We exist to improve the lives
of everyone affected by epilepsy

Campaigning for a Sapphire Nurse - Official guidelines

Official guidelines

Listed below are extracts from official guidelines including the NICE Guidelines (2004). These may be quoted in the business plan in order to add weight to the reasons for employing a Sapphire Nurse.

Department of Health
Health and Social Care Standards and Planning Framework
2005/06-2007/08

Supporting People with Long-Term Conditions

Research evidence indicates that a targeted approach and more effective management in the community can prevent inappropriate admissions, cut lengths of stay in hospital, and improve patient experiences and outcomes.

Many people with long-term conditions can manage their conditions well most of the time, with access to support in primary care and systematic and tailored disease management programmes when appropriate. There are some people (often those with more than one condition) whose needs are more complex, who require more proactive support with a key worker co-ordinating services.

Patients with complex long-term conditions will be supported by community matrons,
and by 2008 every PCT will be offering these services. 

Extracts from a letter to NHS Trust Chief executives, PCT Professional Executive Committee Chairs, Strategic Health Authority Chief Executives from the Chief Medical Officer, Sir Liam Donaldson, May 2003.

The National Clinical Audit of Epilepsy-related Death (May 2002) identified that there were deficiencies in the overall quality of epilepsy care in general practice and hospitals, on a range of issues. (54 per cent of adults and 77 per cent of children, received inadequate care, and 42 per cent of epilepsy deaths annually were potentially avoidable)

Ideas for improving epilepsy services include the development of more epilepsy nurse specialists supporting clinical teams.

Extracts from the SIGN Guideline No. 70, Diagnosis and management of epilepsy in adults, Quick Reference Guide. April 2003

Epilepsy specialist nurses are considered to be such a valuable resource for primary care that the SIGN guidelines recommend that all epilepsy care teams should include an epilepsy specialist nurse.

Extracts from the SIGN Guideline No. 81, Diagnosis and management of epilepsies in children and young people, Quick Reference Guide. March 2005.

Models of care

Children with epilepsy should have access to specialist epilepsy services, including dedicated young people and transition clinics.

Each epilepsy team should include paediatric epilepsy nurse specialists.

Extracts from the NICE Clinical Guideline 20, The epilepsies: diagnosis and management of the epilepsies in adults in primary and secondary care, Quick reference guide. October 2004.

Key priorities for implementation.

All individuals with epilepsy should have a regular structured review. At the review, individuals should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services, including surgery as appropriate.

Treatment and care.

Epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy. Their key roles are to support both epilepsy specialists and generalists, ensure access to community and multi-agency services, and provide information, training and support to the individual, families and carers.

Regular structured review
At the review, ensure access to:

  • Information
  • Counselling services
  • Epilepsy specialist nurses
  • Timely and appropriate investigations
  • Referral to tertiary care (including surgery) where appropriate

Extracts from the NICE Clinical Guideline 20, The epilepsies: diagnosis and management of the epilepsies in children and young people in primary and secondary care, Quick reference guide. October 2004.

Key priorities for implementation

All children with epilepsy should have a regular structured review. At the review, children with epilepsy (and/or their family and/or carers, as appropriate) should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services, including surgery as appropriate.

Treatment and care

Epilepsy specialist nurses should be an integral part of the network of care of children with epilepsy. Their key roles are to support both epilepsy specialists and generalists, ensure access to community and multi-agency services, and provide information, training and support to the child, their family and/or carers.

Regular structured review
At the review, ensure access to:

  • Information
  • Counselling services
  • Epilepsy specialist nurses
  • Timely and appropriate investigations
  • Referral to tertiary care (including surgery) where appropriate

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