Documents

1. NICE Clinical Guidelines

Clinical Guidelines and Evidence Review for the Epilepsies: diagnosis and management in adults and children in primary and secondary care

These are the current core standards. Implementation ensures that the care provided is based on the best available evidence of clinical and cost effectiveness.

Also from NICE:

2. How to use NICE guidance to commission high-quality services

This ‘How to’ guide outlines how NICE guidance supports the commissioning of high quality services, and describes how the guidance can be used throughout the commissioning cycle. It also describes the support available from NICE and how using NICE guidance can support the achievement of world class commissioning competencies.

3. Wasted money, wasted lives

This report summarises the information gathered during the course of the All Party Parliamentary Group on Epilepsy Inquiry held during 2007.

4. Time for change: A study of epilepsy service provision in England

This study set out to understand more about the current state of local epilepsy service provision in England. It highlighted the variation in provision across the country, the lack of specialist clinicians and waiting lists longer than the recommendations made by the NICE guidelines.

5. NHS Comparators

This is a national resource providing data on activity, costs and outcomes for commissioners and providers.

6. NHS Evidence

NHS Evidence provides access to 34 specialist collections which cover a wide range of common medical conditions, topics and health populations, and which were formerly part of the National Library for Health. Collections can be searched individually, or searches can be made across more than one collection at the same time, or users can browse by topic.

7. Guidance and competences for the provision of services using practitioners with special interests (PwSIs) Epilepsy

This document describes different models of care and provides information about the competences, training, accreditation and assessment processes to support the accreditation of PwSIs in epilepsy. For commissioners this should be read ion conjunction with World Class Commissioning Assurance Framework and associated competencies.

8. World Class Services for people with long term conditions – information tool for commissioners

The main aim of this document is to share a common vision of what a good service looks like for people of all ages with long term conditions, their carers and families. It provides some practical suggestions for commissioners to help them achieve that vision. It sets out some appropriate actions for commissioners to consider at each stage of the commissioning cycle to support implementation of personalised care planning and self care support for people with long term conditions.

9. Improving the health and wellbeing of people with learning disabilities

This document is designed to help PCTs, working with local government and Learning Disability Partnership Boards, to commission all health services, including primary care, community health services, mental health and acute care, in ways that are more responsive to – and provide better health outcomes for – people with learning disabilities.

People with learning disabilities have higher levels of ill-health and much higher rates of premature death than the population as a whole. It is estimated that people with learning disabilities are 58 times more likely to die prematurely. People with learning disabilities have higher rates of obesity, coronary heart disease, respiratory disease, hearing impairment, dementia, osteoporosis and epilepsy. Some 26% of people with learning disabilities are admitted to hospital each year.

10. Health Needs Assessment for Long Term Neurological Conditions in North East England

This health needs assessment provides a regional profile based on the best possible data as a basis for understanding the demand for neurological services. It describes a local approach to data collection for one condition. This might be replicable in other areas and for other conditions.

11. Long Term Neurological Conditions: A good practice guide to the development of the multidisciplinary team and the value of the specialist nurse

This guide is aimed at commissioners and providers of services for people with long term neurological conditions to help them offer the right service, delivered by an appropriate workforce, to meet the needs of this vulnerable group of patients. It outlines why services for neurological conditions are important, demonstrates the value of the multidisciplinary team (MDT) and clarifies the contribution of specialist nurses.

  • Download the report (PDF) Multiple Sclerosis Society, Epilepsy Action, the Parkinson’s Disease Society, the Royal College of Nursing and the Department of Health, 2009

12. Identifying and monitoring the cost-effectiveness of the Epilepsy Specialist Nurse

A presentation on this research was given at the conference by Professor Irvine. The transcript is available in the conference report and slides from her presentation are available separately.

13. Capturing the essence and demonstrating the value of the clinical nurse specialist

This report presents evidence of the impact of clinical nurse specialists for rheumatology and makes several recommendations for investing in specialist nurse in all areas of practice

14. Death by indifference

This report is about institutional discrimination within the NHS, and why people with a learning disability get worse healthcare than non-disabled people. It presents the stories of six people who may have died unnecessarily.

15. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities

The Disability Discrimination Act and Mental Capacity Act set out a clear legal framework for the delivery of equal treatment and yet, for a variety of reasons, including the way society behaves towards them, adults and children with learning disabilities, especially those with severe disability and the most complex needs have significantly worse health than others. This report sets out evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment and makes ten recommendations to secure good quality services.

  • Download the report (PDF) Sir Jonathan Michael and the Independent Inquiry into Access to Healthcare for People with Learning Disabilities, 2008

16. The Better Futures Campaign

This sets out the objectives for the campaign and describes 10 levers which will improve services for children and young people with epilepsy. The objective of the National Centre for Young People with Epilepsy’s ‘Better Futures Campaign’ is to improve education, health and other services for children and young people with epilepsy across the UK.

  • Visit the website National Centre for Young People with Epilepsy’s Champions for Childhood Epilepsy Campaign

17. Avoidable Epilepsy-Related Deaths: A briefing for commissioners of epilepsy services

This document gives information and suggested priorities for commissioners in order to prevent avoidable deaths and to support families so affected. The recommendations from the NICE guidelines are that as well as having a care plan or management plan, everyone should have information about the risk of SUDEP. For those who are bereaved through SUDEP there should be a letter of condolence, an invitation to meet with the family and signposting to the support available from the voluntary sector.

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