This was the fourth workshop facilitated by Strokewatch with a total number of 37 users and carers attending the day. There was also a good representation of Therapy and Nursing staff working within the Stroke Service.

The purpose of the workshop was to gain feedback from stroke survivors and carers whom had experienced the service and this was relayed in a welcoming presentation by Strokewatch.

This was followed by another presentation which informed all attendees of the developments in the Hull & East Riding Stroke Service, with an open session for any questions or queries, which proved to be very useful.

The workshop then moved on to getting written feedback from users and carers about their own personal experiences of the service.

Summary of Feedback

The summary of feedback was varied and referred to different time scales, going back as far as 1996.

1. Feedback included concerns of being moved frequently in the Acute hospital setting, different levels of therapy, lack of information.
2. On a more positive note, there were also comments that the Stroke Unit was very good, the staff were excellent. Castle Hill hospital was also commented upon as being good. Lack of information was again a key concern for some individuals.
3. Experiences of being in a Rehabilitation Unit were extremely well evaluated at the Westwood Hospital (5 stars).
4. Alderson House was described as ‘The Linneaus Street Hilton’! One individual felt Physiotherapy was very good at Alderson.
5. Concerns were raised that there was no Clinical Psychology support.
6. Individuals valued the Stroke Therapy Groups which were run by Family Support.
7. When asked about levels of information, as has been the case in all other evaluations, information from the Family Support was well received.
8. Dr Ming was individually identified as being very supportive as was Stroke Groups and the Dysphasia Support Service.
9. Some individuals did not find leaflets that they were given particularly useful and information from Family Support was again evaluated quite differently among the teams. Some giving a lot of information, others only giving bits.
10. Stroke Association information leaflets had not been widely available to this group of individuals evaluating the service. The OK Club, in particular, was regarded as giving more help than anywhere.
11. When asked about benefits and how easy it was to find out what individuals were entitled to again, a very common and strong theme came through that individuals had found this very stressful to work their way through.
12. When asked about tips for people who looked after stroke survivors, quite a few inferences were made about the needs of carers. Professionals were asked not to label people and respect for privacy and confidentiality were requested.
13. Some individuals requested more emotional support and some more facilities to motivate ‘getting your brain going’.
14. Some users of the service felt that some professionals don’t understand post stroke cognitive problems. Some felt rather ‘mollicodled’ by professionals.
15. We were also commended for providing an excellent service and asked to carry on the excellent work!
16. When asked what improvements individuals would like to see, these included:
17. More places to gain advice
18. More advice on driving
19. A stroke club in Holdernesss
20. Continued Therapy at weekends
21. ore opportunities to have contact with other survivors
22. Shorter waiting for adaptations
23. A contact name for support
24. How people who have had strokes previously can access the new stroke service
25. More therapy of every sort
26. Better access to the stroke unit (one person experienced a 26 hours trolley wait)
27. Psychological support
28. More understanding by the professionals about stroke
29. More activities during the stroke rehabilitation

The launch of the Patient Information and Health Record should help to provide a consistent standard of information given to patients and their families. Work is currently taking place to enable the Family Support Organisers to support the nursing and therapy teams with filling in the Personal Health Record for stroke patients.

Strokewatch, together with support from individuals within the service are near to publishing an Information Leaflet for patients and carers on how to access potential benefit entitlement. It is hoped that this leaflet will help people who find the systems very complex, to contact the right people more easily. This has been a concern raised in every Jubilee Workshop and we are confident that this simplified leaflet will support a lot of people.

In response to the needs of carers, Strokewatch themselves have carried out a survey and this information will be fed back to the Stroke Service which will give us a lot more clarity in relation to what carers want. Plans are also underway to provide carer and stroke survivor training and education sessions that they will be able to access on a ‘rolling’ basis about lots of different topics related to stroke and caring for stroke survivors.

The Stroke Service still has no dedicated Clinical Psychology input and this is a big gap in our service. Responses from this workshop, particularly in relation for individuals request for emotional support, will be fed back to the PCTs. Staff working within the Stroke Service should also look towards developing their own skills and knowledge around the provision of emotional support and we will look to include this in a more specialist training programme next year. The Stroke Service is now running a very successful training programme for professionals; so far we have had over 120 people attend that training and we have a very long waiting list of people wanting to attend it. This is very encouraging because, clearly there is a lot of interest by the people delivering stroke care, in learning more and should improve everyone’s knowledge base. Discussions are already underway about setting up a more advanced course, but we will not be able to deliver this probably until early 2005; but the planning has started.

The PCTs continue to be extremely supportive with developing the resource infrastructures in our service. All therapists are identifying their resource needs and this is steadily growing. So far, this year, we have had the funding to provide another Speech & Language Therapist and another Occupational Therapist. It is hoped that further funding will be found before the end of the year to increase therapy services even further.

Thank you
Dinah Fuller
Dilys Page