THIRD REVIEW Period ending 30 November 2003 (86 returns over 25 months)

This is the third report on comments made on the stroke service by patients and carers using Strokewatch Feedback Forms. The first report, in May 2002, reviewed the first 30 forms. The second report (July 2003) reviewed the 51 forms received over the 17 months ending 31/3/03, including the 30 forms reviewed earlier. This third report focuses on the 34 returns received in the last 8 months. The majority of these respondents used our longer revised form, on which returns began to come in early this year.

Process

Strokewatch’s Feedback Forms are supplied through Strokewatch Bookcases in eleven locations (all acute and rehab units) and are also distributed by the Family Support Service. Since August 2003 the forms have also been folded into Stroke Patient Information and Personal Health Records. In time this should ensure that all stroke patients in Ward 110 and Ward 2 receive a Strokewatch Feedback Form before they are discharged from hospital.

Each completed Feedback Form we receive is copied to the Stroke Nurse Consultant, who replies personally to the respondent to report any follow-up action. Periodic review reports go to the Stroke Working Group, the Stroke Nursing Forum and the Users, Carers and Voluntary Agencies Subgroup.

Rate of response

The forms are now being returned at a rate of 4.4 per month compared with 3 per month over the first 17 months they were in use. We still need to find a way of pinpointing where respondents are in the stroke service when they decide to fill in a Feedback Form, so that we have a clearer understanding of the pattern of responses along the stroke care pathway. There is also still much scope for publicising the existence of the form and the benefits it can bring, so that all staff are aware of the need to encourage patients and carers to use the forms to comment on the service – whatever their experiences, good or bad. However, the inclusion of the forms in the Patient Records should improve the rate of response.

Respondents – general characteristics

Three fifths of the 34 most recent respondents were men, and two fifths of the forms had been filled in by the patient’s spouse or relative, compared with over half in the earlier period.

The average age of patients who have provided recent feedback is 72 (no change from earlier period) – possibly lower than the average age of recent stroke patients in Hull and the East Riding. 15% of our respondents were under 65, compared with 18% in the earlier period.

Respondents were equally divided between Hull and East Yorkshire. A small number of forms came from Bridlington whereas none were received from that area in the earlier period.

Summary of content of recent feedback forms

Among recent respondents, half made wholly favourable comments on the stroke service – more than in the earlier returns (40%), but even among those reporting mixed experiences, there were also noticeably many more positive comments among the recent returns – nearly a third referring favourably to their care and treatment in hospital, mainly Ward 110 but there were also positive references to the quality of care on Ward 2 at Castle Hill and at Goole Hospital.

About a third of respondents referred enthusiastically to their experiences in rehabilitation units, with Alderson again being mentioned most frequently. Again, well over a third of respondents expressed appreciation for the help they had received from the Family Support service. There were requests for more follow-up visits from this service, and gratitude to Family Support for putting them in touch with local stroke clubs(e.g ref 74). Strokewatch was particularly pleased to receive from one patient a glowing endorsement of the Stroke Survival Handbook: Everybody should have one! (ref 86).

Negative comments mainly concerned delays of one sort or another – long waits in AAU, delays in getting scans, waiting too long for a bedpan(74), for promised day care to help with bathing, for banister rails, for speech therapy and dysphasia support (ref 52). The worst case in respect of delays was someone who had waited 5 months to get Social Services to do an assessment for help with bathing (70). Other bad experiences included two people who were upset because they felt they had been discharged too soon – one being readmitted to HRI (ref 81) shortly after discharge, only to have to go through the same lengthy procedures all over again (after which everything went well).

A relative who was otherwise very pleased with one of the rehabilitation units complained that her mother was put to bed at 6/6.30 p.m. unless the family was visiting(73). There were some complaints about the food at HRI. There was praise for some GPs in relation to after-care but one or two complaints about GPs not referring people to HRI. Fewer recent respondents complained about inadequate therapy but one person said they couldn’t access community speech therapy(52).

The following suggestions were made by respondents:

· It was suggested that stroke care settings should be provided with bidets (75). ‘Washing problems can be very embarrassing at first, after a stroke’.

· More help and more time needed on Ward 110 at mealtimes (86).

· ‘Stroke patients are often disoriented. Hospital ward and bed could be colour coded to help patient identify where they need to be. Also we need information on staff uniforms, and eye level name badges. Clocks should indicate a.m./p.m. and the date. ‘(57)

Further extracts from recent Feedback Forms are appended.

Dilys Page
Strokewatch
January 2004

APPENDIX

NB Reference numbers are followed by sex and age of patient

Ref 52 (m66) Need more continuity after discharge from Alderson Rehab Unit. No community Speech Therapy and still waiting (6wks) for Dysphasia Support and promised day care for bathing. Alderson excellent – everyone deserves a medal. Father really happy there – learned to walk. OTs exceptional and care staff made time to talk to him – brought him CDs as he loves his music.

Ref 55 (m77) 6hrs before examined by a doctor. Nurses kind. Wife amazed next day to be told he was being discharged with full mobility – couldn’t hold a cup, disoriented, could not write and not good on feet.

Ref 56 (f64) Every GP surgery should have information on stroke and Family Support service. Should inform patients about Family Support.

63 (f70) Difficult parking at HRI. Excellent hospital service from all concerned. Ward110 team system hard to work out at first. First class physiotherapy staff. Pulp food so uninviting. Staff need more help at mealtimes. Aftercare services unbelievably good from GP, community nurse and Family Support.

Ref 64 (m77) Family Support worker helped with short walks and showed me hand exercises and was so kind to wife and I. Gave me confidence in myself. I am well on the road to recovery again. You do a wonderful job. Thank you.

Ref 67 (f56) Would like to have had doctor to sit down and answer questions instead of waiting for an out-pt appointment. Staff so busy could not really expect them to answer questions.

Ref 68 (m83) Alderson a wonderful place … Staff the most caring people I have ever met. That’s why I am so well today. Especially a young lady who helped me to speak again. Bless em all!

Ref 69 (f86) Well satisfied with care in hospital and after. All very caring.

Ref 73 (f99) Special praise for hospital care, HRI and CHH. ‘The care and attention we received from the NHS could not be bettered – we are highly satisfied’. Their only grumbles were that the home care provider’s administration didn’t match the high quality of their care workers, and that they’d had a six week wait for a banister rail. ‘From the moment the paramedics arrived until time transferred for rehab the care could not have been bettered. Every consideration given in AAU, HRI and CHH W2. Treated as a person and respected as an individual – fully informed by all staff involved.’ At home, ‘the helpers and physios are working wonders’.

Ref 74 Alderson staff great – more like home.

Ref 75 (f67) Treated with kindness and respect wherever I was (Middlesex then Ward 110 HRI then Ward 2 CHH). Alderson – excellent care – everyone worked as a team. Carers were like an extended family.

Ref 76 Care on Ward 1 ‘superb, faultless’. ‘Excellent support and information from Family Support. She drew diagrams – never hurried. Helpful suggestions. Genuine interest … encouragement… ways of coping…’ (wife of pt).

Ref 77 (f) More support needed for those people who need encouragement and reassurance.

Ref 78 Medical treatment on Ward 110 superb – could not be equalled - despite food! ‘I would not insult my dog by giving it to her. Can’t have a meal without gravy!’

Ref 79 Good information on Ward 110

Ref 80 ‘Excellent nursing care at all times’ (Scunthorpe and Goole hospitals). ‘Physiotherapists at Goole verygood – they and all the nursing staff worked very hard to get me more mobile’.

Ref 81 – AAU 28 hrs on trolley then discharged even though unwell but readmitted within 80 mins – same procedure all over again. After this everything excellent from home care, physio, stroke club, TIA clinic and follow-up. Ref 82 (f) ‘A stroke is very frightening. I have always been so active – at 71 I couldn’t believe it had happened to me’. Hard for her as she cares for husband. ‘ I definitely think we need you all, to cope with it. I really needed her (Family Support worker). Knew I could call her if needed or worried, because you do worry. The service is marvellous and very much needed.’

Ref 83 ‘Very helpful advice from Family Support about eating, walking, exercise’.

Ref 86 ‘Would have been lost without Family Support. She listened to our thoughts and fears and gave us inspiration to get our lives back on track’.

Ref 86 ‘Would have liked more advice from Ward 110 how to help husband with wife’s rehab – but caring staff and very clean.’

DILYS PAGE JAN 2004