Supporting carers for people with mental health problems: the caring journey funded by the Big Lottery Fund Krayer, A., Seddon, D. & Robinson, C.A. Centre for Mental Health & Society Roberts, A. Carers Trust Wales ESRC Seminar: Carers in the 21st century - developing the evidence base, 3 June 2013

Context Mental illness affects about 25% of all people at some time during their lives worldwide. 1 UK estimates suggest that 1.5 million carers support someone with mental illness or dementia. 2 The cost of informal care provided for people with mental health problems by relatives & friends has been estimated at around £3.9 billion in England 3 & £251.9 million in Wales. 4 Although there have been a raft of policy & guidance documents during the last decade advocating the involvement of carers in care decisions & treatment, carers are still experiencing social and personal exclusion & often feel ignored by services.

Method Survey data from eighty-one carers In-depth interviews with 36 carers 12 carers were re-interviewed approximately seven months later. Time 1: biographical narrative interview method developed by Tom Wengraf 5 Time 2: Semi-structured Participants:  27 females and nine males; age range 37 – 79 years  24 interviewees lived with the person they cared for  11 interviewees were employed and 14 retired

People with mental health problems

The caring journey There is a temporal element to the caring experience. 6 Carer experiences may vary according to:  No. of years of care-giving experience,  Stage of the mental illness,  Level and quality of support from: professionals social networks nature of their relationship with the care-recipient.

Before diagnosis and early involvement with professionals Realisation that something is wrong & help needed Carers start looking for help & support to stop things from getting progressively worse and to avoid a crisis; however, often carers must wait until a crisis occurs before professionals intervene As GPs are often first port of call they need adequate training & understanding of the nature of mental health illnesses

Confirmation of mental illness and diagnosis Often linked to a period of hospitalisation for the care-recipient Expectation of explanation & treatment or even a cure Confidentiality issues Need for good communication between carers and professionals Information about the illness, what to expect and where to look for help and support is needed Emotional support is important

Realisation of permanency and unpredictability of the illness Accompanied by coping with good & bad periods; the potential of disillusionment with & disengagement from the system is high Carers have to come to terms with relinquishing certain hopes & ambitions for themselves & the care-recipient Carers begin to realise that they are ‘carers’ & think about the implications this role has for them Continuous support from services is needed

Management of the illness Some carers mange the illness by accepting the caring role as part of their life Management of the illness can be a very fine balance & carers can be very vulnerable and stressed The situation is unlikely to remain static; carers might move back and forth between distress & hope Continuous support from services may be needed

Case study A mother who looks after her son who started behaving ‘strangely’ when he was 17. She described all the emotions:  shock at realising something was wrong  feelings of loss and bereavement  on to a complete break-down when she tried to commit suicide. Up to this time she did not feel that she had any support from her family/partner. She left paid employment to care for her son.

Case study Her experiences with services tend to be positive & inclusive. However, she had not accessed or had any professional support for herself up to that time. From the time of her break-down, she was offered & accessed services for herself such as bereavement counselling which helped her recognise that: I couldn‘t fix the world and I couldn‘t fix my sons, I could be there and do what I could for them, but they were going to make their own choices.

Case study The carer became aware that she needed some distance & asked her son to move out. He moved into a supported housing unit run by a voluntary organisation and his life & way of living with the illness has since then improved dramatically. The carer has returned to employment.

References 1 WHO (2001) The world health report Mental health: new understanding, new hope. Geneva: World Health Organization 2 Arksey, H., O’Malley, L., Baldwin, S., et al. (2002) Overview report: services to support carers of people with mental health problems. University of York (Social Policy Research Unit & Centre for Health Economics) and Acton Shapiro. 3 Sainsbury Centre for Mental Health (2003) The economic and social costs of mental illness. London: SCMH

References 4 Friedli, L. & Parsonage, M. (2009) Promoting mental health and preventing mental illness: the economic case for investment in Wales. All Wales Mental Health Promotion Network 5 Wengraf, T. (2009) Interviewing for life-histories, lived situations and on-going personal experiencing using the Biographic-Narrative Interpretive Method (BNIM). (27 Sept 09, version 9.09c) 6 Karp, D. A., & Tanarugsachok, V. (2000). Mental illness, caregiving, and emotion management. Qualitative Research, 10, 6–25.