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Published 29th January 2025

National medicines system must prioritise those at risk of sudden death

By Jane Hanna OBE, SUDEP Action Director of Policy & Influencing

Last week, we submitted evidence to the All-Party Parliamentary Group on Pharmacy – calling for the Government to act fast to prioritise people with epilepsy and others at risk of sudden death. With two Coroners recently raising red flags that deaths in young people were avoidable, we have submitted evidence brought together by SUDEP Action over the last seven years.

This includes the warning we gave to the previous government in 2018 that people with epilepsy were especially vulnerable to dying if not treated because of problems accessing medication. This is the first line of defence against sudden fatality and seven out of ten people with epilepsy should be seizure-free with medication. Access to medication at the right time is critical to preventing worsening seizures.

We also shared the stark knowledge that there are at least 21 deaths per week from epilepsy and 80% of these are avoidable with optimal care.

Back in 2018, we called for, and briefed, a Parliamentary debate which helped secure a judicial review that went to the Court of Appeal. The government of the day singled out epilepsy and other selected conditions for special treatment in the lead-up to Brexit and created central stockpiles of medicines, which were protected for a time. We kept the pressure up on those in power during the pandemic with unique research in partnership with Oxford University which found patients were experiencing serious problems accessing medicines.

It is painful to know that we, as a charity, are currently supporting so many bereaved families whose children have died because of lack of access to life-saving medication.

Our recent story about the death of Charlie Marriage comes just weeks after the death of David Crompton – both men could not get their prescribed medication.  Whilst we have a significant problem of medicines shortages in the UK, there is also something deeply cultural which is contributing to these deaths.  With Charlie’s death – why did no one in the NHS signpost his right to an emergency supply of medication from any pharmacy?  In David’s case, why would any pharmacy think it’s OK to leave a note on his doorstep?

The ignorance of overlooking epilepsy as a condition that can be suddenly life- threatening is the same theme that underpins the experiences of too many of our families.

The stories of Emma and Megan are other stark examples. No one today who needs life-saving medication should be denied it. Epilepsy is not being properly recognised as a potentially life-threatening condition. Our Epilepsy Deaths Register shows us far too many families are still left in the dark about the risk of sudden death.

We have researched medicines shortages not just in the UK, but internationally, and have listened to evidence on the vast impact of medicines shortages on the NHS in local areas. This includes details about the huge administrative workloads placed on clinicians and pharmacists, who are having to spend too much of their time chasing up medicines rather than seeing patients. The impact on families of this is distressing and costly.  At SUDEP Action we know it can be catastrophic.

That is why our submission to the All-Party Parliamentary Group on Pharmacy calls for:

  • A National framework for epilepsy to be treated as a ‘cliff-edge condition’, where a failure to supply medicines or the denial of life-saving medication could lead to sudden death.  
  • Action on the recommendations from the Coronial learnings from death reports.
  • Information and training on medicines to include SUDEP and epilepsy risk.
  • Stockpiling to recommence.
  • The shipping and distribution of ‘medications for cliff-edge conditions’ to be protected with national support for workforce shortages in wholesale and distribution. Support should also protect against delays in the general shipment of commercial goods.
  • A UK national policy that makes the UK a more attractive market for supply so that we do all we can to build up the manufacturing of medicines.  

For reference and further reading, also see:

Lives Cut Short report  

Pressure on party leaders to fix medicine shortages

SUDEP Action’s Epilepsy Deaths Register

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