Introduction
In the UK, there is on average one stroke every 5 minutes resulting in 100 000 strokes annually and around 1.3 million stroke survivors. It is estimated that by 2025 that this number will increase to 2.1 million, at an estimated cost of £75 billion annually.1 Each stroke patient will need individualised care and monitoring, to achieve optimal quality of life and sustained independence. Following the acute phase of stroke and subsequent rehabilitation in hospital, patients often continue to be supported by specialist stroke community rehabilitation services.2 Many will subsequently need to access primary care services and their GP, for needs that may not be addressed during discharge planning. There are National Clinical Guidelines for stroke available to guide ongoing clinical care.3 Despite this guidance, stroke survivors and their carers have reported feeling abandoned because handover to primary care is poorly coordinated and the expectations can be unclear for long-term management.4 Reflecting on the dissatisfaction expressed by stroke patients we should consider critically what is expected of primary care in the long-term management of stroke survivors in the community.
Current practice
Post-stroke care tends to focus on early rehabilitation,2 targeting early assessment and implementation of care planning for the areas that include cognitive function, fatigue, vision, hearing, swallowing, mouth care, communication, movement, shoulder pain, spasticity, providing support and information, and self-care.2 A point in the care pathway to address some of these unmet needs would be at the often secondary-care-led post-discharge 6-month review that all stroke patients should receive. However, national audit data report that only just over a third of eligible stroke patients receive their guidance-recommended 6 month follow-up assessment.5 It is likely that a person’s needs and goals in all these areas would be ongoing or require reassessment at regular intervals upon specialist discharge. National Clinical Guidelines for stroke recommend that stroke patients should therefore be offered a structured annual holistic review of their individual needs to cover physical, neuropsychological, and social needs for as long as a need for ongoing review continues.3 The annual review conducted in primary care can generally be defined by Quality and Outcomes Framework indicators,6 which are currently focused on secondary prevention of recurrent stroke and not ongoing long-term holistic care. This is in agreement with National Clinical Guidelines for stroke, which recommend that stroke patients should have their risk factors addressed, secondary prevention reviewed and monitored annually, and blood pressure optimised.3 It also follows the guidance set by the National Stroke Service Model,7 which emphasises the crucial role of Primary Care Networks in the primary and secondary prevention of stroke. In particular are the detection and treatment of atrial fibrillation, hypertension, dyslipidaemia, and the effective use of the NHS Health Check.7 However, the needs of the person with the stroke are often more than just about secondary prevention. Care of individuals following their stroke must go beyond a patchily implemented single post-discharge review followed by a focus only on stroke prevention monitoring in the community.
Challenges in the care of patients during the chronic stroke phase
Good independent quality of life after stroke is about enabling people to live well with their post-stroke deficits that remain. This requires informed healthcare providers to respond to the real needs of an individual and their family members, which may change over time. An additional challenge is the health inequalities experienced by groups of patients across the stroke care pathway. Data from the South London Stroke Register noted a strikingly higher stroke prevalence in Black and Asian communities, concluding that advances in risk factor reduction observed in older white population groups were not being transferred to younger and black people.8 Primary and community care services are well placed to find these individuals through improved detection and risk factor reduction. Socioeconomic status is also associated with disability following a stroke.9 In particular, those from Black or Asian ethnicities, those with poor academic achievement, or who were unemployed pre-stroke and in households on low income also had significantly higher odds of ongoing stroke disability, worse long-term outcomes,9 and consequently need a greater share of focus that would deliver greater levelling up of stroke care. Collaborative efforts in primary care such as Deep End Networks could work together to optimise the care of these individuals through targeted strategies in areas of socioeconomic deprivation.10 Finally, the ongoing care post-stroke is not limited to just the stroke survivor but also their families. A Stroke Association survey found that 62% of stroke survivors had unpaid carers, most of whom are untrained and often unprepared for their ongoing role.11 These individuals are consequently as much in need of support and information themselves as they continue to ease the burden on social care services.11
Primary care and collaborative working in the community
Although the UK National Clinical Guidelines for stroke make recommendations about the long-term care of stroke patients and their families,3 it is unclear how best to operationalise these in primary care, with an emphasis on meeting the greatest unmet need. Other healthcare systems have sought to address this through formal guidance. In the US, for example, consensus recommendations advise that stroke care provision should be patient centred. Here, post-stroke care is seen as an iterative process of assessment, management, and feedback working along five primary helices towards the goals of patient-centred care, prevention of recurrent brain injury, maximisation of function, prevention of late complications, and optimisation of quality of life.12 In this guidance, ongoing monitoring for depression, and cognitive and physical decline, are given high priority for early intervention.12
In the UK, primary care could offer more effective post-stroke care, particularly within the annual review setting. It can, however, be difficult to effectively deliver good holistic post-stroke care when the needs of the individual may be quite diverse and are expected to be addressed in a time-constrained clinical setting. Indeed, the recent Improving Primary Care After Stroke (IPCAS) research programme, which comprised five separate components in its primary-care-based post-stroke intervention, found no benefit in addressing some of the long-term needs of people after stroke.13 However, collaborative efforts across primary and community networks have the potential to tackle some of these issues that are perhaps more specific to the individual stroke survivor’s needs, for example, in terms of less visible needs such as cognition. Social Prescriber Link Workers are now embedded into Primary Care Networks and can assist primary care clinicians to deliver more holistic care. People can quickly be put in contact with community organisations such as exercise classes, support groups, and can fully utilise local arrangements for social prescribing. Practices also have pharmacists, who would be able to assist in the monitoring of risk factors and medication adherence to allow other primary care clinicians to focus on the additional unmet needs. Further, health hub collaborations between the voluntary, community, faith, and social enterprise sectors are aimed at tackling health inequalities in a multi faceted shared-care enterprise.14 Often a community hub will offer access to mental health, financial, and benefit advice on top of usual GP care.
Conclusion
Primary care should be aiming to prepare for a growing population of stroke patients, and practices should be supported to meet the individual needs of this population. The expansion of the primary care team and subsequent community engagement is now better equipped to meet patients’ needs and requirements to enable them to access inclusive community care. Ultimately, guidance needs to be provided to primary care for the post-stroke care of patients in the community so that recommendations can be operationalised better and resourced according to the individual needs of patients and their families.
Notes
Funding
Eugene Tang (NIHR Clinical Lecturer) is funded by
the NIHR. Sandra Elphick was supported by an NIHR Nursing and Midwifery Publication Internship. The views expressed in this publication are those of the authors, and not necessarily those of the NIHR, NHS, or the UK Department of Health and Social Care.
Provenance
Freely submitted; externally peer reviewed.
Competing interests
The authors have declared no competing interests.
- © British Journal of General Practice 2024
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