Exemestane

To get a broader feel for the experiences of mental health service users, Mental Health Nursing put out an appeal for individuals to respond to three questions about their experiences and expectations. We would like to thank everyone who responded and shared their lives with Mental Health Nursing's readership. It is an extraordinary mixture of hope and despair, positive encounters and painful disillusion, confirmation and disaffirmation. Yet all of it tells us about the lives people live and offers ideas about moving forward.

The three questions were:

1.How have you experienced mental illness?

2. Has professional mental health intervention made your condition worse, better or had no effect?

3. What are your expectations for the future?

We asked respondents for their age, rough geographical location and photo, if they were agreeable.

Lesley Herbert (34) Southampton

1. I have experienced episodes of significant mental distress over a period of some years which have been at different times diagnosed as depression and adjustment disorder. The source of my distress has been sexual abuse experienced in childhood and adolescence and latterly traumatic events in my adult life which have re-triggered emotions. My distress has manifested itself in some of the classic symptoms of depression but particularly in self harming behaviour and suicidal intent (including making attempts on my own life). The risk element is, therefore, the element that has most significantly brought me into contact with mental health services.

2. I believe that the intervention of mental health professionals (alongside a first class GP!) has, by and large, been of positive benefit in facilitating my 'safe passage' through periods of crisis, Whilst I retain insight throughout periods of distress I make significant use of professionals in managing my safety and sharing the responsibility. I have been fortunate enough to have contact over several years now with a number of exceptional staff who have worked creatively in supporting me to grow and develop. I am aware that I make considerable demands on staff who work with me in times of crisis and that their ability to hold boundaries whilst offering a high level of input are critical in my recovery. I have used community services, day hospital and inpatient services. I would say that all of these have been variously helpful to me although I am aware that not all service users share my positive experience.

3. My expectations for the future are that I may need to continue to access services for support and assistance with managing my feelings and associated risk at various times. On the basis of my experiences to date I will be happy to access appropriate support in a negotiated fashion. As a service user I know that whilst services can on occasions 'get it wrong' (can't we all?!) there is also exceptional practice that exists and this continues to motivate me professionally to work towards enabling this excellence to be extended...

Beryl Richardson (74) Poole, Dorset

Mervyn Richardson answers on behalf of himself and his wife.

1. My wife, Beryl, has Alzheimer's disease and vascular dementia. She received the first NHS prescription for Galantamine (Reminyl) in March 2001 and is still taking it with positive results.

2. Yes (better) - but only after a significant 'battle' because of 'post-code' prescribing in Dorset.

3. As my wife has moderate to severe Alzheimer's disease, I foresee only a very poor future. There is the additional problem that as my wife is now in full time residential care, I no longer receive any support from a community mental health nurse or Poole Adult Social Services. Beryl also has a breast tumour! Exemestane has been very successful.

Keith Halsall (40) London

1. I was deeply wounded in infancy and childhood

2. When statutory services have collaborated with me they have been helpful, when not they have often made things worse.

3. My plans for the future are to continue my healing journey which, sadly, doesn't involve statutory services.

Emma Harding (29) London/South East,

1. I have experienced mental illness as an interruption but also an inspiration and motivator in my life - my experience of schizophrenia has taught me a lot.

2. Mental health professionals have helped a great deal on the whole, though it is important to be aware of the biases each has in terms of their interests and training. I have learnt most from people when they have been colleagues, either mental health professionals working alongside me or other service users (also mental health professionals) recovering alongside me.

3. My expectation for the future is that there is a long steep road to climb to improve the lot for service users but the boundaries between who is the provider and receiver of services (us versus them) is slowly eroding (thankfully).

Chris White (38) Glasgow

1. Between 1995 and 2002 I suffered from severe depressive episodes and frequently self-harmed, spending far too much time in psychiatric hospitals.

2. Being told my self-harming was attention-seeking by medical professionals made me feel invalidated, and my spur to recovery was being told I would never work again. Receiving support through health professionals to look at building towards employment was the most effective medical intervention.

3. Hopefully I don't have to face relapse and I can continue to rebuild my career, moving further away from my last hospital admission in December 1999.

Jacqueline Carey (56) north coast of Northern Ireland

1. With great joy, great fear and a lot of feeling overwhelmed but somehow struggling through, which, in retrospect, makes me feel brave.

2. The intervention of professional mental health services has made my condition better, worse or had no effect at different times in different situations, mostly depending upon the personal connection or absence of it and respect or lack of it.

3. I expect that, in the future, the journey into madness will be seen as useful for social evolution, welcomed not feared and that instead of being cut off and made different, it will be in a respected 'us and us' situation instead of 'us and them'.

Ian Rogerson, Hampshire

1. In 1989 I was admitted to hospital for an emergency gall-bladder operation. The operation went wrong and had to be repeated six months later. The cumulative effect was to leave me with adhering lesions which caused extreme pain, this added to an already existing problem with arthritis. After a year of attending the pain clinic I was referred to the department of psychiatry because I was suffering with chronic depression.

2. For the first of many stays, I was treated with large amounts of chlorpromazine which left me comatose. My wife described me as a zombie. I had many stays on the acute ward but nothing seemed to change other than I became a cabbage. After one particular visit to a consultant he decided he wanted me back on the acute ward. No beds were available in the authority so he arranged for me to go to our local Priory hospital. Within 24 hours of arrival he organised a complete physical check up. As soon as he got the results he informed me that my present combination of drugs was toxic. With my agreement he stopped all medication putting me on methadone until I had transferred to painkillers which were adjusted until they reached just below my pain threshold.

I was put on anti-depressants which would have no side-effects. At the same time, I was introduced to concentrated, one-to-one and group therapy run by the nursing staff. Slowly I came out of my stupor and began, albeit at a very basic level, to function again. After ten years of living with a cabbage my wife decided she could tolerate it no more and filed for divorce. Our marriage of 39 years was legally terminated. My GP introduced me to our local branch of Mind at Marcella House. For the first time in all these years I met a truly remarkable group of people, who seemed to have some understanding of mental health, how to relate to patients, and how to intervene to prevent patients ending up on acute wards.

3. As life stands, at the moment, I cannot possibly project my thoughts into the future other than knowing at some point I am due to have a left wrist fusion and left knee replacement.

At the moment I have to live each day as it comes. I dream that when the medics have finished with me I might be able to rebuild some kind of relationship with my dear wife, children and grandchildren but that possibility is only a pipe-dream.

Now that I have had three fingers of my right hand returned to me, by a wrist fusion I have started to write again, when I feel able. So far I have produced a paper for the local health authority which has resulted in 18 policy changes at the department of psychiatry. I am also up to chapter 11 of a book which I am writing, about my experiences in mental health.

Susan Lee (51) Surrey

1. I have suffered on and off for 30 years since I began teaching!

2. Professionals have helped over the years - particularly CPNs who really listen and give practical advice.

3. I envisage my medication keeping me fairly balanced but sometimes despair that I can never anticipate when the blues will strike!

Kevan Gaunt (45) Nottingham

1. I have had depression for 20 years.

2. The intervention of professional mental health services has had a mixed effect, overall, I think it has made it better.

3. After quite a struggle I am seeing some light at the end of the tunnel.

Helen Gilburt (30) SW London

1. I have experienced the highs and lows of mental illness from hospitalisation, medication and discrimination to shared experiences with other users, and learning what a strong person I am.

2. Intervention of professional mental health has had little effect on me, however intervention of individual professionals has made a real difference to my life.

3. Take one day at a time, but in my dreams I will love myself and know I am loved by other people.

Eve Clark (51) NE Lincs

1. I had depression with psychosis.

2. The first approach with the GP was a disaster. I was accused of wasting their time and making it all up. Consequently I waited a further 12 months before seeking help again and was much worse. I did not trust the GP and seeking help without him was extremely difficult. The psychiatrist was great but I feel I have been put on medication and left on it too long. I feel fine mentally but the side effects are devastating and I feel I need a review but there is little hope of that at the moment.

3. I hope to put it all behind me and get on with life.

Liz McCarthy-Young

1. I have experienced emotional distress in terms of my life being halted by suffering anxiety states with accompanying depression.

2. The intervention of mental health services has made my condition more understandable because of the counselling I received from my mental health nurse, anti-depressant medication and finding out I was very anaemic also made a difference. As part of my recovery, I was recruited onto a project at a university to work as a service user co-researcher; this was arranged between my mental health nurse and a researcher. The researcher was very kind and understood what it is like to suffer with anxiety, she made me feel safe and I felt that my knowledge and skills might be beneficial to the team. Mental health problems were accepted. The project was about service users' experience of a primary care mental health service. I felt that the research was important and it would mean that my psychology degree could be utilised. I felt that there would be some purpose to my life. My confidence grew as I realised my skills were useful in creating a database, performing data entry and carrying out analyses which helped the researcher with her work load.

3. My expectations of the future are that it's going to be very difficult, I am not working now and will have to complete the rest of my recovery by myself as counselling and medication can help only to a certain point.

Sally Vaughan

1. The most debilitating thing about mental illness is other people's attitudes.

2. My 'condition' is that I live a full and rewarding life, which I believe is due in equal measure to my own determination and the kindly interventions of mental health services.

3. My expectations are much the same as anyone else's: health, hope and happiness.

Connie Perris

1. I am a mental health service user with manic depression. My experience of mental illness has been mixed - on the plus side, it has taught me what really matters in life and who my real friends are, and on the negative side, it has exposed me to unthinkable misery and abuse.

2. Nurses have played their part in this. The finest have comforted and supported me without making me feel judged. The worst have been a disgrace to their profession, and a shame on our society. On a lighter note, my favourite comment from a CPN was that if she were me, she'd kill herself. (It's OK, she wasn't advising, just empathising.)

3. If you could change one thing in mental health nursing, it would be to encourage mental health nurses to have the courage to speak out against those colleagues who are doing wrong.

Ann Freeman (66) NW London.

1. As someone who cares about her son with a diagnosis of paranoid schizophrenia.

2. Better, worse, and no effect...over three years.

3. Will have to "fight" for good outcome.

Peter Raiswell (44) Norwich

1. Schizophrenia destroyed my life. I lost my job and work colleagues in 1988 and experienced social exclusion.

2. The GP was very slow and I went through hell before I was sectioned. I went downhill after I was in a poor quality Mind hostel. I have had more support in recent years and got better but I am not as good as when I first came out of hospital.

3. I pray I will make some good friends and make a life for myself. I hope to do some part time work. But I have some bad habits from being in the hostel including getting up late and low motivation.

HOW WE MET

I first met Keith...

I first met Keith Coupland when another voice hearer, Steve, invited me to the voices group. My initial impressions of Keith and the group were of enveloping warmth rather than barriers to inclusion. Keith's enthusiasm was rather overwhelming and I was soon lost in daydreaming (my favourite childhood hobby!). This was seen, understood and turned to humour that the entire group, including myself, found funny. My relief must have been visible!

The following week both Keith and the co-facilitator, Vicky, were present. The vitality and harmony in the group led us to the forefront of psychiatry - thinking about recovery. There is still a personal energy within each member of the group, which is given momentum from the dedication and personal friendship of Keith and Vicky, (two very disparate characters!) who work so well to champion the validity of our experience and have faith in our ability to move forward. Keith became more and more interested in my personal (and long) journey in psychiatry. I was amazed and fearful when he asked me to present my experiences to a group of psychiatrists and psychotherapists. When my contribution was received with such interest I still found it hard to believe that I was so valued, until I saw the feedback was better for me than Keith's!!

When I first met Tim...

I first met Tim Cuss when another voice hearer, Steve, introduced him to the Hearing Voices Group. Tim was tall, a little older than myself (in his late forties) and rather dishevelled. Steve had spoken to Tim in the common room and was aware that Tim was hearing voices. Tim had never spoken about his voices before because he felt he had been discouraged from doing so when he was in hospital.

Tim was rather shy and hesitant to begin with and had difficulty describing the problems he experienced from voice hearing. He was amazed that some people do not hear voices as he thought everyone did and he was the only one unable to cope with them. Within a few weeks Tim was expressing his experience so clearly that I asked him to accompany myself and clinical psychologist Eric Davis to talk to a group of psychiatrists and psychotherapists about voice hearing. The feedback for Tim's contribution was better than ours as professionals and this had a great impact on validating Tim's self and his experience. He has hardly looked back since and he has been one of the lead speakers at a national conference and at the Trust's AGM.

Copyright Community Psychiatric Nurses Association Sep 2004
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