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Long term neurological conditions

Introduction

The nervous system includes the brain and spinal cord and sensory receptors such as the eyes and ears. The nervous system works to regulate and co-ordinate the body's activities. Neurological conditions occur when a person's nervous system is damaged through illness or injury and this regulation and co-ordination will be affected as a result. Sometimes it is known how damage has occurred (e.g. as a result of head injury). In other instances the exact cause of the damage is not known and it is likely that the damage is a result of more than one factor.

A long term neurological condition (LTNC) is one in which will affect a person and those who care for them for all of their life. For some, the condition will progress at a rate which can vary greatly between conditions and between individuals. For others their will be no progression of the condition though the person's needs will change due to their own development or ageing. Some conditions such as epilepsy are intermittent meaning they will affect people differently at different times. LTNCs can occur at any point in a person's life: they may be present from birth; they may develop in childhood or adulthood; or may be due to a sudden injury.

People with a LTNC and their carers can be supported to manage the LTNC in a way which is best for them. This requires supporting peoples to live independently, often for many years. People with LTNCs can have a good quality of life and have the same capacity to excel as anyone else.

The symptoms of LTNC are wide-ranging and vary both between and within conditions. This means that people with LTNC may require support from a wide range of services which will require co-ordination. Despite the very different journeys faced by people with differing LTNC, they all share feelings related to facing a future that will require adjustments to their lives and the lives of those who care for them.

What do we know?

Prevalence

LTNCs are more common than most people (including health professionals realise with 10 million people living with a LTNC in the UK. LTNCs account for 19% of hospital admissions (Royal College of Physicians, 2008). They are the third most common reason for seeing at GP (Department of Health, 2005).

25% of people between the ages of 16 and 64 with a chronic disability have a neurological condition and 33% of disabled people in residential care have neurological condition (Royal College of Nursing et al, 2009).

There are few robust estimates of the incidence and prevalence of LTNC in the UK. A systematic review was conducted in 2011 to address this (Hoppitt et al, 2011).

The following table shows the estimated incidence and prevalence of LTNC. Figures should be regarded as minimum figures as even if 100% of diagnosed patents were captured, there would still be omissions of those undiagnosed.

Table 1: Estimated prevalence and incidence of LTNC

Prevalence = the total number of people with a disease or condition in the population at any one time

Incidence = the number of new cases of a disease or condition during a year

LTNC

Description

Populations at risk

Measure

Rate

Source

Motor Neurone Disease

A rare neurodegenerative conditions leading to progressive muscle weakness causing loss or mobility and difficulties with speech, swallowing, and breathing

Affects adults of all ages though usually diagnosed in people over 40. Affects more males than females

Incidence

1.06 per 100,000 in the South East

Hoppitt et al, 2011

Prevalence

4.02 to 4.91 per 100,000

Hoppitt et al, 2011

Huntington's Disease

An inherited conditions that cause behavioural changes, problems with feeding and communication, and abnormal movements

Most will develop problems between the ages of 35 and 55.

Prevalence

12 per 100,000

NHS Choices

Progressive supranuclear palsy

A rare progressive conditions leading to problems with balance, movement, vision, speech and swallowing. This is cause by a build up of a protein in the brain which will be broken down before it reaches high level in non-sufferers

Usually diagnosed in people over the age of 60

Prevalence

6.5 per 100,000

Hoppitt et al, 2011

Spinal cord injury

An injury that results in damage to the spinal cord leading to either a temporary or permanent loss of function

Can affect anyone at any age

Incidence

2 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

50 per 100,000

Taken from Royal College of Nursing et al, 2009

Epilepsy

The most common serious neurological conditions characterised by recurrent seizures

Affects anyone at any age

Incidence

24 to 58 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

430 to 1,000 per 100,000

Taken from Royal College of Nursing et al, 2009

Multiple sclerosis

Most common disabling neurological condition in young adults. MS affects the brain and/or spinal cord causing a wider range of potential symptoms. In many cases it is possible to treat the symptoms which range from mild to seriously disabling.

Affects more females and often diagnosed between 20 and 40 years of age

Incidence

3-7 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

100-120 per 100,000

Taken from Royal College of Nursing et al, 2009

Dementia (early onset)

Dementia is common in people over the age of 65 but much less so in younger adults. It is a syndrome associated with an ongoing decline of the brain.

Associated with many risk factors with age been to most significant. People with learning disabilities are at a greater risk of developing dementia.

Prevalence

67 per 100,000

Taken from Royal College of Nursing et al, 2009

Post-polio syndrome

Affects people who have had polio in to past. Includes a wide rang of symptoms which develop gradually ad include extreme tiredness, muscle weakness, and muscle and join pain

Only affects people who have had polio meaning most cases will be in people who did not receive the childhood vaccination

Prevalence

250 per 100,000

Taken from Royal College of Nursing et al, 2009

Cerebral palsy

Refers to a number of conditions which affect movement and co-ordination. Occurs due to abnormal brain development or damage to the brain before, during, or shortly after birth

Babies who are premature or whose mother had a infection during pregnancy are at a higher risk a developing cerebral palsy

Prevalence

186 per 100,000

Taken from Royal College of Nursing et al, 2009

Muscular dystrophy

Inherited genetic conditions leading to muscle weakness which is progressive. Sometimes the heart or muscles used for breathing are affected.

Mutations in genes which cause MD are usually inherited from parents who have a family history of MD

Prevalence

50 per 100,000

Taken from Royal College of Nursing et al, 2009

Parkinson's disease

Progressive degenerative condition with varying symptoms and progression. Predominately affects movement

Prevalence increases with age

Incidence

17 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

200 per 100,000

Taken from Royal College of Nursing et al, 2009

Huntington's

An inherited progressive condition affecting nerve cells in the brain leading to problems with movement, cognition and behaviour.

Caused by an inheriting a faulty genes from parents

Prevalence

13.5 per 100,000

Taken from Royal College of Nursing et al, 2009

Charcot-Marie-Tooth

Charcot-Marie Tooth leads to the damage of the nerves found outside of the main central nervous system (brain and spinal cord). These nerves control he muscles and relay sensory information to the brain.

An hereditary condition with variable patterns of inheritance

Prevalence

40 per 100,000

Taken from Royal College of Nursing et al, 2009

Dystonia

A range of movement disorders causing muscle spasms and contractions

Some Primary cases are genetic but for most there is no known cause. Secondary dystonia can occur as a symptom of an underlying condition or injury such as stroke or Parkinson's disease

Prevalence

65 per 100,000

Taken from Royal College of Nursing et al, 2009

Essential tremor

An uncontrollable shake or tremble of part of the body which gradually gets worse overtime and can make carrying out normal, everyday activities more difficult

Generally affects people over the age of 40 and can run in families (in at least 50% of cases)

Prevalence

850 per 100,000

Taken from Royal College of Nursing et al, 2009

Migraine

A severe headache which can include other symptoms including nausea, vomiting and increased sensitivity to light or sound

More common in women than men

Incidence

400 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

15,000 per 100,000

Taken from Royal College of Nursing et al, 2009

Spin Bifida and congenital hydrocephalus

Spina bifida is a caused by neural tube defects and occurs when the spine does not develop properly and is left with a gap. Surgery can close the hole in the spine but damage that has already happened to the spinal cause can lead to leg weakness or paralysis and incontinence. Many babies will also develop hydrocephalus which is an excess fluid on the brain which can cause further damage to the brain

More common when mothers have a lack of folic acid during pregnancy

Prevalence

24 per 100,000

Taken from Royal College of Nursing et al, 2009

Young onset stroke

A stroke occurs when blood supply to part of the brain is interrupted. This can either be due to a blood clot (ischemic: accounting for 85% of cases) or when a blood vessel supplying the brain bursts (haemorrhagic)

Strokes can occur at any age although older people are most at risk. People with South Asian, African or Caribbean ethnic backgrounds are ore at risk. Poor lifestyle factors including smoking and lack of exercise are risk factors for stroke

Incidence

55 per 100,000

Taken from Royal College of Nursing et al, 2009

Stroke (all ages)

Incidence

204 per 100,000

Taken from Royal College of Nursing et al, 2009

Prevalence

800 per 100,000

Taken from Royal College of Nursing et al, 2009

Traumatic brain injury

A serve head injury can lead to pressure been place on the brain which can lead to damage to the brain which can be temporary or permanent

Can affect anyone at any age though children and older people may be at an increase risk of falls

Leading to hospital admission (incidence)

175 per 100,000

Taken from Royal College of Nursing et al, 2009

Leading to long term problems (prevalence)

1,200 per 100,000

Taken from Royal College of Nursing et al, 2009

Living with LTNC

The average time between diagnosis of a LTNC and death varies greatly from months (e.g. motor neurone disease) to decades (e.g. multiple sclerosis) (Department of Health, 2005).

People with LTNCs can face a variety of difficult problems associated with; movement (e.g. walking); sensing (e.g. feeling pain); behaviour (e.g. confusion); communication (e.g. speaking); and emotion (e.g. depression).

Having a LTNC can affect many aspects of a person life including relationships, employment and education, and future expectations. They can also greatly affect the lives of those who care for the person with a LTNC.

Services

People with LTNC have improved health outcomes when they obtain a prompt diagnosis and begin appropriate treatment quickly (Department of Health, 2005). There is a lack of rehabilitation service provisions for people with LTNCs (Royal College of Physicians, 2008).

There is some evidence that people from minority ethnic backgrounds find it more difficult to access neurological services (Department of Health, 2005).

63% of people responding to a survey about peoples with LTNCs experience of hospital admissions (NCPC, MNDA, MSS, and Parkinson's UK 2009) were not asked if they had a care plan or advance decisions to refuse treatment. 25% felt that they were rarely listened to by staff during their admission. 13.2% were readmitted within 4 weeks with a problem which related to their original admissions.

A relatively small proportion of people with LTNC requiring palliative care services are accessing them. People with a cancer diagnosis are more likely to access palliative care across all settings when compared to people with a non-cancer diagnosis. Neurological conditions including motor neurone disease account for 23.7% of people seen in an inpatient setting; 31.9% seen in a day care setting; 17.4% seen in a community care setting; 8.8% of people seen in a hospital support setting; and 11% of people seen in an outpatient setting (National Council for Palliative care, 2015). There is unequal access to palliative care services on a basis of ethnicity with non-white people having below expected levels of access across all settings (National Council for Palliative care, 2015).

Systems used to collect information on people accessing palliative care vary with some services having no clinical database at all and data quality issues remain some cause for concern despite recent prioritisation od data collection (National Council for Palliative care, 2015).

Facts, figures, and trends

There is no one source of data which will allow us to see the number of people living with LTNCs in the local area. Two key sources of information which we can use as a best guide are nationally researched prevalence rates such as those in table 1 above; and the number of admissions which mention specific LTNC diagnoses. The latter of which can also be used as a measure of how well LTNCs are being treated in primary care. Some LTNC are also counted on GP registers and we can also look to the number of people who are accessing specific services as a further guide. The data below is provided on a profile created by Public Health England which can be accessed here for further information about the provide of LTNC in the area http://fingertips.phe.org.uk/profile-group/mental-health/profile/neurology

Data is presented at the level of Clinical Commissioning Group (CCG): for Reading, this is South Reading and North and West Reading CCGs. Some data is shown for all LTNCs and others for specific diagnoses.

All LTNCs

The first chart below shows us the age standardised rate of emergency admissions to hospital due to a neurological condition with a mention of any of the neurological conditions in the diagnosis code, for those aged 20+ (CCG resident population). It can be seen that admission rates for people registered with the local CCGs are lower than the national average with this difference much more pronounced in North and West Reading. This is telling us that either the prevalence of these conditions (or the rate in which they are recorded) is lower in the local area or that the conditions are better managed in local primary care preventing the need for hospital admission.

image1 image2

Source: Public Health England

When we look at the age standardised rate of new outpatient appointments (consultant led) for those aged 20+ in the local area we can see that these rates are above the national average particularly in South Reading. Patients are more likely than the England average to be seen close to their home for outpatient appointments.

image3

Source: Public Health England

Epilepsy

Around 590 people aged 18 and over who are registered with each CCG are recorded as having a diagnosis of epilepsy. This is a rate of an average of approx. 600 people per 100,000 which is lower than the England average of 780 people per 100,000. The rate is lower in South Reading than North and West Reading. This does not necessarily mean that the prevalence is truly lower as people's diagnosis may not be recorded on the GP Practice system. However, significantly fewer people from the CCGs are admitted to hospital with a diagnosis of epilepsy which could support a lower prevalence or could indicate that epilepsy is better managed in primary care within the CCG. Increased evidence for the good management of epilepsy in primary care comes from a higher rate of people with diagnosed epilepsy from the CCGs being seizure free for a 12 month period than the England average. The rate of mortality from and underlying cause of epilepsy in the local area is comparable to the England average.

Headaches and migraine

It is not possible to put a figure on the number of people who suffer from severe headache or migraine in the local area but we can look at the number of hospital admissions where headache or migraine is mentioned as either the primary or a secondary reason for admission. Around 250 people from the CCGs are admitted to hospital as an emergency for this reason each year. This is a rate of around 160 per 100,000 which is a lower rate than the national average.

Motor neurone disease

Around 20 people from the CCGs are admitted to hospital as an emergency admission each year - a rate of around 15 per 100,000. Numbers are too small to say that this is higher or lower than the England average.

Multiple sclerosis

Around 66 people from the CCGs are admitted to hospital each year. Admissions are lower than the England average.

Parkinson's disease

Around 190 people from the CCGs are admitted to hospital each year. The rate of admission is comparable to the England average.

Brain and spinal injury

The chart below shows us the age standardised rate of emergency admissions with a mention of Traumatic Brain and Spine Injury in the diagnosis code, this is for those aged 20+. Rates are not calculated when the number of admissions is less than 20. Around 40 per 100,000 people from the local area are admitted for this reason each year.

image4 image5

Source: Public Health England

National & Local Strategies (Current best practices)

The National Service Framework for Long-term Conditions (The Department of Health, 2005). Focuses on neurological conditions and stresses the importance of a person-centred approach which puts the individual at the centre of making decisions related to their care. It is based on 11 quality requirements with explanations of how these can be delivered;

  • Person-centred - the 'core' requirement of all services
  • Early diagnosis and treatment
  • Those in hospital are treated in a timely manner by people with appropriate skills ad facilities
  • Early and specialist rehabilitation
  • Community based rehabilitation and support
  • Vocational rehabilitation
  • Improving access to assistive technologies
  • Increasing access to palliative care
  • Providing personal care and support
  • Supporting families and cares
  • Meeting specific neurological needs when receiving treatment for other reasons in other health or social care settings

Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care (Royal College of Physicians, 2008): Builds on the National Service Framework to provide an understanding of the interplay between neurology, rehabilitation and palliative care. Recommendations include:

  • Early referral to palliative care services for rapidly progressing neurological conditions such as Motor Neurone Disease
  • Ensuring that rehabilitation and palliative care teams have specialist skills in managing LTNC
  • Closer collaboration and cross-referral between services
  • A different model of service interaction depending on the speed of progression of a person's LTNC
  • People suspected of having a LTNC should be referred to a specialist neurological service and, if confirmed, receive ongoing special services and support
  • People with a LTNC should be referred to rehabilitation services if they develop significant disability or their independence is affected

Long term neurological conditions: a good practice guide to the development of the multidisciplinary team and the value of the specialist nurse (Royal College of Nursing et al, 2009). Guidance resulting from a collaboration between three major charities for people with LTNCs, The Department of Health, The Royal College of Nursing, and Skills for Health. It is aimed at commissioners and providers of services. There is a focus on MS, Parkinson's and Epilepsy though equally applicable to other LTNCs. Describes the characteristics of an effective workforce and emphasises the role of the specialist nurse with multi-disciplinary teams.

Raising the profile of long term conditions care: A compendium of information (Department of Health, 2008)

NICE pathway for neurological conditions (NICE)

Links to further guidance around specific LTNCs:

Multiple sclerosis in adults: management (NICE, 2014)

Motor neurone disease: assessment and management (NICE, 2016)

Dementia: supporting people with dementia and their carers in health and social care (NICE, 2006)

Epilepsies: diagnosis and management (NICE, 2012)

Headaches in over 12s: diagnosis and management (NICE, 2012)

Cerebral Palsy (DUE TO BE PUBLISHED BY NICE IN JANUARY 2017)

Maternal and child nutrition NICE (2008)

Healthy start vitamins: special report on cost effectiveness (NICE, 2015)

Parkinson's disease in over 20s: diagnosis and management (NICE, 2006)

Head injury: assessment and early management (NICE, 2014)

What is this telling us?

LTNCs are a wide range of conditions which vary in severity, speed of progression, usual age of onset, and underlying cause. All LTNC will affect a person and those who care for them for all of their life from the point of the development of initial symptoms. This does not mean that people with a diagnosis of a LTNC cannot have a good quality of life. People with a LTNC and families will require specialist support as appropriate to their particular condition, the stage of their conditions, and to themselves as individuals.

LTNCs are more prevalent than a lot of people realise. 10 million people in the UK have a LTNC and they account for 19% of hospital admissions.

Secondary care data indicates that epilepsy is well managed in local primary care when compared to the national average. The proportion of people having outpatient appointments close to their home is higher than the national average.

What are the key inequalities?

We know that for some conditions that there is an increased rate of diagnosis with age and some conditions are more likely to affect a specific gender (e.g. multiple sclerosis is more likely to affect females.

People with learning disabilities are more likely to be affected by some LTNCs such as dementia.

Cerebral palsy is more likely to affect babies who are premature, whose mothers had an infection during pregnancy, or who suffer from a lack of oxygen during birth.

Stroke is more likely to affect people from certain ethnic backgrounds and people who have less healthy lifestyles.

Spina bifida is more common in children whose mothers were deficient in folic acid.

Some LTNC have proven or suspected patterns of genetic inheritance making them more common in people who have a family history of the LTNC.

There is some evidence that people from minority ethnic backgrounds find it more difficult to access neurological services (Department of Health, 2005).

What are the unmet needs/ service gaps?

Prompt diagnosis and treatment is key to improving health outcomes for people with LTNCs.

A relatively small proportion of people with LTNC requiring palliative care services are accessing them. And there is evidence of a lack of rehabilitation service provisions for people with LTNCs (Royal College of Physicians, 2008).

People with LTNCs who are admitted to hospital are often not asked if they have a care plan in place of advance decisions to refuse treatment.

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