Memorandum submitted by Rethink (MH 26)
1. What is Rethink? Rethink, the leading national mental health membership charity, works to help everyone affected by severe mental illness recover a better quality of life. We help over 48,000 people each year through our services and support groups and by providing information on mental health problems and our website receives almost 300,000 visits every year.
2. Rethink is a core and active member of the Mental Health Alliance and supports the submission which the Alliance has made to the Committee. For this reason, we have chosen to focus in particular on five specific issues:
· accessibility of mental health services
· displacement of the Nearest Relative under section 29
· rights of carers
· advance statements
· black and minority ethnic communities
3. Three illustrative case studies are included at the end of the document.
5. The Bill is said to be about public protection and reducing the risk of homicides and suicides by people with mental illness. The only way to ensure that homicide and suicide numbers reduce is to ensure that more people who have mental illness receive treatment. The Bill needs to make mental health services more accessible by giving people a right to treatment they need, as currently 1 in 3 people later sectioned are turned away at a point where they could more easily and cheaply be treated.
6. The proposals to displace the Nearest Relative in court are cumbersome and expensive for everyone concerned and should be replaced with a system of advance statements. If the current proposals are retained, the ability to displace needs to be moderated by the person's capacity to make that decision. Local authorities should have a duty to displace where the relationship is thought to be abusive rather than relying on the person with mental illness to do this.
7. Consultation with carers should only be blocked by the person being treated if they retain capacity. Advance statements are an easy way to ensure that only the right people are consulted and given information. They could also ensure that professionals have the information they need to provide good care.
8. Ethnic inequalities in mental health could be worsened if the Lords amendment on exclusions is reversed. The Bill must clearly state that different cultural beliefs do not in themselves constitute mental illness and ensure that the international experience whereby CTOs have disproportionately affected people from BME communities is not repeated in England and Wales.
9. Accessibility of Mental Health Services
10. It is in everyone's interest for people with severe mental illness to get the care and treatment they need: people with severe mental illness themselves, their families and friends and society at large. Recovery is more likely when treatment is voluntary and early, leading to better social inclusion - in mental health, a stitch in time really does save nine. Families get support and information earlier rather than being left to cope alone. Society benefits from lower costs of treatment and higher employment rates.
11. There are already accessibility issues in relation to mental health. 1 in 3 people who are later sectioned report being turned away from services earlier when they asked for help.[i] People with mental illness attest that the fear of compulsory treatment often deters them from seeking help: in a survey of people with severe mental illness, 1/3 said that compulsion deters them from approaching services.[ii] In some tragic cases, people have said that they have been deterred from asking for help early because of the fear of being treated against their will. For example, John Barrett's psychiatrist stated:
12. "... he was very concerned that I would admit him and he wanted to avoid that. The impression I had was that he was trying to avoid an admission and he was very concerned that seeing me might lead to an admission of some form... he was, as some patients are, very suspicious and uncomfortable with psychiatrists, who have a certain amount of power to take away their liberty."
13. In order for everyone to benefit therefore, we need to limit the use of compulsion so that it is a last resort. The amendments proposed by the Government will in fact ensure that compulsory treatment is more widely used. The result will be that people are less likely to approach services for the help they need and society will pay a higher price for people's treatment as it treatment will be received later, when in crisis, and under compulsory powers which are inherently more expensive due to the bureaucracy necessary in the compulsory treatment process.
14. It is widely recognised that resources are tight in mental health services. Over decades, mental health has suffered from under funding and whilst resources have increased in the last decade or so, mental health services have been particularly affected by the recent NHS deficits, as the Health Select Committee has recognised.[iii] Given the low level of resources, it is particularly important that money is not wasted on the bureaucracy inherent on compulsory treatment, whether in hospital or in the community.
15. The Bill could make services more accessible and hence help people with severe mental illness, their families and society as a whole by:
· Including a duty on services to assess people's mental health needs - the Scottish Mental Health Act provides a precedent for including this in law
· Requiring professionals to compile a comprehensive care plan for people when they are discharged from hospital
16. Displacement of Nearest Relative
17. At the moment, the person appointed as Nearest Relative is decided through a scale of family and residential relationships.[iv] This system results in perverse outcomes. If the person treated compulsorily is living in a care home, the oldest other resident of the home becomes their Nearest Relative. A person living in Cornwall could have a relative living in Carlisle appointed as their Nearest Relative, which is extremely impractical for both the everyone concerned, including the professionals working with the person.
18. The amendments proposed by the Government, however, simply complicate the outdated system further. The proposed system of using court proceedings to displace a nearest relative likely to be difficult, stressful and time-consuming and expensive for those concerned: people with severe mental illness, their families, health/social care professionals and the court system. Given the constraints on resources in the NHS and in the court system currently, it seems foolish to add an expensive and time-consuming procedure when a far simpler procedure for appointing a Nearest Relative exists and is working well in Scotland (see advance statements below).
19. Even if the court system proposed is kept, it could be improved through some simple changes. Under the Government amendments, the person with severe mental illness could displace the person who would be appointed Nearest Relative even if they do not have the capacity to make that decision. The judgement of many detained patients (and some others) will in some respects be affected by symptoms of mental illness. Their judgement about who should carry out the NR role is likely to be impaired in this way. This often happens after there have been unsuccessful attempts by family members over a long period to persuade them to engage with the mental health services or to accept treatment. Family or friends will have been trying to act in the person's best interests, but the patient often misconstrues this, especially if they are affected by paranoia.
20. The patient's capacity to make a valid decision should be an essential condition of their exercising the right to seek displacement of the NR. This would bring the new provision into line with the Mental Capacity legislation.
21. If a patient has applied for displacement, the NR will need information, advice and probably legal help if the matter is to go to court. We do not think that advice from the local authority will suffice. Care must be taken that the NR is not disadvantaged by lack of access to legal help.
22. One of the conditions proposed for displacement of the NR is that 'the relationship is damaging to the health and well being of the patient'. There would need to be clear objective evidence that such a situation existed and was not based simply on the patient's misinterpretation of efforts made to encourage re-engagement with the mental health services.
23. Where there is clear evidence that the relationship is damaging, the person with severe mental illness should not be left to instigate these court proceedings. If professionals are sure that the relationship is abusive, for example, professionals should take responsibility for displacing the Nearest Relative. A person who is experiencing mental illness and suffering abuse should not be expected to instigate court proceedings - the State should take this responsibility and a duty on professionals to act in this instance should be included in the Bill.
24. In Rethink's experience, very few NR's have much idea of the rights which they could exercise under the current mental health legislation. Most depend entirely on information provided by the professionals involved with their relative. Many are not aware that they have the right to discharge or to require that an ASW takes a case into consideration, which some seek to do in a developing crisis. Local authorities should have a duty to provide the relevant information.
25. Rights of carers
26. Carers are routinely denied information which they need in order to provide adequate care to their loved one. Often, this is because people with severe mental illness have not given consent for the information to be shared. This is reasonable where the person concerned retains decision-making capacity. However, where people have lost capacity, information should be shared with carers, especially if people have made an advance statement detailing what information should be shared and with whom (see advance statements below).
27. The effect of Article 8 of the Human Rights Act on the family must be taken into account: the right to privacy, family life, home and correspondence. Those who are providing care or doing their best to protect the interests of someone with mental illness should not be excluded from decision making or deprived of information for which they have a reasonable need if they are to care effectively.
28. We are concerned that the provisions relating to Supervised Community Treatment/Community Treatment Orders could make life more difficult for carers. Carers who live with people with severe mental illness put under CTOs will end up in a policing role, even if they have no legal responsibility for seeing that their loved one adheres to the conditions of the CTO. Effectively, carers will have to choose between risking their relative being returned to hospital and policing their conduct, ie a rock and a hard place
29. Community Treatment Orders should not specify that someone live with their carer unless the carer has been fully consulted on this and given consent. Otherwise, this may be a breach of Article 8 of the Human Rights Act. What will happen if a carer initially consents, but then finds this too difficult?
30. Advance statements
31. At the moment, mental health services are left without vital information about how a person would like to be treated when unwell. This includes basic personals information such as who they want to be informed that they are being treated, what dietary requirements they have and who they want to look after their finances while in hospital or feed their pets. It also includes key medical information such as what treatment they have reacted to badly in the past (eg electro convulsive therapy), which medication they are allergic to and what treatment they are undergoing for physical health problems, which is often ignored while people are in inpatient care for mental health. This lack of information leads to all kinds of problems: families can be left in the dark, people can be discharged to find their finances in a mess and people can be given medication or food which is unsuitable or even dangerous for them. It means that professionals who wish to respect a person's wishes lack the information they need to do so.
32. All these problems could be addressed by a simple, cost-effective measure: advance statements. In its response to the report by the pre-legislative scrutiny committee on the Draft Mental Health Bill, the Government promised to reconsider how to put advance statements into the draft Bill. However, no amendments on this issue have been put forward in the 2006 amending Bill.
33. The Scottish Mental Health Act includes provisions relating to advance statements: take up so far has not been as high as expected, but it is reasonable that it takes time for such new provisions to become fully embedded in practice.
34. Advance statements could solve the problems discussed above in relation to displacing the Nearest Relative. Instead of forcing people to take out court proceedings to get the Nearest Relative they want, this could be specified in a person's advance statement, which would be drawn up when the person concerned has full decision-making capacity. This could become part of the Care Programme Approach documentation. The advance statement would then be consulted if the person lost capacity and would provide a clear guide to professionals as to what the person's wishes were.
35. It needs to be recognised that some patients will be subject to both the Mental Health Act 1983 and also to the mental capacity legislation. Some will have donated a Lasting Power of Attorney to a person who is not the NR, but who will make decisions with regard to personal welfare, including healthcare, as well as property and affairs. It seems sensible that someone with an LPA should automatically carry out the NR role.
36. Black and minority ethnic communities
37. People from black and minority ethnic communities face extreme inequalities in regard to mental health services. While some of this inequality is attributable to differences in social exclusion and other risk factors for mental illness, not all the inequalities can be explained in this way.
38. For example, Black and Asian adults are more likely than white adults to have their problems wrongly attributed to mental ill health.[v] People from white and black communities are "seen differentially even if they exhibit the same behaviour".[vi] Adults from BME groups are twice as likely as people from the white community to disagree with their diagnosis.[vii]
39. To address these problems, we need changes in practice and legislation alone cannot achieve that. However, legislation does give a framework for practice and can facilitiate better or worse practice. The Bill could help to address these inequalities through:
· a clear statement that different cultural beliefs do not constitute mental illness, along the lines of the House of Lords amendment that said different cultural/religious/political beliefs alone cannot be considered a mental disorder.
· limiting the use of community treatment orders to revolving doors patients. International experience suggests that people from BME communities are particularly affected by these orders: in New York State, black patients five times more likely than white patients to be made subject to compulsory community treatment.[viii]
40. Representatives from Rethink would welcome the chance to give oral evidence to the Committee.
41. Case studies
42. Case A A young man with an eight year history of schizophrenia, had spent considerable time in hospital under the Mental Health Act and had experienced the use of section 136 by the police. While in hospital he was badly affected by side effects of medication which resulted in his becoming reluctant to accept treatment. Subsequently, his close relatives agreed that he could live in the family home provided he attended all appointments offered by the mental health professionals and took his prescribed treatment. This arrangement lasted for months, although in fact the psychiatrists did not prescribe antipsychotic medication. Recently he became very disturbed after a close friend experienced a traumatic event. His bizarre behaviour outside the home led to requests for the police and the mental health services to intervene. No action was taken and several people died.
43. This young man would be regarded as a 'high risk patient', but we cannot see how the amendments proposed to the Bill would have prevented the tragic outcome. Poor risk assessment and service failures appear to be responsible. In the background is the young man's attitude to medication, influenced by appalling earlier experiences of treatment. The Bill needs to include a right to access services/duty on services to assess mental health needs.
44. Case B B, who lived in the family home, had used large amounts of alcohol since his mid teens and was later diagnosed with schizophrenia. When a crisis occurred he was not admitted to hospital because no beds were available locally. A few weeks later, the young man set fire to the house, and he and two close relatives died.
45. This case also seems to have resulted from poor risk assessment, failure to listen to the family's concerns and lack of resources. The young man complied with his treatment plan and a 'community treatment order' would have made no difference. The Bill needs to include a right to access services/duty on services to assess mental health needs.
46. Case C A young woman who always complied with her treatment programme was obviously deteriorating towards crisis. As usual, the GP and local services would not discuss the problems with her parents due to 'confidentiality problems', and it was police intervention in her home which resulted in her admission to hospital. But she was able to leave the ward soon afterwards and subsequently swam out to sea, putting her life at great risk. She was saved by the rescue services.
47. At the time of the incident, the young woman was so unwell that she would not have allowed anyone to consult with her carers, and would certainly not have wanted one of them to act as her nominated person when she was subsequently detained under the current Act. Yet it was only her carers who fully appreciated the risk. Decision-making capacity must be considered when professionals make judgements as to whether to share information or not. People need to be able to make advance statements to explain what information they want shared and with whom.
[i] Rethink, Better Act Now, 1999
[ii] Rethink, Better Act Now, 1999
[iii] Health Select Committee, NHS Deficits inquiry, 2006, HMSO
[iv] The hierarachy runs (1) husband, wife, or civil partner; (2) son or daughter; (3) father or mother; (4) brother or sister; (5) grandparent; (6) grandchild; (7) uncle or aunt; (8) nephew or niece; (9) an unrelated person who resides with the mentally disordered person. Within each tier (eg 'son or daughter'), the oldest of the two is chosen as the Nearest Relative.
[v] National Institute for Mental Health in England/Department of Health, Inside Outside, 2003
[vi] Loring and Powell, 1988
[vii] Rethink, No Change, 2000
[viii] New York State Office of Mental Health, Kendra's Law: Final Report on the status of Assisted Outpatient Treatment, 2005