Shared learning database

Type and Title of Submission


Improving the standard of service provision for people with epilepsy and learning disability in Nottinghamshire.


This example was originally submitted to demonstrate implementation of CG20 on Epilepsy. CG20 was replaced by CG137. The practice in this example remains consistent with the updated guidance.



Does the submission relate to the general implementation of all NICE guidance?


Does the submission relate to the implementation of a specific piece of NICE guidance?


Full title of NICE guidance:

CG137 - Epilepsy

Category(s) that most closely reflects the nature of the submission:

Is the submission industry-sponsored in any way?


Description of submission


Improving the standard of service provision for people with epilepsy and learning disability in Nottinghamshire.


- Introduction of a Standard of Care for people with epilepsy and learning disability who receive services in the county of Nottinghamshire from the Community Learning Disability Directorate of Nottinghamshire Healthcare NHS Trust. - Provision of comprehensive epilepsy resources for use by professional and paid carers across the county in the form of a free resource pack and accessible patient information. - Formal education and training of carers by provision of conferences training days and individual sessions and developing a robust standardised and evidence based training resource.


The development of integrated working practices in epilepsy service provision between the Neurology Directorate of Nottingham University Hospital NHS Trust and the Community Learning Disability Directorate of Nottinghamshire Healthcare NHS Trust highlighted some areas which were often detrimental to the patient's epilepsy and needed to be addressed. Many patients have formal carers and may access a variety of services such as day services, assessment and treatment, short breaks facilities etc. In addition, this group of service users are often unable to develop an understanding of their condition or to advocate for their own health needs and rely on both formal and informal carers to do this for them. These areas were: - Deficiencies in seizure recognition, reporting and recording by carers, resulting in treatment and diagnosis complexities - Poor awareness among patients and carers of local and national epilepsy services - Low expectation of treatment and management of epilepsy in people with a learning disability - Lack of knowledge of how to maximize service outcomes - Inconsistencies in the provision of emergency treatment for prolonged or serial seizures across private sector service providers - Shortcomings in the transition from children's to adult services for some people with complex health needs - No standardised structured training for carers in Nottinghamshire. Findings from a medical case note audit within the Learning Disability Directorate also highlighted a need for standardised documentation in order to improve recording and reporting of seizures, an integral part of the diagnosis and treatment of epilepsy. The above is in the context of services for people with difficult to control epilepsy who are more likely to have a high level of health need and also have conditions which add to the complexities of differential diagnosis.


- A directorate epilepsy working group agreed on the content and format of a Standard of Care document which incorporated the recommendations of the NICE epilepsy guideline. Once ratified by the Trust this was introduced during epilepsy conferences and training sessions, in the Directorate news letter, via email and visits to all unit managers. A copy of the Standard is included in the resource packs along with the NICE Quick Reference Guide. The Standard is also available as a paper copy in the policies and procedures files and on the Trust intranet. - A bid for a project worker and budget was proposed and accepted by the Community Learning Disability Directorate of the Trust. The post holder worked alongside the epilepsy specialist nurse to ensure implementation of the NICE Guideline on epilepsy. The worker produced documentation and resources and delivered training across the county. - Resource packs were developed and provided for those who attended training from private and voluntary sector establishments providing services to people with learning disabilities and epilepsy who live in Nottinghamshire. Packs were taken out to all NHS clinical areas and service leads in the Community Learning Disabilities Directorate. Key practitioners were provided with individual resources - Two NHS Trusts in the county have worked together to produce a joint patient instruction leaflet - Information on how to record and monitor seizures incorporating standardized documentation and a booklet promoting safety in epilepsy have been produced. These have been introduced in the resource packs and training sessions. Ongoing work to produce information for patients undergoing tests which will be specific to each locality is being undertaken at present.

Results and evaluation

- Work to improve the knowledge and skills of professional and paid carers has taken place across Nottinghamshire. This has taken the form of 4 free conferences (270 places) in partnership with outside agencies (a Consultant Neurologist/Epileptologist, the National Society for Epilepsy, patient representation and Epilepsy Bereaved). Also tailored training sessions have been delivered in residential settings to 14 individual groups of staff so far with more of these planned in the future - Production and dissemination of epilepsy knowledge competencies for staff working within the learning disabilities directorate has taken place to enable staff to identify training needs in order that they are equipped to support the Standard of Care - Ongoing work in developing a comprehensive teaching pack which can be used as a workbook and eventually on e learning is taking place. Evaluation: Reports from practitioners about benefits of recording Increased referral to specialist Increased knowledge improved seizure recognition and subs request for treatment. Care planning requests More staff groups willing and able to give rescue meds Requests from outside areas for training Questionnaire

Key learning points

This work was funded as a project with a designated budget and a worker over a fixed period of time. The worker had appropriate skills and knowledge to work independently with the support of the epilepsy specialist. Members of the epilepsy working group had previously been implementing recommendations as part of their regular posts individually across a large demographic area with a high number of people and locations to reach. Having a designated project worker was a positive step in that it led to a concentration and move forward with all planned activity and the ability to reach more people. Funds were specific to the project which was essential. However difficulties arise when considering this work as a project with a cut off date as it has become apparent that there is a great need to maintain momentum once the main objectives have been achieved. There is concern that this will not be possible as current services were already stretched before the project and are now under more pressure due to increased demand. A high staff turnover in many private sector areas leads to an ongoing need for training. It is not advantageous for services to achieve excellence for a short period so the momentum must be maintained.

Contact Details

Name:Jill Phillips
Job Title:Epilepsy Nurse
Organisation:Nottinghamshire Healthcare NHS Trust
Address:Department of Learning Disabilities, Highbury Hospital,
Postcode:NG6 9DR
Phone:0115 8542201
Fax:0115 8542201


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This page was last updated: 03 October 2008

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Selected, reliable information for health and social care in one place

Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.