This 'NEWS' section starts (at the bottom of the page) in January 2018. There are however many, many tales to tell of activities and events between 2004 and 2017 and some of these are referred to in “Becky’s Story” and in passing within the following news entries. We (Roger and Sandie) continue to be amazed at the emotional, physical and financial support we receive from friends and relatives who are keen to be with us in Becky’s memory and to back SUDEP Action’s efforts to fight the curse of SUDEP.
June 2019 – Feb 2020 (New)
We (Sandie and Roger) are sharing some updates on existing and new SUDEP awareness projects that we have been involved with over the last few months. The invite to present Becky’s Story at a pharmaceutical company event came out of the blue and together with the Rotary Club talk we gave in April 2019 (see previous ‘News’ updates), has inspired us to seek other opportunities to present Becky’s Story so we can raise more awareness of SUDEP risk. We were also bowled over by the lengths Hampshire builders merchants Coomers Ltd went to raising funds and awareness during 2019 while SUDEP Action was their ‘Charity of the Year’. This has encouraged us to approach other local companies to seek their support in future years. SUDEP Action continues to work tirelessly not only with families like our own who have lost loved ones to epilepsy but also with clinicians, researchers and people with epilepsy to reduce epilepsy-related deaths. Recent projects include a collaboration with the Royal College of Pathologists leading to the publication of new guidelines in July 2019 to better support pathologists in investigating epilepsy related deaths. All the charity’s news can be followed at www.sudep.org
London 10k 2019 and 2020 (New)
With temperatures slightly lower than the previous year, our nine Team Becky runners all completed the course at the 2019 event without injury, passing many iconic London landmarks along the way. There was a real sense of pride amongst our group – not only for completing the run but also for raising awareness of SUDEP along with funds for SUDEP Action which will help support families bereaved by epilepsy as well as providing information and tools to keep life safer for people with epilepsy.
The 2020 ASICS London 10k, organised by Virgin Sport, takes place on 5th July and at the time of writing, Roger and Sandie are delighted to have 14 Team Becky runners signed up. As per the last 10 or so years that we have taken part in this event, all funds raised will go to SUDEP Action. Team Becky runners will all be doing their own fundraising for the charity and our (Sandie and Roger) Justgiving page is https://www.justgiving.com/fundraising/sandieandroger
Coomers Ltd “Charity of the Year 2019” Update (New)
In February 2018, we announced that Coomers Ltd, Builders Merchants with branches in Alton, Bordon and Haslemere, had nominated SUDEP Action as their charity of the year for 2019. It turned out to be a year of wonderful collaboration culminating with Coomers presenting a cheque to SUDEP Action in the sum of £8,835. We were delighted to receive the donation on behalf of SUDEP Action from Managing Director Grev Coomer. Events organised included a Coomers Golf Day, Halloween coffee mornings in all branches and the Nuts Challenge where ‘Team Nuts & Bolts’, comprising 10 members of staff, took part in a 10k obstacle course through water and mud. Visit https://www.coomers.co.uk/the-nuts-challenge-2019 to read about the challenge and watch a video of Team Nuts & Bolts in Action. We are indebted to Coomers and their customers for the effort and enthusiasm they put in to raising such an amazing sum for SUDEP Action and for the awareness they have helped us to raise in the community.
We are hoping to establish links with other local organisations who can help us continue to raise funds and awareness of SUDEP in future years.
Eisai Presentation (New)
In late October, Sandie received contact out of the blue from Eisai, a Japanese pharmaceutical company with headquarters in Hatfield, Hertfordshire who specialise in neurology and oncology medication. They had a last minute requirement for a speaker at their annual Human Health Care event which was due to take place on 12th November 2019 and were wondering whether we would like to present Becky’s Story. Although we hadn’t given a presentation to a drugs company for several years, we had been given the opportunity to present Becky’s story to the Rotary Club of Dalkeith in April 2019 which gave us the confidence to accept. We were made very welcome by everyone we met at Eisai and were very encouraged both by the questions raised by the 100+ audience following our presentation and by the subsequent feedback from the company. We will be keeping in touch with Eisai and hope to collaborate with them in the future as they expressed a desire to continue helping raise awareness of SUDEP risk and prevention.
SUDEP Action Coffee Club (New)
As in previous years, Sandie will be hosting a bereavement coffee club for SUDEP Action in Guildford. It will take place this year on Saturday 27th June 2020. See SUDEP Action's web page on Coffee Club Meetings to register interest in attending (or hosting)a coffee club. https://sudep.org/coffee-club-meetings
Jake Styles Update (New)
During his 2019 season with the BRSCC Mazda MX-5 Championship series, Jake Styles invited a family to attend one of his races via an auction prize at a ball raising funds for SUDEP Action. Jake will be continuing to raise awareness of SUDEP throughout the 2020 season. We wish him the very best of luck.
Damian Hinds MP (New)
At the end of January 2020, we wrote to our MP, Damian Hinds, with information about SUDEP. We included a briefing paper for MPs from SUDEP Action, which seeks the Government’s support in tackling avoidable epilepsy mortality. We have communicated with Damian Hinds several times in the past. On one occasion, we were accidentally locked inside Alton Maltings with him after an MPs Surgery appointment when the only way out was through a window followed by a clamber up a flowerbed. So we are hoping he will remember us and Becky’s story!
August 2018-May 2019
Here are some updates on our existing and new SUDEP awareness projects. Please do also visit SUDEP Action’s website at www.sudep.org for latest news on the wonderful work they do to support families like ours who have been bereaved by SUDEP and also the projects they are leading to raise awareness and reduce risk in people with epilepsy in the UK and overseas. SUDEP Action’s updates include the wonderful news that they, along with their partnership of researchers and clinicians, have recently won the British Medical Journal (BMJ) Education Team of the Year Award for the digital app ‘EPSMON’ for people with epilepsy and the SUDEP & Seizure Safety Check List, a digital tool for clinicians. Both of these are free to use and will potentially save lives. The funds we raise help pay for the development and roll out of such innovations so thank you to everyone who has supported us. It really does make such a difference.
4th May 2019 marked 15 years since we lost our beautiful Becky to SUDEP. All the fundraising and awareness we do is in Becky’s memory and is her legacy. We know she would be so proud to be part of it.
London 10k 2019
Following last year’s event where Team Becky sweltered when temperatures hit the high 20s, many of our runners, along with several new recruits, have signed up to Team Becky 2019 to take part in the ASICS London 10k which takes place on 21st July. Several of our runners have their own fundraising pages but all members of Team Becky are raising funds for SUDEP Action. Our (Roger and Sandie’s) JustGiving page is at https://www.justgiving.com/fundraising/sandra-scrivens. We are so very grateful to everyone who has sponsored us in the past and to everyone who sponsors us this year. All funds raised are used frugally and wisely by SUDEP Action as they work to reduce the unacceptable number of preventable deaths due to epilepsy. There are 21 epilepsy deaths in the UK every week and over half are due to SUDEP.
Roger has finally overcome a groin injury and we are both now training in earnest for the run. Wave if you see us pounding the streets of Alton :)
Binsted Primary School
In 2018 Tamasine Franks, one of our lovely Team Becky runners, persuaded Binsted School, where her daughter is a pupil, to hold a fun run to coincide with the London 10k. We are delighted that Headteacher Sharron Morton has agreed to hold another fun run this year with proceeds going to SUDEP Action.
Our talk at the Rotary Club of Dalkeith, Edinburgh
On holiday last year in Croatia, we met a lovely couple from Edinburgh, Anne and George. The holiday coincided with the launch of our good friends Rachel and Bharat’s crazy Tuk Tuk to Turkey venture which saw them drive a tuk tuk through 21 European countries in memory of their daughter Emily who, like Becky, was taken by SUDEP (you can read their amazing story at www.tuktuktoturkey.com). Our Tuk Tuk to Turkey T-shirts, which we wore during the holiday, led to lots of conversations about SUDEP, Becky and Emily. In November of last year, Anne contacted us with an invite to stay with them in April and whilst there, to give a talk to members of her local Rotary Club in Dalkeith. Although we have made many presentations about Becky and SUDEP in the past, we hadn’t formally presented Becky’s Story for several years. We put together a 15 minute talk about Becky, SUDEP and the work SUDEP Action is doing to reduce risk for all people with epilepsy. The talk was received very well by the 30 members present and the Club has subsequently made a generous donation to SUDEP Action. We also learnt that all Rotary Clubs hold weekly meetings and, at most of them, they have guest speakers. We are now on a mission! Thank you Anne :)Watch this space.
Coomers Ltd Charity of the Year 2019
In February 2018, we were delighted to announce that Coomers Ltd, Builders Merchants, who have branches in Alton, Bordon and Haslemere had nominated SUDEP Action as their charity of the year for 2019. We wish them well with all their fundraising activities including their charity Golf Day which takes place in September.
SUDEP Action Bereavement Coffee Club
Supporters of SUDEP Action who have been bereaved themselves have hosted bereavement coffee clubs throughout the UK since 2015. Many people find a lot of comfort meeting others who have been through a similar experience. Since 2015, Sandie has hosted bereavement coffee clubs in Guildford for anyone who has lost a loved one to epilepsy in the London and South East region. The clubs take place once or twice a year. The next Guildford meeting is scheduled for 6th July 2019.
Jake Styles - Update
Following an eventful 2018 season, Jake has again committed to raise awareness of SUDEP in memory of Becky and Ria in the 2019 BRSCC Mazda MX-5 Championship series. His car has a rebuilt engine and will be sporting new colours (yet to be revealed!) along with a plethora of SUDEP Action stickers. As last year, Jake will be taking his SUDEP awareness banner and SUDEP Action leaflets with him to each event. We wish him luck.
NICE Guideline for Suspected Neurological Conditions - Update
It seems like an age since Sandie was involved as a lay member of the National Institute for Health and Care Excellence (NICE) committee charged with producing a new guideline for non-specialist healthcare professionals in primary and secondary care covering assessment and referral of suspected neurological conditions. It was a very challenging couple of years for Sandie, some parts of which were enjoyable whilst at other times she felt like she was hitting her head against a brick wall. But the guideline was finally published on 1st May 2019 and SUDEP risk is included in two places within the guideline relating to the requirement for urgent referral if night-time seizures are suspected due to the increased risk of Sudden Unexpected Death in Epilepsy (SUDEP). For Sandie, it feels like a small victory but it wouldn’t have been achieved at all without her fighting tooth and nail so there is considerable pride in the outcome.
March – July 2018
A very active period which has seen a fantastic amount of fundraising for the charity and considerable success in raising SUDEP awareness in Becky’s memory. Updates on our current projects – click on images below to see them full size:
Sandie’s #Prevent21 GP Project - An update
As a result of the letters Sandie sent in February 2018 to 42 Hampshire GP surgeries and four Clinical Commissioning Groups (CCGs), with follow ups in April, Health Professionals in Hampshire have continued to register to use SUDEP Action’s SUDEP & Seizure Safety Checklist including three main hospitals. There is also a good chance that SUDEP training will be provided to GPs via GP training events held by the CCGs. Watch this space!
Jake Styles - An update
Jake is continuing to raise awareness of SUDEP as he takes part in the BRSCC Mazda MX-5 Championship series at various race tracks around the country including Brands Hatch, Snetterton and Silverstone. The SUDEP Action leaflets and poster of Becky and Ria, both lost to SUDEP in 2004, are gaining lots of attention and many people, whether race spectators or as part of the drivers’ support teams, have talked to Jake and Kieron about their own experiences of epilepsy and their lack of awareness of SUDEP. Jake is doing well despite suffering a few setbacks with engine problems in the early races.
Eggar’s School - An update
So much has happened at Eggar’s School since our last update. Becky’s new memorial garden is now finished and we love it. The garden has been planted with buddleia to attract butterflies and Becky’s bench has been renovated and fitted with new plaques commemorating Becky’s life with the inscription ‘Keep your face always towards the sunshine – and shadows will fall behind you’. SUDEP Action information leaflets have been sent home to 200+ Year 7 pupils who also took part in a sponsored run in Becky’s memory in June. In July, we were presented with an amazing cheque for £1,129.68 which the children raised from the run.
Binsted Primary School
Three days after the London 10k, Binsted school held a mini fun run organised by Headteacher Sharron Morton, at the instigation of Tamasine Franks who was part of our London 10k ‘Team Becky’ and whose daughter goes to Binsted school. We were asked to take part in the run which was very special as Becky spent her entire life living in the village of Binsted. In addition to the fun run, the school also shared information with parents about SUDEP and held a purple themed mufti day. As well as the awareness shared, the school raised a fantastic £134 for SUDEP Action.
London 10k 2018 - an update
On 15th July, eleven ‘Team Becky’ members bravely ran 10k through central London in blistering heat. The event was very well organised and all of our team finished, with most runners declaring that they would aim to improve their times in 2019 when temperatures will hopefully be more normal for the time of year! Funds are still coming in but it is looking like between us we will have raised a fantastic amount of money for SUDEP Action. If anyone would still like to support us, Roger and Sandie’s JustGiving page https://www.justgiving.com/fundraising/sandie-scrivens is still open.
NICE Guideline for Suspected Neurological Conditions
In 2016, Sandie took on a new and daunting challenge and joined a National Institute for Health and Care Excellence (NICE) committee as a lay member. The role of the committee was to write a new guideline for non-specialist healthcare professionals in primary and secondary care, and the public, to guide the assessment and referral of suspected neurological conditions which account for 1 in 10 GP visits. The guideline has not yet been published but Sandie made a strong case for highlighting risk of SUDEP associated with night-time seizures within ‘sleep disorders in adults and children’ and the importance of urgent referral if night-time seizures are suspected. The guideline should be published very soon so, again, watch this space!
February 2018: Jake Styles.
Jake is the son of Kieron Styles who worked with both Roger and Sandie at WS Ocean Systems Ltd during the 1980’s and 90’s. In late 2017 Kieron contacted Roger about his son Jake who would be an entrant in the BRSCC Mazda MX-5 Championship series in 2018 at the tender age of 17. As part of the contest rules, Jake would be allowed to highlight a charitable activity and he and Kieron had identified SUDEP Action as their focus. After a few meetings, Jake’s car was bedecked with SUDEP Action stickers and logos in readiness for the first round of the Championship at Brands Hatch in March. The paddock garage also played host to a banner providing general information about the Charity’s activities and explaining the link to Becky and another victim of SUDEP, Ria Garland, a neighbour of Jake’s gran in Haslemere. Jake has been very positive in his desire to raise awareness of SUDEP within the touring car fraternity and amongst his extensive circle of friends. We are most grateful to him for his positive interest and support and wish him well in this year’s championship.
February 2018: Coomers Ltd Charity of the Year 2019
Sandie and Roger’s ties with the local builders’ merchants Coomers Ltd go back many years as Becky and Lauren went to Bentley Primary School with Viv Coomer’s children and Roger and Grev Coomer’s paths have crossed on many occasions playing badminton at Alton Sports Centre. A chance conversation with Viv when Roger popped in to Coomers recently has resulted in the exciting news that SUDEP Action has been chosen as the business’s Charity of the Year for 2019.
February 2018: Eggar’s School.
Becky was in her first year at Eggar’s School, Alton when she passed away. She was enjoying herself at Eggar’s and was clearly academically bright. After her passing, her friends at the school raised funds to pay for a memorial bench inscribed with her name. During the latter part of 2017 we were contacted by Eggar’s to advise that the bench would need to be moved to make way for an extension to the school’s facilities. However, the school was most keen to find a new location for the memorial bench and to revive Becky’s story amongst the current students. The present (April 2018) plan is that the refurbished bench will be located in a new garden area where pupils can relax and reflect. Her story and awareness of SUDEP will also be recounted to tutor groups in the 2018 summer term when a fund raising event will also be undertaken and information leaflets will be provided to parents of Eggar’s pupils.
February 2018: Sandie’s #Prevent21 GP Project
Inspired by SUDEP Action’s Prevent 21 campaign, so named due to the 21,000 people in the UK with epilepsy who have died both suddenly and young over the last 21 years, Sandie wanted to do something to support the Charity’s fight against this tragic loss of lives. With the Charity’s blessing, Sandie wrote to 42 GP practices in the Hampshire area and to the Clinical Commissioning Groups (CCGs) these practices fall within. The aim was to encourage GPs to sign up to use the Charity’s ‘SUDEP and Seizure Safety Checklist’ in clinic with all of their patients who have epilepsy. In Cornwall, where the Checklist is routinely used by GPs, SUDEP deaths have fallen substantially. To date (April 2018), Sandie is very pleased with the number of GPs who have signed up for the Checklist as a direct result of her letters and is delighted that the CCGs have included information about SUDEP and the Checklist in their weekly Newsletter to GPs. Ever determined, Sandie is following up those who haven’t yet responded.
January 2018: London 10k.
It has become something of a tradition for a “Becky’s Team” to join the 15-20,000 runners competing in the London 10k run (officially the Virgin British 10k), a wonderfully inspiring challenge that crops up every July. The ‘team’ has ranged from just 3 or 4 of us right up to the 12 or 13 who will run in the 2018 event. The course is wonderful, meandering through central London (Piccadilly, Trafalgar Square, The Strand, The Embankment, Parliament Square and Whitehall) and the streets are lined with well-wishers and supporters. We (Roger and Sandie) have a joint fund raising page at https://www.justgiving.com/fundraising/sandie-scrivens where messages of support can be left.