On Tuesday 12 October, Members of Parliament (MPs) raised awareness of epilepsy in parliament, by debating ‘Epilepsy in the NHS’.
The debate was proposed by Epilepsy Action’s Vice President Paul Maynard MP (Blackpool North and Cleveleys).
Paul has epilepsy himself, and opened the debate by talking about the huge differences in services in different parts of the country. He told the MPs in Westminster Hall how the quality of care he received went down when he changed from one general practitioner (GP) who understood epilepsy, to another who didn’t.
In the course of the debate, Laura Sandys MP, Chair of the All-Party Parliamentary Group on epilepsy, revealed that she too has epilepsy. This makes Laura and Paul the first two MPs to publicly declare that they have the condition.
Laura talked about the importance of epilepsy awareness in both the NHS and wider society, and spoke of the stigma that still surrounds epilepsy. She said that society created unnecessary barriers for people with epilepsy, and used the restriction on people with epilepsy climbing Big Ben as an example. She also spoke of the great improvements that have been made in her own constituency of Thanet South. Here there is an initiative to train GPs to run epilepsy clinics and provide care to people closer to their homes.
Liz Kendall MP (Leicester West) spoke for the first time in her role as a new shadow health minister. She asked the government if it has plans to increase the number of epilepsy specialist nurses.
Parliamentary Undersecretary of State for Care, Paul Burstow MP, responded on behalf of the government. He acknowledged the “many failings of the current arrangements we have for the design and delivery of epilepsy services”.
While expressing support for the National Service Framework for Long-Term Neurological Conditions and NICE clinical guidelines, the Minister argued that both documents had not been properly put into practice. He said there was “a failing, not of intent, which we share, but implementation”.
Mr Burstow stated that he was ‘very sympathetic’ to calls made in the debate for more specialists and good access to the right diagnostic equipment.
Graham Faulkner, Vice Chair of the Joint Epilepsy Council of the UK and Ireland, said: “We are delighted that such an important debate has taken place at such a crucial time of reform in the NHS. We were pleased to see so many MPs come and support Paul Maynard MP and were encouraged by what the Minister had to say. We look forward to the Minister making good on his promise to meet with Paul, the All-Party Parliamentary Group on Epilepsy and voluntary groups such as the Joint Epilepsy Council to begin to drive real change in health services for epilepsy.”
Epilepsy Action was mentioned eight times in the debate, including by the Minister, who said: “Can I congratulate the honourable gentleman [Paul Maynard MP] on his appointment as a Vice-Chair of the All Party Parliamentary Group, and as Vice President of Epilepsy Action, an organisation which really does excellent work to support and advise people with epilepsy.”
Epilepsy Action would like to thank Paul and Laura, and all those MPs who attended or spoke at the debate.
- Dr John Pugh MP (Southport) spoke, and asked whether epilepsy services would be commissioned by the new National Commissioning Board.
- Nic Dakin MP (Scunthorpe) spoke about the impact of epilepsy on a child’s education and achieving their potential.
- Owen Smith MP (Pontypridd) raised consistency of supply of anti-epileptic drugs, and asked the Government to consider changing the financial incentives for pharmaceutical companies to research and develop generic substitutes.
- Priti Patel MP (Whitham) spoke of increases in NHS bureaucracy, raised the issue of generic substitution, and argued for more research into the cause and prevention of the condition.
- David Amess MP (Southend West) raised the issue of SUDEP (Sudden Unexpected Death in Epilepsy) and suggested that epilepsy was an issue worthy of a Health Select Committee inquiry.
- Sam Gyimah MP (East Surrey) asked questions about paediatric and transition care.
- Teresa Pearce MP (Erith and Thamesmead) spoke of the importance of pre-conception counselling for women who take anti-epileptic drugs.
You can watch the debate on parliamentlive.tv. The epilepsy debate is at the start of the video, and ends at one hour 30 minutes.
The full text of the debate is available online.
Before the debate, MPs and representatives from the Joint Epilepsy Council of the UK and Ireland posed for photographs outside the House of Commons. With young people from the National Centre for Young People with Epilepsy, together they called for ‘A fair deal for epilepsy’.