EXPERIENCES IN MENTAL HEALTH CARING

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

KITH AND KIN (Sixties Press 2004)

THE VOICE OF CARERS: MENTAL HEALTH IN THE LONDON BOROUGH OF SUTTON

FACILITATOR: AMANDA CUMMIN

Introduction

The Voice of Carers: Mental Health in the London Borough of Sutton was a workshop held on Thursday 18 September 2003 as an opportunity for:

• Carers of adults and older people with mental health problems to talk about their experiences

• Health and social care professionals to explain what services are available

• Both groups to work out how to build on what works well and improve what doesn't

Laura Johnson, from Rethink Merton and Sutton, gave the keynote address and highlighted the need for proper and useful information, effective support, a commitment to campaigning, which has produced results in the past and a wish list of things that need changing, i.e

                                        • Improved GP training

                                        • Better referral systems

                                          • More action on drug use

                                                • Better access to respite care

    The address was an effective introduction to the workshop as Laura's themes were re-emphasised throughout subsequent discussions.

    Following on from the key note address, the workshop was structured around three questions as follows:

•What happens?

Five real fife case studies (anonymised in all but one example) were read out by a combination of carers and professionals to highlight the diversity of local service issues which affect carers in Sutton

• What could happen?

Representatives from South West London & St George's Mental Health Trust, London Borough of Sutton Social Services and the Sutton Carers' Centre explained the range of services which are on offer to local carers.

• What should happen?

Participants moved into small groups to discuss the case studies by considering three overarching questions, as well as more particular ones:   What could local services have done differently in each particular case? What could the carers have done differently? How could both service and carers work together to improve what happens?

    Lucy Dean, a community artist, participated by producing images of the day inspired by the people present and their comments and stories. The resulting images will be used widely to raise the profile of carers' concerns. A reflexologist also provided massages to participants.

Case Study 1: Joan's story

Joan is a fifty year old hairdresser, married to Ron for thirty years, who has a family history of mental illness and was diagnosed with schizophrenia ii the 1970s following the suicide of his brother. At this time Joan feels that Ron had excellent care. Her GP knew the family well, and when Ron became "aggressive and paranoid" he was quickly sectioned, prescribed effective medication and was discharged within six weeks. Sadly he lost his job as an engineer and took a less stressful job as a shop assistant. A further relapse occurred when the medication he was prescribed was discontinued. After seeing a locum GP, who prescribed an alternative, Ron quickly deteriorated He was seen as an outpatient and was never as mentally stable as before. However, he was less sedated and able to take on a more demanding job as a security guard. At around this time, Joan remembers seeing a “student doctor” who told Ron he didn't have to take the medication. Up to this point Ron had been compliant with his medication. Joan still feels angry with this.

    Ron then became less insightful and wouldn’t go to the GP, partly due to a change in the doctor. Joan was desperate for help and was referred to the local mental health team via the Citizens’ Advice Bureau. For some reason, the CPN stopped visiting when Ron refused his medication. Ron became increasingly abusive, threatening, and paranoid. During one episode he called the police himself, who detained him for breach of the peace. He was acquitted but later he was assessed and sectioned. For Joan, this delay was in stark contrast to his treatment fifteen years previously and an extremely stressful time. This led to a period of depression for Joan who was effectively treated with anti-depressants.

    The family were then moved to an alternative GP surgery, although Joan does not know why. It has taken some time to build up a relationship with surgery that is hampered by Ron’s continued difficult behaviour. A CPN visits every three weeks to administer a “Depot” injection. Joan has only recently heard about the Carers’ Centre and, although Ron objects to her attending, she feels she can only carry on if she has some space for herself. She has recently had a carers’ assessment and is hopeful this will highlight her own needs particularly for regular breaks so she can continue caring for Ron.

Questions raised by Joan's story

1) What value does the support of family and friends have in the continuation of the caring role?  How can their involvement be supported and encouraged?

2) What are the issues for a health care professional in providing care for both a service user and a carer when there is conflict within the relationship? Should the same professional have to manage both?

3) What are the difficulties for GPs in managing people with mental health problems? How can they and their staff be supported in this role?

Case Study 2: Bill's story

Bill is a 61 year old retired English man who took early retirement in order to care for his 92 year old father, Wilfred. Bill is the youngest in a family of five and lived with his father. The pressures of caring for his father then caused Bill to have what he describes as a “nervous breakdown.” Bill’s father, who had agoraphobia for many years, was diagnosed with Alzheimer’s five years ago.   At this time Wilfred became increasingly dependent, often shouting, wandering and occasionally physically assaulting Bill. Bill started to feel “much stressed” and on advice from a neighbour, self referred to the Carers’ Centre. Being able to “let off steam”, talk to some else and get advice, especially on how to deal with his father’s behaviour, helped enormously. Friends from his local church who were professional carers complemented this support and this enabled him to continue caring for his dad at home. However, Wilfred refused to accept any support services, including home helps, meals on wheels and any offers of respite care.

    Late last year, Bill’s neighbours began building work and the constant noise caused a significant increase in Wilfred’s disturbed behaviour. Bill started to feel extremely down, constantly crying, unable to sleep and rapidly losing weight.   Eventually he was unable to continue in his caring role and emergency respite was organised by Social Services. After only one day the residential home contacted Bill, as they were unable to cope with Wilfred’s demands. This was the last straw for Bill whose GP advised him to get away and prescribed medication for himself. In the month he stayed away in consultation with Bill, it was agreed that long-term care in a nursing home was required for Wilfred.

    Bill remains on antidepressant medication but is “very happy” with the care Wilfred now receives. Wilfred is starting to settle at the nursing home and Bill makes regular visits. He finds it hard to fill all his spare time but helps out at the Carers’ Centre and has outings with them.

Questions raised by Bill's story

1) What are the methods already in place for supporting a carer’s emotional needs? How can these be built upon?

2) What were the area(s) that were out of service providers’ control that led to Bill’s breakdown? What could have been improved?

3) What can be done to support carers when the cared for refuses intervention?

4) Who should have the carer’s assessment when there is a mutually supportive relationship e.g. when elderly parents  provide emotional/financial support for their son who has mental health issues whom in turn provides practical support for his parents? Who should be responsible for deciding this?

Case Study 3: Robert's Story

Robert is a 60 year old father of three who has been married to Linda for 40 years. Following the traumatic birth of their third child, 25 years ago Linda developed a psychosis, which has since been diagnosed as Bi-polar Affective Disorder. Initially Linda was admitted to the regional Mother and Baby unit, where it became apparent that she was too unwell to care for her child. Robert found it a struggle to visit with 2 other children to care for and a hospital that was some distance away. The baby was placed in foster care whilst Robert cared for the remaining children. Robert’s GP was supportive and understanding. Financially his only option was to take sick leave. Even on Linda’s discharge, the only contact they had was with the social worker who came for “statutory visits” regarding their baby’s foster care. After a year, Linda’s progress was extremely slow and she was referred to a specialist team that ruled out any organic cause for her symptoms. After this she was seen as an outpatient by the specialist psychiatrist until he left, and she was referred back to the team in her locality.

    During the early 1980s, Linda went in and out of hospital, increasingly under compulsory order. Robert has never been able to return to work. At some point they had a voluntary sitter who gave Robert a chance to do chores. This had taken some work to put in place and when that particular sitter left it didn’t happen again. In 1984 following the development of CMHTs a CPN was allocated. Robert felt genuinely supported during this time. The CPN set out to involve Robert right from the beginning, spent time with them both and ensured he got the benefits he had been entitled to for some time. Linda also liked this CPN. Sadly, the following CPN did not have the same rapport with the couple and seemed “always to be in a hurry.” She discharged them, to Robert’s mind, when Linda refused to attend a day-centre and they have not had contact with the team since.

    Early last year Linda had a relapse that did not require admission. A referral was made to the nearest resource centre but was deemed unsuitable due to Linda’s arthritis. She now manages at an alternative venue but is currently too physically unwell to attend the centre. Robert believes this loss of contact has made her less mentally well and the pressure on him has increased. He gains support from fellow carers at a local support group and at the Carers’ Centre.

Questions raised by Robert's story

1) What services appeared to improve/worsen/stay the same during the history of this story?

2) How can changes to service users’ professional carers, affect a family’s care and how could this be managed most effectively?

3) What difficulties exist when providing voluntary sitters and how can this be successfully managed?

4) When there is a case for a carer returning to work being a break for them, how could services/benefit provision support this?

5) When a person is physically unable to attend a service, how can support be maintained and who is responsible?

Case Study 5: Mary's Story

"My very bright, promising, attractive and sociable daughter was up at university 24 years ago when I was rung by the police to say that she had “had a little bump on the head” and was in hospital. I rushed up to Durham to find her in a locked room, tearing the formica off the walls with her bare hands. She had run in front of two cars and the second had hit her. After a few days I brought her home, to recover from what was called a “nervous breakdown.” She later returned to college and completed her degree.

    The following 25 years have seen a series of hospital admissions, sectioning (with and without the attendance of up to three police cars) repeated suicide attempts (the most recent, two years ago, resulting in a fractured vertebra) broken relationships, financial crises and the birth of a baby, since adopted within our family: and for me, years of trying to prise drug pushers and alcoholic hangers-on out of my daughter’s life, endless hours of sitting in smoke-filled patients’ lounges, waiting in corridors to see doctors who would barely discuss my daughter with me because she was “an adult”, attending countless mental health meetings and support groups and enlisting the help of social workers, London Borough of Sutton Housing department, the CAB and so on, and infinitum.

    However, I am happy to say that in the last two years things have changed very much for the better. My daughter is now cared for by the Assertive Community Team [ACT]. I am acknowledged as her carer and involved almost as a member of the team. Her care worker makes herself available for the frequent contact that my daughter needs. A great deal of thought has gone into her medication (which is not easy, as her body reacted unfavourably to Clozaril.) She has stabilised by the ACT to attend courses at SCOLA and Merton College and rehabilitation schemes at Garth Road.   Her real personality - warm, generous and sociable - has re-emerged, and I am beginning to believe that she is capable of an independent life of quality.

    This has been a very hard quarter of a century, in which my concerns and anxieties have centred on my daughter’s condition. My own survival is due, I think, to several factors:

• Good, compassionate friends and the support of my two sons and some other family members

• In the early days, the information and support group provided by the National Schizophrenia Fellowship (now named Rethink)

• The support group for carers of people with mental health problems held monthly at Sutton Civic offices

• My own survival strategy which includes six years’ counselling by the then Sutton Pastoral Foundation (now called Sutton Counselling)

• Membership and involvement with a very supportive church

• Varied activities and courses at SCOLA

•Physical exercise, latterly including the exercise class held for carers at Sutton Hospital

    But the most important is the excellence of care that my daughter is at last receiving (and I suspect that the most important thing for most carers is the quality of care received by their loved ones) and the courage of my daughter herself, who has persevered in her struggle to recover a life from what, for many years, was a very painful existence. I am very proud of her.

Questions raised by Mary's story

1) Drug and alcohol abuse is prevalent amongst mental health service users. What support is needed to help carers cope with these issues?

2) The ‘everyday’ aspects of life (e.g. going to college, getting a job, having a baby) can be extremely difficult for mental health service users and therefore put extra pressure on carers. What support could, or indeed should, the statutory services provide carers during these times?

3) How could churches and other institutions outside of the ‘standard’ health/social care organisations be supported in their help for carers?

4) Mary’s story highlights the improved ‘quality of care’ in recent years.

How can this be maintained?

 Issues highlighted in the workshops

Group One

• Early treatment is best

• Co-ordination across services is crucial

• No benefits in delaying admission

• Consideration of how the care co-ordinator could act as a mediator between the carer and client in difficult situations, including being seen as neutral and be seen as more approachable for the patient rather than a relative.

• Needs should be addressed in order to feel included, regardless of the level of contact

• More education and training of mental health staff in resources available locally so that they are both confident and knowledgeable or know a colleague who is.                             

• Important to be aware of national organisations. LB Sutton might need to develop a link worker. Although there is not a large minority ethnic population locally, services have been developed in other areas to address cultural differences. Professionals should ensure that they have a working knowledge of local needs and what is available to answer these.

• Carers may need support to be more proactive in certain situations although this would not be easy for everyone.

• Communication and information is crucial for everyone involved in these kinds of situations.

• Clear willingness for all involved to communicate with one another.

Group Two

• A quick response and correct diagnosis is important because the carer wants to know the client is in safe hands

• Services should listen to the carer and act upon their worries, e.g. it may be appropriate to change medication                    

• More OT and use of advocates, if necessary, would benefit both carer and client

• It is important to be honest, inform the carer of the real situation but also be as positive as possible

• A Crisis Centre would be useful where there would be immediate help and even the possibility of self-referral

• A care plan should be place for everyone

• Clarity about the responsibilities of different groups of professionals is important, e.g. is it appropriate that a CPN closes a file

• An advocate to help the carer through the system with information about rights and services would be useful

• Consistency of services is vital

• Co-ordination between the hospital, CPN and GP is necessary including involvement of the carer as appropriate

• Information and action remain crucial

• Overall continuous education is needed for all involved

Group Three

• Problems and difficulties concerning clinician, user and carer confidentiality

• Professionals should endeavour to get user agreement to involve carer in consultations.

Group Four

• The input of day and resource centres is crucial

• Could voluntary sitters either be a statutory service or have sufficient guaranteed funding?

• Need to ensure that appropriate effective support is provided by specialist mental health services

• Need to sustain GP input, for instance in dealing with physical problems

• Enough resources to do all the right jobs at the right pace and with the right attitude including co-operation between all the providers.

Group Five

• Drug abuse and vulnerability: while it may not be possible to prevent drug use, but education in schools is helping and information to carers on recognising symptoms would be valuable.   More effort by universities at prevention of pushers and warning of the dangers would be valuable, since first episodes so often occur there.  Prison is another point where mental health clients, often inappropriately held on remand or after sentence, are vulnerable. Prison authorities should listen to carers, while there should be much closer supervision of actual taking, rather than just administration of prescribed drugs.

• More help and information is needed for carers of those who have lost the confidence to work: voluntary organisations and social services can help, but carers should know about Springfield’s schemes and it is time Sutton had a Welfare Rights worker, promised some time ago. More information is needed about entitlement to carers’ and patients’ allowances. SCILL might be involved, using the Disability Act.

• Although there is a lot of help for those on enhanced care plan, there is little support for patients and their carers if their condition is not as serious. It is worth going to Social Services to see a consultant more than once in 2 months if symptoms give rise to concern.

• A mental health worker for each surgery would be of great value, as would an Older Person’s mental health liaison service at St. Holier Hospital.

• Importance of religious and humanist groups and other groups not specifically concerned with health matters, such as Rotary, women’s organisations, etc.

• Sutton Carers’ Centre is the focus for information and support and should be helped with publicity, extra workers and more funds.

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