A Purple Day message: from Jane Hanna OBE
For Purple Day 2023, the wonderful Knit & Chat Group – our neighbours in Wantage – have been knitting purple hearts since January so that every MP would receive a homemade heart. Thanks to the encouragement of so many SUDEP Action supporters, we are expecting many of these MPs to wear their hearts on Purple Day, Sunday 26th March. The message we sent to them with the hearts carried was a reminder that there are 21 deaths a week related to epilepsy. These deaths are mainly among young people and many are avoidable, which is why we are urging MPs to help by raising awareness on social media.
For those that want to get involved in our follow-up targeted saving lives campaign you can help hugely. Please contact Katie at [email protected] if you wish to raise funds or Vicky at [email protected] if you wish to be registered to express an interest in becoming active in our campaign plans for 2023.
It is more than two decades since The Lancet published on the National Audit of Epilepsy Deaths which found many deaths could be avoided. The editor of the day acclaimed the landmark report that showed that SUDEP was not rare in patients who weren’t seizure-free and that there was huge potential for patients to be identified and educated. Significant steps were taken nationally in the decade that followed, but many of these were cut back in 2013 and progress slowed. As a charity, we at SUDEP Action have innovated to bridge that painful gap and bring person-centred understanding of SUDEP risks via our SUDEP and Seizure Safety Checklist and EpSMon App. We have great plans for this charity year, but we urgently need more national and local systems to be inclusive of epilepsy.
Our safety tools are the only person-centred support available right now to facilitate shared conversations between patients and doctors – which in the main are focused on the most evidence-based intervention, which is anti-seizure medication. Back in 2002, we found that whilst very few people were seizure-free , 7% of people who died were not on any medication and 14% of people who died were on the wrong medication, or changing medications without proper supervision / general medicine management was poor. Today we know that the confidential enquiries that review deaths in pregnant women – and the latest inquiry into Accident & Emergency care – found that too many patients were not seizure-free and risks were not identified or communicated.
it is tiring that national efforts are not in tune with epilepsy (and indeed neurology) in strategic planning for whole-person care. Bad medicine management is not only bad for patient safety it is bad value for the public. There are deaths every year that are avoidable and we need more research for new interventions. It is truly devastating to hear thousands of experiences of suddenly bereaved families, following poor access to services, where medicine management has been poor or non-existent.
We know from good population research that we helped fund, being seizure-free is protective, reducing risk to near zero. We also know that seizure freedom is the most important way for someone to avoid the most dangerous types of seizures that carry a 27-fold increased risk of SUDEP. It can also support good mental health (another important indicator in our safety tools).
The good news is that 7 out of 10 people could be seizure-free if correctly diagnosed and offered the most effective medicines.
That is why we our main message this Purple Day is around medicines safety. I have been working intensively since before Christmas with partner charities and following Purple Day we will be making a further announcement so watch this space!
Thank you all, for spreading our purple hearts message in advance of this for Purple Day 2023.
And please encourage your MP to get behind us and wear their purple heart.