A psycho-educational group for carers caring for clients with first episode psychosis – working in partnership with care

1. A psycho-educational group for carers caring for clients with first episode psychosis –working in partnership with carers Dilys Syed Lois Revans Nicki Moone Jacqueline Sin

2. An overview • Background & rationale • Development of EIPS carers group • Programme & lessons learnt • Evaluation & feedback • Future development

3. 18 years old Mid-way through A levels No 1 for his age in table tennis Since 11 regularly traveled the world competing for England Interviewed on radio & TV Very single minded/obsessive Bright especially in maths/computing/philosophy Already had a place at Cambridge University Dry sense of humour Devout Christian 14 years old Starting GCSEs Loved basketball, sport Artistic Animal lover Independent, quiet, sensitive nature Found it hard to express his feelings Particular about clothes, appearance Great sense of fun Girls loved him! Our story

4. “The Bad Old Days” • Years of gradual withdrawal (negative symptoms /simple schizophrenia not recognised) • No help available – GPs and anyone else • Situation allowed to deteriorate for up to 4 years until “crisis point” reached • Traumatic admissions under section • Impact on family • Lack of information, support throughout • Issues with confidentiality

5. Resulted in • Psychosis becomes far more entrenched and harder to treat (severe and enduring) • Strain on family relationships • Isolation for patient and family • Loss of close family relationships • Long drawn out grieving process – loss of expected place in society • Nobody understands • Difficulty in establishing trust in professionals – felt being let down

6. What we as carers think would be useful • Dedicated early intervention team • Working in partnership- carers, MH professionals, GPs • Increased awareness of pro-dromal signs of psychosis – for GPs, parents, schools • Develop information sources/education for carers – education sessions, websites • Facilitate peer support for carers • Make family work more available • Reduce stigma of mental health illness

7. The Royal County of Berkshire – from 2002 Windsor & Maidenhead Slough Reading Bracknell Newbury Wokingham • Berkshire is a county west of London, stretching from the very rural west of the county, to more urban towards the East, across 48 miles. • Population size is about 1 million • Reading is major city with a population size of about 220000

8. The Family Interventions Service – for EIPS

9. Rationale behind the EIPS carers group • Low uptake in Family Work Service, contrary to research findings • Low referral rates to the established carers group and other services • A local mapping exercise and phenomenological study • Carers’ perspectives

10. The findings from our local study • Living together • Caring extensively & intensively • Knowing & caring • The search for normalising activities • Support in caring • Learning to be a “carer” • Carers see group as a good alternative to FI (Sin, Moone & Wellman 2005)

11. Aims of the Carers Support Group • To provide psychoeducation • To help facilitate carers to share experiences and process the emotional upset • To facilitate pooling of solutions for common problems and encourage trying new coping mechanisms • To expand problem-solving capacity • To network the carers to combat feelings of isolation and stigma • To engage with network of services • Emotional processing within peer group • Space for specific issues for carers’ interests

12. The Programme over 6 months- Berkshire Model

13. Issues for extra-considerations - using the psychoeducation model in EIPS carers groups • Group-facilitation – for pooling solutions and sharing experiences • Modification of psychoeducational materials, e.g. psychosis vs schizophrenia, the common symptoms of OCD, … • Couples and parents attended together • Evaluation • Acknowledging and empowering carers’ commitment, needs and contribution – what next?

14. Feedback from Carers • “good informal support, understanding, supportive group” • “been useful having a framework, so the group does not become a sound-off” • “at last, someone cares about us” • “Good to share experience and learn about the strategies to cope even though things are not going to change immediately”

15. Suggestions to expand carers services • “somehow the needs of the siblings need to be addressed” • “start with glossary of terms” • “how about something after the educational group that we can still keep in touch” • “more staff please so many more people can benefit from it”

16. Ongoing and further development • Carers’ increased involvement in leading the future groups • Informal network of support among carers • Contributions and consultation to the planning & development of EIS service • In-patient admission wards carer-link workers • Carers services – evening workshops & newsletters • Carers contribution to GP and staff training and education

17. Dilys Syed Carer Dilys.syed@berkshire.nhs.uk Jacqueline Sin Education & Practice Lead in PSI Berkshire Healthcare NHS Trust & Thames Valley University jacqueline@urbanfuture.org Lois Revans Carer l_revans@hotmail.co.uk Nicki Moone Clinical Nurse Specialist Berkshire Healthcare NHS Trust No.moone@berkshire.nhs.uk To contact us for further discussion -