On the 19th of July 2019 our local MP Judith Cummins wrote to Simon Stevens the Chief Executive Officer of NHS England on our behalf.

The reason? To address our concerns with regard to the lack of information available/provided by NHS England with regard to Sudden Unexpected Death in Epilepsy (SUDEP).

This morning we have received a reply from Professor Stephen Powiss, National Medical Director, NHS England on Mr Stevens behalf. The letter reads encouragingly with regard to epilepsy care going forward, making reference to one of many examples of several clinical leader network events hosted by the NNAG (National Neurology Advisory Group).

Also the NHS RightCare programme that has ‘developed and published intelligence tools and resources to support reduction in unwarranted variation in neurology services. This includes the upcoming publication of an Epilepsy toolkit which provides support to Clinical Commissioning Groups and Sustainability and Transformation partnerships and aims to address the main challenges facing people living with epilepsy in England Today. These include;

• High rates of misdiagnosis
• Increased mortality attributed to epilepsy, including SUDEP
• Inaccurate understanding of the true epilepsy population in England
• Lack of education and self management strategies for people with epilepsy and their families and carers in orders to reduce unnecessary/inappropriate A&E attendance’.

So this does indeed sound positive in theory albeit a ‘wordy’ letter with the phrase ‘all smoke and mirrors’ coming to mind. Since the clinical guidelines that were brought into practice in 2004 and 2014 there is still continued inconsistencies in epilepsy care plans and the current statistics in relation to Sudden Unexpected Death in Epilepsy show that something must be done now, not another several years later.

Sometimes I wonder how things become over complicated or am I being naive? Surely when it comes to SUDEP it’s as simple as the NHS making a clear directive (not a guideline), that health professionals must make patients aware of SUDEP to give people choice and autonomy where sadly for our family this was denied us. It is too late and I will never ever see or hold my beautiful son again.

I wish with everything I have that the proposed ‘positive’ intentions referred to in Mr Powiss letter are not still theoretical but immediate when it comes to practice.