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of everyone affected by epilepsy

Action plan - Information provision

February 2003

You can read the Department of Health's Action Plan below, with comments by Epilepsy Action and the Joint Epilepsy Council are in the boxes:

Information provision

The audit found deficiencies in communication between health care professionals, patients, their carers and families. There was little evidence that epilepsy management and hazards such as the risk of death had been discussed with patients, their families and carers by any health care professional in primary or secondary care.

Department of Health – how we will make improvements

1. The Department of Health recognises that working in partnership to improve epilepsy services depends on the provision of good quality information for service users and their families, health and social care professionals and the public. We will improve the provision of information by:

a. Working with the epilepsy voluntary organisations to produce a patient information leaflet on epilepsy, which will address the need to improve awareness, particularly around managing risks of the condition. We will provide resources for this work in the next financial year (2003/04).

The JEC says:

We welcome the commitment to provide funding for information provision, however are surprised that the government feel there is a shortfall of literature available, except perhaps in languages other than English.

A Risk Management Leaflet was produced by the JEC in response to the National Sentinel Audit.

The principal issue is not a lack of information about the condition but about clinicians making this available to their patients and discussing the implications with them.

We would welcome the opportunity to discuss with the government funding for dissemination of information leaflets.

We believe the government should be requiring clinicians to provide appropriate information to their patients as part of the consultation process and funding the production and dissemination of an adequate quantity of such leaflets. 

b. Providing £288,600 Section 64 funding over the next three years to the National Society for Epilepsy (NSE) to expand its Epilepsy Information Network. This will provide improved information and support to epilepsy patients and their families, a key need identified in the audit. The NSE will work closely with other epilepsy charities to develop this strand of work. This is in addition to the £122,000 Section 64 grant awarded in 2002 which supports the NSE’s Living Well Project. This provides locally-based, short-term courses for people with epilepsy to promote self-help and self-management techniques so that they can take control of their lives in spite of their epilepsy.

The JEC says:

We welcome the award of the Section 64 grant and will endeavour to work with the NSE and other charities to ensure this is used as effectively as possible –.

The audit found a lack of communication about risk including SUDEP and therefore we reiterate our concerns above that there needs to be improved communication from clinicians about risk  

c. Suggesting that NHS Direct Online review and update the epilepsy information in its Health Encyclopaedia regularly. We will also consider possible links to other websites targeted at specific groups of people with epilepsy, e.g. those with learning disability.

The JEC says:

We welcome the suggestion to NHS Direct Online but would be surprised if this were not the case at present.  

a. Taking advantage of a NHS Direct Online and Medicines Partnership Taskforce project improving medicines information for patients. This will result in the development of clearer information on medicines for conditions including epilepsy.

The JEC says:

We welcome the suggestion to NHS Direct Online.  

b. Implementing the copying letters to patients initiative which is a key recommendation in paragraph 10.3 of the NHS Plan. This is about giving people more information about the treatment that is being planned for them. It will help improve the quality of the patient and clinician relationship by improving communications between them. We are proposing to issue guidelines, including a toolkit, in spring 2003. Full implementation is expected by April 2004.

The JEC says:

We welcome the initiative, but note it is not a response to the National Sentinel Audit. 

c. Engaging with the Royal Colleges to raise awareness of the audit, particularly highlighting the issue of informing patients about epilepsy management and the risks associated with their condition.

The JEC says:

We welcome the initiative to engage with the Royal Colleges, although there is no detail as to what form this may take and in what way the government will ensure this results in action to improve management of epilepsy.  

1. The epilepsy voluntary organisations have an important role to play in providing information and support.

The JEC says:

We welcome the recognition of the role of the voluntary organisations and the financial support some have received.

However, we do not believe that the role of voluntary organisations should be a substitute for effective delivery by the Health Service in the area of information provision and support.

The voluntary organisations have grown up over the years to fill the void left by the inadequacies within the health service.

The voluntary sector did offer to monitor the outcomes of the Action Plan and are disappointed that the government rejected the bid for funding by the JEC to undertake this work.  


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