Latest News

New Quality Standard N.I.C.E

Jon Shaw Foundation was part of the consultation for the new Quality Standard for Epilepsies in children, young people and adults.

 

 

Christmas Fair 18 November 23

We are looking forward to our Christmas Fair this weekend. We will be inside (too cold to be out) the White Lion on Warmingham Road Crewe. 11 until 3pm there will be craft stalls, cake stall, hot pork rolls, Tombola, and craft activity table for the kids. Santa will be there  no charge but you’ll have to pick a slot for your visit. Looking forward to getting Christmassy.

We raised £1420.41 thank you.

Would you like to be involved?

There is currently one vacancy for a trustee who will manage our data protection.

If you would like to be involved and have dome experience in the firld of GDPR please contact us with your details.

Thank you. 😊

Amazing Fundraiser hosted by Elimar Pigeon Services

We helped  the family of Evie Moores to get an Embrace 2 seizure watch earlier this year. As a “small thank you” the family did some fundraising with a huge amount of support from some pigeon flyers. They donated their racing pigeons for Evie’s great grandad to auction off through his business Elimar Pigeon Services.

We were presented with a cheque for the money raised. It was a cheque for £12,000, yes £12,000. We couldn’t express how grateful we all are. We’re going to be able to help so many young people for some time to come. Amazing! and a special thanks to Tony who’s grandson has epilepsy, he auctioned off all his pigeons and donated the proceeds to us.

Would you like to be involved?

There are currently no vacancies on the board of Trustees. However we do welcome support from volunteers at our fundraising and other events. If you would like to be involved please contact us with your details.

Thank you. 😊

Meeting with Epilepsy Team at Royal Stoke University Hospital

This afternoon I had a meeting with Dr Partridge, Consultant Neurologist and Maxine Maxwell the Specialist Epilepsy Nurse who were part of the team caring for Jon. I wanted to talk to them about things I wish had been said and/or done when Jon was Alive.
I felt we had a positive meeting and am confident that, as a result of Jon’s passing; information sharing and risk assessments have improved a lot.
Soon after he died, a meeting was held to ensure that everyone understood the need to discuss SUDEP, and that neither the nursing team or the consultant neurologists should assume that someone else has had the discussion.
Changes that have been made within their practice include-
The Consultant Neurologists discuss SUDEP on diagnosis and the nursing team reiterate and assess patients’ understanding in every clinic.
A new, “newly diagnosed” checklist has been produced which is completed with every new patient referred to Epilepsy Nurse Team.
A SUDEP risk assessment has been incorporated into the check list which covers; explaining what SUDEP is, the risks and triggers involved and all preventative measures including sleep safely pillows and a list of alarms and monitors available.
Written information is provided to support the discussion, including leaflets from Jon Shaw Foundation and a list of useful websites .
The team assess new and already established patients’ and families’ understanding of SUDEP, and review at each follow-up appointment to ensure that the risks are clear. They also discuss what preventative measures the patient/family has in place to reduce the risk of SUDEP.
Maxine also completes a SUDEP risk assessment in ante natal clinics.
This is all documented on medical notes so that everyone on the care team knows that it has been done and no-one can assume that someone else has discussed SUDEP.
As Dr Partridge said, it’s not just about telling a patient about SUDEP but about educating him / her and ensuring the information has been understood.
This all sounds very thorough and would be fantastic if shared UK Wide.
Well done to the Neurology Team at the Royal Stoke University Hospital

Meeting at Flanshaw Primary School, West Yorkshire

On 20th February I was given the opportunity to speak to children and staff about epilepsy and Jon Shaw Foundation. I was joined by Emma Pitchforth who lost her son Ollie in July last year. We were made very welcome by everyone on the day, and the children worked really hard designing things to help people with epilepsy. It was lovely to see them all researching epilepsy and talking about it using correct terminology. On Friday 24th the school held a “Wear purple day” and raised a fantastic £200 for Jon Shaw Foundation. Thank you all so much.

Charity Lunch 1 March Wilmslow

I have been invited to present Jon Shaw Foundation at a charity lunch in Wilmslow. The group have pledged a donation of £1000 to support families in the Cheshire /Stockport areas. 

Thank you. 😊 

 

  Our story in a National Magazine

We were lucky enough to have had Jons story published in Woman and Home magazine in February 2022. It was a lovely two page feature about his journey with epilepsy and what happened the morning he died. Hopefully it will encourage questions and promote awareness of the real risk of death in epilepsy