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Summary

Adults :: Long term neurological conditions :: Summary

A long term neurological condition (LTNC) results from disease of, injury or damage to the body's nervous system. Many LTNCs severely affect quality of life and cause lifelong disability, with a range of co-morbidities that affect patients, carers and family members. This places a considerable burden on the health and social care sector.

LTNCs affect individuals, families and carers in many different ways, physically, psychologically and socially. Many LTNCs severely affect quality of life and cause lifelong disability. People can experience a range of co-morbidities such as depression and anxiety, physical or motor problems, sensory problems, cognitive/behavioural problems, and communication problems.[1][2][3]

Exclusions and relevance to existing work


• Migraine is the most common neurological complaint. Its management has been addressed by the outpatient improvement programme at Medway Foundation Trust (MFT) so it has not been considered in detail in this work.
• Acquired brain injury (ABI) has not been considered in detail, nor has stroke been included, on the advice of the CCG.
• Specialist in-patient neuro–rehab has been a CCG focus since 2012, centred mainly on facilities and number of in-patient beds required for this function. For this reason it has not been considered in detail here.

Key issues and gaps


• Specialist nurses and multi–disciplinary teams — Specialist nurses (SN) are felt to be important in ensuring continuity of care. There is a lack of consistency nationally in the provision of SN support and the way in which services are designed around them. NICE recommends that every patient with epilepsy should have access to an ESN. There is only one ESN clinic a week in Medway at present.
• Transition — Managing child to adult transition is an issue for both health and social care services. Transition is common for conditions such as epilepsy, which affects both children and adults, and increasingly for conditions such as Duchenne Muscular Dystrophy (DMD), for which medical advances have meant that more children are surviving into adulthood.
• Palliative care — specialist palliative care services are needed for patients with advanced Parkinson's disease and the rapidly progressive 'Parkinson-Plus' syndromes (MSA and PSP). Their needs are similar in nature and severity to people with terminal cancer yet much of the burden of care of this group tends to fall on informal care givers. Motor Neurone Disease is such that serious patient episodes often occur outside of normal GP practice hours, and where out of hours services are unable to provide an acceptable level of care, the result is unnecessary and expensive hospital admissions, underlining the importance of appropriate specialist palliative care.

Recommendations for commissioning


• Develop a strategy for neurology that is jointly owned and developed by health services, social care and relevant third sector organisations
• Improve community neuro–rehab to meet the on-going needs of people with LTNCs
• Improve management of epilepsy through provision of epilepsy specialist nurse(s)
• Provide appropriate emotional and psychological support to people with LTNCs
• Establish arrangements for secure on-going provision of palliative and pre-palliative care


References

[1]   Shather Z. Commissioning Neurology Services in Richmond 2013; Unpublished.
[2]   Pittam G, Haywood D. Health Needs Assessment for long term neurological conditions. A report for Oxfordshire PCT 2010; Oxfordshire PCT. http://mycouncil.oxfordshire.gov.uk/documents/s2460/JHO_MAY2010R07.pdf .
[3]   Department of Health. National Service Framework for Long Term Conditions 2005; Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/198114/National_Service_Framework_for_Long_Term_Conditions.pdf .