Attitudes to Carers Rosemary Chesson Health Services Research Group Carers Health Conference, Edinburgh, October 2004

Attitudes to carers: Overview  Main focus on carers’ perceptions;  Through carers’ own words;  Main emphasis on health professionals;  Based on own research 1994 to date.

Main studies  Therapy services to people with Parkinson’s disease living in the community.  Who’s there for carers? The role of social support and social networks for carers of people with MS.  Involvement of carers in care-decision making regarding patients with hip fracture.

The carer’s journey Commonly carers described feeling ‘abandoned’ at the time of diagnosis, even though they felt that their lives were affected too.

Diagnosis ‘Following diagnosis we had nobody. There was nothing. The neurologist said just carry on..... He said pretend that nothing has happened and go out and carry on with your life. Easier said than done!’ Carer Y, (MS Study) ‘We did not have any support (at the time of diagnosis). We had a lot of needs... It would have been great to know more from a GP.’ Carer V (MS Study)

Carers’ needs All studies highlighted carers’ need for information and associated needs. ‘I said [information] needs, but to an extent it was overwhelming psychological and emotional support [not just at diagnosis] but on-going for a while.’ Carer A1 (MS Study)

Everyday needs Across studies of carers often felt they were left to find and ask for help ‘ As I am a retired physiotherapist and caring for my husband who has PD, I would say that if it was not for my training and experience as a physiotherapist, I would have no idea as to how to treat my husband – no help from the GP or very little.....’ Carer (PD Study)

Support: Increasing dependency Carers welcomed a more proactive approach from service providers ‘Because it happens to you, you are on your own. You have no help. You cope with it. You care as best as you can. And then because you do it all yourself, the Social Work Department do nothing. You have to open their bloody door...’ Carer AA (MS Study)

Support: Hospitalisation Identifying carers  No distinction often made between carer/next of kin  Extent of caring responsibilities may be unknown to nursing staff  Assuming role of carer, following surgery ‘Its not rocket science!’ Hip Fracture Study, 2004

Carers’ role during hospitalisation  Visiting  Helping with practical tasks, eg laundry  Helping to eat and drink  Providing for social contact & interaction  Offering emotional support Hip Fracture Study, 2004

Carer contact with hospital staff  Five carers had not spoken to any of unit staff.  15 carers only received information ‘when they asked for it’.  Few carers reported views sought.  Carers previously employed in NHS most likely to comment on lack of involvement. Hip Fracture Study, 2004

Issues raised from study  Methods of communicating with carers.  How carers may best be known to ward staff.  Carer involvement in decision making.  Nursing issues: staffing, demands on time, priorities. Hip Fracture Study, 2004

Health professionals said..... Therapists recognised the importance of family to people with disability and acknowledged vital role that spouses, in particular, play. ‘ You can sympathise when you see the problems but you can never fully understand what is must be like. And you don’t know what’s going on behind closed doors. We only hear what the patient and carer tell us.’ PD Study

Partners in care? ‘For many years we have just served ourselves and thought about ourselves.’ Allied Health Professional We were brought up to stay in control – you had to Inspire confidence.’ Health Visitor Chesson & Adams, 2002

Acknowledgements Study participants. Co-authors: Debbie Alexander-Romney, Peter Blackledge Diana Cockhead, Professor J Hutchinson, Margaret Macleod, Noella Ruta, Chris Upton. Funding: Chartered Society of Physiotherapy; Grampian University Hospital Trust (Endowments); MS Society; Parkinson’s Disease Society.