Meeting the needs of young people with epilepsy

August 19th 2015 category Commissioning Excellence

It’s easy to overlook the number of young people living with neurological disability, so it’s great to see BBC Three’s ‘Defying the Label’ season.

The series charts the challenges that young adults with conditions like epilepsy and acquired brain injury face to do the things that most young people take for granted, like making friends, going out, learning to drive, and finding love.

‘Epilepsy and Me’ follows youngsters whose severe epilepsy means they have to be monitored 24 hours a day and limits the extent to which they can be independent. However, many young people with less severe epilepsy remain independent – but what support do they need?

Young people with neurological conditions have specific needs. If commissioners do not identify and address these needs properly then patient outcomes are worse and the costs for the NHS are invariably higher.

In our work with Primary Care Trusts in Cornwall (when we first started providing commissioning support services) we identified problems with epilepsy management - for example patients with poorly controlled seizures were not being seen any more often that those whose epilepsy was well controlled. So an important first step we suggested introducing here was to risk stratify those that need closer management to hopefully bring their seizures under better control.

This is especially important in young people with epilepsy, because there are added factors to take into account. For example in our discussions with patients we identified that some young men were stopping their anti-epileptic drugs (AEDs) at the weekend in anticipation of going out drinking, unaware of the associated risks and the importance of good seizure management.

Young women with epilepsy may also be thinking about starting a family, and it is important that they have access to pre-conception counselling so that they know about how to potentially reduce the risk of having a baby with a malformation while at the same time working towards achieving optimum seizure control.

So there are education issues to address in this particular cohort of patients, and it’s important not to forget the needs in this regard of patients with epilepsy who have learning disabilities. They or their carers need accessible information and reinforcement of seizure management messages.

Since this initial engagement with the PCTs other work streams and resources have developed. For example in Cornwall a study was undertaken by the charity SUDEP Action exploring 50 deaths between 2004 and 2012 from Sudden Unexpected Death Epilepsy (SUDEP) in the county. This work was funded by Kt’s Fund, a trust set up by the family and friends of Katie Hallat who was a children’s nursing student who died from SUDEP in 2006. The study has shown that many of the people who died in this cohort of people in the county had not been seen by a GP or specialist in the year before they died.

Further developments have been a GP checklist of questions to ask patients with epilepsy in order to help identify their level of risk from seizures. Second, is the development of a self-monitoring smartphone app – a simple tool that young people can use to help identify whether known epilepsy risk factors are increasing. The app does this by prompting an individual to do a self-assessment every three months, and will alert them if they need to seek help earlier than their next planned visit to the GP.

The app, EpSMon, was created by a team of partners based at Plymouth University, Cornwall Foundation NHS Trust, Royal Cornwall Hospital and the charity SUDEP Action. The idea is that alongside better GP monitoring for high-risk patients, between appointments all patients can identify for themselves when it is important to take action.

Crucially it is hoped that the app will help to go some way towards preventing the tragedy of sudden unexpected death in epilepsy (SUDEP) amongst young people, since investigations have identified that for many deaths caused by SUDEP the warning signs (of increased risk factors) were present but not acted upon in time.

Epilepsy Society also has a smartphone app which amongst other things (such as a seizure diary and plenty of useful information) reminds patients to take their AEDs. Such a cheap and simple measure as a reminder on a mobile phone can be crucial for ensuring young people with epilepsy adhere to their AED regimen, helping to prevent breakthrough seizures and consequent emergency admissions.

Tools and education are critical for young people with epilepsy to be empowered to self-manage their condition as much as possible. Part of this is raising awareness that patients shouldn’t accept having frequent seizures and if their seizures are not controlled then they should seek to be reviewed. I think there is too much complacency in accepting medication, when many newer therapies exist that could ensure seizure freedom. However, we do have to recognise that for some patients with learning disabilities for example it may not be realistic to achieve seizure freedom.

Some people with epilepsy choose not to change to a newer type of medication for fear of breakthrough seizures and the subsequent loss of their driving licence. That’s fine, but it’s important that young people have all the information they need to make an informed choice about the treatment they receive.

I am delighted that Cornwall has adopted such a proactive approach to keeping young epilepsy patients well and it’s important to spread information about these resources. It is an approach that recognises the importance of closer monitoring of at-risk patients, but also puts the power back in the hands of young people themselves to identify when they need extra support from clinicians. If all areas adopted this strategy, more patients would achieve seizure freedom and epilepsy services would cost less to deliver.

About the Author

Sue Thomas

Sue Thomas

Chief Executive for Commissioning Excellence
View more posts by Sue Thomas

August 19th 2015 category Commissioning Excellence

Commissioning Excellence

As one of NHS England’s recognised niche specialist commissioning support providers, we offer a full range services to assist you in improving patient outcomes. Our experience covers all long term conditions, with a particular specialism in the field of neurology.

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