Jubilee Stroke Days
This year we have also had the extra excitement and hard work of running our Jubilee Stroke Days, for which we obtained a Lottery Commission grant last summer. The idea is to give Strokewatch members the opportunity to get together locally at comfortable, accessible venues, and share experiences with other stroke survivors and carers, but the Stroke Days also enable us to record these experiences and feed them back into the service. In this way we are ensuring that users’ and carers’ experiences are contributing to the continuous improvement of the stroke service, which is Strokewatch’s central aim.
The events so far have been a great success. Held in Driffield last November, Goole in February, Bridlington in May and West Hull in June – they were altogether attended by nearly a hundred stroke survivors and carers. Reports and action plans are available for the Driffield and Goole days, and can also be downloaded from our website.
We have been greatly encouraged by unfailing support and practical help from Dinah Fuller, Stroke Nurse Consultant, who has been at all these Jubilee events to explain the aims and structure of the stroke service and answer participants’ questions. Dinah is also compiling follow-up Action Plans in response to the key issues reported by stroke survivors and carers during the small-group discussions at each of the events. We are also grateful to the many stroke service staff who have attended the events and helped to facilitate the discussions, to Dyson Stubbins (TIA Nurse Specialist, Ward 110 Hull Royal Infirmary) for acting as stroke service speaker at the West Hull Stroke Day, and to Rachael Pymer for continuing help in publicising the events among local professionals and typing up the huge volume of participants’ comments recorded at the events.
We are also indebted to the managers and staff of our Jubilee venues – the Blue Bell Restaurant at Driffield, the Courtyard in Goole, the Ransdale Hotel at Bridlington and Walton Street Club in Hull. But the main credit for all the behind-the-scenes work of seeking out and arranging these venues, distributing the fliers, preparing the documentation and transporting all the gear for this initiative must go to Ted and Kath Carr, who have indefatigably devoted a huge amount of time and effort to ensuring the smooth running of the Jubilee Days.
We have gathered a huge wealth of valuable information about people’s experiences of stroke services through the Jubilee events (see reports for Driffield and Goole). These were some of the recurring key points:
1. Recent stroke survivors reported a much better service compared with people’s experiences before Dec 2000, although there were still difficulties in getting enough therapy in some areas. Some of the community hospitals came in for a great deal of praise for the dedication of staff and the effectiveness of therapy services.
2. At all the events, many patients and carers expressed their appreciation for the Family Support service, for providing them with information, having the time to explain things and give emotional support, always being available, and helping them to contact other services.
3. Problems with benefits are widespread and worrying – what to apply for, how to find out what you’re eligible for, how to get help filling in the lengthy forms, and how best to present your case. We are now meeting with local experts with a view to preparing a Which Benefit leaflet for stroke patients and carers, to be available throughout the stroke service, to direct people to the help they need.
4. Communication problems also emerged as a recurring concern. These will be addressed through Dinah’s in-house training, and also by ensuring that all patients and carers have easy access to written information. The recently introduced Patient Information and Personal Health Record (more congratulations to Dinah for steering this through various drafts and getting it into patients’ hands) should in time help to fill in many of the gaps in communication reported by service users.
5. Patients and carers also reported feeling abandoned when their therapy was finished. They would like more follow-up and reviews of their progress. Dinah’s Action Plans give an assurance that this should soon be resolved with the introduction of a 6 month review system involving the Family Support team.
6. Participants also asked for guidance on activities which could support their longer term recovery. Through the Gaps Task Group, Strokewatch is planning a Life After Stroke Handbook, including a Directory of Opportunities to give stroke survivors ideas which might help them to rebuild their lives and take healthier options in a range of activities to assist their recovery.
Feedback Forms
In March this year we reported to the Stroke Working Group on the 50 Feedback Forms received since the forms were first distributed over a year ago, including responses on our new expanded form funded by a grant from Lloyds TSB. Two fifths of all our respondents made wholly favourable comments about the service they had received, and although praise for the rehab units again dominated the picture, we have recently also had some very positive praise for the care and treatment patients received in the acute unit. Copies of all the forms are sent to Dinah Fuller, Stroke Nurse Consultant, for appropriate action, and we are particularly pleased to report that her efforts have resulted in some patients’ problems being resolved or alleviated.
We are aware that we still need to make more determined effort to explain the purpose of the forms to staff in all stroke service units, and to persuade them to encourage patients to make use of the forms to record their experiences, both positive and negative.
Annual Meeting
We were very pleased with the attendance of over 60 people at last year’s AGM (July 2002), which was the first time we tried to make the event more than just a formal business meeting. It was a great success and we are repeating the format for this year’s Annual Meeting. There is a great deal to celebrate in the stroke service this year, and we hope to spread the message that although Strokewatch provides a route for users and carers to voice their complaints about the service, we are also very aware of the increasing frequency of positive comments about the developing service. We accept that things are not perfect, but we also want to make sure that stroke service staff hear the praise as well as the criticism, and that they are aware of the gratitude of so many of the people who have been through their hands.
Awards?font>
Last year Strokewatch decided to jump on to the awards bandwagon, in recognition of special contributions to the advancement of the aims of Strokewatch and the development of the stroke service in this area. We are making this an annual event, and asked all stroke service teams to make nominations for the 2003 awards. We want to play down the competitive aspect, and to use the awards to recognise the many examples of good practice in stroke care. We know that there must be many others out there who have made contributions just as worthy, but this is our Honours List, based on nominations we have received from our members and friends:
1. Judy Dickinson, Superintendent Physiotherapist, Community Stroke Service.
Conclusion
Our membership is still growing – 183 – and we are very pleased with the recognition we are getting locally but also from further afield. Our website has been visited by people all over the world, and we are in correspondence with stroke survivors from as far away as the Philippines and Bermuda. Nearer home we have been pleased to respond to requests for advice and support from stroke survivors and carers in Cumbria, one of whom we showed round the stroke service units in Hull. We have also been consulted by The Stroke Association who visited us about the pack they are preparing for stroke clubs who want to campaign for better local services, and we have recently given a talk to a group called Critical Friends who are setting up a users and carers group to help with the redesign of stroke services in Leeds.
Locally we do sessions on stroke for nurse training programmes at Hull University, a Diploma programme at York University, and we contribute to Dinah Fuller’s new and very well subscribed in-house training programme. The latest development is that, through Age Concern, Ted Carr will soon be starting a series of talks on stroke to the tenants of sheltered housing schemes in Hull.
We have also had a flattering mention in the government’s guidance on implementing the stroke standard in the Older People’s National Service Framework (November 2002, page 16), and we have been invited to speak at two national professional Conferences in London, to contribute the user’s perspective to the proceedings. We are pleased to report that so far we are getting very positive feedback from all the audiences who listen to our talks. Let’s hope we can continue to promote Strokewatch and the Hull and East Riding Stroke Service as successfully in the coming year.
Dilys Page
2. Ann Todd, Hull Carers’ Centre - ‘for fantastic ongoing support’.
3. Euan Clark, who was 15 when he did a commendable GCSE project on his experience of ‘a stroke in the family’.
4. Dr Cook, GP for St Mary’s Nursing Home, for his enthusiasm and support for the St Mary’s Stroke Rehabilitation Unit.
5. Marianne Boyd, for her sterling work with the Masterstrokes Group and the OK Stroke Club.
6. Frank Mortimer, stroke survivor, for his determination and motivation in overcoming quite severe difficulties after stroke in such a short time (St Mary’s) .
7. Jacky Williams’ father.
8, 9, 10. Eve Coleman, Ward 110 Hull Royal Infirmary, for her contribution to multi-disciplinary documentation and training, and to Mandy Redmore and Carol Nettleton, auxiliary nurses on Ward 110 who are committed to developing their expertise in stroke care and who are studying in their own time and undertaking Clinical Support Worker training (NVQ3). .
Congratulations and best wishes to them all.
Secretary, Strokewatch
July 2003