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.

Thank you to everyone who supported Doodfest 2019!!

What an amazing day!

Our very first epilepsy friendly music festival was a huge success and supported by so many! The event raised not only awareness around epilepsy but also money to help support young adults living with epilepsy.

If you are between the ages of 19 and 30 and you would like some support or to have a chat about how we may be able to help please do get in touch. We really do want to support you in any way we can.

Check out the official Doodfest video below!!!

Epilepsy Facts & Figures

. There are 3 epilepsy deaths each day in the UK (approximately 1200 each year)

. Epilepsy is in the TOP 10 causes of death in the young (under 35)

. Half of all epilepsy deaths are SUDEP (Sudden Unexplained Death in Epilepsy)

. Sudden death is 24 times more likely in people with epilepsy

. Under 20% of clinicians openly discuss SUDEP & epilepsy risks with patients

. 42% of epilepsy deaths are potentially avoidable

(copyright SUDEP Action 2019)

Countdown to our Masked Classical Ball!

Hi, we hope you will like to join us for an amazing fun filled evening to support our aim in supporting young adults with epilepsy, (please see our facts and figures page).

Don your finest and channel your Downton Abbey, Jane Austen or Mr Darcy persona! Fine food, wine, classical music, charity auction in the company of your friends and those you have yet to meet!

Look forward to seeing you there and thank you……

Joanne Doody

£343 raised by Olivia Dennison!

“My Mum, Ellie and I hosted a charity bake sale / coffee morning yesterday to raise awareness and money for The Peter Doody Foundation. We raised an amazing £343, more than we ever expected 💜 We want to say the biggest thank you ever to all our family, friends and neighbours that came and donated, supported and baked for us! 💜 #doitforpete

We want to say a huge thank you to everyone involved in this fundraiser, your time and generosity will help more and more young adults with epilepsy.