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Action plan - Improving care

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:

Improving care, management and treatment of epilepsy

The audit looked at the overall quality of care received by individuals in general practice and hospitals.

In secondary care (hospitals):

  • 54 per cent of adults had inadequate care, which led to the conclusion that 39 per cent of adult deaths were considered potentially or probably avoidable. The main deficiencies identified were:
    • inadequate access to specialist care (35 per cent)
    • inadequate drug management (20 per cent)
    • lack of appropriate investigations (13 per cent)
    • no evidence of a package of care (5 per cent)
    • inadequate recording of patients’ histories (5 per cent)
    • adults with learning disabilities ‘lost’ in transfer from child to adult services (6 per cent)
    • one or more major clinical management errors (5 per cent) 


  • 77 per cent of children had inadequate care, which led to the conclusion that 59 per cent of deaths in children were potentially or probably avoidable. The main deficiencies identified were:
    • inadequate drug management (45 per cent)
    • inadequate access to specialist care (36 per cent)
    • inadequate investigations (32 per cent)

In primary care management (general practice) the main problems identified were:

  • Lack of timely access to skilled specialists.
  • Sparse evidence of structured management plans.
  • Triggers for referral were sometimes missed.
  • Professional communication failures.

Department of Health response – how we will make improvements

1. The Department of Health will:

a. In early 2003 engage with NHS and Primary Care Trusts, Strategic Health Authorities to suggest they review local epilepsy services in the light of the audit findings and address any shortfalls as part of their local delivery plans. We will refer them to the Joint Epilepsy Council’s National Statement of Good Practice, which was published in May 2002. We will also link this with the Modernisation Agency’s National Primary and Care Trust Development Team (NaTPaCT).

The JEC says:

The fact that the government is going to ‘suggest’ the Health Bodies ‘review’ their epilepsy services is a fundamental weakness of the action plan.  

There is evidence that such requests are ineffective; NHS Executive Letter, January 1996, EL(95) 120 asked commissioners and providers to work towards good practice in service delivery for their epilepsy population. A follow-up survey of Health Authorities two years later revealed little progress with a lack of commitment to develop epilepsy services (Brown et al, Seizure 1999 Apr; 8(2):128-131).

The Chief Medical Officer has recognised that epilepsy is a `special case’, ('You and Yours', 20 February 2003) because it suffers a triple jeopardy from stigma, lack of interest by clinicians and lack of interest from service managers.

It is common knowledge today that Health Authorities are struggling to meet the requirements of existing targets in health service improvement from the government, in particular in areas such as reducing waiting lists, complying with guidance from NICE etc.

We believe the Action Plan should require PCTs to review their health service provision for epilepsy and require the appointment of a named senior clinician to take responsibility for Epilepsy Services.

We welcome the acknowledgment that the JEC National Statement of Good Practice presents good example of how services should be delivered and feel Government should provide this to each PCT alongside a requirement to review.

The JEC Statement does not however take account of SUDEP and the findings in the National Audit, so we would wish to highlight the need for any review to take account of the Audit Report, most particularly risk management and SUDEP.

b. We will discuss with the Modernisation Agency a range of initiatives aimed at improving neurology services, including epilepsy. These include:

· investing £1.2 million in a two-year project to improve quality and access in neurology services starting in April 2003. The project will aim to design and deliver modern, high quality, patient focused and accessible neurology care which will benefit people with epilepsy;

The JEC says:

While we welcome any investment in Neurology Services we have not received any detail as to how this money will be spent and we feel £1.2 million pounds is wholly inadequate to improve Epilepsy Services:

We would like clarification as to how this money is to be allocated.

One of the main findings of the National Sentinel Audit was failure in clinical care for patients – see page 5 of the government’s action plan.

Government figures note 380,000 people have epilepsy. While no exact figures are available it is estimated that 8 million people have neurological conditions.

Even if the money is to be targeted at epilepsy, £1.2 million between all these people is insufficient to correct the identified and acknowledged inadequacies in care.

Investing solely in Neurology Services will also not benefit people with epilepsy with learning disabilities who tend to be treated outside neurology departments. It should be noted all the children surveyed in the audit who died had learning or other disabilities.

We believe there should be specific investment in neurologists, specialist nurses and other clinicians trained in epilepsy care and management.

We appreciate that doubling the number of epilepsy specialists in the short-term to achieve 1:100,000 population might not be possible, but there needs to be an acceleration in these posts.

In any event, epilepsy clinical networks using the skills of an expanded number of epilepsy specialist nurses and lead GPs is seen as the way forward by the epilepsy voluntary sector.

Epilepsy clinical networks are being taken forward in Scotland and under consideration in Wales.

Neurology clinical networks using neurology specialist nurses would not be acceptable.  

· asking NaTPaCT to support Primary Care Trusts in tackling this agenda; and,

The JEC says:

We welcome the suggestion to ask NaTPaCT to support primary care trusts but believe this should be a requirement not a request.

There is no detail as to what form this assistance will take.

Change will depend on engagement of GPs, which is a major challenge currently for the PCTs, and on the provision of sufficient resources.

We would want to ensure that primary care professionals were at the heart of this initiative, which would require specific incentives.  

· liaising with the neurology professional organisations and the Royal College of General Practitioners to produce a specific framework to help develop more general practitioners and nurses with a special interest in neurology.

The JEC says:

Again we welcome the stated commitment to develop more GPs and nurses with an interest in neurology but note that it is an interest in neurology that is mentioned, not epilepsy, and that further there are no funds committed to implement this.

We are concerned that there is no mention here of the role epilepsy specialist nurses.

We believe all people with epilepsy should have an annual review with their GP or a specialist and that the Action Plan should contain a commitment to ensuring this is available.  

a. We will publish the Children’s National Service Framework at the end of 2003.

i. The Disabled Child module will set generic standards aiming to improve multi-agency support for disabled children including those with epilepsy.

The JEC says:

We welcome the proposed NSF for children but have not been consulted about any specific commitment within it to improve epilepsy services.

The Audit identified a serious problem that in relation to children with learning disabilities management of their epilepsy was neglected. We question how the module will address this?  

ii. The maternity module of the NSF will ensure that general health education programmes stress the importance of contact with health services early in and throughout pregnancy and more active follow-up of women who regularly fail to attend appointments. It will include epilepsy as an example of managing a long-term condition in pregnancy. It will take into account fully recommendations in the Confidential Enquiries into Maternal Deaths in the United Kingdom: Why Mothers Die 1997-1999 which identified 9 deaths from epilepsy.

The JEC says:

We welcome the proposals in relation to the NSF Maternity Module.

The acknowledgment of the particular issues surrounding epilepsy and pregnancy is welcomed, but we would like to see detail on initiatives e.g. relating to training of professionals managing women with epilepsy in pregnancy in SUDEP and risk management.  

a. The NSF for Long-term Conditions will have a particular focus on neurological conditions, including epilepsy. Publication of the NSF is currently planned for 2004 with a 10-year implementation programme starting in 2005.

The JEC says:

We welcome the proposed NSF for Long Term conditions but cannot see how this is a response to the National Sentinel Audit as it is an ongoing initiative. The NSF will deliberately not address any condition specific issues and is to be implemented over 10 years from 2004, during which time another 4,000 preventable deaths could have occurred.  

b. The Department of Health strategy Pharmacy in the Future (2000) aims to ensure that people get quick and easy access to their medicines and high quality pharmaceutical care. We have set up a number of programmes to support this strategy which will also benefit people with epilepsy.

The JEC says:

We welcome the Pharmacy in the Future Strategy but cannot see how this is a response to the National Sentinel Audit as it is an ongoing initiative.

We do believe pharmacists can play a significant role in assisting the management of a condition like epilepsy and would welcome the opportunity to engage in the debate as to how this can be done effectively.  

i. Clinicians involved in the epilepsy audit will be invited to participate in future Medicines Management Services (MMS) Programme collaborative workshops for PCTs. This will lead to better awareness about managing epilepsy medication among GPs, pharmacists and other practice staff so that people with epilepsy are more involved in their care and get better health outcomes.

The JEC says:

We welcome the Medicines Management Services (MMS) Programme but need more detail on how clinicians will be engaged on these workshops and what profile epilepsy and SUDEP will have.

We believe that incentives will be required to encourage GPs to attend and are unclear if this has been considered.

There is no indication of what outcomes are expected from the workshops and how they will be carried forward.

Further, we are concerned that only clinicians involved in the audit will be invited to participate, given the commitment in this action plan to involving representatives from the voluntary sector we believe they too should be involved in the workshops.  

ii. The Task Force on Medicines Partnership is a two-year initiative aiming to help patients benefit from their medication by exploring how to improve partnership between patients and healthcare professionals. Over the next year we expect the Taskforce will:

  • prioritise epilepsy in its projects;
  • pilot professional development for neurologists, epilepsy specialist nurses and clinical pharmacists around shared decision making with patients in relation to medicines; and,
  • look at individual patient experience.

The JEC says:

We welcome the Task Force on Medicines Partnership

We particularly welcome the fact that the government has an expectation that epilepsy will be prioritised in this scheme, however we would submit this should be a requirement.

We believe if this scheme is effective, and suitably resourced, it could be help manage epilepsy for patients.

ii. We have established a Medicines  

Management Group to identify generic medicines management issues across the Renal, Diabetes and Long-term Conditions NSFs. It will produce guidance on the effective use of medicines by spring 2003 which will provide case studies and examples of good practice to help PCTs and Acute Trusts develop medicines management programmes.

The JEC says:

We are unclear as to the potential impact on epilepsy management of this initiative and would ask for clarification. 

a. We have commissioned the National Institute for Clinical Excellence (NICE) to look at a range of new anti-epileptic drugs for children and adults and an appraisal is due in October 2003. NICE is also developing a clinical guideline for the diagnosis, management and treatment of epilepsy which is due to be published in June 2004.

The JEC says:

We welcome the attention that is being given to epilepsy in the NICE technology appraisals but cannot comment upon the outcomes until they are available. We would anticipate that the widest range of anti-epileptic medication is made available to clinicians for people with epilepsy. In relation to the Clinical Guideline Development we anticipate that this should reflect the findings of the National Sentinel Audit. There are serious concerns about the implementation of NICE guidelines as there are many examples of extremely patchy implementation of existing NICE guidelines. The National Sentinel Audit found that existing epilepsy guidelines from 1997 were not being followed. 

Without specific ring-fenced funding to implement them, we are worried that like many previous guidelines they will be implemented inconsistently across the country.

b. We recognise that workforce recruitment, education and training issues are important if we want to improve neurology services. We have already set up a group to look at workforce and training issues for the Long-term Conditions NSF. The group will make sure we have the right workforce in place to support the NSF over its 10-year implementation period.

The JEC says:

We welcome the government’s commitment to ensuring that there is a suitable workforce in place to implement the NSF, however we are not aware of any funds to ensure this occurs.

We would also reiterate our earlier point that the NSF is non-condition specific and there are acute shortage of trained neurologists in England with specialist training in epilepsy.

Neurologists who do not have a special interest in epilepsy are not necessarily best placed to treat the condition.

The misdiagnosis rate for epilepsy is an unacceptable 20 to 40 per cent and 30 per cent of people with active epilepsy are not being treated by a specialist.

  • As a target we believe all people with a possible diagnosis of epilepsy should be seen by a specialist with an interest in epilepsy within 28 days.
  • The government’s own figures note there are approximately 372 neurologists in the UK.
  • The Association of British Neurologists calculates for the population of the UK there should be approximately 600.
  • Further there are only approximately 69 trained Paediatric Neurologists in the UK of whom only about half have an interest in epilepsy.
  • The British Paediatric Neurologists Association calculates as a minimum 150 Paediatric Neurologists are required to provide a comprehensive services, of which at least half should have an interest in epilepsy.
  • It is estimated that approximately 1,200 epilepsy specialist nurses are required compared to the current provision of approximately 150.
  • There is an acute shortage of technicians to enable the necessary EEG, MRI, CT and other investigations

a. MRI (Magnetic Resonance Imaging) and CT (Computed Tomography) scanning are not used for the primary diagnosis of epilepsy, but can play an important role when considering treatment options. Diagnostic equipment being provided through centrally funded programmes, including MRI and CT scanners, will benefit all patient groups that are imaged in each hospital, including those with epilepsy. By the end of 2004, central programmes will have provided a total of approximately 100 MRI scanners and 200 CT scanners for the NHS.

The JEC says:

We welcome the investment in diagnostic equipment although we are unclear at the moment if this is an adequate level of investment. As a target we would suggest that all people with a potential diagnosis of epilepsy should be able to have an EEG an MRI scan within 4 weeks of referral and that sufficient equipment and staffing should be provided to enable this to happen.

b. The Expert Patient: A New Approach to Disease Management for the 21st Century sets out our commitment to using people’s expertise and experience of their conditions by encouraging them to work in partnership with healthcare professionals to manage their condition. People with epilepsy can expect to benefit from this programme through, for example reduced levels of stress and anxiety and improved control of medicine taking. We will look at the feasibility of developing a disease-specific module for epilepsy in the next phase of this work.

The JEC says:

We welcome the Expert Patient programme and the suggestion of an epilepsy module but again note the programme is not a response to National Sentinel Audit findings. 


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