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Support for people with long-term neurological conditions in rural English communities

02 May 2019
Volume 24 · Issue 5

Abstract

Almost one-fifth of the population in England lives in rural areas. Compared to urban populations, the rural population is older and faces greater difficulties in accessing medical services. At the same time, healthcare teams in rural areas face particular challenges in recruiting and retaining staff, travelling between patients and keeping specialised knowledge up-to-date. Drawing upon a recent health needs assessment for people living with long-term neurological conditions in a rural English county, as well as a broader review of the literature, this paper considers the challenges of rurality and discusses potential solutions. Technological and community-based responses have often been suggested as responses to challenges of rurality. However, there is likely to be a need for up-front investment of resources and careful consideration of individual and community needs before these solutions can be applied to rural neurological care.

According to 2017 data produced by the Local Government Authority (LGA) and Public Health England (PHE), 19% of the population of England lives in rural areas (LGA and PHE, 2017). Compared to urban populations, rural populations typically comprise older people and have poorer access to healthcare services (Butow et al, 2012; Brundisini et al, 2013; Todd et al, 2014; LGA and PHE, 2017). At present, there is limited research exploring healthcare practitioners’ experiences of providing services in rural communities within the UK. Recent NHS reforms have emphasised the importance of ‘place’ and localism, but have tended not to directly address the potential challenges of implementing localism within sparsely populated rural areas and areas that are remote from public services. For example, the NHS long-term plan (NHS England, 2019) encourages a shift away from acute hospitals and towards community care. However, the sole reference to rural healthcare within the plan relates to small acute hospitals, with no discussion of challenges within rural community services.

Rurality can be a challenging concept to define: definitions vary among countries, even within the UK. In England, a settlement with fewer than 10 000 residents is considered rural, whereas the threshold for Scotland is 3000 (Office for National Statistics (ONS), 2011; Scottish Government, 2012). International studies on rural health often focus on the needs of indigenous minority populations and communities that are significantly more remote than those typically found within the UK. While official definitions of rurality focus on population density, these hide the significant amount of variation among rural communities. For example, a commuter village in the south-east of England and a former mining village in the north may both be classified as rural based on population density, but that does not necessarily mean they have similar needs, given the different economic and demographic characteristics (Rousseau, 1995).

Population sparsity affects the provision of health services and access to these services. There are debates—but no clear consensus—about the optimum population to be served by healthcare commissioning bodies, as well as the trade-offs between factors such as cost-efficiency, expertise and local responsiveness (Greaves et al, 2012). Ultimately, however, health services, especially those addressing less common health needs or requiring specialised skills or equipment, are likely to have to cover a certain population size to be viable. Health services in sparsely populated rural areas will, therefore, usually cover a larger geographic area in order to provide services for the same number of users. As a consequence, people living in rural areas are likely to face increased travel times, with fewer local specialised services (Butow et al, 2012; Brundisini et al, 2013; Ford et al, 2016). Rural residents are also less likely to live within walking distance of community health services, such as general practice surgeries or community pharmacies (Todd et al, 2014; 2015). The problem of extended travel distances for healthcare may be further exacerbated by low-capacity roads, poor public transport and geographic barriers such as rivers and coastlines (Jordan et al, 2004). Interestingly, Jordan et al (2004) reported that poor access to services is not solely confined to rural areas: coastal towns may also face long travel distances to secondary health services.

The social and cultural aspects of rural communities may also affect healthcare use. It has sometimes been suggested that stoicism and strong community ties may mean that rural populations are less likely to seek healthcare (Wenger, 2001; Farmer et al, 2006; Butow et al, 2012; Cowling et al, 2013), instead choosing self-care or to be cared for by family members. However, this could also result in reduced health-seeking behaviour in situations where care is actually necessary. Further, individual access to community support within a rural area will vary. For example, incomers to a rural community may have weaker community ties and be less prepared to cope with poor access to health services compared to longer-term residents (Stockdale and MacLeod, 2013).

Thus, gaining a clear overview of positive and negative associations between rurality and health is potentially limited by the disparity of definitions and the interactions between rurality and other factors relevant to health, such as socioeconomic status, housing quality and population demographics (Department for Environment, Food and Rural Affairs (DEFRA), 2009). For example, a reported association between colorectal cancer survivorship and rural residency disappears once socioeconomic factors are taken into account (Dejardin et al, 2014). However, financially excluded individuals living in affluent rural communities may face a double disadvantage of social deprivation and poor access to services, which is masked by the overall affluence of the area (DEFRA, 2009). Standard measures of local area deprivation may fail to recognise rural deprivation, both because it may occur in very small pockets and because it may have different qualitative features to the deprivation found in urban areas (Fecht et al, 2018). Health professionals in rural areas are therefore likely to be working with populations who face reduced access to care and who may be demographically distinct from urban populations. This may be particularly challenging when working with people living with neurological conditions, who may need ongoing access to specialised advice and support for managing their condition.

Challenges for rural health professionals supporting people with neurological conditions

Compounding the challenges of rural health care access, rural areas also experience greater difficulty in attracting and retaining health professionals (Buykx et al, 2010; Kroezen et al, 2015). An older demographic, poor transport links, outward migration of skilled young adults and, in some cases, reduced attractiveness of rural areas to professionals may all contribute to recruitment difficulties (Green et al, 2018). Interventions have attempted to address a range of issues, including access to childcare and housing, access to mentoring and professional development, adequate remuneration and stress reduction programmes, suggesting these factors are perceived to be areas of dissatisfaction for health professionals working in rural areas (Buykx et al, 2010; Kroezen et al, 2015; Green et al, 2018). However, evidence of the effectiveness of such interventions is mixed, suggesting that no single factor is decisive.

Neurological conditions involve damage to the brain, spinal column or peripheral nerves and include a wide range of health needs. It is estimated that between 4 and 8 million people in England are affected by neurological conditions, with the divergent estimates depending on whether dementia, stroke and headaches are included in the definition, and they account for a high proportion of GP visits and hospital appointments (Thomas et al, 2010; National Audit Office, 2015).

The authors of this paper conducted a health needs assessment focusing on people living with neurological conditions in a large rural English county (Ray et al, 2018). This needs assessment was commissioned by the local authority, and ethics approval was granted by the university research ethics committee. The project aimed to synthesise evidence on neurological needs and service provision within the county, incorporating a literature review, a review of local health data and surveys. A total of 100 hard-copy questionnaires were distributed to local agencies providing support and services for people with neurological conditions and to a small number of individuals who requested a paper copy. Groups were also encouraged to share the survey via online networks. Responses were received from 84 respondents: 41 people living with neurological conditions, 19 carers, 11 voluntary sector organisations and 13 health professionals. These responses were thematically analysed. One section of the questionnaire asked participants to identify challenges faced by people living with neurological conditions in the county. Strong levels of agreement were found between all groups on the responses to this section, and two key themes were identified, namely, poor access to specialised services (both in terms of waiting times and travel distances) and lack of knowledge about neurological needs within local health and social care services.

Like patients and carers, health professionals were frustrated by the long waiting lists for services, delays in follow-up communication and poor access to specialised advice and support. Specialised services were primarily provided out-of-area, and participants reported that community health services were not always knowledgeable about neurological conditions. As a result, professionals reported instances of patients either not having access to services or being referred to services that were not appropriate for their needs. For example, both professionals and patients reported referrals to community mental health services sometimes being refused or being unsuitable in nature, because services did not always have experience in adapting their provision to meet the needs of people with communication or cognitive difficulties. Community professionals who provided outreach services within people's homes reported long travel distances and difficulty accessing support and training to help them work with patients with complex needs. Similarly, carers reported poor access to support services and difficulty in accessing healthcare for their relative during a crisis. Voluntary sector service providers felt that the county had fewer specialised services than other areas of the country. The rurality of the area underpinned many of these problems of poor access to services that met patient needs. The health needs assessment, therefore, highlighted a need to address specific challenges of rurality in planning and delivering neurological care.

Responses to rurality

Technology has been widely promoted as a solution to some issues of rural and remote care. For example, technology has been suggested to have value with regard to remote monitoring of biological data, such as blood pressure; providing video appointments for patients; and allowing local primary care providers to access specialised knowledge via teleconferencing (Banbury et al, 2014; Marcin et al, 2015). e-Learning could potentially help address the issue of professionals facing difficulties in accessing training. However, many of the most rural UK communities still lack access to high-speed broadband (Williams et al, 2016), potentially limiting the value of technology as a means of providing rural healthcare. In addition, some services for people with neurological conditions, such as rehabilitation and occupational therapy, may not be suitable for remote provision. Assistive technologies are not always appropriately tailored for the needs of older service users with disabilities and, as a result, may not be used effectively (Greenhalgh et al, 2015). While technology may help to ameliorate some difficulties of rural health provision, it requires careful tailoring to the needs of the individual.

Another possible response to the challenges of rurality and remoteness is to develop expertise in local services, reducing the need to travel for care. Guidance for commissioners of neurological services in the UK emphasises building capacity in primary care and developing community resources such as support groups and information resources in order to assist people with managing their condition (Cader et al, 2016). However, according to the responses to the questionnaire in Ray et al's (2018) study and the wider literature, informal carers and health professionals have reported feeling significant strain and receiving variable levels of local support and development (Carers UK and Age UK, 2015; Green et al, 2018). In this context, training rural community practitioners and carers to deliver more specialised care themselves could potentially increase rather than reduce pressure on these services unless accompanied by investment of resources and clear pathways to escalate in a crisis.

Third-sector provision may also be less viable in rural areas, where the number of people affected by a health condition may not be adequately large to support a voluntary organisation within an accessible travelling distance. Kenny et al (2015) noted that while community participation is often suggested to be a mechanism for improving rural healthcare, the evidence base is limited, and proposals often fail to address a number of practical challenges, including sustainability, governance and ensuring that marginalised populations within rural localities are included and supported. Within the UK, local authorities and Councils for Voluntary Services have historically provided training, advice and support for the voluntary sector, but this support was reduced in many areas due to the financial downturn and the associated reduction in public spending (Bhati and Heywood, 2013). Rural charities, which often cover smaller populations and face higher transport costs, may be disproportionately affected by austerity measures and reductions in support.

Conclusions

This paper reports on a recent health needs assessment (Ray et al, 2018), which included a literature review, data review and surveys of people living with neurological conditions, their carers and healthcare practitioners in a rural county in England. The findings emphasised rurality as an important component of the challenges in accessing neurological care in the county. Patients, carers, the voluntary sector and professionals all reported that specialised neurological services were often difficult to access, in part due to long travel times, as well as other factors, such as long waiting times. Community and primary care services often lacked an understanding of neurological needs. As a result, people living with neurological conditions and their carers often did not receive prompt access to care that met their needs. Health professionals also reported frustrations at the challenges of providing good quality care in rural areas. Given that the challenges of delivering and accessing healthcare in a rural environments were a source of similar frustrations across all groups, there seems to be a potential for cross-cutting solutions. For example, clear pathways for rural health professionals to develop specialised skills and expertise could improve both staff recruitment and retention and patient access to care.

These findings are specific to neurological health needs within a single English county and may not be directly applicable to other areas or needs. Nonetheless, they highlight a need for further attention to rural and remote communities within the ongoing context of health and social care improvement and place-based commissioning at the NHS. The NHS long-term plan (NHS England, 2019) emphasises the importance of localism in commissioning, but this poses a particular challenge for uncommon and complex health needs in rural areas. Rural service users may be interacting with both specialised and community services, and the former are likely to be some distance from their homes and potentially outside local health area boundaries. In this context, there is a particular need for liaison between local community services and out-of-area services in order to ensure that people with neurological conditions and their carers experience joined-up care pathways and have access to services that meet their needs.

Although commonly discussed solutions to issues of rurality, such as the use of technology, encouraging the voluntary sector and developing skills within generalist provision, have potential, they require tailoring to the specific needs of individuals and to the particular context of local rural communities. These solutions may also face barriers related to rurality, such as poor online connectivity and difficulties in accessing training and support. Thus, there may be a need for investment in rural infrastructure, training and resources before health service reform can take place. Further research into rural and remote health services should explore the contextual features of rurality and remoteness that may affect health service provision, the implications of rurality for service users with specific needs and effective mechanisms for developing solutions in conjunction with local communities and healthcare providers.

KEY POINTS

  • Rural communities face particular challenges in accessing good-quality health and social care, but these challenges are under-researched, particularly when it comes to specific needs, such as those of patients living with neurological conditions
  • Patients, carers and staff report similar problems with the provision of rural neurological services, including long waiting lists, substantial travel times and lack of appropriate knowledge in community services
  • Increasing use of technology, upskilling of the general workforce and smarter use of community and voluntary services are potential responses to challenges of rurality, but require investment and tailoring to individual and community needs.
  • CPD REFLECTIVE QUESTIONS

  • Does the catchment area of your service cover rural areas? If so, how might this affect service users?
  • What approaches could you adopt to mitigate the impact of rurality?
  • What steps can you take within your practice to ensure that patients with complex needs receive joined-up care that meets their needs?