Epilepsy

Part of Culture, Media and Sport Committee – in the House of Commons at 4:21 pm on 26th February 2015.

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Photo of Sir David Amess Sir David Amess Conservative, Southend West 4:21 pm, 26th February 2015

The whole House was moved by the speech of my hon. Friend Steve Baker. The pain of losing a child under such circumstances is unimaginable.

My hon. Friend Laura Sandys started her speech by beating herself up because she did not feel that she had done enough to raise the profile of epilepsy. Nothing could be further from the truth. She has done a magnificent job, and she made my day with her invitation to colleagues to come up with ideas about how she should break the law as an epileptic. When she gets back to her room later, she will find that she is inundated with suggestions. I, like others, am very sorry that she has chosen not to stand in the next election. I hope to God that she is replaced by someone with the good common sense and judgment that she has shown throughout her time as a Member.

Epilepsy is a potentially life-threatening neurological condition, as other speakers have said. It affects the lives of nearly 500,000 people in England alone. It can reduce life expectancy by up to 10 years and can leave people unfit to work, as we have heard. Among other consequences, epilepsy affects children’s performance at school owing to seizures. Nearly half of the number of deaths from epilepsy can be avoided. In the constituency that I represent, there are an estimated 865 people suffering from epilepsy. This figure increases to 13,600 for the county of Essex.

What are the local CCGs doing to assist people with epilepsy in the area that I represent? I am afraid to tell the House that the answer is not enough. Clinical commissioning groups have a very important role to play. They have a strategic influence and make commissioning decisions that impact on the lives of an average of 2,370 epilepsy sufferers in each CCG area. I have recently been in contact with Epilepsy Action which—I agree with others—is doing a wonderful job in raising awareness of the problems faced by people with epilepsy. I was shocked to hear that my local Southend CCG has no plans to produce a written needs assessment of the health and social care needs of people with neurological conditions; has no plans to produce a written needs assessment of the health and social care needs of people with epilepsy; has not identified neurology or epilepsy as an improvement and saving opportunity; has not identified neurology as a priority for the local health and wellbeing board; and has not appointed a clinical lead for neurology. That is simply not good enough.

Southend West has a higher than average number of people with epilepsy, because of its high age profile. The correct ratio for specialised epilepsy nurses to patients is 1:300. The specialist nurse at Southend hospital is currently looking after more than 1,000 patients, which is absolutely ridiculous. That has to change. More specialist epilepsy nurse posts must be created before any improvements can be felt by my local residents. I fully accept that it is a country-wide problem, but it is very frustrating that most CCGs do not understand the needs of people with epilepsy.

I am in regular contact with the South East Essex Epilepsy Support Group, which is superbly led by its chairman, Mrs Diane Blake-Lawson. It is a wonderful source of information and support for epilepsy sufferers in the area I represent. I hear about all sorts of obstacles faced by people with epilepsy. Very often local residents are diagnosed and then they and their families are left without any medical guidance or support, and we heard a little about that earlier. I was particularly upset to hear that Southend hospital has on a number of occasions refused MRI scans and other medical examinations.

I have received complaints regarding the prescription of generic drugs, despite evidence suggesting that their use leads to an increased risk of seizures. Even more alarmingly, I was informed that the latest drugs are not made available to patients, as older and less effective drugs are cheaper to use. That is just not acceptable. Local residents often get caught up in a confusing situation where the hospital says that they should speak to their GPs first, but once they contact their GPs there seems to be a reluctance to give any advice and they are told to turn to neurologists instead. There is clearly a lack of GP training in epilepsy.

Nationally, only 20% of people with epilepsy who are referred to see a specialist are seen within the NICE-recommended waiting time. Even worse, there is an 18% gap in the treatment of epilepsy, meaning that 18% of people with epilepsy who could attain seizure-freedom experience seizures unnecessarily due to a lack of appropriate treatment.

I want to touch on the issue of benefits, which Mr Howarth also raised, because a number of people are adversely affected by the present situation. As we all know, the process of claiming benefits can be lengthy and stressful, which in turn can aggravate the psychological symptoms as well as the frequency and severity of seizures. What I am most concerned about is the ability of benefit medical assessors—they are rarely doctors—to recognise and appreciate the severity of epilepsy.

In conclusion, I think that there is a role for the Government to play. We need more funds to be invested in medical research to ensure that more people with epilepsy can access effective treatments. Southend residents suffering from epilepsy should not be denied access to the various treatment I mentioned earlier. For too long epilepsy has been forgotten when it comes to funding and the variety of treatments available. It is time for the Government to hold CCGs to account to ensure that due gravity is given to this very serious condition. As my hon. Friend the Member for South Thanet passes the baton to Valerie Vaz, I hope that in the next Parliament, whoever forms the next Government, we will do our very best to provide the best possible treatment for those who suffer from epilepsy.