Epilepsy patients in the district are getting a raw deal from the health service, according to a damning report published today.

The report from Yeadon-based charity Epilepsy Action shows epilepsy is a worryingly low priority for the health service, despite numerous expert reports highlighting the need for better service provision.

The charity has drawn on the results of a survey of primary care trusts and hospital trusts across the region to expose a bleak picture for people with epilepsy. In the Bradford and Airedale district the report ‘Epilepsy in England: time for change’ highlights a number of failings against national guidelines for epilepsy services set out by the National Institute for Health and Clinical Excellence (NICE).

Bradford and Airedale Teaching Primary Care Trust (tPCT) did not disclose data on the numbers of children with the condition, leading the charity to conclude: “It is difficult to see how they can plan and procure adequate services if they do not hold such data.”

NICE guidelines state transition from paediatric to adult care should be managed smoothly by a named clinician, however, in the Bradford district such a transition service is only “in progress”.

The charity believes that in the meantime young people with epilepsy in the Bradford district are likely to fall through the cracks when it comes to adequate management of epilepsy.

The tPCT was also asked if all patients had a written care plan, in accordance with national guidelines. The trust said it was “in the process” of ensuring this was the case.

The survey also found Bradford Teaching Hosp-itals NHS Foundation Trust does not have any specialist epilepsy nurses for adults and 50 per cent of patients lack a care plan.

Baroness Ford of Cunn-inghame, Epilepsy Action’s president said: “What the report reveals about the state of epilepsy services in this country is astonishing.

“It’s time for health commissioners to start implementing NICE guidelines.

“It’s time for the government to wake up and take the lead on this issue. It’s time for people with epilepsy to stop getting such a raw deal.”

Earl Howe, chairman of the All Party Parliamentary Group on Epilepsy, said: “Uncontrolled epilepsy can have a devastating impact on the quality of life of people with epilepsy.

“Every seizure brings the risk of injury and even death and early treatment means that seizures may be reduced. The results in today’s report are deeply concerning.”

A spokesman for Bradford and Airedale Teaching Primary Care Trust (tPCT) said: “Providing epilepsy patients with the best possible care and making sure there is growing investment in the district’s epilepsy service is a priority for the tPCT.

“The needs of people with epilepsy are now being looked at as part of a new long term neurological conditions group which focuses on improving patient care in five neurological conditions – epilepsy, multiple sclerosis, motor neurone disease, acquired brain injury and Parkinson’s disease.

CASE STUDY:

A Bradford mum whose son tragically drowned after he had an epileptic fit in the bath said all epilepsy patients should be monitored on a regular basis.

Jean Hill, of Denholme, said her son John, who died in March 2001, aged 26, had been diagnosed with epilepsy at the age of 11.

“He was in the care of hospital services in Bradford and as a child he had regular appointments and his seizures, while on the tablets, were particularly well controlled,” she said. “The problems began as he became an adult.”

She said it was important people with epilepsy moving into adulthood took responsibility for their medical condition, without letting it rule their life.

“Ensure you see a professional at least once a year – whether that is a GP or if there is a specialist epilepsy in your area, you should do that, that is best practice,” said Mrs Hill, whose 32-year-old daughter also has epilepsy.

“Don’t assume that because you feel OK, you are OK. As you get older your medication may need changing. Wherever my children lived in the country, I don’t think they were ever called for a review of their medication.”

She said when her son left children’s services he was told to always make sure he got a good night’s sleep and to limit his alcohol intake to two pints of beer to help him manage the condition.

“People should find out what services are available to them and do not think you are wasting people’s time or feel afraid to speak up if you have concerns about your condition.”