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EXPERIENCES IN MENTAL HEALTH CARING

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  BLOOD AND WHITE WASH

KITH AND KIN (Sixties Press 2004)

WHO IS A CARER?          ARE YOU A CARER?         CARING ABOUT CARERS  

Mental health rather than obesity or the demography of old age is the true unexploded bomb of the 21^st century. The stigma of mental illness needs to be removed and current controversial issues need to be addressed. While the government has insisted on ‘user/carer involvement’ trusts like Camden which has the highest suicide rate in the UK, pay only lip service to the idea.

SOME NOTES FOR MENTAL HEALTH CARERS 

I have been a mental health carer for over twenty years. The National Schizophrenia Fellowship has recently begun some local workshops and the government passed the Carers and Disabled Act 2000 which has given carers some recognition of their role and established that they must be ‘listened to’. Carers have a right to a ‘Carer’s Assessment’ from local social services

departments, though what this may achieve in practice remains to be seen.

During the time I have been a mental health carer I have looked in vain for some basic guide book and in frustration I decided to write some brief notes myself based on experience and that is something I, like most mental health carers, have more of than I would like and much of it very negative. Sitting in A&E depts with a patient waiting for a bed to be found (my record to date is eight hours) is something anyone can understand, as are long periods waiting by a phone but the levels of anxiety an mhc can suffer and the stresses they are often subject to and which can cause mhcs to suffer extreme mental distress and end up seeing a psychiatrist themselves are not.

If a mhc tells people outside the mental health system how their day-to-day lives are caught up in a series of crises the listener tends to recoil in horror. A friend from my childhood simply stopped calling me because she became terrified that someone in her remarkably sane family might become ill and she would be put in the mhc role.

This is how it usually starts. A family member develops a mental illness - usually manifested in the form of breakdown and possibly a hospital admission - the team looking after the patient will expect a relative to take on the mhc role interfacing with nursing and medical staff, providing details of the  family history, taking the patient off the ward for periods and taking very considerable responsibility for the patient once they have been ‘discharged into the community’ which may vary from a few days to many months after the admission.

No training is given and beyond the phone network of local carers groups that is the situation mhcs usually find themselves in, at at the very deep end, we need to be clear about that.

There are ‘Carers Centres’ of varying quality but one I had the misfortune to encounter was run by a draconian manager who in my opinion discriminated against mhcs as not being ‘real carers’ (i.e. carers for the physically disabled). My complaint against the person involved has dragged on for nine months and has yet to be resolved.

When patients are discharged they must by law be provided with a CPA discharge which is called an ‘enhanced plan’ if the  patient is severely ill his plan lists various facilities the patient has been referred to (eg. day hospitals, ‘drop ins’ and day centres) treatment (eg. medication and  psychotherapy) and a series of phone numbers for members of the mental health team assigned to the patient. Most important is the key worker i.e. the mental health professional designated to carry overall responsibility for the patient’s welfare on a day-to-day basis.

The key worker may be a CPN (Community Psychiatric Nurse), but there is a national shortage of CPN’s and another member of the  mental health team may take on this role.

Useful as a rule of thumb guide qualifications may be, in a crisis it is the ones who really put themselves out to help that matter.

There are some very good consultants but also sadly, some very inept ones. Often those in the latter category are locum consultants ‘filling in’ for a few weeks to a few months while a permanent appointment is being made. Nationally there is s shortage of 400 consultant psychiatrists and the most frustrating situation of all is when one locum is replaced by another ad infinitum. Some locums are passable but some are dreadful and if you feel your patient is suffering poor quality treatment due to an inept consultant you should make your concern known to the care co-ordinator, whose name and phone number will be found on the CPA discharge plan you will have been provided with a copy of.

If you get nowhere make a written complaint via the complaints manager to the Chief Executive of the Mental Health Trust responsible for your patient. If this doesn’t work go to the Medical Director of the Trust and to your local Community Health Council (soon alas to be abolished). If all else fails contact the Strategic Health Authority, whose telephone number will be available from your local library.

The mhc needs to know as much as possible about mental illness. Start with the appropriate section in your local library  Once you get the hang of the basic vocabulary you’ll find it much easier to get a hearing with the mental health team. The more you read the more notice you’ll be taken of.

Since writing this article I have discovered ‘MENTAL ILLNESS- A handbook for MENTAL HEALTH CARERS’, edited by Rosalind Ramsay. Published by Jessica Kingsley at £15.95 (ISBN 1-85302934-3) This is an excellent and well-researched book (over 300 pages) by a large range of specialists from the mental health field. An absolute must for all mental carers. The one thing I can’t find is a section on ‘How to Make Complaints’. I’ve yet to meet the carer who doesn’t have any and they can - and indeed must - be resolved. If this book runs to a second edition - as surely it will - this is an area that needs to be addressed.

Barry Tebb

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One Carer’s Story - Barry Tebb       Schizophrenia - A Carer’s Journal - Mike

     Schizophrenia – A Mother’s Story – Georgina Wakefield                         My Journey Of Sadness – Stan Hagon

                                       The Voice Of Carers – Amanda Cummin           Yemeni Carers’ Stories – Debjani Chaterjee

   Beyond Our Reach, But Not Our Love – Brian D’arcy                        Carry On Caring – Emily Machin & Lucy Machin

     Enigma And Other Poems - Georgina Wakefield                        Killingbeck Drive – Brenda Williams

      Searching The Beyond And Other Poems – Daisy Abey     Sharp Edge – Daisy Abey     The Long Good Bye – Barry Tebb

      Looking Back – Barry Tebb     Nameless In Camden – Brenda Williams      Autobiography – Simon Jenner      

The Sick Image Of My Father Fades – John Horder      Are You A Carer?      Caring About Carers