Aims and objectives
The main purpose of the stroke day programme is to give stroke survivors and their carers the opportunity to share their experiences with others in similar situations and with NHS and other professionals who manage and provide stroke services.
The following specific objectives were set for the first event, held in Driffield on 13 November 2002:

• to provide a locally accessible event for Strokewatch members;
• to enable stroke patients and carers to meet and share their experiences;
• to provide an opportunity for stroke service professionals to listen to patients’ and carers’ feedback, and their ideas for developing the service;
• to provide service users with information about the stroke service;
• to encourage a realistic view of what is possible in relation to improving the stroke service – short and long-term.

The Driffield event, held at the Blue Bell Restaurant, was publicised mainly by the Stroke Association Family Support service and the Driffield Stroke Club. Over fifty stroke patients and carers attended. There was a good response from locally-based and other professionals, twenty of whom attended the event and helped to facilitate the discussion groups.

Information stalls were provided by the Cherry Tree Centre (Beverley), the East Riding Carers’ Support Service, the Community Health Trust Speech and Language Therapy Service and Strokewatch.

The day began begin with a brief introduction about Strokewatch, followed by an overview of the philosophy, direction and structure of the stroke service by Dinah Fuller, Stroke Nurse Consultant. The rest of the time was given to small group discussions about patients’ and carers’ experiences and their ideas for improvement and development of the service. After a buffet lunch with time to look at display stands and speak informally with professionals, the event concluded with a brief résumé of key points from each table. The organisers undertook to disseminate the findings together with a stroke service action plan to all those who attended the event, and to NHS managers as appropriate.

Evaluation
Participants were invited to complete a questionnaire at the end of the programme and thirty nine responded, all very favourably. The few negative comments concerned the not very effective sound system.

Asked what the best thing was about the event, several people wrote that it had been useful and helpful in every way, nearly half appreciated being able to meet other people who had had a stroke, and a quarter welcomed the opportunity for service users and carers to meet and discuss things with the professionals. Others added that it had been a good opportunity for users and carers to give constructive criticism and feedback to those who worked in the stroke service.

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KEY POINTS AND ACTION PLAN

The following Key Points and Action Plan have been compiled by Dinah Fuller, Stroke Nurse Consultant, and endorsed by stroke service professionals working in the Driffield area.
Key points raised by patients and carers
All comments made during the group discussions were recorded by the facilitators. On the whole, users and carers were generally pleased with the current service compared with the service before organised stroke care was available in this area.

The following key points which professionals needed to address were raised by patients and carers:

1. Staff need to work harder to communicate more effectively with patients and families especially in relation to all aspects of giving information.
2. There were some comments which related specifically to improving staff training, especially in the acute hospital.
3. The days following a stroke are clearly a sensitive time both for patients and their carers, when information, explanation, support and emotional understanding is very much needed.
4. The family support service was regarded very favourably by patients and carers attending this workshop.
5. Recent stroke patients and their carers had had good experiences of rehabilitation options, compared with people who had had a stroke prior to the introduction of organised stroke care in the area. Staff at the Alfred Bean Hospital were praised for their enthusiasm and therapeutic approach. There were also favourable comments specifically about the nursing staff for their support of patients in working towards their rehabilitation goals.
6. Shortage of therapists across the service was a real cause for anxiety and concern by several service users and it was recognised that there are pockets where therapy services are less freely available than in other areas.
7. Users and carers were generally happy with the information they had received about stroke, especially from the family support service.
8. The provision of information in acute wards seemed to have been much less effective.
9. Many users and carers reported having difficulty getting information about benefits and social service support at the point when they most needed to know what they were entitled to.
10. Some patients and carers wanted more information about medication.
11. Some patients and carers would have liked more information about the stroke service as a whole.
12. Some patients and carers felt that there was a need for more follow up care by specialist staff within the stroke service.
13. Staff need to be more aware of patients’ goals and their need for encouragement and support in order to meet them.
14. The people of Driffield would like to see follow up support and review on a long term basis, at least every six months. They would also like more access to therapy over a longer period and advice about general exercise groups.

This three-day training programme will be delivered several times a year by the specialist professionals within the stroke service. It will cover all the fundamental aspects of caring for a patient who has had a stroke, including understanding the causes and the effects of a stroke, and the physical, emotional and psychological needs of stroke patients and their carers.

This training programme is supported by all the professions involved in stroke, including Consultants, Physiotherapy, Occupational Therapy, Speech and Language Therapy, Dietetics, Nursing. The content has also been endorsed by Strokewatch and The Stroke Association, which will both be contributing to the programme.

In addition to this programme, the Nurse Consultant and the charge nurse on Ward 110 will facilitate further training and support workshops for staff working on the Acute Stroke Unit. It might also be useful to invite patients and carers to talk to staff about their experiences and how care might be improved.

Therapy
There is serious concern within the stroke service that a lot more therapy support is needed, to support people over a longer period of time. This has been acknowledged in the Business Planning process and requests have been made for substantially increased resources across Physiotherapy, Occupational Therapy, Speech and Language Therapy, Clinical Psychology and dietetics over the next few years.

We recognise that the amount of funding and the therapy staffing levels needed to meet all these requirements are unlikely to be available and that we can only hope for small improvements year on year. We therefore need to work hard to ensure that as many opportunities for continuing support through other mechanisms are available, and that patients and carers are made fully aware of them. These should include:

• Stroke patients having goals to work towards, so that carers, staff and others can help them.
• More group work and gentle exercise classes might be a way of supporting and motivating stroke survivors over a longer period of time.
• The recently introduced Patient Information and Personal health record should help to ensure that stroke patients and their carers are better informed about the stroke service, what to expect, what type of stroke they have had, what their risk factors are, and how we are supporting them. This record will also specify the goals the patient is working towards.
• These handbooks have only just been introduced (February 2003). We expect it will take about six to twelve months for their potential to be fully appreciated by staff and patients, and for them to be used with maximum effect by all the health professionals involved.
• We need to meet with social workers and others locally – the Family Support service and East Riding Carers’ Support service – to discuss how to improve information about benefits and ensure that good information is available on the wards and rehabilitation units and in Strokewatch’s bookcases.
• We are starting to work on a Secondary Prevention Plan which will make sure that all stroke patients are followed up at after that on a continuing basis. This will ensure that any concerns are picked up and dealt with over time. This could include referral back to the Stroke Physician or to any of the therapy specialists.
• The nursing staff at Driffield hospital have expressed an interest in piloting the first review (at 6 months post-stroke). A form for the review is ready for use.

Dinah Fuller,
Stroke Nurse Consultant

Dilys Page,
Secretary Strokewatch
March 2003