Memorandum submitted by United Response (MH 38)
1. Background information on United Response.
1.1. United Response is a national charity supporting with learning disabilities and mental health needs. We were established in 1973 by our current Chief Executive, Su Sayer OBE to support people moving out of long stay hospitals to live in the community and to prevent people from having to move into hospital by providing them with local support.
1.2. We now support around 1,000 people with a learning disability and 200 people with mental health needs. 40% of the people we support use only non-verbal communication and 32% have challenging behaviour.
1.3. Our services include supported living, residential care, direct payments, outreach, employment, advocacy and life skills. We have around 2,000 staff and an annual budget of £50 million.
1.4. We are members of the Mental Health Alliance (MHA).
2. Learning disability and compulsory treatment of people under the 1983 Mental Health Act
2.1. In addition to supporting MHA amendments, we would like to see reform of the legislation affecting compulsory treatment of people with a learning disability.
2.2. This briefing relates specifically to clause 2 of the Bill and the treatment of people with a learning disability. We wish to see clause 2 of the Bill amended to exclude learning disability entirely from the definition of mental disorder.
2.3. The Mental Health Bill preserves the effect of the Mental Health Act 1983 in relation to learning disability whereby a person with a learning disability who is not suffering from a mental illness but whose behaviour is "seriously irresponsible or abnormally aggressive" can be admitted to hospital for compulsory treatment. We regard this provision as unnecessary and potentially harmful. We do not believe people with learning disabilities should be detained in psychiatric hospitals unless they are suffering from a mental illness.
2.4. We are not opposed to the principle of compulsion and accept that sometimes compulsory admission is in a person's best interests. However, we believe a person with a learning disability should only be admitted on a compulsory basis to psychiatric hospital if there is clear evidence from an assessment that they are suffering from a mental illness and that compulsion is the only way to ensure that they receive appropriate psychiatric treatment. No-one should be admitted to hospital on a compulsory basis simply because they have a learning disability which is accompanied by either seriously irresponsible or abnormally aggressive behaviour, without associated evidence that they are suffering from a mental illness.
2.5. For some people with learning disabilities, behaviour which may be construed as "seriously irresponsible or abnormally aggressive" may be triggered by environmental factors rather than mental illness, which can lead to mis-diagnosis. Our experience indicates that where flexible support can be provided by skilled and experienced professionals there is usually no need for compulsory admission to hospital. Someone with a learning disability is unlikely to benefit from admission to a psychiatric unit unless they are suffering from a mental illness, and the experience is likely to add to their distress.
2.6. People with learning disabilities may behave in an aggressive or threatening manner because of emotional distress or physical illness. In such cases people need expert support not compulsory admission to hospital. Fortunately, because of our interventions, no-one we support has been compulsorily admitted to hospital for this kind of behaviour. But the following case illustrates how this could easily arise. A man in his early 40s was found huddled under his bedclothes by his support worker with signs of an injury to his face and having vomited. He was taken to an Accident and Emergency department where he became extremely aggressive, threatening to assault hospital staff and was restrained by four hospital staff. Our Area Manager arrived and together with the Service Manager was able to calm him down. Following discussion with the A and E doctor, the man was administered oxygen and medication for a chest infection and was able to return home. Without the expert support of staff who knew him well, he would very likely have been sedated against his will and admitted to hospital, adding to his already considerable distress.
2.7. We want people with learning disabilities to get proper psychiatric treatment if they are mentally ill. At the moment this is often denied to them because their symptoms are seen as a product of their disability rather than of mental illness. There is a high risk of misdiagnosis in people with learning disabilities, especially when they have difficulties expressing how they feel, and such diagnosis needs to be done by highly experienced staff, wherever possible backed up by information from care professionals and relatives who know the person well. The provisions in the Mental Health Bill do nothing to tackle this problem.
2.8. We believe there is no need for the provision in Clause 2 relating to learning disability which has many potentially harmful consequences. It is stigmatising and deprives patients of their liberty against their will. It puts them in a complex system ill-adapted to the needs of people with learning disabilities which is intimidating and difficult to understand and in which advocacy provisions are inadequate. It may also subject people to the often unpleasant side effects of medications without their consent or full understanding.
2.9. We have several instances where people we support with learning disabilities who are showing symptoms of serious mental illness have been denied treatment, despite government policy on learning disability (Valuing People - a new strategy for learning disability in the 21st century, Department of Health, 2001, section 6.24), stating that a person with a learning disability who has a mental illness should expect to be able to access services and receive treatment like everyone else . For example, in a case in the northwest, a young woman experiencing severe anxiety and auditory hallucinations was repeatedly refused treatment by psychiatric services. On several occasions the police and fire brigade were involved because she climbed onto the roof of the building where she lived. On another occasion she tried to escape from a moving car on the motorway, ran off into the fields and was finally picked up after a search involving a police helicopter. Following this incident she was finally admitted into a psychiatric unit for treatment and assessment for a period of several weeks. Her mental health condition was stabilised and she is now able to live in her own flat with support and receives treatment from her GP for her mental health needs. Clearly, this shows not only a lack of response, but also that compulsory admission would have been appropriate in this case due to clear evidence of mental illness, rather than "seriously irresponsible" behaviour.
2.10. It is difficult to see how admitting a person behaving in an "abnormally aggressive or seriously irresponsible" manner to hospital is likely to be beneficial for them unless they are also suffering from a mental illness. Our experience is that where flexible support from professionals skilled in working with people with learning disabilities is available there is no need for compulsory measures. The use of flexible special support is backed by government policy (Valuing People, section 6.25).
2.11. People with learning disabilities are often prescribed sedatives to manage challenging behaviour rather than the root cause of their behaviour being addressed. We are concerned that in some areas cuts to specialist behavioural/psychiatric learning disability multi-disciplinary teams could increase the likelihood of people being admitted to secure accommodation or given sedation or both because specialist support needed at times of crisis is not available.
2.12. The Government has said that the intention of including people with learning disabilities within the scope of the Bill is "to ensure that the Act can, as now, be used for the very small minority of people with learning disabilities who may need and benefit from compulsion, whether or not they are also suffering from a mental illness or another disorder. In particular it will ensure they can still be diverted from prison to hospital should they be convicted of an offence." The very significant numbers of people with a learning disability in prison suggests that the provision is not particularly effective in diverting people from the criminal justice system. Furthermore, our concern is that the provision acts as a catch all, with people admitted to hospital against their best interests.
2.13. We do not want to see more people with learning disabilities going into prison or into the criminal justice system. We want to see more joint work between learning disability crisis teams and generic psychiatric support teams. Where they exist, learning disability crisis teams can enable people whose behaviour has reached crisis point to be supported in the community. We would also like to see a place of safety in every community for people with learning disabilities to be assessed if they show signs of seriously irresponsible or abnormally aggressive conduct.