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Long term neurological conditions

Long term neurological conditions

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 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 there 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 people 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 LTNCs are wide-ranging and vary both between and within conditions. This means that people with LTNCs 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. 

Prevalence

Long term neurological conditions (LTNCs) are more common than most people (including health professionals realise with 10 million people living with a LTNC in the UK.

 

25 percent of people between the ages of 16 and 64 with a chronic disability have a neurological condition and 33 percent of disabled people in residential care have neurological condition. Read the long term neurological conditions PDF good practice guide on the Multiple Sclerosis website.

 

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. Read the review of the incidence and prevalence of long-term neurological conditions in the UK on the National Center for Biotechnology Information website for more details.

 

Living with long term neurological conditions

The average time between diagnosis of a LTNC (long term neurological condition) and death varies greatly from months (e.g. motor neurone disease) to decades (e.g. multiple sclerosis.) Read the national service framework for long term conditions on the Gov.uk website.

 

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 long term neurological condition 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. Read the national service framework for long term conditions on the Gov.uk website for more details. There is a lack of rehabilitation service provisions for people with LTNCs. Read the long term neurological conditions guidelines on the Royal College of Physicians website.

 

There is some evidence that people from minority ethnic backgrounds find it more difficult to access neurological services. Read the national service framework for long term conditions on the Gov.uk website for more details.

 

63 percent of people responding to a survey about peoples with LTNCs experience of hospital admissions were not asked if they had a care plan or advance decisions to refuse treatment. 25 percent felt that they were rarely listened to by staff during their admission. 13.2 percent were readmitted within 4 weeks with a problem which related to their original admissions. Read the 2009 neurological conditions survey on the multiple sclerosis website for more details.

  

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 percent of people seen in an inpatient setting; 31.9 percent seen in a day care setting; 17.4 percent seen in a community care setting; 8.8 percent of people seen in a hospital support setting; and 11 percent of people seen in an outpatient setting. 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. 

 

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 of data collection. Read the MDS 2013-14 survey on the National Council for Palliative Care website for more details.

Long term neurological conditions fact and figures graphs

There is no one source of data which will allow us to see the number of people living with LTNCs in the local area. Key sources of information which we can use as a best guide are nationally researched prevalence rates such as those in Table 1 (above.) Read the Commissioning for Value Pack on Neurology on the Right Care website. 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. Read the neurology profiles on the Public Health website.

 

Data is presented at the level of Clinical Commissioning Group (CCG.) For Wokingham, this is Wokingham CCG. Some data is shown for all LTNCs and others for specific diagnoses.

 

Read the Table showing incidences of long term neurological conditions (PDF document.)

 

All long term health conditions

The first chart, above, 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+, taking into consideration that the CCG has low rates of emergency admissions for most conditions. It can be seen that admission rates for people registered with the local CCG are lower than the national average. 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 being well managed in local primary care reducing the need for hospital admission.

 

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 higher than the national average.

 

The percentage of all outpatient neurology consultant and nursing appointments that are provided close to the patient’s home in the local area are much lower than what is seen nationally It is worth mentioning that most of our outpatients go to Royal Berkshire Hospital in Reading as this is the nearest DGH.

 

Epilepsy

769 people aged 18 and over who are registered with Wokingham CCG are recorded as having a diagnosis of epilepsy. This is a rate of 629 people per 100,000 which is lower than the England average of 780 people per 100,000. 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 Wokingham CCG 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 CCG being seizure free for a 12 month period than 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 151 people from the CCG are admitted to hospital as an emergency for this reason each year. This is rate of 130 per 100,000 which is a much lower rate than the national average.

 

Motor neurone disease

Around 10 people from the CCG are admitted to hospital as an emergency admission each year – a rate of around 10 per 100,000. Numbers are too small to say that this is higher or lower than the England average.

 

Multiple sclerosis

Around 60 people from the CCG are admitted to hospital each year. Rates are similar to the England average.

Parkinson’s disease

Around 150 people from the CCG are admitted to hospital each year. This is a rate of 150 per 100,000 which is higher than 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+. Around 35 per 100,000 people from the local area are admitted for this reason each year. 

The National Service Framework for Long-term Conditions (PDF document) on the Gov.uk website 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 and 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 guidance on the Royal College of Physicians website 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

 

Read the long term neurological conditions: a good practice guide to the development of the multidisciplinary team and the value of the specialist nurse (PDF document) on the Multiple sclerosis website. 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.

 

Useful websites and documents

Long Term Health Conditions (LTHCs) 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 doesn't 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 percent of hospital admissions.

 

Secondary care data indicates that most LTNCs are  been well managed in local primary care resulting in fewer emergency admissions for LTNCs. The possible exception to this relates to emergency admissions with a mention of Parkinson’s which is higher than the England average.

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 Long term Health Conditions (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. Read the National Service Framework for Long-term Conditions (PDF document) on the Gov.uk website for more details.

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

 

Although a pocket of good practice is available, Social Care may need to improve the knowledge and the understanding neurological conditions complexity and morbidity and consider that when assessing the needs and setting the care plan provided to services users.

 

Identifying a GP Neurological Conditions Specific Lead may facilitate the necessary and effective referrals. Read the Service mapping overview (PDF document) on the Thames Valley Strategic Clinical Network website.

 

Recommendations

Recommendations for consideration by other key organisations such as: CCG’s, General Practices, Local Authority department e.g housing and other providers.

 

Staff supporting individuals with Neurological Long Term Conditions needs to be adequately trained to have the sufficient knowledge of the complexity and the specific needs of the services users.

 

Identifying a GP Neurological Conditions Specific Lead may facilitate the necessary and effective referrals. Read the Service mapping overview (PDF document) on the Thames Valley Strategic Clinical Network website for more details.