Improving 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