ALARMS AND MONITORS

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

VOLUNTEER OPPORTUNITIES

Hi,

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

https://www.youtube.com/watch?v=Q4C-R52Ffy4
https://www.youtube.com/watch?v=olArThAgUd8
https://www.youtube.com/watch?v=tA-Bikjbka4

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

WHAT WE ACHIEVED THIS MONTH

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.

21Hour Sponsored Cycle

On Saturday the 30th January 2021 we will be holding our first ever 21 hour sponsored cycle challenge to raise funds to support young adults living with epilepsy and in recognition of the 21 epilepsy related deaths each week in the UK.

You can cycle indoors in the comfort of your home, at FIT 26 Gym or take in the great oudoors by going on a cycle ride. All you need to do is make sure that you and members of your team take turns to cycle continuosly for 21 hours!

You can cycle for as little or as long as you wish in a team, in a relay or register just your lovely self and we can find a slot for you.

There will be lots of fun, a chance to meet new people and get fit whilst supporting such a worthy cause.

If you would like to get involved please register your team via email: info@peterdoodyfoundation.org or call Joanne (coordinator) on 07865 629626.

You can download our sponsorship form here:

http://peterdoodyfoundation.org/wp-content/uploads/2020/11/21-hour-cycle-Sponsor-Form.docx

Donate on our just giving page https:/www.justgiving.com/crowdfunding/andre-doody

Donate via paypal https://www.paypal.com/gb/fundraiser/charity/3882213

*If donating electronically please make sure you mention “21hour cycle event” in the donation message. Thank you!

A tribute to Peter

Two of the three accompanying songs in the video are Peters own and the third is a remix of his. Proud beyond words… I love and miss you sweetheart. Eternal love Mum xxxx

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.