Around 2 in 5 stroke survivors in the UK are discharged from hospital requiring help with activities of daily living[237]. Few countries appear to publish data on community provision of therapies. It seems that stroke rehabilitation for patients once they have been discharged from acute care is very variable between and within countries, including those with the longest histories of providing post-stroke rehabilitation. In around 2 in 5 EU countries, outpatient therapies are not generally available. In the recent past, there has been evidence of some countries reducing their outpatient stroke rehabilitation programmes.
The variation in access between and within countries is due to different organisation of stroke services, different strategic approaches, and different levels of resources.
In some countries, formal pathways between different phases of care (acute, inpatient rehabilitation, community rehabilitation) do not exist, are incomplete, are not fully implemented, and/or vary between localities (e.g. Austria[209]; Italy[9], Latvia[9], Portugal[9], Macedonia[9], Slovakia[9]).
According to UK guidelines, hospitals should work with patients to make a plan for rehabilitation after discharge and make referrals to other services as needed[322]. There should be formalised pathways between acute care, primary care and rehabilitation services so that stroke survivors’ continuing care is well organised, but in several countries links between rehabilitation and primary care, e.g. general practitioners, are weak[244]. Pathways are sometimes not fully implemented, so that despite efforts to make post-acute care more consistent, patients continue to experience different levels of access to rehabilitation (e.g. the timing of assessments after discharge from hospital, or how long they have specialist rehabilitation for)[298].
“There are a lot of things that I cannot do that I did before. I was fond of skiing – I cannot do that. I cannot ride a bicycle because I have no balance, and things like that. You miss it, but after some time you get used to it. It’s a new life; you have to adjust to what you can do.”
(Male stroke survivor, Norway)
In many countries, there is not enough multi-disciplinary therapy provision for stroke survivors in the community, and access varies between regions. In most countries, increasing numbers of survivors are discharged from hospital within a matter of days but they may not be able to access any or all of the therapies they need in the community, and may experience long delays.
This can be a nationwide issue e.g. general lack of any provision of outpatient or domiciliary care in Eastern Europe even sometimes when community based rehabilitation is the subject of legislation[36, 308, 325]. There also tends to be regional and rural vs urban variation in access to community based rehabilitation, e.g. patients in some regions of Ireland[312], Portugal[326], Sweden[53] and Spain[9] do not have access to outpatient and/or domiciliary rehabilitation. Europe-wide, this is particularly true of occupational therapy (e.g. Ireland[312]; Italy[244]; Luxembourg[9]; Spain[9]) and similarly vocational rehabilitation (e.g. UK[161]) and psychological support (e.g. Ireland[312], UK[161]). Lack of capacity for rehabilitation in the community can mean stroke survivors experience longer stays in hospital or rehabilitation centres (e.g. Croatia[9]; Cyprus; Czech Republic[9]; Estonia[9]; and Ireland[129]).
“After I left the rehabilitation hospital I was sent home with a multidisciplinary team coming home to ask whether I needed help from them. I got help from an occupational therapist for my aids, as a walker, handles in the shower and a wheelchair and I went for many years to a physiotherapist to learn how to walk as steady as possible.”
(Female stroke survivor, Norway)
“I stayed there [in a rehabilitation unit in the UK] for half a year with training. That was very good. It was physical training and mental training, and all the time they measured where I was in the training programme and adjusted it all the way. … When I got home [to Norway] I didn’t get any therapy. It took me about half a year before I could continue with the training, and that was bad because you should have continuous training, that is important. Because when you have a break, then you have to start at a lower level again and build yourself up, so you lose a lot of time by doing that.”
(Male stroke survivor, Norway)