mrs. Bolduc's feeling of exclusion from their son's life. In fairness, Broadmoor hospital says that such exclusion is at Piers's request, but that, in turn, is based on the hospital's insistence that he is capable of taking that decision himself and is not influenced by the staff. Of course, the people who have assessed him as competent to take that decision are the staff of the very hospital that is the subject of the complaint.

As the Minister will recall, my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning) raised this issue, among others, with him in an Adjournment debate on 10 September last year. It is utterly wrong if families feel that they are being pushed out and excluded from contact with relatives detained under mental health legislation, rather than being engaged in and involved with a programme of healing and rehabilitation.

I hope that the Minister can tell me that, after 10 years, a new life is at last ready for Piers Bolduc to start. But I hope, too, that his tragic case will serve as a lesson—not just to the Government but to us all—that we need to do far more to ensure that people with Asperger's syndrome in our secure mental institutions are given the standard of care and treatment that they are entitled to.

2.46 pm

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

I am grateful to the hon. Member for Aylesbury (Mr. Lidington) for securing this debate and for discussing a subject that, as he doubtless knows, is very close to my heart. I also thank him for raising the specific case of Mr. Piers Bolduc. who, as he says, has Asperger's syndrome and is currently in Broadmoor hospital. The hon. Gentleman has raised some interesting issues that we will certainly need to explore further if the House introduces new mental health legislation, for example, as is intended. If I fail to address any of the issues that he has asked me about, they will certainly be dealt with in a letter.

The parents of Piers Bolduc have been unstinting in trying to secure a placement for him in a centre that cares specifically for people with Asperger's syndrome, and in which they believe his particular needs can be better addressed. I should say at the outset that it is very sad if they feel excluded from the process in any way. We should learn lessons from that, and it should not happen. That said, Mr. Bolduc has rights as an adult, and I shall talk about them and what they prevent me from saying a little later. It is clear from what the hon. Gentleman said that we need to do more to square the circle and to make sure that parents feel that they have an input and are being listened to, even if we cannot always act on their wishes because we have to act on those of another party.

I care greatly about improving the experience of people with Asperger's syndrome and of everyone on the autistic spectrum, the vast majority of whom, of course, do not need such highly specialised help as Mr. Bolduc. I shall talk about Mr. Bolduc's case, which involves a person affected by Asperger's syndrome being detained in a secure mental hospital, in a moment or two. First, I want to say a few words about the recognition of Asperger's syndrome in the criminal justice system, and about high secure hospitals.

I must stress that people affected by autistic spectrum disorders, including Asperger's syndrome, do not normally pose any risk to society at large. I am aware of no evidence of any significant association between autism and criminal offending. In fact, because of the nature of autism and the very rigid way in which many people with autistic spectrum disorders tend to keep to "rules and regulations", they are often more law abiding than the general population. It would be a tragedy, and grossly unfair, if anyone inferred from my comments any suggestion that people on the autistic spectrum are a threat or are routinely dangerous. The hon. Gentleman will doubtless join me in that sentiment. Indeed, people with learning disabilities, including autism, are over-represented among the victims rather than perpetrators or crime. In 1999, Mencap reported that 21 per cent. of the people with learning disabilities that they surveyed had been subject to physical attacks in the previous year. Although research in this field is limited, naivety and a lack of social understanding are likely to increase the vulnerability to crime of people with autistic spectrum disorders.

However, some people with autism—in common with some people from every other group in society—sometimes either break the law or are suspected of or accused of breaking the law. When that happens, fair treatment for them is often dependent on the involvement of people—in the police force, the courts or the prisons—who understand autistic spectrum disorders. Before I became a Minister, I was the chairman of the all-party group on autism, and I have long been keen to see steps taken to improve autism awareness in the criminal justice system. I remain keen and I am pleased to say that some progress is being made.

The Youth Justice Board and the Magistrates Association have arranged a joint conference in July this year to raise awareness of mental health issues and autistic spectrum disorders among magistrates and judges. That conference will also give youth panel chairs and justices' clerks an opportunity to hear about policy developments and learn about the roles and responsibilities of agencies involved in providing services for young people.

Progress is also being made to improve autism awareness among police officers. Probationary police officers receive autism awareness training and are taught to recognise the condition as part of their two-year training programme. In addition, when they receive training in investigative interviewing they are given a detailed briefing on conditions, including autism, that could affect communication or that might mean witnesses being easily intimidated. Throughout their training they are reminded that the skills that they have learned may also be needed when dealing not only with witnesses but with criminals and members of the public.

As the hon. Gentleman will know, responsibility for prison health was transferred from the Home Office to the Department of Health from 1 April 2003 and I am the Minister responsible for prison health. I certainly appreciate, and the prison health team also appreciates, that autistic spectrum disorders and learning disabilities may well be under-diagnosed in the prison population.

The Prison Service, Prison Health and the Youth Justice Board share a commitment to the provision of better specialist health and mental health services for offenders. To give practical effect to that, they have jointly appointed a programme manager for juvenile health. Among the benefits expected from the creation of the post is a greater understanding of the nature and prevalence of all conditions, including autism. That should, in turn, lead to an increased emphasis on the diagnosis and assessment of such conditions at establishment level and the commissioning, by primary care trusts, of appropriate services to meet the needs identified.

One of the first projects being undertaken by the new programme manager for juvenile health is the development of a health strategy for juveniles. The extent to which autism may be a significant problem in individual prison establishments would be expected to emerge from the regular health needs assessments undertaken jointly by prisons and their NHS partners.

I fully acknowledge that people on the autistic spectrum, at all ages, are at above-average risk of developing mental health problems. That makes it particularly important to consider what steps should be taken for people with autism to ensure early intervention when mental health problems arise.

Making an accurate psychiatric diagnosis of people with Asperger's syndrome is a complex process. Features of the syndrome, such as disturbances of communication, obsessionality and preoccupations, can be mistaken for—or, indeed, merge into—mental ill health. That is exactly what happened with Mr. Bolduc. Secure psychiatric hospitals provide care and treatment for people detained under mental health legislation and who are considered to require such care and treatment in secure conditions. That could, for example, be because they are considered to present a potential threat to themselves or others or might abscond if detained in open conditions. They will include mentally disordered offenders and patients who have proved unmanageable in non-secure conditions. If an individual with Asperger's syndrome is considered sufficiently dangerous, he or she will be admitted to a high security hospital until their condition improves enough for them to be managed in a lower level of security.

I know that many hon. Members are concerned about how many current residents at secure mental hospitals have been assessed as having Asperger's syndrome. It is one of the questions that the hon. Gentleman asked me. A few years ago, the Department of Health funded the National Autistic Society to undertake a specific piece of work in this area. Entitled "A Preliminary Study of Individuals with Autistic Spectrum Disorders in Three Special Hospitals in England", it was published in 1999. The report arose from concern among professionals in special—now called high secure—hospitals in England to establish the number of people with an autistic spectrum disorder who were detained in their care under mental health legislation and whether such settings were appropriate. It is available on the National Autistic Society website.

The report identified that there were then 31 individuals with autistic spectrum disorders, of whom 21 were thought to have Asperger's syndrome. Mr. Bolduc would have been a resident in Broadmoor at the time that survey was done. It concluded that individuals with autistic spectrum disorders form only a small proportion of all those in the special hospitals". It is worth noting that the report's conclusions also stated that the possibility of the presence of an autistic spectrum disorder should always be considered when assessing offenders in special hospitals. I am sure we all agree that the relatively small proportion of people affected does not make it any less important to get it right for the people concerned. The important thing is to do all we can to improve services.

The transition from high secure care to conditions of lesser security can be a difficult one for many individuals and needs careful handling. A patient may move out of a high security hospital either on transfer to a less secure hospital or on discharge into the community. The first step would usually be for the patient's responsible medical officer, in consultation with his clinical team, to decide that the patient no longer needs to be detained for care and treatment in conditions of high security.

If the decision is that the patient nevertheless still requires care and treatment in a hospital setting for their mental disorder but that it can safely be provided at a lower level of security, the responsible medical officer or clinical team will seek to identify a suitable alternative placement. The doctor or clinical team at the receiving hospital will need to agree that transfer is appropriate. and the relevant PCT commissioner's agreement to fund the placement will need to be obtained. If the necessary agreements are obtained but a vacancy in the receiving facility is not immediately available, the patient may be placed on a waiting list for admission.

I come to Mr. Piers Bolduc's present situation. I must say at this point that I am limited in what I feel I can say about the specific case. Mr. Bolduc has advised, through his clinicians at Broadmoor hospital, that he does not wish personal details of his case to be discussed publicly. Mr. Bolduc is an adult and has the capacity and right to make such decisions, and there is no reason why that request should not be respected in full. I make no criticism of the hon. Gentleman, because I know that he represents the views of Mr. Bolduc's parents and has their permission to put in the public domain the information that he gave. However, that does not mean to say that I may do so, given that I have Mr. Bolduc's instructions.

I can tell the House, however, that it was following Mr. Bolduc's transfer from Stockton Hall hospital to Broadmoor hospital in 1995 that a diagnosis of Asperger's syndrome was confirmed. A programme of therapy and rehabilitation was put in place and has progressed to the point that the clinical team and Mr. Bolduc himself now feel that he is ready for transfer to an alternative. specialist unit. A unit run by an organisation with specialist expertise has been identified, which offers assessment and treatment for people with Asperger's syndrome. In respect of Mr. Bolduc's request for privacy, it is not appropriate to confirm the name of the unit or its location. This unit is well equipped to support Mr. Bolduc with the level of support, safety and security that he both requires and seeks.

All necessary clinical assessments have been undertaken as part of the referral process and Mr. Bolduc has been accepted for transfer to the unit, as soon as a place becomes available. I hope that the hon. Gentleman will be somewhat reassured by that. The necessary transfer agreements are also being pursued by Broadmoor hospital with the Home Office. My understanding is that all involved parties, including Mr. Bolduc's parents, are in agreement that it is in fact the most appropriate placement. Unfortunately it is not possible to say precisely when the transfer can take place, as that is dependent on availability of a bed, although it is anticipated that this should be in the coming months. As the hon. Gentleman requested, I am happy to liaise with colleagues at the Home Office to ensure that there are no undue delays. While Mr. Bolduc remains at Broadmoor hospital, his current therapeutic programme will continue with the aim of developing the skills required both for his next placement and beyond.

Finally, I should like to stress again that the vast majority of people with autism or Asperger's syndrome do not present a risk to society because of their condition. We have been discussing very rare cases. However, when people with ASD, such as Mr. Bolduc, do come in contact with the criminal justice system, they are entitled to interact with people who understand their condition and act appropriately. That is what we are trying to put in place across the board, and I hope the hon. Gentleman will accept that progress is being made and that I am committed to keeping up the pace of reform and to improving services for people with Asperger's. I will do all I can to ensure that Mr. Bolduc's transfer takes place as expeditiously as possible and that the matter is dealt with quickly.

Question put and agreed to.

Adjourned accordingly at Three o'clock.