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Topic on a Page - Neurological Conditions

Data Sources:

PHE:

Mental Health, Dementia and Neurology

Epilepsy

Neurology Services: hospital activity data

Neurological Alliance:

Neuro Numbers 2019

Supporting Information:

HNA for people living with neurological conditions in Lincolnshire

Public Health England (PHE):

Neurology data and analysis: a guide for health professionals Updated Feb 2018

NHS England:

Neurological Conditions

World Health Organisation (WHO):

Neurology and public health

The Association of British Neurologists (ABN):

ABN: Acute Neurology Services Survey 2017

ABN: Neurology Commissioning Toolkit (NCT)

NICE:

Quality Standard: Rehabilitation after critical illness in adults [QS158] September 2017

Cerebral Palsy Pathway

Epilepsy Overview

Headaches

Motor Neurone Disease

Multiple Sclerosis

Neurological Conditions: general and other

Parkinson's Disease

Cerebral palsy in adults [NG119] published January 2019

Suspected neurological conditions: recognition and referral [NG127] Published May 2019

NHS Evidence:

Cerebral Palsy

Epilepsy

Headache

Huntington's Disease

Migraine

Motor Neurone Disease

Multiple Sclerosis

Neurology

Neurology and Rehabilitation

Neurology and Palliative Care

Parkinson's Disease

Post-Polio Syndrome

Spinal Muscular Atrophy

Traumatic Brain Injury

Miscellaneous:

British Polio Fellowship

Cerebral Palsy Support Network

Epilepsy Society

The Migraine Trust

MND Association

Spinal Muscular Atrophy Support UK

Linked Topics:

New Topic (Oct-18)

JSNA Topic: Neurological Conditions

Background

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 and Huntington's disease. Many conditions may cause significant physical impairment and significant impact on a person's ability to achieve their usual or wished roles and responsibilities, as well as impacting on quality of life. Neurological conditions may be broadly defined in four categories:

  • Intermittent and/or unpredictable – e.g. epilepsy, early multiple sclerosis;
  • Progressive – e.g. motor neurone disease, multiple systems atrophy;
  • Sudden onset – e.g. acquired brain or spinal injury;
  • Neurologically stable but with changing needs – e.g. cerebral palsy in adults where long term living with the condition can lead to problems with functional decline as patients age or Post-Polio Syndrome [PPS] where polio survivors may experience new symptoms of pain weakness, fatigue and functional decline after 10 to 50 years of stable functioning.

It is estimated that there are approximately 8 million people living in England with long-term neurological conditions (Source: Thomas et al, 2011). However, due to the lack of a centrally collated register of people with neurological conditions, it is difficult to access more precise data which could give a more accurate picture of the number of people with neurological conditions living in Lincolnshire. There have been actions in the past to test estimates against real local data but low response rates limited the reliability of the data generated.

Nationally, an estimated £3.3bn was spent on neurological services in the period 2012-13, with neurological services in the same period accounting for 3.5% of total NHS spending (Source: National Audit Office, 2015). It is estimated that people with long term neurological conditions account for 20% of acute hospital admissions and it is the third most common reason for people visiting a GP (Source: Thomas et al, 2011).

Accurate data on the actual incidence and prevalence of neurological conditions in Lincolnshire, apart from Stroke and Epilepsy, is largely absent. However, an independent health needs assessment (HNA), commissioned by Lincolnshire County Council, was completed by the University of Lincoln (Ray, M., Sisson, K., George, T., and Scott, E. Developing a Health Needs Assessment for people living with neurological conditions in Lincolnshire, 2018). The HNA presents estimated data for a number of neurological conditions and the report provides the primary evidence base for this JSNA topic.

The HNA for people living with neurological conditions in Lincolnshire focuses on adults over the age of 18 and young adults transitioning into adult services with a range of neurological conditions. The conditions identified in the HNA are:

  • Epilepsy
  • Migraines
  • Headaches
  • Parkinson's disease (PD)
  • Motor neurone disease (MND)
  • Spinal muscular atrophy
  • Multiple sclerosis
  • Traumatic brain injury
  • Cerebral palsy in adults
  • Post-polio syndrome

The HNA also included stroke which is covered in a separate JSNA Stroke topic and will therefore not be discussed in detail in this topic.

Dementia is also defined as a neurological condition. It was however kept out of scope in the HNA. For information on dementia please refer to the JNSA Dementia topic.

Context

National Strategies, Policies & Guidance

The National Service Framework (NSF) (2005) for long term conditions focussed on neurological conditions and was developed around 11 quality requirements which strived to 'put the individual at the heart of care and to provide a service that is efficient, supportive and appropriate from diagnosis to the end of life'. Further information regarding the progress of the NSF is provided in the HNA, but it has not been fully implemented.

The National Institute for Health and Care Excellence (NICE) provides the range of clinical guidance, recommended pathways and quality standards for neurological conditions. Information and advice is available on diagnosis, assessment and management of conditions such as epilepsy, motor neurone disease, Parkinson's disease, and others.

The Neurological Alliance Manifesto (2017) has identified four key priority areas for people living with Long Term Neurological Conditions (LTNCs):

  • Access to specialist care through every stage of the condition, in all settings (home, community, hospital and hospice);
  • Improved awareness of neurological conditions in primary care, accompanied by the ability to recognise symptoms and confidently refer, and reliably signpost people to other forms and sources of support;
  • To ensure that treatment decisions for people with complex and rare neurological conditions are made in partnership with the person living with the condition, their families and supporters; decisions should not be made purely on the basis of cost;
  • Make mental health and wellbeing for people living with LTNCs a national priority.

The General Medical Service 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 and epilepsy are among the clinical domains in the QOF. However, information on epilepsy is limited to recording whether the practice has a register of people receiving medication for the disease.

The NHS Right Care Commissioning for Value programme identifies opportunities to improve outcomes in the highest spending programmes, which includes neurological conditions but there has been limited progress in pursuing its findings to date.

The National Programmes of Care and Clinical Reference Groups provide a range of tools for specialised neuroscience services and specialised adult neurosurgery. Those include service specifications, commissioning policies and policy statements.

In 2015 NHS England commissioned Thames Valley Strategic Clinical Network to develop a plan for delivery of person centred coordinated community-based care models. Their work has resulted in publication of the Transformation Guide for Commissioners.

Local Strategies & Plans

At the time of writing, neurological conditions considered in this chapter are not a part of any strategic plans or commissioning strategies in Lincolnshire.

What is the picture in Lincolnshire?

What the data is telling us

Apart from stroke and epilepsy, data on prevalence of neurological diseases is limited. 'A Health Needs Assessment for people living with neurological conditions in Lincolnshire' report was commissioned in 2017 and provides estimates of prevalence for a range of conditions. To produce those estimates, the authors used prevalence and incidence rates from various sources and applied this information to the known population numbers in Lincolnshire. According to those estimates we can expect that, the following numbers of people are living in Lincolnshire with the following neurological conditions:

  • Multiple sclerosis – 1,219
  • Parkinson's disease – 1,561
  • Motor neurone disease – 52
  • Huntington’s disease – 91
  • Muscular dystrophy - 53-88 (depending on the source)
  • Cerebral palsy – 1,382
  • Traumatic brain injury - 1,694

This data should be interpreted with caution and is likely to be an underestimation of the true level of disease. Further exploration of actual data is recommended in order to validate or challenge these estimates.
(Source: Ray, M. et al)

The health needs assessment provides data on hospital activity related to neurological conditions. Annually there were over 10,000 hospital admissions of Lincolnshire patients relating in some way to a neurological condition (as a primary or secondary diagnosis). This is based on annual data for the years 2012/13 and 2015/16 for adults aged 20 and over. During the same period, the numbers of day case admissions varied from 3,615 in 2013/14 to 4,958 in 2015/16. Both admission and day case data include 'out of area' provision.

The majority of admissions related to neurological conditions, were emergency admissions (7,992 out of 10,191 - 78% in 2015/16). Out of those emergency admissions, only around a third had a neurological condition recorded as a primary reason for admissions (headaches and migraines, epilepsy, spine and brain injury were among the most common). The majority had another primary reason for admission, with a neurological condition noted as comorbidity. These conditions are important co-morbidities however and the interplay with the primary reason for admission, and the maintenance of treatment for the neurological condition is complex.

General practices across England establish and maintain a register of patients aged 18 and over receiving drug treatment for epilepsy. Based on those registers, there were just over 5,700 people receiving drug treatment for epilepsy in Lincolnshire in 2016/17. This equates to the prevalence rate of 0.9% of population aged 18 and over.

The recorded prevalence of epilepsy varies between the CCGs in Lincolnshire: from 0.8% of the population in South and South West Lincolnshire to 0.9% in Lincolnshire West and 1% in Lincolnshire East. In comparison, the recorded prevalence in England is 0.8% of the adult population. It is important to note that the register data is not age standardised and the age profile of individual areas may have impact on the level of disease. (Source: PHE)

A register for children and young people is not available. However, hospital admissions provide some indication of the level of disease in young people aged under-19. In the financial year 2015/16 there were 97 hospital admissions of people aged under-19 in Lincolnshire with a primary diagnosis of epilepsy (ICD 10 codes G40 and G41). This equates to a rate of 61.4 per 100,000 population in Lincolnshire compared to 76.6 per 100,000 population in England (not statistically different). (Source: PHE)

In Lincolnshire there were 1,070 people claiming Disability Living Allowance (DLA) for neurological conditions in November 2017. This makes up 4% of all the DLA claims in Lincolnshire. (Source: Nomis). Among the neurological diseases, multiple sclerosis was the most common disabling condition (610 claims), followed by epilepsy (410).

From April 2013, Personal Independence Plans (PIP) are gradually replacing DLA so many claimants and all new applicants are now in receipt of the new benefit. In November 2017, 2,359 Lincolnshire residents were receiving PIP payments for neurological conditions. The greatest proportion of those payments was awarded due to cerebrovascular disease (461 claims - 20%), followed by multiple sclerosis (406 – 17%) and epilepsy (235 – 10%). In November 2017, neurological conditions accounted for 12.6% of all the PIP payments in Lincolnshire. More information about the Personal Independence Plans can be accessed via Stat- Explore tool.

Trend

In England, the number of neurology inpatient admissions and outpatient appointments rose steadily between 2007-08 and 2013-15 (Source: NAO, 2015). Data on patients suffering from dementia, stroke, migraine and headache have been excluded from inpatient data therefore the actual level of service activity is likely to be higher than indicated here.

Unlike the data for England, the number of inpatient admissions among Lincolnshire patients has fluctuated, showing a slight peak in 2013/14 and decreasing since. There were fewer inpatient admissions in 2015/16 than in 2012/13 across three of the four CCG areas, with NHS Lincolnshire West being the exception.

The level of day case admissions in Lincolnshire shows a different pattern over time than England. There was a drop in day case admissions in 2013/14 and an increase since this date. The number of day care admissions connected to a neurological condition increased by over 1,000 admissions in the four year period between 2012/13 and 2015/16. This may be a direct result of either demand for services, 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.

The recorded prevalence of epilepsy has been increasing steadily year on year in Lincolnshire, except between 2009/10 and 2010/11 when it decreased by 2.5%. The number of people on the registers was 5,723 in 2016/17 compared to 4,816 in 2009/10; a 19 % increase in 8 years. Recorded prevalence of epilepsy in England followed a similar pattern, but levels were slightly lower nationally than in Lincolnshire and annual increases were less steep.

In Lincolnshire, hospital admissions for epilepsy in children and young people decreased by a quarter between 2011/12 and 2015/16 from 82.2 per 100,000 population to 61.4 per 100,000 population. This figure includes patients admitted to hospitals outside Lincolnshire. Nationally admission rates were stable over the same period. Hospital admissions for epilepsy in people aged 18 and under tend to be slightly higher in males than in females.

Key Inequalities

Long term neurological conditions carry a significant burden to the individual, their families and carers. Some neurological conditions are life threatening, with many severely affecting an individual’s quality of life. According to NHS England, people with neurological conditions have the lowest health-related quality of life (EQ5D) of any long term condition. EQ-5D is a standardized instrument developed by the EuroQol Group as a measure of health-related quality of life that can be used in a wide range of health conditions and treatments.

Findings from the 2012 GP Patient Survey indicated that only just over half of people with long term neurological conditions felt supported to manage their condition (57.5% - the lowest score out of examined long term conditions).

In Lincolnshire, of people who receive DLA due to neurological conditions, 41.1% received a higher care rate compared to 28.6% across all conditions. Similarly, out of those who receive PIP payments due to neurological conditions, 60% receive the enhanced daily living award compared to 46.8% across all the conditions. This demonstrates the greater impact neurological conditions have on the daily life of an individual compared to some other conditions. More information about PIP and DLA can be accessed via the Stat- Explore tool.

According to the Health Needs Assessment, there were clear perceptions of inequalities in service provision depending on the type of condition individuals were diagnosed with. Those with rarer neurological conditions felt that their needs were being less well met than those with more commonly occurring neurological conditions.

Behavioural and disease factors can increase someone's likelihood of having stroke or developing some forms of dementia. Those lifestyle related risk factors such as high blood pressure, smoking, obesity, poor diet and lack of exercise are more prevalent in the areas of greater deprivation. For more information about stroke and dementia, please see the relevant JNSA topic pages. The link between lifestyle or deprivation and other neurological conditions discussed in this chapter is not apparent.

According to data from the National Mental Health, Dementia & Neurology Intelligence Networks, 40% of Lincolnshire patients attended hospital outside the county in recent years. As a significant proportion of the services for people with neurological conditions are provided out of the county, people with poorer access to transport may be put in a disadvantaged position. For further information please see the JSNA topic Access to Transport.

Current Activity & Services

The 'Health Needs Assessment for people living with neurological conditions in Lincolnshire' describes a range of healthcare and voluntary services in Lincolnshire. Please refer to the full document for further details.

Neurological Services – United Lincolnshire Hospital Trust (ULHT)

Neurological Services at ULHT are organised into north and south Lincolnshire with access to Sheffield and Nottingham tertiary neuroscience centres respectively. All patients admitted to any of the ULHT hospitals will have access to an inpatient neurology service throughout the entirety of their condition. Transfers or admissions to regional tertiary neuroscience centres are available for patients who may require a more specialist neurological or neurosurgical care service which is not currently available within Lincolnshire. Further information on this service is available in the HNA full document.

Specialist Rehabilitation Unit – Ashby Ward

Ashby Ward is a specialist inpatient service at Lincoln County Hospital which houses a purpose built rehabilitation unit accepting patients with newly acquired neuro-disabilities and other forms of complex neurological disorders which require a multidisciplinary assessment and rehabilitation approach. Patients are supported to achieve their full potential for physical, cognitive, social and psychological function and quality of life. Consultant outpatient clinics are also provided across a number of sites in Lincolnshire.

Clinical Neurophysiology

Clinical Neurophysiology is based at Lincoln County Hospital's Hemswell Clinic and services are available for both adults and children. Clinical investigations are conducted by both consultant clinical neurophysiologists and clinical physiologists, including electroencephalogram (EEG), nerve conduction studies (NCS), electromyography (EMG), visual evoked potentials (VEP) and somatosensory evoked potentials (SSEP).

Chronic fatigue syndrome/Myalgic encephalomyelopathy (CFS/ME)

Chronic Fatigue Syndrome and Myalgic Encephalomyelopathy services are therapy led services delivered by Lincolnshire Partnership Foundation Trust (LPFT). Domiciliary services to severe and very severe sufferers are also offered. The majority of mild to moderate sufferers are being offered CFS and ME rehabilitation groups.

The Laurels Neurological Rehabilitation Centre – Christchurch Group

The Laurels Neurological Rehabilitation Centre, a Headway approved provider (2016/18), opened in 2014 and provides specialist community- based transitional rehabilitation in North-East Lincoln. According to the provider's website, the centre offers accommodation for 12 residents. A lead consultant works at the Laurels and is supported by an interdisciplinary team of rehabilitation medicine consultants, neurologists, a neuropsychiatrist, neuropsychologists, physiotherapists, speech and language therapists and occupational therapists.

There are also a number of voluntary and community support groups including:

  • Headway Lincolnshire – a charitable organisation which provides support, guidance and signposting to individuals, families and carers of people affected by acquired brain injury as well as to health and social care professionals.
  • St Barnabas Hospice – a charitable organisation providing palliative and end of life care to adults living with life-limiting or terminal illnesses.
  • Sue Ryder Hospice – provides person centred hospice and neurological care for people facing life changing diagnosis by providing medical, emotional and practical support.
  • Parkinson's UK – a research and support charity that aims to improve the quality of life for people affected by Parkinson's disease and find a cure for the condition.
  • Huntington's Disease Association (Lincolnshire) – a support charity that aims to improve the quality of life for people affected by Huntington's disease. Branches and support groups are run by volunteers and offer a mixture of social activities, information sessions, fund raising and raising awareness of the condition.
  • Myaware (Lincoln) – a research and support charity dedicated solely to care and support for people affected by myasthenia. Branches and support groups offer opportunities for people living with myasthenia and their families.
  • MS Society – a research and support charity dedicated to people living with MS. Branches and support groups offer opportunities for people living with MS and their families.
  • The Lincolnshire Neurological Alliance is an association of people and voluntary organisations with an interest in people with a neurological condition, based in Lincolnshire.
  • Polio Survivors Network – a network of Polio Survivors, their families and support groups. They focus on support, sharing information and education.

Unmet Needs & Gaps

The University of Lincoln conducted a survey among people living with neurological conditions, their carers, medical professionals and voluntary sector representatives. Some of the responses from people living with neurological conditions and medical professionals highlighted gaps and unmet needs.

People living with neurological conditions in Lincolnshire would like to see improved knowledge of neurological conditions among all health care professionals, especially in relation to rare neurological conditions. There was also a perceived gap in relation to support groups for certain conditions. They called for community hubs where people living with neurological conditions could access a range of support and services in one place. Mental health and emotional support, and practical support were also named among the areas of unmet needs.

They would like to see the development of multi-disciplinary assessment, longer appointment times for complex patients and specialist nurse in reach into hospital departments.

The medical/allied health professionals, who responded to the survey conducted by the University of Lincoln, identified three key gaps in provision: neuropsychology, rehabilitation and therapist services and the need for nurse specialists.

Local Views & Insights

As well as unmet needs and gaps, the survey conducted by the University of Lincoln captured views on the experience of and access to neurological services in Lincolnshire. Forty one responses were provided by people living with neurological conditions in Lincolnshire. They indicated mixed experiences of service use and provision in relation to their conditions. Lack of knowledge and understanding of health care professionals, long waiting lists, poor access to services, the organisation of care and having to travel out of the county were all frequently cited. Participants were able to identify key challenges associated with living with neurological conditions such as difficulties in getting GPs and other health care professionals to understand their condition or a lack of and poor spread of services in the county.

Nineteen people who were caring for individuals with neurological conditions in Lincolnshire responded to the survey. Their experiences seemed to be largely negative. There was a strong sense of frustration that the services their loved ones needed were insufficient or unavailable in the county and that despite repeated requests for additional support and improvements they felt they were being ignored.

Eleven responses were received from voluntary sector organisations that provide support for people living with a wide range of neurological conditions in Lincolnshire. They highlighted a number of issues with a lack of service provision, lack of knowledge by health care professionals and difficulties created by out of county care again being prominent.

Medical/allied health professionals (thirteen responses) agreed with service users and carers that community health services were patchy and very much dependent on condition. Lack of care co-ordination, long waiting lists and limited follow up appointments were all highlighted. Lack of capacity within community rehabilitation teams was also discussed. The geography of the county was seen by professionals as a challenge both to people living with neurological conditions in Lincolnshire and in terms of service provision. For more details about the survey and the profile of the respondents please refer to the full HNA document.

Risks of not doing something

A review of literature and local evidence highlighted the following risks of inadequate services and support for people living with the neurological conditions and their carers:

  • Difficulties in accessing services and poor coordination and communications between services (especially when patients return to the county after receiving specialist treatment elsewhere) may lead to delays in treatment and worsening symptoms. This can have a severe, negative impact on the psychological wellbeing of individuals and their families.
  • The emotional, physical and cognitive impact on people living with neurological conditions is often exacerbated by a perceived lack of support, advice and information, and lack of understanding from health care professionals.
  • Lack of community based provision, particularly rehabilitation, may discourage people with neurological conditions from living independently in their communities and limit their ability to maximise independence in care settings.
  • According to the Valuing Carers 2015 report, an estimation of the value of carers’ support to the UK economy is £132 billion a year. Many carers of people with neurological conditions in Lincolnshire expressed concerns that they were unprepared for and unsupported in the role. They felt that general carers' services were ill equipped to meet the needs of those caring for people living with neurological conditions.
  • The costs of non-elective treatment for neurological conditions in Lincolnshire are significantly higher than the costs of elective treatment. Some of this might be due to the type of neurological conditions that result in emergency admission but gaps in community based provision may be contributing to the number of emergency admissions to hospital in the county.

(Source: Ray, M. et al.)

What is coming on the horizon?

Key priorities for Neuroscience Strategic Clinical Networks (NSCNs) are to:

  • map funding responsibilities for services e.g. NHS England and/or CCGs;
  • raise the profile of neurological services;
  • measure the impact of neurological presentations on acute services;
  • identify best practice in integrated pathways;
  • identify areas for service improvement and free up capacity in service systems via service redesign and;
  • improve patient related outcomes and the experience of care.

The East Midlands NSCN are focusing on improvements in neurological rehabilitation, including preventive services, and in developing commissioning guidance and 'an exemplar service specification' for commissioners.

What should we be doing next?

In light of the findings from the Neurological Health Needs assessment, the authors made the following recommendations for consideration by key stakeholders involved in care of people with neurological conditions:

  • Further data collection and analysis is needed to establish the true picture of the prevalence of neurological conditions in Lincolnshire, existence of any social inequalities and understanding of the reasons behind emergency hospital admissions.
  • Further analysis of hospital activity data is required, to obtain more up-to-date picture and better understanding to what extend Lincolnshire patients need to rely on out of area provision.
  • A review of current training provided to all health care professionals is needed, in relation to recognising, understanding and managing neurological conditions.
  • Commissioners need to explore the gaps in the service provision identified by the HNA, specifically neurosurgery, rehabilitation and neuropsychology.
  • Steps need to be taken to improve communication between the service providers in and out of the county as well as CCGs, voluntary sector organisations and patients and carers in order to ensure care continuity and best use of the resources.
  • There are opportunities to develop some of the existing programmes and initiatives to include specific needs of people with neurological conditions; this could include Make Every Contact Count (MECC) and Care Navigation training, Lincolnshire Carers Service or Integrated Neighbourhood Working.

 

If you need to contact us about this topic, please email JSNA@lincolnshire.gov.uk