Our support of the NICE guidelines for epilepsy

We are proud to inform that the Peter Doody Foundation are not only registered stakeholders and a supporting organisation of the National Institute for Health and Care Excellence (NICE) guidance for Epilepsies in children, young people and adults but also submitted comments at consultation.

Please click on the link below to find out more information and to also see the Consultation summary report (20th December 2023) in the History tab. The consultation comments table begins on page 21 and includes our individual charity comments along with the other named charities below.


A list of organisations supporting the NICE guidance, with the Peter Doody Foundation highlighted.


Thank you for bearing with us while we have been offline working on (amongst other things), our Stop Sudep Silence campaign.

Regrettably while we continue to work hard behind the scenes to promote the campaign we are still unable to process alarm and monitor applications at this time.

Going offline

On the morning of the 3rd of May 2019 our lives irrevocably changed when we found our son dead in his bed due to SUDEP (Sudden Unexpected Death in Epilepsy).

Shortly afterwards we set up the Foundation with the aim to support other young adults living with epilepsy as well as their family, friends and carers and to raise awareness not only of SUDEP but of the many obstacles and challenges that those living with epilepsy face on a day to day basis and those who care for them also face.

We are proud that to date we have supported many families and individuals with the provision of 30 seizure detection devices alerting loved ones when their child or partner are having potentially life threatening seizures to enable them to call for immediate emergency support. Something Andrew, Harry and I were never given the opportunity to do to safeguard our beloved son and brother Peter.

We have worked with Government both locally and nationally to assist with the improvement of epilepsy care and services with the greatest hope that one day epilepsy as a neurological condition is given parity in terms of research funding and service provision alongside other Neurological conditions.

There are still an estimated 21 epilepsy related deaths every week in the UK, nearly half of which are SUDEP, potentially avoidable deaths with under 20% of clinicians openly discussing SUDEP and epilepsy risks with patients.

We are approaching what will be three years since the charity was founded with the ensuing successful official registration with the Charity Commission in December 2019. During this time myself as Co-founder and Chair have committed myself daily to our foundational aims and goals but as Pete’s mum I now feel I need time away from the day to day running of the charity to grieve.  Andrew, myself and Peter’s brother Harry are also nearing the long awaited Inquest into Peter’s death which has been and still is an extremely difficult and painful process.

At our trustees meeting yesterday we took the decision, along with guidance from the Charity Commission to take The Peter Doody Foundation temporarily ‘off line’ as of the 1st April, not only for the personal reasons referred to above but to re structure and focus on the future of the charity. As of today’s date we will not be undertaking any further alarm applications to enable us to complete our present applications in time for the off line date.

We are also considering our longer term goals in relation to epilepsy research projects particularly relating to SUDEP, its causes and to help prevent deaths. We therefore encourage and ask our dear supporters to continue fundraising for the Peter Doody Foundation, in Peter’s name and as part of his legacy and be assured that although off line the continued funding and donations will be directed specifically to projects that align with our aims and objectives and not disseminated in ways that do not.

As a family, alongside our trustees and friends we will also hopefully be looking to continue to personally fundraise mainly with ‘DoodFest’ and our 21k Purple walk and look forward to seeing you then and there.

In life Peter was so courageous in living day to day with his epilepsy. He was 17 just starting out on his exciting independent journey, moving to Leeds and starting his Degree in music production. Unless you have this cruel condition yourself we can never truly understand the strength it takes to push past seizure after seizure. As his mum, I could only imagine but am forever proud of his strength and what he went on to achieve and of the kind, caring man he became.

With much love and gratitude



As of todays date the 15th February 2022, we have provided 29 people with a seizure detection device. That’s just over one device per month on average since we set up the charity in December 2019!

A huge thank you to all our fundraisers for helping to make this possible.

Joanne Doody Co Founder and Chair



We are looking for two passionate, dynamic, creative people to join us. Could you be our helping hand, shining light………

We are a small upcoming charity that support adults living with epilepsy alongside their family friends and carers.

Epilepsy is one of the most common neurological conditions in the world and there are over 600,000 people in the UK with a known diagnosis of epilepsy. That’s about 1 in 103 people. In every week over 600 people are given an epilepsy diagnosis; that’s 87 each and every day. Shockingly, there are 21 epilepsy-related deaths every week in the UK.

We provide a holistic approach in being there for our amazing and courageous young and older adults through provision of monitor equipment and well-being support. We aim to achieve this by raising awareness, providing support and reducing stigma.

We are based in the Keighley area of Bradford but offer support throughout the UK.

We are presently looking to fill two roles:

  • A social media volunteer who could help with the following:

Preparing a social media strategy and implementing it, regular posts on Facebook, Twitter and Instagram, increasing the followers’ numbers and engagement with the charity. Our aim is to raise awareness and also much needed donations. So if you have social media/digital marketing experience, please apply!

  • Volunteer Secretary To The Board of Trustees

Your role as Secretary to the Board of Trustees will be important in assisting the smooth running of the PDF Board of Trustees to lead strategy and oversight. As Secretary to the Board of Trustees, you will lead the administration for the Board, including preparing and circulating agendas and minutes of Board Meetings, Sub Committees, and the Annual General Meeting. The Secretary also provides advice and support on the governance within the organisation.

We are looking for people who can bring energy, passion and drive to help us achieve our mission and ensure the charity is effectively governed and managed.

We particularly encourage applications from people with disabilities and people from ethnic-minority groups to align with our goal of ensuring representation from the communities and people that we serve. An understanding of people living with epilepsy is desirable but not essential.

If you are interested in applying for these volunteer positions or have any further questions about the role please email info@peterdoodyfoundation.org for an application form or contact Joanne on 078865 629626 for an informal chat.

Closing date: 31st January 2022

Come and join us at our very first Classical Masquerade Ball!

We have great pleasure in inviting you to our first annual masked classical
ball at the Holiday Inn, Brighouse on Saturday the 21st of March, an event focused on unmasking the limits to epilepsy care.

Masquerade ball

The Foundation supports young adults living with epilepsy including
their families, friends and carers. There are three epilepsy related deaths
a day significantly within the age range we support. Our aims include
raising awareness of Sudden Unexpected Death in Epilepsy (SUDEP)
and to save lives.

Tickets are available individually (£45) or the option to book a table of
ten people at a discounted price (£405). Ticket price includes:

  • Prosecco reception
  • Three course meal including wine
  • Live orchestral music
  • Auction
  • Prize for best Masque
  • Raffle

With your support we hope to continue in offering much needed
emotional and practical support.

Announcing PDF Week! 3rd to 10th July

Welcome to our very first PDF Week!

Celebrating Peter’s birthday week while raising awareness and hopefully much needed funds to support our amazing young adults living with epilepsy and their family, friends and carers.

From all of us here at the Peter Doody Foundation we really hope you join us in some of our fun, exciting and informative daily events if not all!

Thank you once more for all your support 💜

Saturday 3rd July

Sunday 4th July

Click here to join the event!

Monday 5th July


Click here to join the event!

Tuesday 6th July

Wednesday 7th July

You can click here to reserve your place (please make sure you provide your email address so we can send you the Zoom link).

Thursday 8th July

Friday 9th July

Saturday 24th July


March 2021

We are proud to report that as a result of our meetings with Judith Cummings, (MP for Bradford South), Bradford District and Craven Clinical Commissioning Group are now using the ‘Right Care Toolkit’ devised by SUDEP Action, to guide their discussions and support their commissioning decisions regarding epilepsy.

Furthermore, the CCG’s Chief Officer, Helen Hirst, has also shared the above information with their providers of epilepsy care which include Airedale NHS Foundation Trust; Bradford Teaching Hospitals NHS Foundation Trust and the Ridge Medical Practice, so that they can share this with the people who use their services.

This alone will potentially save lives and prevent unnecessary deaths to SUDEP.