Provision of Epilepsy Services

Baroness Hussein-Ece Excerpts

Tuesday 30th November 2010 Lords Chamber

[Baroness Hussein-Ece]

My Lords, I also pay tribute to the noble Baroness, Lady Ford, on securing a debate on this important issue affecting some 500,000 people in the UK. The vast majority of epilepsy starts in childhood. Around one-third of those children will not be helped by anti-epileptic medication and will often struggle with increasing disability, learning difficulties and behavioural problems.

Epilepsy has touched my own family quite dramatically. Six years ago, a close member of my family developed epilepsy as a small child, after contracting a severe bout of chicken pox which led to the onset of difficult-to-control epilepsy and a whole host of related challenges. In our experience, it took a long time to get the correct diagnosis, as referred to by the noble Baroness, Lady Ford, with long waits for hospital appointments, tests and screening. It also took a long time to get him on the correct treatment after he did not respond to conventional medication, which consisted of aggressive and increasing levels of medication with distressing side effects. It was only after his parents continued to push for a treatment that they felt would control his seizures and give him a better quality of life that they were finally able to use the ketogenic diet. This diet has helped thousands of people over many decades. It was popular until the 1920s, but had fallen out of favour as new anti-epileptic drugs were developed.

I am grateful to the charity, Matthew’s Friends, for the briefing it sent me. Matthew’s Friends was started by Emma, the mother of 15 year-old Matthew, who developed severe epilepsy when he was just nine months old. After several years of trying innumerable medications, which did not control his epilepsy and led to serious side effects, Emma asked if her son could try the ketogenic diet, only to be told the diet did not work.

Six years later, Professor Helen Cross, who now chairs the medical board of Matthew’s Friends, began a research trial of the ketogenic diet at Great Ormond Street. Matthew was one of the cohort of children with severe epilepsy who was enrolled on to this trial. Within two weeks of starting the diet, Matthew’s seizures had reduced by 90 per cent and within eight months he was off all medication, but sadly not before suffering serious brain damage after years of seizures.

We have had a similar experience with the child in my family, whom I mentioned. His seizures have decreased dramatically, and although he still has severe learning difficulties and needs a lot of care, with the diet he has made enormous progress. It was quite transforming to see him actually making eye contact, learning to speak again and engaging instead of sitting spaced out and drooling in a corner. Where medication failed, the diet worked.

Sadly, this is not available to everybody who may need it at the moment and there are not enough trained specialist dieticians to allow for more people to have this option. Can the Minister say what is being done to ensure that people with epilepsy have access to as wide a range of suitable treatments, including this diet, as possible?

I turn to the need also for better co-ordination and training for those who have to provide an emergency response for somebody who is having a prolonged epileptic seizure. This could mean schools, hospitals and, importantly, the emergency ambulance services.

During my time as a local councillor in Islington, I chaired a scrutiny review into the tragic case of 15 year- old Kayleigh Macilwraith-Christie, who died after delays in an ambulance getting to her, and the inability of the technicians who attended to administer suitable anti-convulsant emergency medication for prolonged epileptic episode.

The London Ambulance Service conducted its own investigation into this case and gave evidence at the scrutiny review that I chaired. In its response it said:

“We have since reviewed our response protocols for patients reported to be suffering a prolonged epileptic seizure or series of seizures, and have put in place procedures to ensure that control room staff will always look to send a paramedic to the relatively small number of calls we receive to these patients every year. We are also continuing to discuss with various bodies the possibility of emergency medical technicians being able to administer anti-convulsant drugs in the future”.

Is the Minister confident that we are now able to provide a more suitable response to these emergencies and that in particular the emergency medical technicians who may attend such an emergency are able to administer anti-convulsant drugs, which three years ago was not the case? I would be very grateful if there is any further information about whether lives could be saved in these emergency situations.