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Communicating effectively with patients and families following stroke.

Communicating effectively with patients and families following stroke. Stroke Northumbria’s Peer Support Programme. Graeme Gillespie, Pam Groom & Annie Laverty. Context. Every five minutes, someone, somewhere in England and Wales will have a stroke.

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Communicating effectively with patients and families following stroke.

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  1. Communicating effectively with patients and families following stroke. Stroke Northumbria’s Peer Support Programme. Graeme Gillespie, Pam Groom & Annie Laverty.

  2. Context. • Every five minutes, someone, somewhere in England and Wales will have a stroke. • The life changing impact of stroke is often poorly addressed. • People with stroke consistently cite poor information provision & lack of appreciation of the emotional consequences. (Rodgers at al) • Only 1 in 5 carers are satisfied with information & support (Robinson)

  3. No involvement in any community activities after stroke. 79% people in North Tyneside. 80% people in Wansbeck. 83% people in Hexham. Community engagement after stroke. Barriers to re-connecting with life include lack of confidence, information & support.

  4. Stroke Volunteer Support Project Aims. • Help newly diagnosed stroke patients, carers and their families to access additional information and support. • Reduce potential isolation and anxiety of people with stroke and their carers. • Increase the confidence of people with stroke to facilitate their future engagement in social and community life. • Enable people living with stroke to develop, influence and deliver services. • Enable Stroke volunteers to provide positive peer role modelling, validated by their own personal experiences of life after stroke.

  5. Why peer support? • Peer role models act as powerful facilitators in delivering important information. • Peers are highly accepted by fellow stroke survivors and carers. • Able to provide social support, experiential knowledge and a social comparison that the medical model of care is unable to provide. • ‘experiencing a common circumstance or being in a common predicament can be a powerful component of healing’ (Robinson 1998)

  6. What we did. • £12,000 secured from workforce monies to develop and pilot Stroke Peer programme. • Pyschologist, Speech and Language Therapist & Stroke Information Co-ordinator develop 30 hr training programme. • Careful consideration given to the needs of all stakeholders. • Resources to support inclusion of people with aphasia, visual impairment, memory loss & other cognitive difficulties. • Recruitment and selection of 23 volunteers. • Site based support & buddy system introduced together with specialist support as needed. • Service began on each of the 3 stroke units in November 2009.

  7. Understanding the benefits. • Patient/carer views on ease of communication (being listened to, feeling understood etc) and perceived overall helpfulness of volunteer contact • Stroke volunteers' perceptions of preparedness for the role, value of own personal experiences for the role, peer support and practical issues (e.g. time commitment) • Ward staff perceptions of benefits to service users/staff and integration into ward life.

  8. Over 90% of patient /carer respondents felt understood and listened to by volunteers, felt they were provided with useful information and found the service helpful. “It is really scary and you feel so alone. Meeting someone who has been through what my mum is going through now has helped us all” Stroke Family member.

  9. With time and trust - relationships have been enhanced. Volunteers have been able to integrate well with acute multidisciplinary teams. 100 % of staff feel the volunteers have improved the patient experience.

  10. Training was very well evaluated. Over 95% of volunteers report feeling adequately prepared for all visits. 100% of volunteers have felt able to use their own experience to understand the needs of others. All have been able to manage the time commitments. “Every visit has reinforced my belief in the programme”

  11. In a twelve month period 418 visits have been made to 364 patients and carers by 23 volunteers. Stroke support volunteers have been successfully trained to provide a unique role in acute rehabilitation. This strengthens the team-based approach to recovery and formally values the contribution of sharing lived experiences. With minimal financial investment - a positive impact has been made upon the service system, values and practice in a short space of time. Bridging the Gap in 2010.

  12. “Since my involvement with the project, my confidence has grown and I have improved tremendously. It has changed my life and I feel that for the first time in five years I am doing something useful for new patients, families and myself.” Stroke Support Volunteer, July 2010 Bridging the Gap.

  13. With grateful thanks to Peter, Lynn and Maureen for sharing their story

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