Patients and carers often describe the Stroke Family Support service as their lifeline. Family Support workers are specialists in stroke: they are advocates, link workers, key workers and facilitators.
They bring vital practical and emotional support, encouragement, information and ideas to patients and carers who might be forced by stroke into a total rethinking of their lives.

With other elements of the new stroke service struggling to provide the quantity and quality of input required, the role of Family Support is all the more crucial. This paper includes ten proposals (section B) to expand and enhance Family Support to enable it to play this crucial role more effectively and to respond flexibly to changes in the stroke service.

Section A provides ten reasons for our ten proposals. A.

Patient and carer views on Family Support

1. Patients and carers have repeatedly told Strokewatch and their Stroke Clubs that Family Support was their lifeline.

2. The Family Support worker was the person who helped them to understand the causes and effects of stroke.

3. Family Support has initiated four successful stroke self-help/support groups in the area.

4. They valued Family Support's advice and referrals (on therapy, prevention, equipment, benefits, emotional and psychological problems, career and interests etc).

5. They appreciated Family Support as 'troubleshooter' - able to liaise with other services when arrangements break down.

6. They particularly appreciated the continuity offered by Family Support - they had contact with the same Family Support worker throughout the first year after stroke.

7. Knowledge of patient career - the Family Support worker is often the only person who sees the stroke patient's progress over 12 months.

8. We have numerous examples of the success of Family Support workers in encouraging and motivating stroke patients to develop new and often life-changing skills and interests.

9. From a patient and carer perspective, Family Support acts effectively as key worker and link worker throughout the year following stroke.

10. Strokewatch believes that the independent status of Family Support outside the NHS puts them in a key service monitoring position, alongside patients and carers.

B. Ten proposals

Strokewatch would like to see the Family Support service in Hull and the East Riding of Yorkshire enhanced in the following ways:-

1. We would like to see Family Support workers making contact with patient/carer as soon as possible after they go home from hospital or rehabilitation unit, to check that needs are being met (e.g. services, equipment), rather than waiting for a month before the first visit, as they currently do.

2. In fairness, the service should be extended to include stroke patients who move into residential or nursing homes, and their families.

3. The stroke service would benefit from the attendance of Family Support at stroke team meetings on a regular basis, to ensure their effective contribution to monitoring the service.

4. Family Support workers seem to us to be best-placed to facilitate completion of 6 month and 12 month patient progress record forms (as discussed 29/5/01 by Stroke Pathway Monitoring Group).

5. Strokewatch would appreciate regular meetings with Family Support team to facilitate the co-ordination of feedback on the stroke service.

6. To ensure that long-term support/lifelong programme gets off to a good start, Strokewatch would like to see Family Support maintaining contact over 24 months. Contact in the second year could in most cases be limited to 6 and 12 month checks (by phone where practicable) as part of the audit process.

7. More resources might be devoted to recruiting, training and supervising volunteers to work with Family Support team.

8. More resources might be devoted to facilitating self-help/support groups.

9. Consideration might be given to securing funding for a quality investigation of scope of family support.

10. If the shift from ER&HHA to PCTs necessitates Family Support having separate contracts with each PCT, we think it is important that Family Support workers should continue to work as a team and a single service across all four PCTs. In our view it would be detrimental to Family Support to replace one service with four separate ones.

C. Action

In view of PCTs taking over service commissioning in the near future, could ER&HHA bring PCTs, Social Services, Family Support and Strokewatch together to discuss the scope of Family Support and these proposals?

Dilys Page
Strokewatch
7 June 2001