The Stroke Day described in this report was the second of six local events for stroke survivors and carers. The Lottery-funded programme marked Jubilee year and the six events are being organised by Strokewatch in consultation with the Hull and East Riding stroke service. The remaining events are in Bridlington (29 April 2003), West Hull (3 June 2003), Withernsea (29 July 2003) and East Hull (14 October 2003).

Aims and objectives
The main purpose of the stroke day programme is to give stroke service users and carers the opportunity to share their experiences with others in similar situations and with NHS and other professionals who manage and provide the service.

The specific objectives were as follows:

• 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 improve communications between service users and the stroke service, and between the elements of the stroke service;
• To encourage a realistic view of what is possible in relation to improving the stroke service – short and long-term.

The Goole event

The Goole Stroke Day was held at The Courtyard, a well-equipped community centre in the centre of Goole. It was attended by 36 stroke survivors and their relatives. The event was publicised by the Family Support worker for the area, who also attended. Fourteen of the patient and carer participants were members of the Market Weighton Stroke Club, which is co-ordinated by the Family Support worker. The Chair of the Users and Carers Sub-group of the Stroke Working Group, who is a member of a Community Health Council, helped to facilitate the discussion groups, as did the Stroke Nurse Consultant and her Assistant, and eleven staff from health, social services and the voluntary sector, including speech and language therapy, dietetics, PALS, East Riding Carers’ Support and Age Concern.

Information stalls were provided by 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 and the aims of the stroke days programme, 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 service users’ 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. The organisers undertook to disseminate the findings together with a stroke service action plan to participants and NHS staff and managers.

Participants’ evaluation of the event

Replies to a brief questionnaire showed that users and carers particularly appreciated the opportunity to meet other people who had had experience of stroke. Several people also said they had found the day informative and interesting, especially the question and answer session. One person particularly mentioned the welcome they had received and to another stroke patient the best thing was the companionship and exchange of ideas which the event had facilitated. The venue and the lunch were also singled out by some of the participants.

Suggestions and tips for stroke service staff

At the end of their discussions in small groups, participants were asked if they had any tips for stroke service staff, and any suggestions for improving the service. These were some of the answers recorded by the facilitators:

• Think positive not negative.
• Don’t just talk about stroke.
• Don’t do everything for them.
• Be aware there are good days and bad days.
• Work to their goals not yours.
• Help the patient to keep trying – don’t give up.
• Bring the outside world to the patient. (One carer made a photographic family tree to help staff relate to her father, who was unable to speak, and to help him to communicate.)
• Give more information early on. Be very patient when people forget they’ve
• been told something already..
• Patients need encouragement and honest but positive feedback.
• Make patients realise they have to try to look after themselves and have as little help as possible.
• Remember that the carer is as vulnerable as the patient.
• Carers need some TLC as well, in the acute stage.
• Don’t just tell the patient/carer your decisions – they need to be in control of their own life so things should be discussed with them.
• Explain confusing boundaries – agencies and professionals.

Key points in user and carer feedback

Stroke survivors at the Goole Stroke Day had had varied experiences of stroke care in various hospitals, including Hull, York, Scunthorpe, Pontefract, Bridlington, Scarborough and Newcastle. Their comments ranged from very favourable to very critical, but they referred to strokes over the past seven years as well as recent hospital admissions. Professionals working in the stroke service attended the event but there were unfortunately no representatives from Goole or Scunthorpe hospitals. However, we will ensure that they receive feedback through this report.

The key points were as follows:

1. General comments suggested that the local stroke service was now starting to make a positive difference to people’s experiences.
2. As we also heard from the patients and carers who attended the Driffield Stroke Day, the Family Support service was very much appreciated in the Goole area for its continuing support and for the written and verbal information it provided.
3. Stroke Rehabilitation Units were well evaluated including Goole, York and Bridlington hospitals and Alderson Resource Centre.
4. One person hadn’t been referred to Family Support from Goole hospital.
5. Regardless of where they had been treated, many patients and carers said that they did not get enough information while in hospital. Some users complained of too little written information, others wanted more verbal communication and some people felt generally that information and communication were poor in the acute stage, with the exception of the help they received from Family Support. One person did however feel ‘a bit inundated as there was a lot of literature’.
6. Many users and carers of the service found it particularly difficult to get information and advice about benefits and Social Services’ support. Scarborough and Bridlington Hospitals seem to have done better, as patients had found useful information on notice boards, including how to access services and benefits.
7. Several comments were made about the length of time it took to receive equipment and aids.
8. Requests were also made to consider longer term therapy input and there were some references to inadequate speech and language therapy, and lack of psychological input and cognitive assessment.

(a) Continue to review and monitor patient and carer experiences via Strokewatch feedback forms, with the Nurse Consultant following up any concerns raised by patients and carers in this way.

(b) Family Support to make sure all staff on the Rehabilitation Ward (2) at Goole know how to contact them.

(c) The recently introduced Patient Information and Hand Held Record should improve verbal and written information. This will be evaluated towards the end of 2003. The Stroke Service will develop an agreed guideline for the giving of written information for various needs. This will then be circulated to all areas.

(d) Strokewatch and Nurse Consultant to meet representatives from Hull and East Riding Social Services, carers’ support services and other advice organisations to agree how best to advise patients and carers about benefits and other support services, and to consider whether notice boards should be provided in hospitals specifically on these issues.

(e) Community Therapy team to comment on equipment/aids problems so that this can be addressed.

(f) Community Therapy team to comment on developments needed for longer therapy input, and on the availability of psychological input and cognitive assessment.

Dinah Fuller and Dilys Page
May 2003