Memorandum submitted by the National Perceptions Forum (MH 8)
What is National Perceptions Forum?
NPF is a major national service user group that is run by and for people who have had schizophrenia and other severe mental illnesses - so we directly represent many people with severe mental illness who may be affected by this legislation. Please note, although it is part of the charity Rethink, it is a semi-autonomous user group that is constitutionally afforded the freedom to decide on it's own affairs, including it's policies - hence our submission may not reflect that of Rethink and vice versa. NPF is also a core member of the Mental Health Alliance in its own right.
NPF welcomes all six of the amendments made by the Lords
and hopes MPs will not reverse them.
1. DEFINITION OF MENTAL DISORDER AND EXCLUSIONS
NPF feels strongly that the definition of mental disorder is far too wide and could include many people with physical brain damage caused by other illnesses or accidents, and also maybe include kinds of "deviant" behaviour. In the former, it is to be assumed that the person, not ever having been mentally ill, should automatically be entitled to make their own decisions - in the latter it should be ensured that this Bill will not end up being used as a tool for public order, when it is supposed to be piece of health legislation. NPF welcomes the Lords amendment on Exclusions and Impaired Decision Making and hope MPs will not reverse them.
2. COMMUNITY TREATMENT ORDERS
2.1. NPF is strongly opposed to Community Treatment Orders. We have grave concerns about the ethics and practicability of them. The Lords voted for an amendment that CTOs will only be used in genuine "revolving door" situations and that a renewal of a CTO or detention must be corroborated by a medical opinion. NPF welcomes these amendments and hope MPs will not reverse them.
2.2. However, we strongly disagree that there is a need for them - most people function relatively well in the community - and really value being able to make their own choices about what they do and where and when they do it. In fact it is this freedom that enhances people's chances of recovery - the current law enables people, after hospital, to take up responsibility for their own day-to-day life by allowing them to make their own decisions - and so confidence and self-esteem can be built up as people set out to achieve aims that they have set for themselves. It also can relieve depression as service users (like any other person) enjoy being able to do what pleases them. This is the basis of modern psychiatric thinking - a snapshot of a "recovery model" - it is the way forward for psychiatry - Community Treatment Orders are a step backwards.
2.3. This bill also contradicts other government policy about the importance of choice in the health service. It seems this choice agenda is for everyone, but excludes mental health patients. They have rights to make choices about their care and treatment and to be able to discuss with doctors the benefits of, and their preferences for particular drugs, for example, like anyone else. CTOs will make this very difficult for people to do this effectively.
2.4. CTOs are by definition compelling someone to do things they would not like to do. One significant consequence of them is that some people will end up on long-term compulsory medication with dreadful side-effects, including causing life-threatening illnesses, including in young people. (please see Section 6 on Safeguards). These medications can also have unbearable side-effects for someone in the here and now. NPF is extremely concerned that some people will end up on an indefinite CTO and be stuck with medication that is making their life a misery, especially if forced to take an old style anti-psychotic drug. 50% of all prescribed medication for any illness is not taken as prescribed, due to similar reasons - so why are psychiatric patients in the community being singled out for compulsory medication?
2.5. The same circumstances could arise for any of the requirements of a CTO - ie. Someone could be required to live in a badly run and uncaring hostel/home and suffer in silence, or someone could be required to attend a day centre where there are other people he/she just doesn't get on with and so this could be a potential flashpoint. Any stipulations that someone should "abstain from particular conduct" are also morally wrong and should be removed. They would make this legislation akin to a mental health Anti-Social Behaviour Order. ASBOs are not supposed to be used for people with health conditions - this principle should be upheld.
2.6. It is very likely to be the case that some people may find their lives made so miserable by CTOs they could go underground or commit suicide. And what of the ethics of someone being told if they don't comply they will be taken into hospital? There are not enough beds for people who are really ill anyway and medical care will become blurred with public order - the consequences of not complying will be seen as punishment, be bitterly resented and also destroy some doctor/patient relationships.
2.7. Also, NPF is concerned about the implication that the community could be an alternative to hospital. If someone is in a crisis or acutely ill it may not be safe for them to remain in the community - it needs to be ensured that people will still have access to hospital beds, when needed. Neither should people be kept in the community just because it is cheaper.
2.8. Finally, NPF is concerned about the proposed timescales. Rather than there having to be two 6 month Orders before yearly ones can be imposed - why not four 6 month Orders prior to a year? The government has proposed that someone can apply to the Mental Health Review Tribunal once in each period of a CTO, so NPF believes that this suggestion would enable more opportunities to have it terminated. People should also be able to appeal to the MHRT against the conditions of their CTO. It may become difficult for some service users to avoid several or continuous renewals, due to the currently proposed broad criteria - so having more opportunities to have the CTO reviewed or terminated would be a better system. Also our proposed timescales would ensure that people would have the conditions of their CTO officially reviewed over a longer time frame.
3. NOMINATED PERSONS
3.1. NPF would like to see the system of Nearest Relative abolished and some choice of Nominated Person introduced since someone's NR may be someone they dislike or live miles away from them. It is the case that some people's NR may have no role in their care at all. We would support an amendment to restrict a service user's choice to any relative of their choice, or their primary carer. Also the NP should remain on record in an Advance Statement, even if a person stops being under compulsion, as it may be unfair to ask someone to choose an NP at the time they come under compulsion, since they then may be acutely ill and possibly unable to do so. So unless it hasn't been possible because it is a service user's first contact with mental health services, we feel it would make more sense for people to have the option to choose an NP in advance, when they are well, so they will have more chance of making the best decision - then if they become subject to compulsion their NP can automatically be brought into play.
3.2. A person's primary carer may well be a close friend or their partner and they may want to choose them to be their NP. This NP is likely to be very helpful, since their already close relationship with the service user will enable them to better understand, and communicate to others, their friend's wishes and feelings. They will also importantly be someone a person in crisis will trust and so lessen their distress in a crisis, since they have chosen them.
4. ADVANCE STATEMENTS
4.1. It is a very significant omission in this bill that there is no mention of Advance Statements. Advance Statements or Refusals could be crucially important in enabling a service user to get the best possible care and treatment - they should have an appropriate legal weight, so there is parity with the Mental Capacity Act - and there should be a duty on the clinical supervisor to consult an AS if there is one.
4.2. Many people could specify in advance, whether for example, they experience unacceptable side-effects with a particular drug or conversely what drugs have been beneficial in the past. They could also indicate an Advance Refusal of certain treatments such as ECT or a drug that the service user has found particularly unpleasant. NPF believes that an Advance Refusal should only be over-ridden if the service user lacks capacity, all other options have been exhausted, and there is an imminent risk to life. If the clinical supervisor does this they should document the reasons why and make these records immediately available to the service user and their NP and/or Advocate - this would lessen the distress of a person who has had their wishes over-ridden when they are in a crisis.
4.3. A whole range of what a person feels they need or helps them, but also what does not work could be in an AS - without them the clinical supervisor may end up making educated guesses as to what to do, with possibly detrimental consequences. Therefore, it is of the utmost importance every service user is given an opportunity to draw up an AS and also given any information or support they require to do so by their care team - it should also be reviewed regularly.
4.4. NPF also feels very strongly that a service user's Nominated Person should be stated in their AS - and should remain in this record, even if they stop being under compulsion, so their NP can be easily reintroduced if they become subject to compulsion in the future. (Please see Section 3. on Nominated Persons)
5. TREATMENT SAFEGUARDS
NPF welcomes the government amendment that ECT cannot be given to a service user who has decision-making capacity without their consent. However, we do not agree that this can be over-ridden in the case of an emergency. Also a person without capacity should only be given it against their wishes if there is an imminently life-threatening situation and nothing else has worked. There is much evidence that ECT may be harmful. Also, we feel it should never be given to people under 16 - recently the Committee for Safety of Medicines banned SSRI anti-depressants (such as Seroxat and Prozac) for children - it seems an inconsistent policy to allow ECT for developing persons.
5.2. Medication Doses Above British National Formulary Levels
or Used Outside of Product Licence or Polypharmacy
NPF feels that doses above BNF levels, polypharmacy, or medication outside the product licence should only be given with a service user's fully informed consent or after there is clear evidence existing doses are not having sufficient therapeutic effect and there is a life-threatening situation.
5.3. Long-Term Compulsory Medication
NPF is extremely concerned about the likelihood of some people being on indefinite CTOs involving a requirement to take particular medications. All psychiatric medication has side-effects - some causing severe and life-limiting illnesses such as diabetes, osteoporosis, heart problems, including heart failure (torsades de pointes), and so on. It is therefore imperative that if a CTO imposes medication, the service user is legally entitled to have physical health checks - maybe (if they wish to have them) every 6 months and more frequently if they are needed. This is very important since these checks could pick up on some serious illnesses caused by medication. By changing someone's medication, problems like tardive dyskinsia can be reversed if caught early, the progress of illnesses such as diabetes can be slowed and heart failure prevented - since heart arrhythmias could be identified early. The inclusion of this clause in the Bill would bring it into line with other government policy; in the new GP contract for instance people can have annual physical checks. However, although it was controversially decided that GPs can opt out of the above scheme - NPF very strongly feels that if someone's medication is compulsory they should legally have a reciprocal right to these checks.
6. INDEPENDENT ADVOCACY
6.1. The government should create a statutory right to independent advocacy and also that a service user and advocate have the right to meet in private. Secondly, the advocacy service needs to be truly independent - ie. Not funded by the same local statutory body that is involved in the process of compulsion. To avoid conflicts of interest, we would like that the said advocacy service be funded directly by central government.
7. RIGHT TO ASSESSMENT
7.1. NPF feels that a service user should be formally entitled to ask for an assessment for themselves or instruct their Nominated Person or Advocate to request one. NPF also feels that a service user's NP or Primary Carer (on a substantial and regular basis), may also request an assessment. There should also be a duty to do the assessment within a specified time whoever requested it. Also, if a service user is assessed and it is not thought treatment is necessary, then written reasons for that decision should be given to
the person who made the request. If a service user does not meet the criteria for any compulsion, but needs some form of treatment they should still be offered extra services/support on a voluntary basis - the service user could then choose whether or not to accept it.
8. CARE PLANS AND CONSENT TO TREATMENT
8.1. NPF feels that when a Care Plan that is going to be compulsory is being drawn up by the clinical supervisor, then a duty is placed on the clinical supervisor to ensure that any treatment a service user requests or is willing to agree to, is fully considered first and provided, if at all possible. For example, a person could say at the time, or alternatively could specify in an Advance Statement any treatments they may have found helpful in the past, but also those which have had unacceptable side-effects. (Please see section 4 on Advance Statements) NPF believes that the less disempowered a person feels when under compulsion, the less distressing it will be for them - so their outcomes will be better - and also the relationship with their mental health professionals will be less harmed. If a specific request for a treatment is refused then the service user (and NP and/or Advocate) should be given an immediate written explanation. Basically, the more chance a person has of getting treatments they find most acceptable or helpful - the better for everyone.
9. PROFESSIONAL ROLES
9.1. Whilst we agree the new AMHP need not be social worker, NPF does feel that it is very important that they are not from a medical background (eg. a nurse or doctor). Several types of people that are not medically trained, but professionally qualified in other ways work in mental health teams - the ability to train as an AMHP should be restricted to them. Secondly, we feel that the new Responsible Clinician, should only be permitted to come from a medical background, such as a nurse of doctor. Even in the modern multi-disciplinary environment, some division of roles needs to be maintained, people's past training influences their perspective in practice, and different backgrounds need to complement each other not confuse the situation.
10. ETHICS OF DETAINING PEOPLE WHEN THERE HAS BEEN NO OFFENCE
10.1. NPF would like to question the ethics of this legislation potentially being used to lock up some people, even if they have committed no offence, through the abolition of the "treatability test". Predictions of future dangerous behaviour are notoriously unreliable - many people will be deprived of their liberty unnecessarily. Also there are comparatively low figures of homicide by people with mental health problems set against the total amount of homicides per year. It is important to note that there has not been an increase in homicide by people with mental health conditions since the introduction of community care - this figure has remained similar for 50 years. Also many more homicides occur as a result of drink and drugs. Finally, there are many potential offenders in society - for example, inner city gangs, politically extreme groups, football hooligans, serial drunk drivers etc. No-one is proposing to lock up any of these people prior to a conviction - some people with particular personality disorders (or thought to be) are being singled out. Surely this is against the Human Rights Act? We are appalled at the possibility that so many people could end up becoming a victim of the state through unnecessary detention - for no established reason.
SUMMARY OF POINTS
NPF welcomes all six of the amendments made by the Lords
and hopes MPs will not reverse them.
1. Definition of Mental Disorder
The definition of mental disorder is far too wide and does still not appear to clearly exclude physical illnesses or deviant behaviour.
2. Community Treatment Orders
There is strong evidence that CTOs are not necessary, appropriate, or therapeutic - they may instead be counterproductive and unworkable. They may drive some people away from services and cause suicides. They contradict this government's choice in the health service policy - it is supposed to be for all, but excludes mental health patients.
3. Nominated Persons
Service users should be given the option of choosing an NP, (maybe not anyone, but from a list consisting of their relatives and primary carer), when they are well and have this specified in an Advance Statement - not only choose one at the time they come under compulsion, since they then may be acutely ill, and possibly unable to make a reasonable choice. It is important the Nearest Relative system is abolished because some people do not get on with their NR or they may have no role in their care.
4. Advance Statements
Everyone should be given information and support to draw up an Advance Statement when they are well, if they wish, and it should have legal weight in parity with the Mental Capacity Act. Clinical supervisors should have a duty to consult it. The AS should be reviewed regularly, and the Nominated Person specified in it should remain in abeyance if someone stops being under compulsion. The greater role a service user is allowed in their own care, the better their chances of recovery, and compulsion could be less distressing for them if they can specify in advance treatments that were beneficial in the past, or conversely were particularly unpleasant.
5. Treatment Safeguards
ECT should never be given to a person who has capacity without their consent and only to a person without capacity if there is an immediate risk to life and nothing else has worked. It should not be permitted for under 16s. Doses above British National Formulary Levels, polypharmacy, and drugs used outside their product licence should only be given with a
service user's fully informed consent or if existing doses are not working and there is a life-threatening situation. Some long-term medication can cause life-threatening illness, (even heart failure in rare cases), so there should be a legal right to regular physical health checks for those on long-term compulsory medication, to pick up and treat, or alleviate serious illnesses caused by medication.
6. Independent Advocacy
There should be a statutory right to independent advocacy and to avoid conflicts of interest this advocacy service should be funded by central government - NOT the same local statutory body that imposes the compulsion.
7. Right to Assessment
A service user themselves, their NP or Primary Carer should have a right to request a formal assessment within a specified time, but if the service user is not thought to need treatment, (or compulsion), the person who made the request should be given a written explanation of the decision. Also, in any event, the service user should be offered services/support on a voluntary basis.
8. Care Plans and Consent to Treatment
Any treatment a person under compulsion suggests, or specifies in an Advance Statement should be considered first and provided if at all possible. The more chance a person has of getting treatments that they know are helpful to them, would lessen their distress and improve their chances of recovery.
9. Professional Roles
The new AMHP should not be permitted to come from a medically trained background. The new Responsible Clinician should only come from a medically trained background. Too much over-lap may confuse situations.
10. Ethics of Detaining People when there has been No Offence
Is it ethical or in compliance with Human Rights Act to use this legislation to lock up potential offenders? Predictions of dangerous behaviour are very unreliable and there are many kinds of potential offenders in society who do not have mental health problems - people with certain suspected mental disorders are being singled out. There has been no increase in homicides by people with mental health problems since community care, it has been similar for 50 years.