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How the proposed mental health bill will affect those who use mental health services
For the past 17 years I have been receiving treatment for bipolar affective disorder, or manic depression. I have received treatment both as voluntary patient and under section of the Mental Health Act, in hospital and in the community.
I would like to talk about two aspects of the current proposals in the Bill namely Advance Statements and Nearest Relative.
For the first 11 of the past 17 years, there is no doubt that I was a 'revolving door' patient. I would have 2 or 3 admissions a year to a psychiatric ward, with each admission lasting between 4 and 8 weeks. This meant that some years I spent up to 6 months in total in hospital.
I regularly became actively suicidal and at least once a year I would need to receive emergency medical treatment at my local hospital. My prognosis was decidedly poor and I had no realistic expectation that I would ever have anything like the quality of life I had before I was first diagnosed with my illness.
But I have not had a hospital admission for the past 6 years. Neither have I made any attempt to take my own life during this time. I’ve even more delighted and I have to say, extremely surprised myself, to be able to tell you that for the past 3 years I have not even had to take anti-depressants or mood stabilising medication.
Don’t get me wrong, I still suffer from recurrent, severe depression and at times I experience suicidal thoughts, but these days my periods of being unwell are both shorter in duration and far less frequent than before.
So what’s happened? Have I received a miracle cure? Was I perhaps mis-diagnosed in the first place?
No. Six years ago a psychiatric nurse sat down with me and told me that if I wanted to learn to manage my illness better and to lessen the number of admissions to a psychiatric hospital I had each year, it was essential that I started to take responsibility for my illness. The nurse suggested that we look at the early warning signs and symptoms that signalled a relapse in my mental ill health, decided what action to take when and what amount of risk was acceptable to both of us.
We drew up an Advance Statement - and the most recent version was updated only 2 months ago by my current psychiatrist and myself. Of course, we both know that its not legally binding - yet! - but none-the-less we stick to what WE have agreed to regarding my treatment should I become unwell again and what my care team can and cannot provide at these times.
Its not a complicated document, although I am aware that it may need to be more so if it becomes legally binding. It covers issues such as:
When I do become unwell these days I am no longer frightened to ask for help or to access services because I know what care and treatment I will receive if I do. My care team know what to take account of when planning what care they can give me and they know that by taking into consideration my wishes (which they have agreed to), I am far more likely to seek and comply with treatment.
Five years ago I had to find a different mental health trust to receive services from. I showed my new consultant psychiatrist this Advance Statement and he agreed to take what was written in it into consideration should I experience a relapse in my mental health. Over these 5 years, I have accessed services including the Home Treatment Team and my Advance Statement has been modified accordingly. My new mental health trust has never asked for my old medical records to be sent to them and both my psychiatrist and the HTT have said that my Advance Statement is the most useful document they have to refer to when offering me treatment.
And this is not a unique situation - I know that many psychiatrists, care teams and patients all over the country are using documents like this already because they realise that Advance Statements are not only effective models of good practice but that they aid a person’s recovery and encourage them to continue to engage with mental health services.
You don’t need me to tell you how much money this piece of paper has saved the NHS now that I no longer occupy beds in a psychiatric ward, or take up time and resources of my local A&E department. And even my GP’s drugs bill has gone down too!
And what has this cost the NHS? 4 x 1 hour sessions with a Community Psychiatric Nurse during which time he helped me to understand my illness, to recognise my early relapse signs and when I need to seek help, and 1 hour a year of my psychiatrist’s time when we review the details of my Advance Statement.
Achieving stability and a greater insight into my illness has not been reached by my having to be sectioned or by having to receive compulsory treatment, but by giving me some responsibility for my illness and some say in how I am treated when I become unwell.
Since 2005 I have had experienced 2 short (2 or 3 weeks in duration) periods of severe depression; this compared to the 5 or 6 months I used to spend in hospital each year means that I have managed to continue to be employed and play a useful part in society and, of course, contribute to the country’s overall economy. I work part-time and I am also an Expert Adviser on the board of Shift, the government’s mental health anti-stigma and discrimination programme. Infact, I was at the Home Office talking to people about Shift and discrimination in the workplace only last week - proof that there can be life after many years of being a 'revolving door' patient.
My mother is my nearest relative but she is 76 years old and lives 150 miles away from me. My sister has an eating disorder and is currently in hospital receiving treatment for it - she is likely to be there for at least 6 months. For these reasons, I have changed my next-of-kin to someone who lives close to me, someone who knows me well and with whom I have a good relationship. This person not related to me in any way.
My mortgage provider and other financial institutions have accepted this change as indeed has my GP. Therefore as far as anything to do with my financial assets, my property and my physical health is concerned this non-blood relative will be contacted, but when it comes to my mental health and my nominating the same person to be contacted and consulted about my care and treatment should I become unwell and/or sectioned is impossible. This is just not logical.
And the proposals in the Bill make the process I would need to go through to change my 'nearest relative' or appointed person even more illogical. If I committed a crime and was found to be suffering from a mental disorder at the time, or subsequently at the time of my trial, I would be deemed unfit to stand trial. Likewise, I would not be seen as a credible witness in a court of law and I would not be considered suitable for Jury Service. So why on earth is it being proposed that should I become unwell and I am sectioned, I should go to a court to change my nearest relative?
If I am not considered fit to take part in any other court proceedings, what judge or magistrate is going to say that I am of sound mind enough to change my nearest relative? It just doesn’t make sense. And how long will the process of applying to a court to change my nearest relative take? If I am sectioned tonight, then under current mental health law and practice my nearest relative should be notified of this fact within a few days. If the new proposals are accepted, it will be impossible for a court hearing to be convened within the next few days and therefore impossible for me to change my nearest relative.
And how much will all these court appearances cost the government? Surely it would be far simpler and certainly more cost-effective for me to nominate a person now, someone who my care team agrees to, whilst I am well. It would certainly give me the confidence to approach services if I become unwell, knowing that the person who is closest to me as far as geographical distance, knowledge of me and my trust of them is concerned will be there for me as opposed to my worrying about who will fulfil the important role of being involved in my care and treatment should it become necessary.
I’m not asking for huge, radical changes in the legislative or psychiatric system - advance statements and nearest relative/nominated person practices already exist in other legislation - but I am asking you to look at what is simple common sense; a common sense that will undoubtedly enable thousands of people like myself feel comfortable and confident when seeking treatment for our mental illness.
This is an opportunity to make a real difference to not only patients lives, but also to the effectiveness of the clinicians and professionals involved in providing us with the most appropriate care and treatment available. I like being well - don’t you?
Andrew, 55, is from Sussex, where he is an active mental health campaigner: "I was first admitted to a mental hospital in 1974. With a diagnosis of paranoid schizophrenia, I experienced the revolving door of unsatisfactory discharges followed by readmissions while under the care of two asylums. This lasted until the implementation of the community care legislation in the early 1990s.
"During my time in the old asylums, I was Sectioned three times, once under the 1959 Mental Health Act and twice under the 1983 Act. The first outcome from a Section meant I had to continue with regular, debilitating and humiliating injections in the backside. I often found it better to live as a vagrant than to submit to life as a psychiatric patient.
"In 1991 I failed in my appeal against a Section, but the bargain I struck was to go for the Honours part of an Open University degree, and I managed to negotiate an acceptable oral medication regime. Since then I have not been an inpatient. This is not due to any magic bullet that has cured me but because of a more humane ethos with care in the community.
"I was resettled into the community under the new Community Care Act, where I obtained an Honours degree, and went on to gain a Master’s degree in Social Policy. I have kept up the oral medication regime and have not suffered a relapse.
"Service users’ lives are still tainted by ignorance, prejudice and discrimination, and the government’s mental health proposals will do nothing to improve that. In fact, although members of the government maintain that their proposals will streamline mental health care, I believe the proposals will highlight who and where mental health service users are in the community. This will do nothing to stop the demonisation of people with mental health needs.
"The administration of Community Treatment Orders (CTO) will see to that, especially if a posse of social workers with police backup arrive regularly at a certain flat. This will lay that person open to even more stigmatisation in their community, and perpetuate the false notion that crime or violence is a symptom of mental illness. The combined effect will be enough to prevent someone with a CTO from ever becoming socially integrated.
"Reciprocity and therapeutic treatment have played a crucial part in the good and bad of psychiatric regimes I have been under. Where things have started to go right for me, psychiatric treatment has been therapeutic and I have had some expectations of doing OK.
"Where these have been lacking, I have continued to live in desperate straits. It is deplorable that the provisions of the new proposals for legislation exclude that treatment should be therapeutic, and place onerous restrictions on service users. I would not blame people subject to the provisions of the new proposals, if they, like I once did, decided that life on the streets would be better.
"Let’s keep community care and let’s be enlightened in the way we treat people who have to be detained and given psychiatric treatment against their will. Let there be a bargain for everyone affected, so they will be required only to receive treatment that will actually do them some good. Let people be given the hope of aspirations suitable to their personal circumstances, to enable them to overcome the obstacles that have by then surely begun to pile up around them. I can testify that this way works."
Marion, 46, is a mental health campaigner and activist living in London. She has managed community care services for people with learning disabilities, offenders and currently works on a project involving adults with learning difficulties. Marion also fostered a child who has the learning disability Williams syndrome, who is still part of her family’s life, 20 years later.
Marion, who has been diagnosed with depression, says: "I started having problems relatively gently. I remember exactly when it happened.
"Someone sent me an email at work just over three years ago to rearrange a meeting and I started crying and crying, and I couldn’t stop. I found that the only way to stop crying in public, and the one thing that helped, was self-harming. It was like magic.
"In 2004, my partner of 20 years walked out on me. We had had a civil registration ceremony and organised a 20-year anniversary party. Sylvia told me she was leaving me, and at the time it was completely out of the blue. Looking back, I can see I missed signs.
"I was able to carry on functioning, and perversely self-harm was a wonderful coping mechanism. Technically, it is dysfunctional, but for me, it was very functional.
"Self-harm has several functions: it plays out what I’m feeling emotionally, I am able to resolve things and ostensibly make them better by treating a wound. It all revolves around control - because self-harming by cutting or overdosing are reversible, I feel in control." Marion was admitted to hospital under a Section of the Mental Health Act in 1995: "Once I calmed down, I found I was very well treated."
Over the past few years, Marion has learnt alternative techniques to self-harm, including calling the Samaritans or her psychiatrist: "I have fantastically supportive friends and family, but I don’t call my friends when I’m feeling very low, because I don’t feel it’s fair to ask them for that kind of support."
Work has also been crucial in Marion’s recovery: "It has been the main motor in keeping me going, and I find that working part-time gives me the flexibility I need to manage my illness. My current boss has been very supportive, and I think the qualities you need to be supportive of mental health issues are exactly the same being a good manager in general."
Marion is also prone to instantaneous mood swings which last a few hours. She has found that various talking therapies have been very helpful in helping her through her problems, especially CBT: "I’m very lucky that I see my psychiatrist once a week for psychotherapy, and have a very sympathetic GP."
Marion has nothing but praise for the support she has had from the NHS, and now works on the Star Wards campaign, which aims to animate acute psychiatric wards, transforming them into places where patients actively contribute to their own recovery.
She says: "The campaign offers practical solutions to improving people’s quality of life on psychiatric wards, mainly without extra cost, such as providing facilities for visitors. Patients as well as staff need wards to be a pleasant place to be treated and work, not a place of dread."