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An Open Letter to Michael McGimpsey MLA, Northern Ireland Minister for Health, Social Services and Public Safety

16 Jun 2009

Mr Michael McGimpsey MLA
Northern Ireland Minister for Health, Social Services and Public Safety
Room C5.10
Castle Buildings
Stormont Estate
Belfast
BT4 3SQ

Tuesday 16 June 2009

Open letter re: BBC Newsline (11/06/09)

Dear Mr McGimpsey,

I am writing in response to your BBC Newsline interview on Thursday 11 June about epilepsy services in Northern Ireland. I wondered if you would be able to clarify a couple of details which were raised in the programme.

Services

In this television interview, you said;

“We have a very good service within Northern Ireland. We have access to internationally renowned centre at Great Ormond Street in London, and anything that’s available in Chicago, as I understand it, is available through Great Ormond Street.”

However on the basis of the evidence available to us at Epilepsy Action, it is very hard to accept the description of epilepsy services in Northern Ireland being ‘very good’.

Using childhood epilepsy as a case-in-point, we believe there are approximately 1,600 children in Northern Ireland diagnosed with epilepsy.

Based on the advice of our clinical advisory panel, we believe this caseload would require 14 clinical sessions per week working full time on epilepsy. This is the equivalent of nearly two paediatric neurologists with a special interest in epilepsy.

Northern Ireland has the lowest number of neurologists per person, not just the UK but the whole of Western Europe. Currently Northern Ireland has no paediatric neurologists with a special interest in epilepsy, although we believe one is due to start work in September. Will the new appointee be working full time on epilepsy?

In turn, to support this level of service, four full-time paediatric epilepsy specialist nurses would be required. There is only one paediatric epilepsy specialist nurse currently in post, in Antrim. She has been in post since January, and previously there was no paediatric epilepsy specialist nurse for several years.

Will you please take steps to ensure there is an adequate workforce of epilepsy specialists within Northern Ireland to provide a ‘very good epilepsy service’?

Pathway

In the same interview you state that,

“Normally, children with epilepsy will see a paediatrician in a local acute hospital.”

However, this is not the care pathway advised by NICE Clinical Guideline (20). Under ‘Key priorities for implementation’ it states,

“All individuals with a recent onset suspected seizure should be seen urgently by a specialist” (p6).

A specialist for children is defined as a paediatrician with training and expertise in epilepsy.

Epilepsy is a complex condition that cannot be diagnosed with a simple blood test or other tool. It relies on the experience of a specialist clinician to take a case history and use diagnostic tests to make a proper diagnosis.

A general paediatrician does not have the expertise to diagnose epilepsy accurately.

With the best healthcare, 70 per cent of children with epilepsy can be seizure free. However in reality, the number who achieve this is far lower, with some research suggesting it could be as low as 30 per cent. Further between 20 and 30 per cent of people with epilepsy are misdiagnosed and do not have epilepsy. The National Sentinel Audit of epilepsy related deaths in 2002 found that up to 59 per cent of children’s deaths were possibly or probably avoidable. All these problems stem from non-epilepsy specialists diagnosing and treating the condition.

New funding

Are you in a position to tell us in greater detail how the £220,000 annual funding for paediatric neurology services (announced on January 26 2009) will be used; and where the 3 Tesla MRI scanner will be located?

You also announced that extra dieticians will be trained to help children who are undertaking the ketogenic diet. What arrangements are being made for this?

NICE Guidelines

The Department of Health, Social Services and Public Health has previously indicated that NICE guidelines should apply in Northern Ireland. We believe, if applied, the NICE guidelines for epilepsy would put in place a good standard of epilepsy service for all people in Northern Ireland. Is your department committed to delivering epilepsy care in line with the NICE epilepsies guidelines?

Minister, when will the 1,600 children with epilepsy in Northern Ireland be taken more seriously, moved up the policy agenda, and really see the “very good service” they deserve?

I wonder if it would be possible to meet with you, to discuss epilepsy services in Northern Ireland, for both children and adults.

Yours sincerely,

Simon Wigglesworth
Deputy Chief Executive

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