Neurological Conditions

A long-term neurological condition results from damage to the brain, spinal column or peripheral nerves. Some neurological conditions are life limiting, for example, multiple-system atrophy, motor neurone disease (MND) and Huntington’s disease. Neurological conditions may be intermittent, progressive, sudden onset or neurologically stable but with changing needs. Many conditions may cause significant physical impairment and impact significantly on a person’s abilities and quality of life. 

Neurological conditions account for 20% of acute hospital admissions (estimated) (Thomas et al, 2011) and account for 3.5% of total NHS spending (National Audit Office, 2015). Except for stroke and epilepsy, data regarding incidence and prevalence of neurological conditions in Lincolnshire is limited due to recording methods and low response rates. “A Health needs assessment for people living with neurological conditions in Lincolnshire” provides estimated data for several neurological conditions (Ray et al, 2018).  

Conditions identified in the Health Needs Assessment (HNA) discussed in this section are; epilepsy, migraines, headaches, Parkinson’s disease (PD), motor neurone disease (MND), spinal muscular atrophy, multiple sclerosis, traumatic brain injury, cerebral palsy in adults, and post-polio syndrome. Strokes/cardiovascular disease and dementia are covered elsewhere within the JSNA. 

• The National Service Framework (NSF) (2005) detailed quality standards and outlined a 10 year strategy to transform the way care services support people with long term neurological conditions to live as independently as possible. 
• The National Institute for Health and Care Excellence (NICE) provides clinical guidance, recommended pathways and quality standards for neurological conditions.  
• The Neurological Alliance Manifesto (2017) identified five key priority areas for people living with neurological conditions. 
• The Quality and Outcome Framework (QOF) financially rewards general practices for the provision of quality care, and helps to standardise improvements in the delivery of primary medical services. Stroke, dementia and epilepsy are among the clinical domains in the QOF. 

Except for stroke and epilepsy, prevalence data for neurological diseases is limited, making it difficult to fully understand the local scale of the problem and identify potential variation within the county. The HNA provided estimates for a range of conditions, using prevalence and incidence rates from multiple sources, extrapolating for known population numbers in Lincolnshire. 

Of Lincolnshire residents claiming Personal Independence Plan (PIP) payments for neurological conditions, the majority were due to multiple sclerosis, cerebrovascular disease and epilepsy. A larger proportion of claimants are eligible for the enhanced rates of PIP or Disability Living Allowance compared to other conditions, demonstrating the greater impact neurological conditions have on daily life. The Global Burden of Disease report shows neurological conditions have a greater impact on people living with disability (measured by Disability Adjusted Life Years) than on mortality (measured in Years of Life Lost) with potential to affect a person’s ability to retain employment, perform everyday tasks or remain independent. According to NHS England, “people with neurological conditions have the lowest health-related quality of life of any long-term condition”. Due to the nature of the conditions, Alzheimer’s, Parkinson’s and Motor Neurone Disease, do impact upon years of life lost.  

The number of day care admissions relating to neurological conditions in Lincolnshire has seen increases in the past, however it is uncertain whether this is attributable to increased demand or greater service provision becoming available. There has been significant fluctuation in the availability of specialist neurology support in Lincolnshire, almost certainly affecting this data (PHE 2017). 

Epilepsy prevalence is slightly higher in the east of the county compared to the west however, this may be due to the age profile impacting the non-age standardised data. 

A low prevalence of some conditions means that the medical treatment and oversight is managed by specialist centres outside of Lincolnshire. Such centres are required to treat a sufficient number of patients in order to retain their clinical competence and expertise.  

Neuroscience Strategic Clinical Networks (NSCNs) map funding responsibilities for services, raise the profile of neurological services, measure the impact of new presentations on services, identify best practice and provide opportunities to improve patient outcomes and experiences. The East Midlands NSCN is focusing on improvements to neurological rehabilitation, including preventive services, and developing commissioning guidance to include ‘an exemplar service specification’ for commissioners. 

Regional and local commissioned services for people with neurological conditions within Lincolnshire, include: 

• Neurological services provided by United Lincolnshire Hospital Trust (ULHT), with access to Sheffield and Nottingham tertiary neuroscience centres.  
• Ashby Ward, a specialist inpatient service at Lincoln County Hospital, providing multidisciplinary assessment and rehabilitation.  
• Consultant outpatient clinics provided across several sites in Lincolnshire 
• Clinical Neurophysiology services for adults and children at Lincoln County Hospital 
• Therapy services for Chronic Fatigue Syndrome and Myalgic Encephalomyelopathy, delivered by Lincolnshire Partnership Foundation Trust (LPFT) 

Complimentary to these clinical services, community and voluntary sector led support includes, 

• The Laurels Neurological Rehabilitation Centre – Specialist community based transitional rehabilitation in North-East Lincoln. 
• Headway Lincolnshire – Support, guidance and signposting for everyone affected by acquired brain injury and to health and social care professionals. 
• St Barnabas Hospice – Palliative and end of life care for adults living with life-limiting or terminal illnesses. 
• Huntington’s Disease Association (Lincolnshire) – Improving the quality of life for people affected by Huntington’s disease. Branches and support groups are run by volunteers offer a mixture of social activities, information sessions, fund raising and awareness raising activities. 
• Myaware (Lincoln) – Research and support charity dedicated to care and support for people affected by myasthenia. 
• The Lincolnshire Neurological Alliance is an association of the public and voluntary organisations with an interest in neurological conditions, based in Lincolnshire. 
• Polio Survivors Network – a network of Polio Survivors, their families and support groups, focusing on support, sharing information and education. 

Care and treatment of people living with neurological conditions can sometimes be provided by non-disease specific teams as people become older or because they commonly experience comorbidities.  

Due to the current level of need across Lincolnshire, capacity does not always enable proactive, personalised and holistic support for those whose condition is stable, but this service model is being currently developed via Primary Care Networks and neighbourhood working. 

The University of Lincoln surveyed people living with neurological conditions, their carers, medical professionals and voluntary sector representatives, to capture their views and highlight gaps or unmet needs. Participants reported mixed experiences of service use and service provision. 

Participants frequently cited: A lack of knowledge and understanding amongst health care professionals; long waiting lists; poor access to services; the organisation of care; having to travel out of the county. Participants also identified these key challenges: difficulty getting GPs and other health care professionals to understand their condition; and lack of services spread geographically across the county. 

Carers commonly expressed frustration regarding insufficient services and unavailability within Lincolnshire. Despite repeated requests for additional support and improvements, they felt ignored. Many carers felt unprepared and unsupported for their role and felt that general carers’ services were ill equipped to meet their needs in caring for people with neurological conditions. 

Relevant voluntary sector organisations concurred with above findings, highlighting a lack of service provision, lack of knowledge amongst health care professionals, and difficulties caused by care being delivered out of county. 

Both medical and allied health professionals agreed that community health services were patchy and highly dependent on the health condition. Lack of care co-ordination, long waiting lists, lack of capacity, and limited follow up appointments were all highlighted. The geography of the county was seen as a challenge to people living with neurological conditions, and for service provision. Participants would welcome development of multi-disciplinary assessment, longer appointment times for complex patients and specialist nurse in-reach into hospital departments. 

Of 137 responses from Lincolnshire, the 2019 National Neurology Patent Experience survey reports only 37% of patients in Lincolnshire felt their health care needs were being met (cf 49% for England). Neurological patients were less likely to be satisfied with frequency of appointments, or to receive written confirmation of diagnosis. A lower proportion of patients in Lincolnshire were seen by a specialist nurse or felt that they had received appropriate care after a hospital stay.  

The University of Lincoln survey, outlined above, highlighted the following: 

• A need for improved knowledge of neurological conditions among all health care professionals, particularly in relation to rare conditions 
• Gaps in support groups for certain conditions; There is a calling for community hubs to act as a ‘one-stop-shop’ for a range of support and services 
• Mental, emotional and practical support were all identified as unmet needs. 
• Gaps in neuropsychology, rehabilitation, and therapist service provision, and a lack of nurse specialists. A significant proportion of services are currently provided out-of-county, and people without access to transport may be disadvantaged. 

There are gaps and limitations in data available on neurological conditions. Further exploration of available data is recommended to validate or challenge estimates given in the Lincolnshire HNA (Source: Ray, M. et al). Currently, there is no register for Children and Young People with a neurological condition, meaning the only available data pertains to hospital admissions for under 19s.  

Given the findings from the Neurological Health Needs assessment, key stakeholders may wish to consider the following recommendations: 

• Extensive and ongoing data collection and analysis to establish a precise picture of the prevalence of neurological conditions in Lincolnshire; the existence of social inequalities; and development of an understanding of emergency hospital admissions. 
• Further analysis of hospital activity data to understand the reliance on out of area provision. 
• A review of current training provided to health care professionals to recognise, understand, and managing neurological conditions. 
• Commissioners need to explore gaps in service provision identified in the HNA – specifically neurosurgery, rehabilitation and neuropsychology. 
• Improve communication between service providers in- and out- of county as well as voluntary sector organisations, and patients and carers to ensure care-continuity and best use of the resources. 

• Health Needs Assessment for people living with neurological conditions in Lincolnshire March 2018