The voices of people affected by epilepsy lie at the heart of valproate safety research
A ground-breaking research study on valproate is being undertaken by The Walton Centre and University of Liverpool. This research is driven by patient voices to understand what matters most to patients taking valproate and considering a switch in treatment.
Sodium valproate is one of the most effective treatments for epilepsy. It has been around since the 1960s and it is taken by millions of people around the world. However, it has some concerning side effects to consider. For women taking valproate during pregnancy, it is very well established that it can harm the unborn child. There are new concerns that valproate may also affect fertility or impact the children of men taking it. However, the evidence behind this is not well established. Nevertheless, there are new regulations restricting use of valproate in young men and women.
The study is called 'An international study to investigate and optimise the safety of discontinuing valproate in young men and women with epilepsy'. It involves analysing large amounts of anonymised patient data from 2014-2024 to determine whether discontinuing valproate is harmful for young men and women. It will also explore whether there are safe alternatives to switch to from valproate. This will generate evidence that empowers patients considering a switch from valproate to make a safe decision about which alternative to choose. This should also support GPs and clinicians with guidance on switching medications.
The study is led by Consultant Neurologist Dr Gashirai Mbizvo. He has sought the help of people with lived experience of epilepsy and their carers to help direct him on how to tailor the study to the needs of those affected by epilepsy.
Patient Lead Naheed Tahir got involved because her son has epilepsy and has friends and family that have been cared for by The Walton Centre. She said: “The Walton Centre has been an amazing support for my friends and family over the years. I saw they were looking for people to get involved in the research the centre was doing, and I thought it would be a way to contribute to their services. We hold focus groups and sessions where thoughts are gathered on a range of neurological subjects - from services and medication, to access and support and more. The work we do feeds directly into the research. Dr Mbizvo values our input and it grounds the study in reality.”
Patient Lead Alan Griffiths has a close relationship with The Walton Centre too, as his son has epilepsy, and Alan himself was treated for a brain tumour. He said: “Since my son turned 21, he's been looked after excellently by The Walton Centre, then it was my turn a couple of years ago. I had been a patient lead on some other research the hospital was doing, and it was then that Dr Mbizvo approached me to help with the valproate toolkit study. I think it's incredibly important to help with research. It's a way to give back, but it's also a way to help future patients and services. I believe it's about doing whatever you can to help improve patient care and push the frontier of treatment options.”
Dr Mbizvo asserts that: “It would be impossible to conduct thorough, and useful research without patient and carer involvement. Naheed and Alan bring a wealth of experience and knowledge with them, and that feeds into the conclusions we make. This then creates a toolkit that is patient-centred, that will enable doctors looking after people with epilepsy to support them in making the right treatment decisions in managing their condition.”
The study is funded by the Epilepsy Research Institute - a charity for people affected by epilepsy. If you would like to learn more about research at The Walton Centre, go to https://www.thewaltoncentre.nhs.uk/research
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Notes to editors
Further information, or to arrange an interview, please contact the Communications Team at The Walton Centre on 0151 556 3397 or wcft.communications@nhs.net
The Walton Centre NHS Foundation Trust is the only hospital trust in the UK specialising in neurology, neurosurgery and pain services. Although the majority of patients come from Merseyside, Cheshire, North Wales, Lancashire and the Isle of Man, for some specialist treatments of complex disorders we see patients from all parts of the country, referred by their GPs or other neurologists, neurosurgeons and pain clinicians.
The Walton Centre NHS Foundation Trust was rated as 'Outstanding' by the Care Quality Commission. The independent regulator of all health and social care services in England published its rating on Friday 21 October 2016, following announced and unannounced inspection visits to the Trust in April 2016.
For more information please visit: www.thewaltoncentre.nhs.uk or follow the Trust on Twitter, Facebook or Instagram.
The Walton Centre NHS Foundation Trust, Lower Lane, Fazakerley, Liverpool L9 7LJ
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