Rehabilitation & Beyond

1. Rehabilitation & Beyond The ASPIRE programme A pragmatic way of enabling those with stroke to self care? Debbie Neal Consultant therapist - rehabilitation

2. Life after stroke Information provision is limited; patients and carers feel abandoned when they return home (Stroke Association, 2006) Carers are more likely to be depressed than stroke survivors (Berg et al, 2005). Another stroke? Patients’ and carers’ knowledge of stroke and how to prevent a further event is poor (Rudd et al, 2004). Shortening lengths of stay - still in shock - limited opportunities for secondary prevention advice After acute stroke - two main issues

3. Local context • YDH is a 300 bed “DGH” serving population of 180,000 from a mainly rural area on Dorset / Somerset border • 49% acute strokes discharged directly home • October 2006 audit reflected national findings – despite information provision, patients had limited knowledge of 2ndry prevention or even what a stroke was

4. One solution? • Cardiovascular risk can be reduced through self care (Lewin, 1995). • Many risk / lifestyle factors are the same for cardiac & stroke disease (Gordon et al, 2004). • A programme of secondary prevention – exercise & education, similar to cardiac rehabilitation. • Pragmatic approach – once a week, combine with carer support and rolling recruitment so no waiting list. • Piloted during 2007 with support from Somerset Stroke LIT & developed with feedback from participants

5. Supporting self care • Biopsychosocial approach that supports self care i.e. where a person is supported to participate fully in society and care appropriately for their own health • Provision of information and advice and / or the development of skills leading to increased self esteem and confidence and changes in lifestyle or attitude (Chambers et al, 2006). • Evidence that self care strategies (Jones, 2006, Sit et al, 2007) and physical fitness training (Saunders et al, 2007) can be used in stroke

6. ‘ASPIRE’ Acute stroke, Support to self care, secondary Prevention, Information, Rehabilitation & Exercise

7. Repeat audit

8. Current format of ASPIRE A once-weekly roll-on, roll-off programme allows “expert participants” to support new starters • 10-10.30 New patient assessment and goal setting • 10.30 – 11.30 Exercise, carer and peer support. Informal Q&A medication and other issues. • 11.30 – 12.00 Interactive education / information session & signposting to other services. • 12.00 – 12.30 Optional follow up review appt, usually 1 month after finishing ASPIRE

9. Referrals • Usually anyone who has been given a diagnosis of Stroke / TIA within the last 3 months and who is willing to attend the 12 week programme • Most of the referrals from Acute Stroke Unit or TIA clinic, some from community sources • Some have not attended or completed due to transport difficulties, further illness, patient choice or return to work. • Range of physical, communication and cognitive impairments • Range of stroke risk factors

10. Participants Participants: 134 referrals, 98 completed to date of whom vast majority have completed all 12 sessions. Currently 12 participants Age range since starting 22 – 88 For first time a waiting list of 6 as insufficient space in gym for more than 12. More male (64) than female (34)

11. Exercise & Activity • The individual tailored group session includes cardiovascular, strengthening and other exercises and activities focused towards achieving the participants own goals. • Prior to exercise, weight and blood pressure are measured which gives the opportunity for a check in. • Participants are encouraged to record their exercise programme and monitor their progress towards their goals on their own record cards • Participants are also advised on appropriate home exercise.

12. Exercise

13. Interactive Information Sessions Topics covered are those identified by Young & Forster (2007) • Life after stroke e.g. sex & relationships, finances & benefits, holidays & leisure • Risk factors e.g. diet, medication, stress management Extra sessions requested by participants • Managing medical emergencies including basic life support, fits (resuscitation officer) • Return to work & managing fatigue (ex-ASPIRE participant)

14. Interactive Information

15. Carer support • Carers are invited to attend as many of the sessions as they wish. • They usually take part in the information sessions • During the exercise session take the opportunity to either take a break or stay to encourage their partners, talk to other carers or the staff for information, advice and support. • Some arrive for a chat at the end of the session or phone for advice between sessions.

16. Staffing & input over 12 weeks • 24 hours 8b Consultant therapist (neurophysio) • 24 hours 8b Consultant nurse stroke (prescriber) • 12 hours Band 2 rehab assistant • 12 hours Band 2 admin • 24 hours Volunteer (ex-ASPIRE participant) • 0.5 hour of each of pharmacist, dietitian, OT, physio, resuscitation officer, FAB team, stroke coordinator. 18 - 24 hours input for each of 12 people with stroke (& carer) over a 3 month period.

17. Funding • Currently funded through block contract with PCT • Captured on PAS as a Nurse-led clinic • Regular reports to Somerset-wide Stroke local Implementation team • Committed to equity of provision – part of planned stroke pathway • Needs robust evaluation before implementing county-wide • Qualitative study nearly complete – outcomes

18. Outcomes • Most previously hypertensive participants have demonstrated improvements in blood pressure • Some overweight participants have lost weight • Increased fitness informally noted • Identification of problems and appropriate onward referral to other services

19. ASPIRE qualitative outcomes • Increased knowledge about stroke and secondary prevention (stroke survivors and carers) • Changes in health behaviour • Peer support • Carer support reducing carer stress • Increased confidence, mood & self esteem • Improved compliance with medication

20. ASPIRE qualitative outcomes • S1 “Well in my case …..I had this atrial fibrillation. This irregular heartbeat ….and that….brought on my stroke. That’s what caused it.” • S3 “….a clot in the carotid artery. It went to my brain and stuck somewhere and cut off the all the supply of blood to that part of the brain and killed all the cells.” • C4 “I was very interested in how many units of alcohol he should drink and what should be his diet and you know about the pills ….It gave me a bit of confidence and a bit of ammunition”

21. ASPIRE qualitative outcomes • S7 “So I drink, we drink less.” • S8 “Well yes I’m quite confident that I’m doing everything that I can …what I eat and I can’t eat, it certainly stuck ..I follow it religiously” • S9 “I mean we go to the gym twice a week, we joined a gym and as I say we’ve now taken up bowls as well and we walk a lot more, so if we go to town we walk and well we’re just more active definitely.”

22. ASPIRE qualitative outcomes • S4” I didn’t talk much. Other people did. They seemed to have, they were all useful. Probably the best thing was ...other people having the same trouble…. you could listen to them. And get their experiences.” • S5 “It spurred me on in that way, by seeing the, by measuring the improvement, you could get benefit from that. Yeah it generally gave me goals and it widened my horizons to getting me back to being fit.” • S6 “It was certainly a confidence booster. Being round people you could compare and you got the encouragement from any of the staff there.”

23. ASPIRE qualitative outcomes • C1 “The fact that we had a regular meeting to go to when everything was very hard work and not normal. We had a point of contact once a week. It was just a wonderful venue for us to go to when nothing else was fixed at that time. There is a chance for you to meet other people who’ve also had strokes all at different stages to ask questions and get them answered.”

24. Next stage for ASPIRE RCT to assess cost benefit and benefits to person with stroke and their family: • Readmission rates • Prevention of further stroke and heart attack • Mood • Carer stress • Long term outcomes • Health behaviours • Function • Quality of life Comparison with other approaches e.g. CRAFTS(Cardiac Rehabilitation Adapted to Transient Ischaemic Attack & Stroke) (Lennon & Blake, 2009)