Following discharge from rehabilitation, many people with stroke experience a discontinuity in their care (Hartford et al, 2019) whilst still adjusting to life after stroke. In addition to ongoing needs, the discharge process is likely to give rise to new needs because of changes in physical, psychological, social and environmental circumstances (Pringle et al, 2013; Hodson et al, 2016) for which people with stroke and their families often feel inadequately prepared, leaving them feeling unsupported (Tholin & Forsberg, 2014) or even abandoned (Pindus et al, 2018). The needs of people with stroke and their families are likely to change over time, as adjusting to life after stroke is an evolving, long-term challenge for many (Pallesen, 2014; Hall et al, 2022). [2023]
A systematic review of unmet needs after stroke identified that, on average, each person with stroke experiences between two and five unmet needs (Chen et al, 2019). Common unmet needs related to body function include fatigue, cognitive problems, neuropsychological and emotional needs and pain; those related to activity and participation include secondary prevention, mobility, work, leisure and hobbies, while those related to the environment include information, transport, therapy and home support or personal care. [2023]
In order to address these needs, many people with stroke seek to continue rehabilitation in the longer term, either continuously or on an intermittent basis. As well as facilitating recovery, rehabilitation (including exercise) delivered later after stroke may prevent regression of physical or cognitive gains achieved in the earlier stages of recovery, and prevent deconditioning. Furthermore, people affected by stroke often seek sources of support outside of the health and social care system (Forster et al, 2021). These may include advice lines and patient advocacy organisations, communication support groups, exercise groups and other informal gatherings to provide social, emotional and psychological support. [2023]
The provision of appropriate, person-centred follow-up rehabilitation and long-term support after stroke is advocated by several key organisations, including the British Society of Rehabilitation Medicine in their Specialist Standards for Community Rehabilitation (British Society of Rehabilitation Medicine, 2021), the Community Rehabilitation Alliance in their Manifesto (Community Rehabilitation Alliance, 2021), NHS England in their National Stroke Service Model for England (NHS England, 2021), the Scottish Government in their Programme for Government (Scottish Government, 2022), and the National Stroke Strategy (Ireland) (Health Service Executive, 2022). Inter-agency partnership working is highlighted in particular to ensure people are able to access the right service at the right time, preventing gaps in service transitions. [2023]
Healthcare professionals should facilitate timely access to services that are necessary to enable people with stroke and their families to address their evolving needs over time. Follow-up health and social care may be warranted, but a wide range of other support services may also be sought from the third sector (e.g. the Stroke Association, Chest Heart & Stroke Scotland, Different Strokes, the Irish Heart Foundation). Furthermore, healthcare professionals play a pivotal role in supporting people with stroke and their families in designing self-management plans and reviewing these (see also Section 4.4 Self-management). [2023]
As this guideline does not include a section dedicated to support services outside of health or social care, recommendations in this section include signposting to such services, to ensure that people affected by stroke are referred to the appropriate services to address their needs. [2023]