Rehabilitation of People with Acquired Brain Injury Bournemouth University, Headway, Dorset & Dorset Healthcare NHS

1. Rehabilitation of People with Acquired Brain InjuryBournemouth University, Headway, Dorset & Dorset Healthcare NHS Foundation Trust . ENOTHE CORK October 2007

2. Greetings from Bournemouth! Melissa Forsyth Theresa Weston

3. Where is Bournemouth?

4. Presentation Outline • Introductions • Target group • Acquired brain injury • Current service providers • Introduction to initial project • Summary of project outcomes July 07 • What is an expert patient? • Content of generic expert patient programmes • Revised planned project outcome • Relevance to OT • Three key tasks • References

5. Target Group • Improved post-accident care, has resulted in an increased number of survivors with Acquired Brain Injury (Headway ca2006) • “The majority of health, social and employment services have not yet adapted to meet the rehabilitation needs of people with ‘hidden’ cognitive disabilities” (Headway ca2006) • Potentially individuals within this client group are at risk from occupational deprivation as their complex needs are not being met • A need was identified in collaboration with our partner agency – Dorset Healthcare NHS Foundation Trust

6. AcquiredBrain Injury • What is an acquired brain injury? • An injury to the brain which has occurred since birth (Turner et al, 2002). • traumatic or non-traumatic ( tumours, infectious disease, toxins.) • What does it mean to have ABI? • Visual difficulties and fatigue are persistent often five years after the accident • Cognitive, behavioural and emotional difficulties persist • 32% of those working at 2 years were not working at 5 years post accident. • (Olver 1998).

7. Current Service Providers Headway Dorset: Voluntary charitable organisation Established 1993 by carers of people with acquired brain injury (Headway 2006) Dorset Healthcare Trust Community Brain Injury Service: Multi-disciplinary Team, Occupational Therapists, Physiotherapists, Psychologists, Consultant Dorset Healthcare Trust Vocational Rehabilitation Service: Aims to assist people to recover existing skills, learn new skills, enable people to live satisfying and purposeful lives in the community. May involve paid employment or voluntary work. 30% of clients have a brain injury

8. Introduction to Initial Project • The project was established in 2006 and the proposal presented at the Ankara ENOTHE conference. • To deepen knowledge of community facilities that the individuals wished to access along with other complementary healthcare. • It consisted of three threads: • It aimed to establish if the expert patient programme was suitable for this particular client group. • To research whether a book prescription service would be a viable venture. • Investigate potential for access to leisure activity. • Progress was recorded, presented at the end of the year and a report sent to ENOTHE.

9. Project Outcomes July 2007 • Information on the book prescription service and a database format for accessing community facilities was completed within the academic year and handed over to our partner agency – Dorset Healthcare NHS Trust. • In the case of the Expert Patient Scheme possible scope for further development had already been recognized and continued support was requested by Headway Dorset. This will be achieved through continuation of the project in regard to the Expert Patient Scheme into 2007-8 • BUDGET: • This project is based on time and involvement resources as opposed to financial

10. What is an Expert Patient? • Expert patients are people living with a long-term health condition, who are able to take more control over their health by understanding and managing their conditions, leading to an improved quality of life. • Expert patient programmes at present are generic and take place over 2 1/2 hours per week for six weeks and are led by people who, themselves, live with a long-term health condition.

11. Content of the Generic Expert Patient Programme People learn a variety of relevant skills, which include: • Setting goals. • Writing an action plan. • Problem solving skills. • Fitness and exercise. • Better breathing (participants are taught diaphragmatic breathing). • Fatigue management. • Healthy eating. • Relaxation skills. • Communication with family. • Working better with health care professionals, including communicating better with them. • Making better use of medications.

12. Revised Planned Project Outcomes • Identify if there are any expert patient schemes operating for people with traumatic brain injury and if this could be replicated in Dorset • Locate other expert schemes in our geographical area • Gather information on how to set up an expert patient scheme • Make an action plan for setting up a scheme • Present to the stake holders

13. Relevance to Occupational Therapy • We are aiming to work towards a just society and reduce the risk of occupational deprivation this will be achieved through : • Empowering the individual • Providing choice and opportunity for involvement and social inclusion • To enable occupational rights and equality. • As OTs, we are well placed to offer support, help and education on the 3 key tasks identified in the expert patient leader manual.

14. THE 3 KEY TASKS • Managing the illness • Taking medications • Changing diet and exercise • Managing symptoms of pain, fatigue, insomnia, shortness of breath, etc. • Making best use of health care available • Managing daily activities and roles • Maintaining roles as spouse, parent, employment, etc. • Managing the emotional changes • Managing anger, fear, depression, anxiety, etc. The Expert Patients Program Leaders Manual

15. “Occupation is seen as a human right and occupational deprivation as a violation of human rights” (COT 2006)

16. THANK YOU FOR LISTENING ARE THERE ANY QUESTIONS?

17. References and Further Reading (1) COLLEGE OF OCCUPATIONAL THERAPISTS, 2006. Statement on the relationship between occupation, mental health and well being [online]. COT, London. Available from: http://www.cot.org.uk/newpublic/practice/pdf/vision-statement.pdf [Accessed 4 October 2006]. OLVER, J. H., 1996. Outcome following traumatic brain injury: a comparison between 2 and 5 years after injury. Brain Injury [online]. Volume 10 (11). Available from: http://ejournals.ebsco.com/direct.asp?ArticleID=XR7UQRJFX9FUHY3N99GG [Accessed 4 October 2006].

18. Referencesand resources(2) • BRAKE, ca2006. Injuries from crashes [online]. Brake, Huddersfield. Available from: http://www.brake.org.uk/index.php?p=597 [Accessed 4 October 2006]. • DEPARTMENT OF WORK AND PENSIONS, 2006. Pathways to work: qualitative research on the Condition Management Programme [online]. London, DWP. Available from: www.dwp.gov.uk [Accessed 04/10/06] • DORSET HEALTHCARE NHS TRUST, 2006. Community Brain Injury Team [online]. Dorset, Dorset Healthcare NHS Trust. Available from: http://www.dorsethealthcare.nhs.uk/Default.aspx?tabid=154 [Accessed 4 October 2006].

19. References and Further Reading (3) HEADWAY ESSEX, ca2006. Brain injury statistics [online]. Essex, Headway. Available from: http://www.headwayessex.org.uk/facts/statistics.html [Accessed 4 October 2006]. HEADWAY NATIONAL HEALTH SERVICE, 2003. Expert Patient Programme [online]. http://www.expertpatients.nhs.uk/what.shtml [Accessed 04/10/06]. Expert Patients Programme. Available from: http://www.expertpatients.co.uk/public/default.aspx[Accessed 3 October 2007]

20. References and Further Reading (4) WHITEFORD, G., 2004. When people cannot participate: Occupational Deprivation. In: C. CHRISTIANSEN & E. TOWNSEND (eds). Introduction to Occupation: the art and science of living. New Jersey, Prentice Hall, 221-242. TURNER A., FOSTER M., JOHNSON, SE., 2002. Occupational Therapy and physical dysfunction. Edinburgh. Churchill Livingston.