Improving services for younger stroke survivors and their families

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“I don’t know how quick he’s going to progress,at what point I’ll be able to leave him, but Imean I can’t go, there’s no way I could go backto work just now…”Carers who did return to employmentreported being exhausted, although onerelative drew attention to the benefits ofleaving the home for a period of time andthe importance of her income for thewhole family.The financial impact of one or two adults ina household giving up work is considerable.Carers drew attention to the increasedexpenses incurred, for example travel forhospital visits, or extra heating bills inhouses which are not usually heated duringthe day. For some YSS and their familiesincreased expenses in conjunction withreduced income, and in some instances noincome for a period of time, could result inspiralling debts.Survivors and carers were not automaticallygiven information about welfare benefitswhen discharged from hospital, e.g. whichbenefits they might be entitled to or how toapply. Many reported having difficultyapplying, accessing information orcompleting application forms. One YSS whocontacted the Benefits Agency helplinefound the operator particularly unhelpfuland unable to accommodate his visualimpairment incurred through the stroke.Those who did receive help, for examplefrom a social worker, were grateful andwhen benefits were awarded they weremuch appreciated:“We’ve got DLA, it came through, we’ve got thehigher rate for that… it’s lovely, it’s absolutelygreat, we’ve been given it for two years…”23Improving services for younger stroke survivors and their families
Recommendations – Coping in the communityServices• Members of stroke teams working in the community should be aware that YSS and theircarers, particularly where the cause of stroke is unknown, are concerned aboutrecurrence. YSS should be informed that relevant tests will be carried out as soon aspossible.•YSS should have access to therapists as required. Wherever possible YSS should receivetherapy with other younger people, e.g. through a physical disability team.• Therapists should work in partnerships with YSS, explaining the purpose behind specifictasks or procedures and informing them of progress.• Where services are being terminated YSS should be given advance notice. If appropriateYSS should be made aware of suitable exercise classes e.g. those organised by voluntaryorganisations. Greater use should be made of referrals to local gyms.• Homes should be re-assessed after discharge in order to ascertain if further adaptationsor equipment are required.24• Where appropriate YSS should be supported in making lifestyle changes, e.g. smokingcessation or dietary changes.Carers•YSS and their carers should be made aware that mood swings and depression areprevalent post-stroke. Families should be encouraged to discuss these issues and bereferred to a counsellor or psychologist if required.• The input of relatives and other supporters must be acknowledged. Health professionalsworking with families in the community should carry out carers’ assessments and monitorthe transition to caring, paying particular attention to family members with multipleresponsibilities e.g. young children and employment.Stroke nurses• Where families include children or young people stroke nurses should ascertain whetherthere are any difficulties and provide written information appropriate to their age group.• Stroke nurses should provide support to carers as well as survivors, seeing them on theirown in order to identify difficulties that they may be uncomfortable discussing in thepresence of the YSS.• Stroke nurses in contact with families should ascertain whether or not carers were inemployment at the time of the stroke and ensure that support is in place to enable themto return to work.•YSS and their families needing support in the community should be offered the option ofreceiving Direct Payments which would enable them to organise their own services.Improving services for younger stroke survivors and their families
Page 1 and 2: Improving services foryounger strok
Page 4 and 5: In addition, however, this report a
Page 6 and 7: People who have a stroke experience
Page 8 and 9: Recognising stroke and seeking assi
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Page 12 and 13: “I think people that’s working
Page 14 and 15: wasn’t a ward for taking the kids
Page 16 and 17: Recommendations - Inpatient stay•
Page 18 and 19: e.g. physiotherapy and/or occupatio
Page 20 and 21: Recommendations - Discharge from ho
Page 22 and 23: travelling on hospital transport fa
Page 26 and 27: Moving onThe rate of physical progr
Page 28 and 29: Despite being prescribed anti-depre
Page 30 and 31: Impact on relationshipsOne of the m
Page 32 and 33: •Younger people who have experien
Page 34: Chest, Heart & Stroke Scotland65 No

Improving services for younger stroke survivors and their families

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