Failing policies are failing people with epilepsy

When we founded Epilepsy Bereaved and the global SUDEP movement in 1996, I never dreamt I would be writing a blog in 2024 about a human rights scandal of the worst order.

Do read David Rose’s article, published on the Unherd website this week, about how people with epilepsy are being failed.

The National Pregnancy Prevention Programme for the drug Sodium Valproate, and now for Topiramate too – has accelerated restrictions on access to these medications, requiring already overworked epilepsy clinicians to see thousands of patients whose seizures are well controlled by these treatments. Many of these patients will be told to take different medications, which might not be so effective, increasing their risk of seizures and SUDEP.  For those who want to stay on Valproate, they’ll need the sign-off of two epilepsy specialists after a deep dive into their sexual habits and reproductive intentions. And this will be repeated every year. None of this clinical time has been funded so other patients – either waiting for a first epilepsy diagnosis or seriously ill due to seizures, will just have to wait.

For the curious, it is worth reflecting on these questions:  

• How can it be in the 21^st century that girls and women with generalised seizures (the dangerous ones) experience a hostile culture where they must wait until they are 55 before they can have a serious conversation about the benefits and harms of a life-saving medication with their doctor? 

• Why is the main national performance indicator for epilepsy across primary care and hospitals the number of Valproate prescriptions – with fewer prescriptions indicating higher performance?

• Why are men and boys now being brought into these hostile environments too?

• Why has an entire group of stakeholders been made to carry through on a policy that they believe is unsafe – and is threatening the sustainability of epilepsy services for all patients?

• Why has the UK accelerated the Pregnancy Prevention Laws in the UK when other countries follow the normal practice of informed consent and shared decision-making, ensuring patients have full information on the harms of medicines as well as the benefits?   

Every suddenly bereaved family agonises over potentially critical contributions to the death of their loved one. Sadly, we know from our work that too many are avoidable. However, a central theme that unites families in this club that no one wants to join, is that of a painful gap in specific awareness and communications relating to the risk factors of SUDEP.  Parliamentary debates and Ombudsman reports over the years have highlighted this.

If you fail to share SUDEP risks with someone with generalised epilepsy, fail to properly consider the benefits and risks of a life-saving medication (Valproate) and fail to offer life-saving medications to young people, some will be harmed and some will die from SUDEP.  Bereaved families who discover this truth after a death will have to manage the worsened trauma from false assurances and a breakdown of normal belief systems and trust. 

This is what Alison, Diane and Faye – the brave women who spoke out for Unherd continue to experience. David Rose’s article highlights all too well the true horrors that occur when the power of the state is used to positively mandate conversations about the harms of medicines (to a hypothetical unborn child) whilst choosing to ignore the balanced mandatory requirements for talking about SUDEP or indeed, informing patients about the SANAD clinical trials that found Valproate most effective for generalised seizures. 

Alison and Faye’s stories also reveal how choosing what is good for an actual unborn child when a mother is pregnant and has epilepsy is not obvious at all. A foetus exposed to generalised seizures can be harmed and if the mother dies, the unborn baby does too. In recent years there has been a near doubling of maternal deaths.

So what happens now?  We have a new government, and ministers have received letters calling on them to act. We hope others in the media will be brave and start covering medications with the SUDEP story in mind.

If you have been affected and want to share your story, or if you want to help, please get involved, email info@sudep.org.

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