A letter to the NHS

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.

4 thoughts on “A letter to the NHS”

  1. It still amazes, no horrified me that the many occurances of SUDEP are quickly forgotten. There are spikes of activity when a death occurs but always confined to the immediate locality. Since our sons death in June I have worked so hard to make people aware, the story of my son reached as far as Birmingham local newspapers and then nothing. Why is it the battle of the grieving families to make this change? I have heard recently the matter addressed in Parliament, my MP herself has been proactive in her support and yet still medical staff, clinicians, nurses and support staff know little of SUDEP. It is too late for us also, my boy was 19 when he was taken, 19! He was a baby and we weren’t given the best chance of making a difference to the outcomes we continue the fight for others who do not yet know the risk and I hope to God they never find out as we did. Time to join the dots.

    • Hi Wendy,

      Thank you for commenting and like Matthew, I also apologise for missing this. Change will happen Wendy……it just has to.

      I think of you often and your beautiful Jon.

      Jo x

  2. I was diagnosed in April 2010 at the age of 30. I’m currently a serving Police Officer but this condition is one that haunts me on a daily basis. There is alot of stigma out there about the condition and I feel educating people about it would stem this.

    • Dear Matthew,

      Firstly my sincere apologies for missing your much appreciated comment. We are in the ‘tweeking’ stages of our website and clearly I have inadvertently not come across yours and Wendys comments until now.

      I can only ever imagine how it feels emotionally and physically to have a diagnosis of epilepsy. I have understandings, emotions, thoughts from being the mum of Peter and experiences with his epilepsy but can never truly comprehend living with epilepsy.

      What I DO know however is that with everything that I have and until MY last breath, I will dedicate to supporting young adults with epilepsy and their families, friends and carers. One of the things I am presently doing is working with local parliament to get change in NICE policy guidelines regarding awareness, solid and understandable care plans for patients and very importantly provision in holistic care for example well-being support.

      As our foundation refers to, we are a community here to provide support also but as I am realising/wondering, young adults are a difficult demographic to reach and myself and the team here so want to support if and in anyway we can. Please let us know if we can help.

      Thanks again for responding Matthew.

      Jo x

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