This is the second report on the comments of patients and carers sent to Strokewatch through its Feedback Forms. The first report was produced for the Feedback Task Group in May 2002 and reviewed the first 30 forms.This report covers the 51 forms received over the 17 months ending 31/3/03, including the 30 forms reviewed earlier. A table summarising the content of each form is appended.

Process
Strokewatch supplies patients and carers with Feedback Forms through eleven Strokewatch Bookcases in acute and rehab units. Forms and freepost envelopes are also distributed by the Family Support Service and at Strokewatch’s Jubilee Stroke Day and AGM events. Each returned form is copied to the Stroke Nurse Consultant and Family Support, and Dinah Fuller is now able to reply personally to each respondent to report any follow-up action. Periodic reviews go to the Stroke Working Group, the Stroke Nursing Forum. and the Users, Carers and Voluntary Agencies Subgroup.

Respondents – general characteristics
Although nearly three fifths of the stroke patients in the earlier batch of forms were men, the sex ratio for all patients who sent in Feedback Forms by the end of March was 50/50. Again, just over half (56%) of the forms had been filled in by someone other than the patient, usually a spouse or relative.

The average age of patients referred to in our forms to date is 72 – possibly lower than the average age of recent stroke patients in Hull and the East Riding. 18% of our respondents were under 65, 38% were 65-74, 38% were 75 or over (age not known for 6% of patients).

Over half (57%) of the respondents live in the East Riding and 43% in Hull. Bridlington is so far the only area from which there has been no response.

Only five of the 50 respondents have to date used the new Feedback form, which we were able to produce with the help of a grant from Lloyds TSB. The first of the new forms was returned in January 2003 although they were distributed several months earlier. The response rate is still averaging only 3 forms returned per month. We need to make more effort to ensure that staff at all stroke service locations are actively encouraging the use of the forms (see Action Points).

General impressions of service
As with the earlier batch of respondents, twenty (40%) were wholly favourable, although it was not always clear whether the patient was referring to their whole stroke service experience or to one of the rehab units. Most respondents made a mixture of favourable and less favourable comments. Very few were wholly negative. The new feature we are particularly pleased to report is that, through the efforts of the Stroke Nurse Consultant, a Feedback Form has in some cases resulted in a patient’s problem being alleviated.

Favourable comments on specific aspects of stroke service
‘I want to say what an excellent experience it has been (rehab at Alderson). The staff give every encouragement to you to improve your recovery without too much physical help. They have endless patience and the rooms are so tastefully decorated and furnished that it is more like a first class hotel. While obviously wanting to get home, your stay makes it seem like a holiday in a pleasant location with people having similar difficulties. I cannot think of any way Alderson House could be improved – it should be copies in all National Health areas. Sorry, I still have to improve my writing – that will come with practice.’ (Ref 41 - 9/02)

The rehab units are still attracting very favourable comments, especially the Alderson unit (28%), Rossmore and St Mary’s. Beverley Westwood, Hornsea and Goole Hospital rehab units have also been mentioned but so far we have had no comments on rehab at Driffield, Withernsea or Bridlington, although we have had favourable feedback from other sources.

As in the first batch of forms, it is clear that the Family Support service is highly valued by many stroke patients – 30% singled it out for praise (25% in the earlier batch), emphasising the usefulness of the information and practical help they supply, but also the qualitative aspects of the service – emotional support, comfort and reassurance.

In the earlier batch of forms it was the acute unit which generated most critical comments. It is encouraging that since May 2002 more patients have been reporting good experiences in Ward 110. Some patients treated on other wards were impressed with their care but others were critical. There were mixed comments about the Admissions Unit, but patients aren’t always clear about where they were treated. In at least one case investigated by DF it has emerged that the patient was treated satisfactorily for 3 days in AAU (and discharged home from there) but was under the impression that she had been in the stroke unit.

Critical comments
The three main issues of concern emerging from the Feedback Forms so far are lack of information, lack of therapy and specific problems in accessing speech and language therapy, and a general plea for better follow-up after the patient returns home. One patient’s comments reflect the disappointment and isolation often expressed by stroke patients when their therapy is stopped:

Since discharge the only contact I have had is with (Family Support worker). My doctor is treating me for asthma and on my (weekly) visits to his surgery no mention is made of the stroke. My progress seems to have stopped. At first I felt a bit more myself each day that passed but I seem to have come to a full stop. I am not even sure that medication given to me is for the stroke or for my asthma, and my doctor is not one that would tell me. (ref 42)

This suggests that GPs need to be reminded or encouraged to monitor patients’ progress when they return home. The new Patient Health Record, now in use, may prompt patients to take the initiative in this respect.

It is reassuring, however, to find that other patients are having no problems in getting continued therapy at home. Feedback at the Driffield Jubilee Stroke Day showed good access to therapy in that area. In other areas patients wait longer for therapy, with seemingly greater difficulties in accessing speech and language therapy. The wife of a Withernsea patient was aggrieved about this problem –

It seems ludicrous that he will get speech therapy for 6 weeks and then have to wait months to get more at Hull.’

A fifth of all respondents felt they needed more therapy after discharge, and one person drew attention to the lack of specialist physiotherapy in West Hull. In several cases, problems highlighted in the Feedback forms have been successfully addressed as a result of follow-up by the Nurse Consultant.

The main criticism arising from the acute stage of stroke, which is obviously the time of greatest distress and anxiety for both patients and carers, was the difficulty some of them had in getting questions answered, particularly about the results of tests, and a general lack of information about their stroke and treatment. Many people said that they wouldn’t have had any information had it not been for Family Support Workers, who are not seen by a minority of patients (treated on other wards) until well after they had returned home.

It is expected that the introduction of the Patient Information and Personal Health Record will help to satisfy the information needs of patients and carers if staff, including possibly the Family Support Worker, can find time to complete the basic record – type of stroke, effects of stroke, results of investigations, risk factors etc. – at an early enough stage when there is most confusion and upset. Even if there is a delay in completing the early pages of the record in the acute unit, the booklet should help patient and carer to appreciate which of their many questions they can expect to be answered.

Predictably, accessing appropriate advice and help with financial problems arising after stroke is a major and complex problem for many patients and carers. Family Support workers and carers’ organisations provide basic advice and signposting but some patients and carers find grappling with Benefits Agency leaflets and application forms a daunting and frustrating experience. This problem has been well-aired at the Driffield and Goole Stroke Days, as well as in the Feedback forms, and is being flagged in the resulting action plans.

Conclusions – scope and limitations of the data
As pointed out in our earlier report, the feedback obtained through Strokewatch’s Feedback forms is valuable but we need to be clear about its limitations and the information needs to be used in the right way. Users’ and carers’ comments on the Feedback forms present at best an incomplete and possibly distorted (we don’t have any way of knowing how incomplete and how distorted) picture of the stroke service. If we want to generalise and draw conclusions about the quality of the stroke service, we would need a more structured form to be completed at a particular stage in the patient’s progress – e.g. 6-12 months post-stroke – or, as in Walsall, exit interviews with patients when they leave each stage of the service.

But in defence of the current Feedback Form, it is more than likely that patients and carers are expressing themselves to Strokewatch more openly than would be the case if the forms were provided by the service itself. It is also the case that the comments of individuals, however untypical – and every stroke is different, as we keep saying – are wholly valid and valuable about that one individual’s experience. If we can act promptly on such comments when they indicate possible shortcomings or gaps in the service, and if we pass on the appreciation of satisfied patients and carers to staff who have given them positive experiences, Feedback Forms will be doing a good job in contributing to the continuous improvement of the stroke service

. We already have good evidence that this is happening, and we want to thank those concerned for all they are doing to ensure that the forms are getting to patients and carers and that their comments are followed up.

Action points
The action points made in our earlier report (1-5 below) are still valid – although most still need to be actioned – and we can now add a few more. Updates and new suggestions for action are shown in bold.

• Posters about the feedback forms should be displayed in all stroke service locations, directing patients and carers to a supply of the forms in the Strokewatch Bookcase. Update - Strokewatch didn’t do anything about this – it would be easy enough to print the cover sheet of the new Feedback Form as a poster.
• If we revise the form we should ask respondents to state where they obtained the form.
• This report to be sent to managers of the eleven stroke service locations with a request that staff draw patients’ and carers’ attention to the forms, and encourage them to use them to record their experiences, good as well as bad, and their suggestions for improving the service. Update - This was not done – except through the Stroke Nursing Forum and the Feedback Sub-group and Task Group.
• Now that the eleven Strokewatch Bookcases are in place, the availability of Feedback Forms is checked on Strokewatch’s quarterly visits to replenish literature. At some units staff let us know when their supply is running low.Update - No serious problems.
• These last two points raise the question of when patients fill in the forms – and whether ideally we want them to fill them in more than once, if they transfer to another unit of the service. Update – as the feedback process in its present state can’t catch all patients we have to accept that we only get forms when people are invited or want to fill them in. So far only one person has responded twice. We might get some useful further feedback if we could send a brief Update Request form to the 50 respondents who have returned forms to date.
• A suggestions, ideas and comments postcard might be an advance on or a useful addition to the Feedback Form, and less open to misinterpretation. Update - This suggestion was made in the May report but never acted upon. Discuss again at next Feedback Task Group.
• We need to keep the original, simpler form in circulation as FS workers have told us that some people are put off by the length of the revised form. Update - Send supply of original forms to all FS workers.
• We need to distribute the forms at all our Jubilee Stroke Days. Update - This is happening now.
• Strokewatch to ask to visit each part of stroke service to speak to staff about encouraging patients and relatives to use the forms and to stress that they are for all comments, not just complaints. Update - How can we encourage invitations?
• It has also been agreed that Feedback Forms can be inserted in the Patient Information and Personal Health Record booklets. Update - Strokewatch to supply Rachael with forms.

Dilys Page, Strokewatch
5 April 2003