Improving services for younger stroke survivors and their families

Improving services foryounger stroke survivorsand their familiesDr Pauline Banks & Dr Charlotte Pearson

ContentsExecutive Summary 2Improving services for younger stroke survivors and their families 4• Background 4• Method 5• Results 6Recognising stroke and seeking assistance 7Admission to hospital 10Inpatient stay 12Discharge from hospital 16Coping in the community 20Moving on 251• Continuing support 25• Depression and emotional changes 26• Employment 27• Financial impact 28• Impact on relationships 29References 32Acknowledgements 32Improving services for younger stroke survivors and their families

In addition, however, this report alsohighlights particular issues specificallyaffecting younger stroke survivors and theirfamilies, including:• the impact of receiving acute care andrehabilitation within services cateringprimarily for older people• the difficulties experienced by relatives orcarers with family, employment and otherresponsibilities• the need for information and enhancedsupport in areas including retraining,education, access to employment andwelfare benefits• the key role which specialist stroke nursescan potentially play in providingindividualised support• the need to acknowledge and supportfamily and other carers3Improving services for younger stroke survivors and their families

Improving services for youngerstroke survivors and their families4This report presents the findings of a twoyear project funded by Chest, Heart andStroke Scotland, and carried out by theStrathclyde Centre for Disability Researchof the University of Glasgow.The aim of the research was to establishthe current provision for younger strokesurvivors (18-49) in Scotland, andinvestigate the experiences of youngerstroke survivors (YSS), and their relatives orcarers in order to identify:•ways in which service provision for thisclient group could be improved•any potential barriers that may hinder asmooth return to independent livingBackgroundIn Scotland, 4,598 adults of working age (18-64) were admitted to hospital following astroke in the year 2000-2001. Of these,1,100 were aged less than fifty. However,because the incidence of stroke increaseswith age, service provision is often gearedtowards older individuals, neglecting theparticular needs and expectations ofyounger stroke survivors and their families.In addition to age, gender and deprivationare implicated in the incidence of stroke.Under the age of 45, there is littledifference between males and females.Above 45, however, incidence increasesmore rapidly amongst males than amongstfemales.There is a higher incidence of, andmortality from, stroke amongst people ofworking age (less than 65) living in deprivedareas. However, amongst people over 65there is no association with level ofdeprivation.The following chart shows the incidence of “young” stroke per thousandpeople of working age in Scotland in 2000-2001:10987654321018-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64MaleFemaleImproving services for younger stroke survivors and their families

People who have a stroke experience asudden onset of disability; about half are leftwith a permanent handicap 1 . Damage mayresult in both physical and mentalimpairment. Stroke impacts on both patientand their families 2,3 and research hasdemonstrated that many family care giversexperience difficulty coping with their caringrole.MethodThe study adopted a longitudinal approachcollecting data from young stroke survivors(YSS) and their relatives or carers (RorC),over a period of nine months, as well asfrom key informants including hospitalconsultants, stroke nurses, therapists,project managers, and voluntary sectorworkers.The first interviews were carriedout 3-6 months post-discharge fromhospital, and the second 6-9 months later.Between interviews participants wereinvited to keep a diary.The first interviews used the Lifegridmethod 4 , and took participants back tothree months prior to the stroke, in orderto ascertain what was happening in theirlives at that time, and then covered theperiod up to the interview. Participants alsocompleted the SF36, which wasincorporated into the interview.The secondinterview took up from where the firstinterview finished, and built on informationderived from the diaries, where available.Although interested in all ‘younger’ adultsexperiencing a stroke, a decision was takento focus on those aged 18-49 years in orderto concentrate on individuals who werelikely to have been economically active andmight have dependent families. FiftyYSS/RorC dyads were recruited at time 1,with 29 YSS and 24 RorC interviewed againat time 2.The research was carried out in four NHSHealth Boards across the central belt ofScotland, with participants in the study livingin a variety of socio-economiccircumstances.Twenty-nine YSS were male and 21 female.Four out of five lived with the RorC whotook part in the study; six lived alone. Justunder half the YSS lived with dependentchildren/young people aged less than 20.Two-thirds of RorC were partners orspouses and another seven were parents,with the remainder were siblings, offspring,and friends. Two-thirds of RorC werefemale, and one third male; the youngestwas in their twenties, the oldest over 80.Interviews were taped and fully transcribed.Analysis of qualitative data was carried outusing NUDIST, a computer package for theanalysis of qualitative data. Quantitativedata were analysed using SPSS.5Improving services for younger stroke survivors and their families

6ResultsThe NHS in Scotland is undergoing change,and while this research was being carriedout stroke services across the countrywere in a state of flux. We foundconsiderable disparity in the move toprovide care for more patients in strokeunits, together with fast track clinics forpeople experiencing minor strokes ortransient ischaemic attacks (TIAs). Despitedifferences in the rate of progress betweenhealth board areas the findings from thisstudy indicate that ‘seamless care’ continuesto be an aspiration rather than a reality.Stroke patients require a clear pathwayfrom the time of the event to maximumrecovery. Sufficient flexibility should beavailable to accommodate differences in age,gender, family commitments/circumstances,and of particular importance to youngerpeople, what they are likely to be able toachieve in terms of returning toemployment. The findings from this studywill be presented in chronological order toreflect the patient journey:• Recognising stroke and seeking assistance• Admission to hospital•Inpatient stay• Discharge from hospital• Coping in the community•Moving onAs with all staged approaches some YSS willcomplete their journey more quickly thanothers. Recommendations focus on timeperiods or incidents, which resulted inparticipants in this study experiencingdifficulty or not feeling supported. In someinstances the same recommendations areincluded more than once so that issuesmissed at one stage will be picked up later.Examples of good practice are alsohighlighted.While some recommendationshave resource implications, others involveminor changes in working practice and/orawareness-raising amongst healthprofessionals.Improving services for younger stroke survivors and their families

Recognising stroke and seeking assistanceMuch of the information in this section wasderived from relatives or carers, becausemany survivors remembered little about thestroke event and the time periodimmediately around it. YSS and their carersspoke of difficulty recognising the symptomsof stroke. They reported being reluctant tocontact GPs out of hours, or emergencyservices. A number of survivors and theircarers reported having received a differentdiagnosis initially and being reticent aboutasking for further assistance.Several stroke survivors and/or their carersreported having experienced a great deal ofstress prior to the stroke, e.g. overwork,losing a job, family problems. Because wedid not have any form of control group wedo not know how the daily lives of ourparticipants compared to other peopleliving in similar environments. Neverthelesswe believe that the events preceding thestroke are important in that they mayimpact on an individual’s resilience andability to cope at that time.A number of YSS reported that their healthhad been poor for a long period prior totheir stroke, while others recalled a gradualonset of illness and remarked that theywere perhaps aware of early symptoms andthat something was wrong. Carersreported that the survivor had experiencedmood changes or altered behaviourpatterns prior to the stroke; in some casesthey had encouraged the YSS to visit theirGP because they had felt that somethingwas wrong.Several YSS had experienced what theirrelative or carer described as a warningprior to the stroke event. Seven reportedhaving had at least one TIA, while othershad high blood pressure or heart problems.Other survivors felt that the stroke hadoccurred out of the blue, describing a fit andactive lifestyle leading up to the event:“At the time I was fit, I went to the gym…I’mnot a heavy drinker and I eat the right things.Everyone kept saying ‘You’re the last person I’dexpect to suffer something like that.’”Several of the YSS confused their earlysymptoms with other conditions anddelayed calling for medical help after theirinitial onset. A number were diabetic andattributed symptoms to the condition.There was a lack of awareness of theincreased risk of stroke amongst diabetics.Relatives’ or carers’ involvement in thestroke event varied with their relationshipto the stroke survivor and the timing ofonset. Realising that someone is in need ofhelp often falls to those around them at thetime, and it can be difficult for people torecognise what is happening and to thenchoose an appropriate course of action.The symptoms described by participantsvaried widely. Relatives or carers who werepresent when the stroke occurreddescribed the ambiguity of initial symptoms:“I thought I noticed something about herface… but I thought it was just myimagination…”7Improving services for younger stroke survivors and their families

8The majority of carers who were present atthe time of the stroke phoned their GP andrequested a home visit. Only five reportedthat they had phoned an ambulancethemselves without first contacting their GPand six went directly to Accident &Emergency (A&E). Reluctance to botherGPs or call out emergency services can bemisinterpreted by health professionals whomay not appreciate how difficult thesedecisions are for people who have noprevious experience of ill health:“It’s a problem to decide whether someone isreally ill or not… in hindsight I’d wished I’ddialled 999…”One carer spoke at length of her feelings ofguilt following her husband’s stroke – thehospital doctor had asked her why she hadwaited so long to seek help.Advice received by YSS who attended theirlocal health centre varied. One carerexplained that her husband had been toldto go straight to the hospital where he wasadmitted. However, he was not told that heshould not drive to the hospital. AnotherYSS who attended his GP was told that hehad probably had a slight stroke. He wassigned off work, given a prescription foraspirin, and told not to drive. He eventuallyreceived an appointment for an outpatientclinic more than six weeks after his stroke.Other YSS reported having been aware that‘something was wrong’ but had found itdifficult to persuade medical staff to exploretheir symptoms. One respondentexperienced particular difficulties when heattended an A&E Department with a sorehead and dizziness on New Year’s Day, anexceptionally busy time for hospital staff.Repeated visits to a busy A&E resulted in agreat deal of distress for the family beforehis stroke was finally identified.Relatives or carers who were not presentwhen the stroke occurred reported verydifferent experiences. The shock of cominghome to find someone unconscious orreceiving a telephone call from a stranger isconsiderable.Improving services for younger stroke survivors and their families

Recommendations – recognising stroke and seeking assistance•Health promotion e.g. Wellwoman and Wellman clinics, posters and leaflets in GP surgeriesshould seek to raise public awareness of the symptoms of stroke, highlighting the fact thatit can affect younger people.•People at greater risk of stroke than the general population, e.g. those who haveexperienced a TIA, have high blood pressure, or diabetes should be made aware of therisk and symptoms which should prompt them to seek medical advice.•People experiencing minor stroke or TIA who are not admitted to hospital should haveaccess to a ‘one-stop’ neurovascular clinic within 7 days, ideally within 72 hours of theirevent as indicated in the Coronary Heart Disease and Stroke Strategy for Scotland 5 .• GPs should be aware that stroke can affect younger people and that patients presentingwith symptoms of stroke should be investigated.• GPs who refer suspected strokes to their local hospital should ascertain how patients areintending to travel and make arrangements where indicated.•Health professionals including GPs and staff in A&E departments should reassure patientsand their families that they can seek further help or advice if the patient’s conditiondeteriorates or fails to improve.9Improving services for younger stroke survivors and their families

Admission to hospital10The majority of young stroke survivorswere admitted to hospital through A&E. Innine of the hospitals involved in this studyacute care was provided through designatedstroke units. Nevertheless participantsreported that the link between stroke andgeriatric medicine was apparent. Wherestroke units were not present or whenbeds were not available, admissions weremade through general medical wards. Intwo thirds of cases, the first day or two ofcare was spent on general wards prior tobeing moved to designated stroke care.More than half the YSS expressed specificunease at the hospital accommodation. Formany, being admitted to a ward with olderpeople caused considerable anxieties:“It was frightening in the hospital because theysaid,‘We’re going to take you up to the geriatricward…’ I tried to make a joke out of it, sayingthat I’m not a geriatric, but that was whereeverything was done.”Several YSS remarked on the differencesbetween the time spent on the generalmedical wards and the specialised strokeunits, praising the stroke units.Almost all carers had some idea that thestroke survivor was being admitted forsuspected stroke and that tests wouldrequire to be carried out. However, delaysin carrying out tests and inconclusive resultswere found to be unsettling.One carer reported that he had haddifficulty communicating with the hospitaldoctor. He felt that the doctor had nottaken advantage of his familiarity with theway in which his wife normally talked, andthe ways in which her current speechdiffered from this:“The doctor didn’t quite pick it up… she waslosing the power of her speech… he wasn’tquite understanding what we were saying…”Relatives or carers reported varying levelsof satisfaction with information received atthe time of admission. Leaflets that couldbe taken home were particularly popular:“They sat me down and they told me a goodbit… it made me feel a lot better… kind ofsettled me down. We brought some [leaflets]home and I’ve still got them…”However, it was apparent that some carersfound it difficult to cope with uncertainty:“I think [doctor in hospital] was just telling mewhat had happened and what I was looking forat the time was,‘What will happen from nowon?’ …obviously he couldn’t give me anyanswers because they just don’t know…”The level of satisfaction with informationreceived did not appear to be directlyrelated to the amount of information givenby health professionals. While somerespondents stated that they found toomuch information difficult to deal with,others reported having higher informationneeds. One carer felt that hospital staff didnot realise what a shock a young personhaving a stroke was to families, and howinformation could easily confuse or upsetthem:Improving services for younger stroke survivors and their families

“I think people that’s working in wards withstroke people… they see so many people atdifferent states of disability that it’s every day…but to the relatives it’s a disaster…”The experience of another carer certainlysupports this assertion. On phoning toenquire how her husband, who had beenadmitted the previous evening was gettingon, she was told that he was ‘fine’; howeverthe reality when she arrived at the hospitalwas somewhat different:“The doctor came and said they’d done all thetests and that he’d taken a small stroke – we’dhad no idea, nothing…”Recommendations – admission to hospital• Where possible all patients should be admitted to a specialist stroke unit, where they willbe looked after by a multi-disciplinary team as recommended in the Coronary HeartDisease and Stroke Strategy for Scotland 5 .• In localities where, due to population density and socio-economic circumstances, there isa relatively high incidence of younger people experiencing strokes, designated ‘younger’stoke units should be created. For example younger stroke patients could beconcentrated in one site in the larger cities.• Where younger stroke patients are treated in wards with a mixed age profile, healthprofessionals should be aware that being treated in close proximity to very elderlypatients is a major concern for younger people experiencing a stroke and their families.Patients and their families should be informed, in a sensitive manner, that the best carecan be provided by admission to a stroke unit that caters for patients of all ages.• All health professionals should find ways of ensuring effective communication withpatients and their relatives in order to benefit from relatives’ knowledge of the patient in‘other’ circumstances.•Health professionals should keep relatives informed about the nature of tests beingcarried out and/or diagnosis. Carers should be told the best times and methods ofcontacting staff when seeking information about their relative.• In addition to discussions with relevant Stroke Consultants and specialist staff,YSS andtheir families should be provided with written information in plain English or otherlanguages where appropriate.• All staff should be aware that stroke is a unique and traumatic event for each family andthat, particularly amongst younger people, their knowledge of stroke and its implicationsmay be limited.11Improving services for younger stroke survivors and their families

Inpatient stay12Length of inpatient stay is dependent on anumber of factors including case mix, natureand quality of inpatient care, and provisionfor discharge into the community. In thisstudy duration of inpatient stay ranged fromless than a day to 39 weeks. Overall thirtystroke survivors (60.0%) were dischargedafter less than two weeks, a much shorterperiod than the average inpatient stay of39.5 days reported in the NationalSentinel Stroke Audit 2001/02 5(Intercollegiate Stroke Working Party, 2002).As would be expected duration generallyreflected severity of stroke, some YSSrecovering most of their faculties almostimmediately, whereas others developedfurther complications following admission.Ten YSS were given rooms on their own forat least some of their inpatient stay. Thisplaced them separately from many of theolder patients on the wards and wasappreciated by both patients and theirfamilies. Carers voiced their concernsabout the age range on wards. Onedescribed how being in a ward includingolder people had upset his wife who was inher forties:“I thought there were too many elderly patientsall in the one unit for somebody as young asthat. One of them died actually… and shecould hear every word the priest was saying…I think that gave her a scare too… she wasupset…”Other issues relating to wards with a highnumber of older people included YSShelping other patients attract the nurse’sattention when they were distressed, feelingthat the older patients’ symptoms weremore severe than their own, and not havinganyone in a similar situation to talk to.The majority of YSS spoke positively aboutthe hospital staff. For example, participantsreported incidents where staff had beenespecially flexible and had taken intoaccount the specific needs andcircumstances of younger patients and theirfamilies, e.g. allowing family members to visitat any time. One YSS whose wife waspregnant at the time that he had his stroke,and gave birth whilst he was still in hospital,reported that staff were aware of eventsand helped him visit his wife and newborndaughter at the earliest opportunity.Young survivors and their carersacknowledged that accommodating youngerfamilies in stroke wards with older peoplecould be difficult. Some hospitals operatedstrict visiting times, which carers foundparticularly difficult For example a numberof relatives or carers wanted to spend longhours at the hospital. Those who did nothave access to a car often found it difficultto marry public transport or offers of a liftwith rigid times. Carers with young childrenwho had to juggle going to work, hospitalvisits, and looking after other familymembers would also have benefited fromgreater flexibility.“I was coming back and getting the kids fromschool and feeding them, then if they wanted togo up at night and see their Mum, take themup at night. Or if they wanted to stay, see itImproving services for younger stroke survivors and their families

wasn’t a ward for taking the kids into… it wasall old people – so I was dropping them off ather friends or her sisters…”In some cases the inpatient stay involvedmore than one hospital,YSS being moved inorder to access specialist services or forrehabilitation. Moving between wardswithin a hospital was also common.However, it could be quite upsetting forrelatives arriving to find an empty bed:“He was in the high dependency ward and hewas sitting all monitored… and when we wentin at night he wasn’t there…”In fact this patient had been taken to thestroke ward. However, his carer was facedwith a similar situation two days later whenshe had intentionally visited early to catchhim before he went for a scan – he hadalready been taken when she arrived.Patients received support from a mixture ofallied health professionals (AHPs) includingphysiotherapists, occupational therapists,speech and language therapists, in additionto stroke nurses during their hospital stay.Stroke nurses were found in a variety ofguises across the hospital sites and carerswho had contact with them reported thatthey were a valuable source of informationand support.The type and level of therapy receivedgenerally appeared to reflect clinicaldecisions; however, several participantsreported that speech therapy was lessreadily available than physiotherapy oroccupational therapy.“There was supposed to be a speech therapistcome… I think the speech therapist came theday she was getting out. I asked the staffnurse and she says… ‘Well we’ve other peopleto see…’”In addition to variations in the type andlevel of therapy received, the way in whichsupport was delivered and informationprovided by staff varied. In some casestherapists explained the purpose behindcertain tasks or exercises and drewattention to the implications for patients’own lives. One YSS whose wife wasexpecting a baby explained:“One day the physio said to me,‘I need to getyou walking… the baby is coming and I needto get you home.’”Another patient reported that he had beentaken out of the hospital into town to seehow he would cope in differentsurroundings:“For me a big thing was getting out of pyjamasand getting into normal clothes… I felt betterin myself because I was going into town.”Other examples included an OT who triedto replicate a survivor’s home kitchen intherapy sessions and another who usedtasks aimed at regaining skills needed in theworkplace.However, a number of YSS reported thatthey had no idea why they were asked tocarry out certain tasks or do particularexercises, which resulted in either apathy orresentment amongst patients and carers.13Improving services for younger stroke survivors and their families

14One YSS reported that he felt rushed andunsupported by his occupational therapist:“She showed me how to put a T-shirt on and Isaid… ‘How do I fasten my trousers…?’ andshe said ‘Oh, you’ll get help’, and that was it.”Some survivors felt that rehabilitation hadnot started early enough following thestroke, Others thought the duration oftherapy sessions was too short, sometimesonly 5-10 minutes in a day. Attention wasdrawn to the lack of input at weekends.Carers reported that they did not feelinvolved in the care of the survivor whilethey were in hospital. While some admittedthat they were not in a position to judgewhether the provision was adequate or not,others reported that they did not knowwhat services were on offer, or that theywere unsure of the difference betweenprofessionals:“There was a speech therapist, or somebody tohelp him swallow… I think she was a speechtherapist…”A small number of carers who wereavailable during the day were encouraged togo to the hospital and help with exercisesor tasks which gave them a feeling ofinvolvement.Carers raised a number of issues regardingfood in the hospital, particularly in generalwards:“The nurses were telling me that he refused toeat anything because [I] was cooking stuff andbringing it in, but on the other hand… theywere bringing things like chicken curry, andsteak, and he couldn’t eat them…”The majority of patients who were in astroke ward fared better. However, onecarer felt that her husband’s food and drinkhad not being monitored adequately causinghis diabetes to become unstable.Relatives or carers reported that it was notalways easy to access information; it wassuggested that staff did not volunteerinformation and that they had to seek it outfor themselves. Others drew attention tothe problems associated with only visiting inthe evenings when therapy staff were noton duty.A number of carers drew attention to thebenefits of having someone else with themwhen receiving information or of coming tothe hospital with a written list of questions.Information leaflets were popular withsurvivors and carers, both for their contentand because they could be taken home andre-read when verbal information might beforgotten.Improving services for younger stroke survivors and their families

Recommendations – Inpatient stay• Where possible all patients should be treated on a specialist stroke unit as recommendedin the Coronary Heart Disease and Stroke Strategy for Scotland 5• Where younger stroke patients are treated in wards with a mixed age profile, healthprofessionals should be aware that being treated in close proximity to very elderlypatients is a major concern for younger people experiencing a stroke, and their families.Patients and their families should be informed, in a sensitive manner, that the best carecan be provided by admission to a stroke unit that caters for patients of all ages.•YSS should have access to all members of a multi-disciplinary team including speech andlanguage therapy and clinical psychology where indicated.•Attention should be paid to standardising the role of stroke nurses, which should includeliaising with and acting as a contact for families.• Relatives or carers should be kept informed of progress and plans for furtherinvestigations that are to be carried out.• Allied health professionals including physiotherapists, occupational therapists, and speechand language therapists should work in partnership with patients and their families,explaining the purpose behind specific tasks or procedures.15• Issues relating to employment should be addressed immediately post-stroke.Occupational therapists should ensure that they are aware of the previous employmentstatus of YSS in order to address possible alternatives at an early stage.• Visiting hours should be flexible in order to accommodate the needs of families withchildren visiting younger stroke patients, particularly if the patient is being treated on amixed age ward.• Relatives who have difficulty visiting during the day because of work commitments shouldbe notified of the best times and methods of contacting staff when seeking informationabout their relative.• Where families include children or young people stroke nurses should ascertain whetherthere are any difficulties and provide written information appropriate to their age group.Improving services for younger stroke survivors and their families

Discharge from hospital16All stroke survivors described their relief atleaving hospital. However, returning homebrought with it a new set of problems asthe reality of stroke, impairment, andchanges in their day to day living becameapparent:“When you’re in hospital, you don’t really thinkabout how your life is going to be when youleave… You think that you’ll just carry on asbefore but you don’t.You get home and that’swhen the trauma starts.”Although the timing of discharge was basedon clinical decisions, the level and nature ofpreparation differed between cases.Relatives or carers reported having had‘some idea’ of when their relative or friendwas likely to be discharged, based on theirprogress and assessment of the homeenvironment. Nevertheless, a number werequite surprised by how quickly the survivorwas sent home:“We didn’t expect her to get out… I got aphone call after dinnertime on the Thursday tocome and… come and collect her…”Most longer-stay patients spent at least oneweekend at home prior to full discharge.This was a significant stage for both the YSSand their family, particularly for YSS whowere unable to return to their own homesin the first instance – e.g. three YSSreturned to their parental home initially ondischarge.The majority of survivors andtheir carers reported that vital aids oradaptations were provided prior todischarge or as soon as possible thereafter,e.g. internal handrails or wheelchairs. Anumber reported that they would need tomove to more suitable housing, e.g. groundfloor accommodation.Some carers felt that they had little inputinto decisions about discharge, and thatthey were ill-prepared despite the YSShaving had a weekend at home:“So he got out on the Friday and it was hardgoing at the weekend… I phoned on theMonday and you really couldn’t turn round andsay ‘Take him back…’ that was him out, justlike that.”Only one relative or carer reported thatshe had been invited to a case conferenceinvolving members of a multi-disciplinaryteam in order to look at options for herpartner’s future.Carers drew attention to the worriesassociated with taking over responsibilityfor someone who had recently experienceda stroke. Level of anxiety was generallyrelated to the severity or mix ofimpairments, the suitability of housing, andany co-morbid conditions, e.g. a number ofcarers supporting survivors who werediabetic reported problems with stabilisingtheir condition:“I can only imagine it’s like looking after a newbornbaby… your mind’s totally focussed on itall the time… the first couple of days [after]he came out of hospital… he slept a lot, buteven if he turned over… I would be back upthe stairs,‘Are you all right?’”A small number of YSS were dischargedearly as part of a Supported DischargeScheme. This proved to be popular withboth survivors and carers because services,Improving services for younger stroke survivors and their families

e.g. physiotherapy and/or occupationaltherapy, were put in place more quickly thanwas the case for the majority of thosedischarged into the community. However,speech and language therapy was notincluded in the package and had to bearranged separately. One carer whosehusband ‘couldn’t speak at all’ whendischarged from hospital received nospeech and language therapy for over fourweeks post-discharge.For many carers, worries focussed aroundphysical impairment, for example managingstairs and safety in the kitchen andbathroom:“I would have liked a bit more advice in thehospital… at the time I didn’t know what toask…. when he first came out I tried to givehim a bath, but I couldn’t get him out the bathagain, I just had absolutely no idea of what todo or anything…”Visual impairments, inability tocommunicate, poor memory, and lack ofconcentration also caused difficulty. Carersfelt that therapists did not always thinkthrough all the implications of multipleimpairments:“He’s got a PEG tube going into his stomachbecause of his swallow… At first, when I wasoff for the first week, that was when I first didit… but after that they thought,‘Oh, he’ll beable to manage it himself…’ but he reallycouldn’t… obviously he has to do it with onehand.”Survivors and their carers reported varyinglevels of support immediately followingdischarge. For the majority of YSS there wassome delay before services includingphysiotherapy, occupational therapy, speechand language therapy, and stroke nurses,were in place, which was an additionalconcern for both the YSS and the carer,who often had to chase up appointments.Several YSS found themselves withoutservices for significant periods afterdischarge, despite being told that contactwould be made soon after coming home.Survivors and their carers felt that progressmade in hospital was being lost throughdelays in receiving key services after cominghome. They reported being frustrated bythe gap and feeling that nobody cared:“You felt like you were being penalised forgoing home… because if you stayed in hospitalyou would have got [physiotherapy] every day.”There was also confusion about whyparticular services were being offered orwithdrawn. Communication betweenservice providers and YSS was found to bepoor. For example, a survivor who movedfrom one area to another receivedphysiotherapy in her new area, having beentold that she did not require it where shelived before. Survivors and carers alsoquestioned the level and duration ofsupport received, often feeling that it waswithdrawn very quickly:“That’s it finished now. They said,‘You don’tneed to come back.’ I would have thought thatshe needed a wee bit more physio… I was verysurprised that they cut off the physio sosuddenly…”17Improving services for younger stroke survivors and their families

18The role of stroke nurses in the periodaround discharge varied considerably.Whereas some YSS received significantsupport from the stroke nurse during thisperiod, others had had only limited contact.Both YSS and their carers who had hadcontact with a stroke nurse post-dischargepraised the service, drawing attention to thepeace of mind associated with being able tocontact someone directly if they hadquestions:“She talks to you that you understand… shedoesn’t use big words… if she does sheexplains what they are… It puts your mind atrest, at ease that you know you can phoneher…”Many survivors spoke of the fear of havinganother stroke during this period. Thecontrast between those able to freelyaccess information and reassurance fromtrained personnel, and those without thisoption, was apparent.GPs have traditionally been seen as thegatekeepers to health services, and it wasapparent that YSS and their carers hadexpected a greater degree of support fromthem. While some YSS attended the localhealth centre regularly to pick upprescriptions or have their blood pressuremonitored, in many cases contact onlyinvolved collecting sick lines. One carerdescribed her disappointment at thesupport received following discharge:“It seems that the care in hospital was actuallyquite good, decent care and attention andthinking ahead… but things have sort of fallenapart…”The shock of having a stroke was difficultfor respondents to deal with and for manysurvivors and carers the desire forinformation and to know what had causedit was uppermost in their minds at thisstage, particularly those who felt that theyhad taken care of their health.Improving services for younger stroke survivors and their families

Recommendations – Discharge from hospitalPlanning•YSS, particularly those on mixed age wards, should be offered supported discharge asearly as possible. However, it is vital that the agreement and understanding of relatives issought prior to YSS being discharged.• Therapy should be organised in the community immediately on discharge. Where this isnot possible YSS and their families should be contacted and told how long they are goingto have to wait.Information• In addition to discussions with relevant Stroke Consultants and specialist staff,YSS andtheir families should be provided with information leaflets in plain English, or otherlanguages where appropriate.• All YSS and their families should be provided with information, both face to face andleaflets, relating to 1) welfare benefits, 2) lifestyle changes, including changes in diet andsmoking cessation, and 3) voluntary organisations working in their area.Stroke nurses•Attention should be paid to standardising the role of stroke nurses.This role shouldencompass liaison/advocacy and draw on many aspects of current practice – including theprovision of accessible specialist information and linking different agencies, includinghealth, social services, employment, education, housing, the benefit agency, and voluntaryorganisations.19• All YSS discharged into the community should be visited by a stroke nurse within two daysof discharge. This early visit should identify and address any difficulties and provide theYSS and their family with a timetable of what is likely to happen in terms of service inputin the following weeks. The stroke nurse should continue to work with both the YSS andother family members as required.• Stroke nurses working in the community should be aware that young stroke survivors andtheir carers are concerned about recurrence.Carers•Health professionals working with families should ensure that relatives or carers areaware that they may be regarded as a carer, the type of support that may be available, andthat they have a right to a carer’s assessment. Particular attention should be paid tofamily members with multiple responsibilities, e.g. young children and employment, inorder to support them immediately following discharge.• Carers of YSS who are being discharged should be trained in lifting and handling if neededand any other tasks that they will carry out. They should be provided with a contacttelephone number should they have any queries.Improving services for younger stroke survivors and their families

Coping in the community20A desire to know where the stroke ‘hadcome from’ continued to preoccupy manyYSS, particularly those with no record of illhealth:“I’d not been to the doctors in 10 years… andthen this happened.”Carers spoke of the ongoing worry of notknowing what caused the stroke and whatwas likely to happen in the future:“We don’t know… [the doctor] said hecouldn’t guarantee she wouldn’t take anotherone, and they say it could be worse nexttime… you just don’t know what to think,thinking it could happen any time again.”Some YSS and their carers who hadreported difficulty accessing information feltthat health professionals either knewnothing about younger people and strokeor did not care.Lack of continuity of services continued toaffect YSS and in some cases had a markedimpact on their ability to cope. In somecases administrative errors were blamed fordelayed or missed appointments, otherswere held back because of the pressure onservices. In one case, there was a six-weekwaiting list for speech therapy; in another,the day care centre with key therapyservices specifically for those under 65 hada waiting time of 16 weeks.“Stay in house all day just thinking abouteverything. Pain still in legs, arms and hips. Stillno word from hospital about appointments…”Survivors and carers reported a lack oflocal services for younger people, and drewattention to the need for contact withpeople in a similar age group. For themajority of YSS key therapy services wereprovided through local day hospitals. Onceagain, this placed YSS in contact withsignificantly older stroke survivors. Onesurvivor suggested that he had differentexpectations of what he wanted to achievethan other attendees:“They take them in at 10 o’clock in themorning and they’re basically forgotten aboutother than the time they’re being treated.They’re elderly, they’re tired, and they’ve sufferedstrokes. And it makes you feel,‘Am I like them?’It puts you on a bit of a low.”Some YSS reported a lack of communicationwith therapists who failed to explain whythey were doing particular things or todraw attention to progress:“Today I had rehab. I think it went OK but theynever tell you how you have done.”However, other survivors reported a morepositive experience and a feeling of beinginvolved in their care:“I had a good chat with my OT. She said I wasdoing well and to keep positive. It is nice to beable to talk to a professional who understandswhat I am going through.”Transport to physiotherapy or OT sessionscould pose a problem when carers wereworking, and could not take the survivor, orbecause other available transport was notacceptable. One carer reported that, for avariety of reasons, the hospital transporthad failed to turn up for four weeks in arow. Another explained that his wife hadstopped attending because the time spentImproving services for younger stroke survivors and their families

travelling on hospital transport faroutweighed the benefits derived from abrief physiotherapy session:“It’s her choice, but simply she feels that sort often minutes out of her day, you know… to bestuck in a place for a full day for ten minutes[physiotherapy]…”The role of the stroke nurse remainedimportant to families who received thisservice. Carers spoke of the benefits ofknowing that they could telephonesomeone and speak to them directly:“We phoned her one time… just not long after[husband] came out, I felt his speech had gotworse again… She was very helpful… sheknew that we were worried about him…”.Although survivors and their carers hadexpressed satisfaction with the provision ofaids and adaptations on discharge, thesewere often the minimum required to enableYSS to leave hospital. In many cases therewas a significant delay before more costlyitems such as showers and bath chairs wereprovided. The initial focus on enabling YSSto manage in their own homes often failedto include access to the outside world.Lack of ramps and external handrails meantthat many survivors became virtuallyhousebound. In other cases carersreported that equipment supplied wasunsuitable, and that alternatives were rarelyoffered.The level of informal support received byYSS and their primary caregiver, e.g. fromextended family, varied considerably.Where there was no additional support asmall number of YSS received a home helpservice. This was predominantly in caseswhere the survivor was living alone or wasseverely affected by their stroke. However,one carer reported that the home helpservice was too rigid and thus inappropriatefor the YSS.Both survivors and carers spoke aboutlifestyle changes they had made, or neededto make following the stroke. However,input from health professionals variedconsiderably between areas, and there wascriticism of the lack of support receivedwhen trying to lose weight or give upsmoking.Emotional change was a particular problemin the early months after discharge. Overhalf the YSS spoke of feeling less able tocope following the stroke and becomingincreasingly frustrated:“I just feel emotionally very unstable and I’vegot a shorter fuse than I used to have. I usedto be able to cope with a lot of things and nowI just want to lash out.”However, the management of depressiveepisodes and nature of support offeredvaried considerably. By three to six monthspost-discharge, two-thirds of the YSS whowere experiencing depressive symptomshad not received any medical or serviceintervention and spoke of ‘muddling through’.Two survivors were in regular contact withpsychiatric services; one had admittedhimself voluntarily to a psychiatric unit for aweek, and the other received regular visitsfrom a psychiatric nurse with whom he hadbeen in contact prior to his stroke.21Improving services for younger stroke survivors and their families

22Carers spoke of difficulty coping with theextra demands on their time. One whowas already working full-time and had afamily to look after explained that thephysiotherapist had suggested that she helpwith exercises at home when this servicewas withdrawn. Although many carersreported that they were struggling, few hadbeen asked if they were coping. Those whosought help were rarely offered any form ofcounselling:“I knew I wasn’t coping a long time ago, Ithought I would get by, but I didn’t… I’m onanti-depressants now… I was totally crackingup before; I was crying all the time…”Having free time was not easy for carers.One explained that she had becomehousebound following the stroke:“Before the stroke I went out sometimes, now Ihave a responsibility… I [used to] go shopping,out with my husband, out with my baby… allthat’s very difficult for me after stroke.”It was apparent at this stage that the strokehad had a significant impact on relationshipsbetween survivors and those close to them.A number of participants spoke openlyabout their unease at partners and childrenassuming a caring role and the impact oftheir mood changes on their relationships.Carers spoke of difficulty in coping with thesurvivor’s emotional problems.Twenty-two households included childrenor young people aged less than twenty.Explaining that a parent has had a strokeand dealing with questions fromchildren/young people of different ages canbe difficult. However, it was apparent thatparents in this study had differentperceptions of the level of information thatchildren and young people were able tocope with. One carer talked about thechange in their household:“Sometimes I think they feel it hard… he’s[father] kind of moody and snappy… it’s kindof hard for me being in between them, youknow.”Carers spoke of the difficulties ofsupporting survivors when they were havingdifficulty coping themselves:“I keep telling him that it won’t be long beforewe’re back at the football but I know he’s notentirely convinced. Neither am I.”An acute event such as stroke affects theday to day activities of the whole family.Three-quarters of the carers who had beenworking at the time of the stroke reportedthat they had taken time off work, four hadnot returned three to six months postdischarge from hospital and one hadreduced her hours.“I took time off and I’m still off just now… I’mputting in sick-lines… because I couldn’t handlework when this happened… I was running upto the hospital twice a day… It was just a bittoo much to try and work and all, with the kids,and… it was just a bit too much…”One-third of the carers who took time offwere able to take paid leave; the rest tookannual holidays or sick leave. Returning towork was not an easy option for carers,who often expressed feelings of guilt or justfeeling unable to leave the YSS alone:Improving services for younger stroke survivors and their families

“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

Moving onThe rate of physical progress varied.Whilesome YSS had fairly transient physicaldifficulties others were evidently frustratedby the slow speed of their recovery.“I just think it’s got worse…I still can’t use aknife and fork together, I can’t use two knittingneedles together…I can’t use the two hands todo something…”Twelve to fifteen months post-dischargefrom hospital many YSS spoke of having‘good days and bad days’, some reported‘getting used to’ impairments, and being ‘morecomfortable’ in themselves. However, othersfound acceptance much more difficult:“They [the hospital] offered me a walking stickbut I said,‘Get that thing away from me’, I’m nowanting a stick.”As the initial shock of the stroke lessenedsome survivors began to cope better withthe slow rate of progress and changedlifestyle. In a number of cases YSS whoappeared to have had more damage initiallyprogressed quickly. A small number of YSSexperienced secondary seizures. Difficultieswith speech presented a particular problem.One carer spoke of her disappointment atthe limited improvement in her husband’scommunication; they had both hoped thathe would be able to speak by a year postdischargefrom hospital.Tiredness was prevalent; survivorscommented that they ‘couldn’t do what theyused to do’. Even for those who hadregained much of their pre-stroke mobility,fatigue remained a problem:“It’s got to the stage when I can go to my bedat nine o’clock and be up at 10 in the morningand then I’m still shattered half an hour after Iget up.”Around half the YSS reported difficultieswith memory and concentration 12-15months post-discharge from hospital. Onlyone respondent reported using strategies toimprove his memory following advice fromhis OT. Difficulties and frustrationssurrounding access to therapy continued toaffect survivors, some of whom believedthat their progress had been hampered bylack of support. Access to speech andlanguage therapy was a particular problem, asmall number of YSS with speech problemshaving had no support since leaving hospitalmore than a year previously:“I’ve never seen anybody… I’m still havingdifficulty expressing myself and [in] my writingas well… I get my words all mixed up and Idon’t finish the word.”Continuing supportYSS continued to receive input from a rangeof health professionals includingphysiotherapists, OTs, speech and languagetherapists, stroke nurses, and GPs asrequired. In a small number of casessurvivors received support from a range ofprofessionals working together.This proved to be particularly effective asthe focus of input shifted with time. Forexample, one survivor who reported thathe had received support fromphysiotherapists and OTs in the early25Improving services for younger stroke survivors and their families

26stages, was later referred for psychologicalsupport.Thus there had been a shift fromdealing principally with physical damage to amore holistic approach encompassing hiscognitive abilities and mental wellbeing.Another YSS reported that he had receivedsupport from a physical disability teamworking in the community; this enabled himto receive support appropriate to his ageand abilities rather than attending servicesprimarily designed for older adults.A small number of survivors received homehelps and respite care; however, high levelsof support can have drawbacks:“You know, my house is taken over by otherpeople… and I like being able to do things forhim as well… And then there’s the girls… Ihave this time limit, and that really frustratesme [but] before the respite I couldn’t even takethe girls for their tea.”More than half the YSS had been dischargedfrom the stroke support teams by a yearpost-discharge. However, the importance ofother support remained. For manysurvivors, the main points of contact andservice provision was taken over by theirGPs. In some cases YSS attended their localhealth centre for regular monitoring ofblood pressure, cholesterol etc. as well asaccess to more specialised strokeprofessionals. However, there was a lack ofconsistency across cases: for example, whilea small number of survivors were referredto smoking cessation clinics or dieticians,others received little or no help withaltering their lifestyle.Stroke nurses working in the communitycontinued to play an important part morethan a year post-discharge from hospital.YSS and their carers appreciated havingcontact with a named person. One carerreported that she had met with their strokenurse on her own, highlighting the benefitsto be derived from stroke nurses havingtime to speak to both YSS and carer andoffer a level of support.A small number of YSS who had moresevere residual impairments reported havingbeen re-housed or having major adaptationscarried out:“It’s [the shower] fantastic, the independencethat it gives me… I don’t need to be watchedbecause there’s a seat in the shower and youcan just put it down have your shower and thencome out.”However, not all cases had been dealt withso successfully. In a small number of casessurvivors reported that they were confinedto their homes because of inadequateadaptations, or requests to be re-housed inground floor accommodation not beingmet.Depression and emotional changesDepression continued to be a problems 12-15 months post-discharge from hospital. Anumber of survivors who had experienceddepression earlier in their recoveryreported feeling better despite havingreceived either limited or no psychologicalsupport. However, a number of YSS whohad reported depression at time 1 felt thatthey had failed to improve over the months.Improving services for younger stroke survivors and their families

Despite being prescribed anti-depressantssome considered their depression to besignificantly worse by the time of thesecond interview.“There’s just too much going on in my head…Ijust feel as if nothing is happening and I’m notgetting any better.”The role of the GP was found to beimportant for YSS with depression.However, one survivor who spoke of hisinability to think positively about any aspectof his life reported that he found it difficultto talk about these issues with his GP orhis family.Carers spoke of the difficulties of managingthe physical and emotional changes causedby the stroke as well as trying to ameliorateits impact on their day to day family life.“I was just weak with just having to deal witheverything… you know with looking after[husband], the children… having the houseadapted. I just went right downhill… I was illfor about 10, 12 weeks…”Despite the fact that almost three-quartersof YSS said that they would have foundtalking to other young stroke survivorshelpful, only one had attended a supportgroup.EmploymentYSS spoke of the significance of work intheir lives, both as a source of income and afacet of their identity. Returning to workwas perceived to symbolise ‘somethingnormal’ in day to day living.Of those who had been working at the timeof their stroke, one third had returned towork by three to six months post-dischargefrom hospital, two of whom had reducedtheir hours to part time in the firstinstance. Only another two YSS reportedhaving returned to work between the firstand second interviews. Unfortunately, wedo not know how many of those who didnot take part at time 2 had returned towork. Seven survivors reported that theydid not expect to return to the sameoccupation, four did not expect to workagain. Young stroke survivors who did notexpect to return to the same employmentincluded those who had worked inphysically demanding jobs, drivers, and threewho had been self-employed at the time oftheir strokes – all had lost their businesses.While a swift return to work must beviewed as a positive step, it was not withoutdifficulties, and some respondents reportedthat, in hindsight, they had perhaps returnedtoo soon. Young stroke survivors withcognitive impairments, e.g. memory loss,problems with speech, or depression, foundthe workplace to be an alien environmentcompared to that which they had left a fewmonths before:“Well, I’m really finding it quite a strain now,things I could cope with at this time last year, Ican’t cope with now, I mean I’ve really got toask for quite a bit of help.”Support from employers varied markedlybetween respondents. While some YSS felt‘let down’ by their employers, othersreported having received a great deal ofsupport. Two participants reported thattheir jobs had been reorganised to27Improving services for younger stroke survivors and their families

28accommodate their needs post-stroke.However, the changes were not alwayssuitable and it was apparent that employershad little understanding of the impact ofstroke on their employees.Feeling hurt at an employer’s perceived lackof support quickly takes second place as thefinancial implications of not working beginto bite. Survivors employed on temporarycontracts found themselves out of workfollowing the stroke – often with little orno financial recompense. YSS who did nothave work-based sick pay reported beingunder considerable financial pressure toreturn as soon as possible.A number of survivors who were unable toreturn to their previous employment hadstarted taking an interest in re-training inorder to seek alternative work at the timeof the first interview. However, they foundit difficult to access information aboutsuitable options and seemed to have lessconfidence about their prospects at twelveto fifteen months post discharge fromhospital than they had earlier. Onerespondent found his local collegeinaccessible, others felt that they could notcompete in the labour market:“I would like to go back to work, but I don’tknow what I can do.”Another YSS reported that he had made hisown enquiries into re-training and enrolledon a three-month computer and dataprocessing course. Whilst he had found thetransition into another area of work largelypositive, his applications for morepermanent employment had beenunsuccessful:“As soon as they [employers] hear that you’vehad a stroke they don’t want to know…”One survivor reported that he had beenencouraged to return to work by hisoccupational therapist and that his strokenurse had helped him to enrol in acomputing course run specifically for strokesurvivors. Ultimately the course organiserliaised with his previous employernegotiating a staged return to work whichproved to be very successful.Financial impactHalf the YSS reported that their stroke hadhad a negative effect on their financialcircumstances, in some cases, survivorsreported having experienced a substantialdrop in income and claimed that they hadhad to make considerable lifestyle changes.Both survivors and their carers expressedconcern about future finances:“You can’t buy things in the same way asbefore because you say to yourself you don’tknow what’s around the corner.”Others had experienced problems with thebenefit system:“I put my claim in and they said it takes five orsix weeks to arrive, but it didn’t arrive, so Iphoned up about it and they said,‘Oh no,you’ve filled in the form wrong…’ it was like youwere trying to con them.”A small number of participants reportedhaving had private health insurance whichpaid their mortgage.Improving services for younger stroke survivors and their families

Impact on relationshipsOne of the most striking aspects of theinterviews carried out twelve to fifteenmonths post-discharge from hospital wasthe impact on relationships between thesurvivors and their carers. Loss of workwith associated loss of income, depression,lack of social life, and general changes inlifestyle clearly took their toll. Whilerelatives or carers who were not coresidentcould withdraw, or distancethemselves to some extent, those who livedtogether, particularly partners or spouses,were often together 24 hours a day:“It’s a dramatic change. I don’t know if it’sbeen… to do with the stroke, or because I’mout of work, but we’re now both at home now,you know, and that’s a real change…”Both YSS and carers reported that theyfound communication difficult. Somesurvivors acknowledged that they wereoften short tempered, and spoke of feelingguilty:“I quite often lose my head with him[husband]… I mean he’s been quite patientwith me but I don’t feel we talk enough… Idon’t tell him what I’m really feeling.”For carers on the receiving end it could bedifficult to know what to do next:“I suggest things and she just says,‘Don’tpatronise me, I don’t need your sympathy.’”Some carers felt that their partners hadchanged and that there was no way ofknowing if this was permanent, ortemporary:“I don’t know if the stroke has changed hispersonality, but it has certainly brought thingsto the fore…”A small number of carers reported thatcognitive impairments resulted in lack ofinhibition in survivors which they founddifficult to cope with:“He just talks about sex all the time… he justdoesn’t seem to bother who’s around whereasbefore he was, you know, never like that.”In other cases YSS talked of medicationaffecting their sexual relationships and theirsorrow at the resulting loss of closeness.The impact on family relationships was notlimited to couples. Carers spoke of tryingto maintain a balance between coping withthe needs of their partners and maintainingsome semblance of home life for theirchildren. A small number expressedconcern over the impact of the stroke onchildren’s relationships with the YSS. Noneof the participants reported having receivedany guidance about the likely impact of thestroke on their relationships. One carerhad contacted marriage guidance and at thetime of the interview was waiting for anappointment. A small number had receivedsupport from stroke nurses, but thereappeared to be no system in place forsupporting these families.Friendships too had been affected.Thereappeared to be a gender difference withfemales reporting that friends had ‘stuck bythem’, while the majority of male survivorsreported that friendships had deteriorated:29Improving services for younger stroke survivors and their families

30“They never come near… I think they’refrightened.”Going out and meeting people is oftenimportant to couples. However, both youngstroke survivors and their carers reportedthat it was not easy to re-establish formerroutines:“He just gets very tired… [Going out] is just alot of effort for him, and sometimes it’s sofrustrating because I mean we’re both stillyoung… It’s just all so entirely different...”Although the majority of couples reportedthat the stroke had had a negative impacton their relationship, this was not alwaysthe case. In some instances participants feltthat sharing the experience of the strokeand subsequent rehabilitation had broughtthem closer together:“I think possibly this has brought us even closer,you know helping each other out… It’s been aterrible experience for both of us but… I don’tthink it’s damaged our relationship.”Just over a third of those interviewedtwelve to fifteen months post-dischargefrom hospital reported that they felt morepositive and ready to move on. A numberof survivors and carers claimed that thestroke had made them reassess their lives:“I used to go to my work, hammer into that,and then come home and start on doing thingsin the house… I had to take a step back…The stroke gave me a fright and I just takethings a bit more slowly now.”Positive events were important in helpingYSS move on from the stroke. During theperiod between the first and secondinterview, two survivors had becomegrandparents for the first time, and onewhose wife gave birth shortly after hisstroke was enjoying his young daughter.Others spoke of the importance of beingable to drive again and the independencethis gave them. One survivor who receiveda grant to enable him to get an adapted carexplained:“It’s been absolutely fantastic… you just put itinto gear… and off you go”Recommendations – Moving onServices•YSS may require long-term follow up which should be provided by a multi-disciplinaryteam working in the community.•YSS should continue to have access to therapists as required, preferably in a setting withother younger people.• Particular attention should be paid to difficulties with speech and language, and/orcognitive impairments. YSS should be assessed and given support to enable them to copewith some of the difficulties, e.g. strategies to improve memory.•YSS and their carers should be aware that mood swings and depression are prevalentpost-stroke. Referral should be made for counselling or psychological support asrequired.Improving services for younger stroke survivors and their families

•Younger people who have experienced a stroke should be covered by a ‘high risk groupsapproach’ to stroke prevention and health improvement (Scottish Executive, 2002), and besupported in making lifestyle changes, e.g. smoking cessation or dietary changes.•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.• The input of relatives and other supporters must be acknowledged. Health professionalsworking with families in the community should ensure that a carer’s assessment has beencarried out.Employment• Issues relating to employment should be addressed. Therapists should ensure that theyare aware of the previous employment status of YSS in order to assess possible optionsfor the future. Vocational rehabilitation consultants, disability employment advisors, andvoluntary organisations should be involved where appropriate.• Relatives or carers who were in employment at the time of the stroke but have notreturned to work should be encouraged and supported to return. Where a carer isunsure about returning to work they should be given an opportunity to discuss theiroptions with an employment adviser as well as their stroke nurse.• Where a return to employment is not anticipated for either the survivor or carer, a fullbenefit check should be carried out.Stroke nurses• Stroke nurses should provide support to carers as well as survivors, seeing them on theirown in order to identify difficulties that they may prefer not to discuss in the presence ofthe YSS.• Where families include children or young people stroke nurses should ascertain whetherthere are any difficulties. Families should be referred for support; e.g. family or individualcounselling if they are experiencing difficulty with the sudden changes associated with thestroke.Post-stroke recovery is a long-term proposition; while some level of residual physicalimpairment may have to be accepted, social adaptation is limitless. At the time of thesecond interviews, twelve to fifteen months post-discharge from hospital, a proportion ofthe YSS who took part in this study had put their stroke behind them and moved on. Forothers progress was slower; survivors and their families were still coming to terms with achanged lifestyle and in need of support, possibly for some time to come.31Improving services for younger stroke survivors and their families

References1. Kaste, M., Fogelholm, R., Rissanen,A. (1998) Economic Burden of Stroke and theEvaluation of New Therapies. Public Health. 112 (2) 103-112.2. Hochstenbach, J., Donders, R., Mulder,T.,Vanlimbeek, J., Schoonderwaldt, H. (1997) Long-Term Outcome After Stroke:A Disability-Orientated Approach. International Journal ofRehabilitation Research, 19 (3) 189-200.3. Low, J., Payne, S, Roderick, P. (1999) ‘The impact of stroke on informal carers: a literaturereview’, Social Science and Medicine, 49(6), pp. 711-725.4. Blane, D. B. (1996) Collecting Retrospective Data: Development of a Reliable Method anda Pilot Study of Its Use. Social Science and Medicine. 42 (5) 751-757.325. Scottish Executive (2002) Coronary Heart Disease and Stroke Strategy for Scotland.Edinburgh: Scottish Executive.AcknowledgementsParticular thanks are due to all of the young stroke survivors, relatives and carers, andhealth professionals who participated in the study. Thanks also to the members of theSteering Group who contributed their time and expertise: Jane Arroll, Dr Duncan Booker,David Clark, Dr Hazel McHaffie, Kathleen Molloy, Professor Margaret Reid, Professor SheilaRiddell, Dr Chris Roy, Eileen Whitham.This is a summary version of the full research study, which is available from:The Strathclyde Centre for Disability ResearchAdam Smith BuildingUniversity of GlasgowGlasgowG12 8RTTel: 0141 330 4545Website: www.gla.ac.uk/centres/disabilityresearchImproving services for younger stroke survivors and their families

Chest, Heart & Stroke Scotland65 North Castle Street, Edinburgh EH2 3LTTel: 0131 225 6963 Fax: 0131 220 6313Advice Line Tel: 0845 077 6000Website: www.chss.org.uk E-mail: admin@chss.org.ukInland Revenue Scottish Charity No: SCO18761