Beckysstory.com

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.

NEWS UPDATE AUGUST 2022 – AUGUST 2023

It has been a year since this News page was last updated. During that time, Covid restrictions have all but gone but the effects of the pandemic and high inflation rates affect everyone’s finances, not least small charities like SUDEP Action who don’t receive any Government support. The work SUDEP Action undertake is as important as ever, particularly as neurology and epilepsy services were badly hit by the pandemic with a resultant tragic increase in epilepsy-related deaths. It is good to see supporters able to restart fundraisers and we are happy that we have been able to continue both fundraising and the ever important raising of awareness of SUDEP risk.

UK EPILEPSY PRIORITY SETTING PARTNERSHIP WORKSHOP AUGUST 2022 (New)

The UK PSP was a national consensus over 18 months to collate the views of the entire UK epilepsy community. The information gathered was used to “identify and prioritise 25 areas of healthcare that can be improved by research and result in higher quality studies and increased investment in research into epilepsy”. I (Sandie) felt very privileged to be one of 26 people selected to take part in a one day workshop in August last year tasked with putting the questions into order of priority. It was an amazing experience being able to represent the epilepsy-bereaved community. The question “What are the causes and contributing factors of epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and how can these deaths be prevented?” was one of the topics being debated throughout the day. My personal mission was to ensure it moved into the Top 10. We worked in groups throughout the day coming together to see how our discussions had affected the priority order. It was good to see the ‘SUDEP question’ moving up through the ranks throughout the day and more than I could have dared to wish for to see it at Number One at the close of the workshop! For too many years, SUDEP has not been seen as a research priority. Hopefully this will now change.

TROPIC CHRISTMAS FUNDRAISER – NOVEMBER 2022 (New)

As well as becoming a good friend since we met online during a SUDEP Action fundraiser in 2020, Hazel Eatwell continues to be a great friend and supporter of SUDEP Action. Hazel hosted an online Tropic e-party in Becky’s memory in November raising a fabulous £235 for SUDEP Action. Hazel has also very generously provided me with Tropic goodies throughout the year towards my own fundraising projects.

SUDEP ACTION COFFEE CLUB – JUNE 2023 (New)

On 24th June, we hosted our annual SUDEP Action bereavement coffee club in Guildford. 16 people attended, many driving long distances to have the opportunity to meet up with others who had suffered a similar loss. The time went very quickly and it was clear to see the benefits of being able to meet others who instantly understood each other’s loss. We will continue to host these coffee clubs for as long as we feel they are helping other families in the way meeting others has helped us over the years since we lost Becky.

ASICS LONDON 10K 2023 – 9th JULY 2023 (New)

We have entered a ‘Team Becky’ in various different guises into the London 10k for the last 13 years raising awareness and funds for SUDEP Action. We decided that this would be our last sponsored run and that it is time for some creative thinking for future fundraising (watch this space!). Various rail strikes didn’t prevent our intrepid five from reaching the start line and running the 10k course through the centre of London with two additional ‘Team Becky’ runners taking part locally in Binsted. The event was fully subscribed, the weather was perfect and it was a wonderful opportunity to enjoy the run while reflecting on our ‘Team Becky’ achievements over the years. Between us, we raised just shy of £2,000. Many thanks to everyone who has sponsored ‘Team Becky’ this year and in previous years. Our JustGiving page https://www.justgiving.com/fundraising/SandieandRoger is still open for donations.

PORTERS NEWSAGENTS COLLECTION POT (New)

Alton based Porters’ have been raising money for SUDEP Action in Becky’s memory since the start of the Covid pandemic in July 2020. To date, the collection pot has raised an amazing £2,450! We can’t thank them and their generous customers enough.

SUDEP ACTION CONFERENCE (New)

The SUDEP Action National Conferences offer a chance to hear what the charity have been working on and to meet the team and ask questions. Like the bereavement coffee clubs, they also provide a valuable opportunity for people to meet others who have suffered a similar loss face to face. Due to Covid restrictions, the last SUDEP Action annual conference was held in 2019. Unlike previous years when the conference has taken place over two days, the 2023 conference will be a one day event taking place in Leamington Spa on 11th November.

SUDEP ACTION NEWS (New)

SUDEP Action started out its life as ‘Epilepsy Bereaved’ in 1995, a charity set up by Jane Hanna, Sheila Pring, Catherine Brookes, Jennifer Preston and Sue Kelk to challenge the belief that it wasn’t possible to die suddenly and unexpectedly from epilepsy. Jane’s partner Alan (Sheila’s son) died suddenly in 1990 aged 27. Catherine, Jennifer and Sue had also each unexpectedly lost a child with epilepsy in their early twenties. Due to the tireless work of these five ladies, it is now accepted worldwide that Sudden Unexpected Death in Epilepsy (SUDEP) is a cause of death for inclusion on death certificates. In 2013 the charity changed their working name to SUDEP Action as the term ‘SUDEP’ was by then commonly accepted. Additionally the charity had worked with researchers to come up with the definition of SUDEP and is a global leader on the topic.

After leading the charity tirelessly for decades, Jane Hanna stepped down as CEO from 31st July this year. She felt that in what would have been her former partner Alan’s 60th birthday year, the time was right to step back and allow her and her family a better work/life balance. Jane is not leaving the charity and from the autumn will take on the new role of Director of Policy & Influencing. Sammy Ashby who has worked alongside Jane as her Deputy has taken over the Chief Executive role. Tracy Cowdry will act as Sammy’s Deputy in addition to her role as Bereavement Services Manager. Katie Vale has been promoted to Fundraising Manager. SUDEP Action has also recently welcomed a new team member, Hannah Shilling as Digital Communications Officer.

We have every confidence that this wonderful charity will continue to go from strength to strength, providing information and raising awareness of SUDEP to prevent unexpected deaths, sponsoring research and supporting bereaved families.

NEWS UPDATE APRIL 2022 – JULY 2022

Fundraising and raising awareness of SUDEP continues to be challenging for the Charity and supporters alike. The pandemic and continuing high levels of Covid have prevented SUDEP Action from organising their annual conferences and biennial memorial service which are sorely missed by bereaved families, not least by those who have lost loved ones during the pandemic. We (Roger and Sandie) are as determined as ever to do all we can to support SUDEP Action and raise funds to help them support all families bereaved by epilepsy.

ASICS LONDON 10K 2022

We made it! Nine Team Becky runners got up very early on 10th July and made their way to London on one of the hottest days of the year. Five other Team Becky runners also got up very early to take part remotely before the day got too hot – 4 in Yorkshire where they were on holiday and one in Dorset where she was visiting family. It was too hot to attempt personal bests and we were all just focused on getting from the start to the finish with stops at hydration stations and water sprays along the route. We were so happy to have Becky’s best friend Emily run with us this year. The atmosphere in London was fabulous with live music throughout. Katie from SUDEP Action came to support us along the route and all weary SUDEP Action runners gathered in Trafalgar Square after the run to meet her and swap stories. Despite the heat, we were all happy to finish free of any injuries and pleased to have taken part. Unfortunately, one of our regular runners couldn’t run due to covid which also played a part in interrupting training for many of us.

Fundraising this year was more difficult than ever as everyone is feeling the squeeze. We are incredibly grateful to everyone who has sponsored us this year and in previous years.

Our (Sandie and Roger’s) fundraising page is still open for donations:

https://www.justgiving.com/fundraising/sandieandrogerscrivens

If you are reading this and fancy taking part in a future London 10k and are happy to raise some funds and awareness in exchange for a place in next year’s event, please do contact Katie at SUDEP Action for details. The run really is suitable for competitive runners and novices alike. Many Team Becky runners train for the event through the Couch to 5k app.

SUDEP ACTION COFFEE CLUB – 2nd JULY 2022

Every year since 2015, Sandie has hosted coffee clubs in Guildford for anyone who has been affected by SUDEP, initially supported by daughter Lauren and subsequently by Roger. The planned 2019 club was sadly cancelled due to Covid. We were finally able to book our venue and start again at the beginning of July this year. The coffee clubs provide an invaluable opportunity for people bereaved by epilepsy to meet others who have suffered a similar loss. For some, it is the first time they have met anyone who has been through a similar devastating loss, particularly with the SUDEP Action conferences not having been able to take place during the pandemic. For others, it is a chance to meet once a year and talk about their loss with similarly bereaved friends made in the saddest of circumstances in a safe environment.

A number of people contacted SUDEP Action disappointed that they couldn’t make the July coffee club so Sandie is looking at hosting another later in the year, possibly in November.

PORTERS NEWSAGENTS COLLECTION POT

Porters continue to astound us by regularly handing Roger a full Charity collection pot. Wendy is always happy to chat to customers about Becky and our exploits to raise funds and awareness of SUDEP and it seems their customers are happy to continue filling our collection pot. To date, Porters and their customers have raised an amazing £1616.25 in Becky’s memory and we understand the pot is almost full again!

NEWS UPDATE AUGUST 2021 – MARCH 2022

Nobody could have predicted over two years ago that the COVID pandemic would continue to make charity fundraising so very difficult. In the best of times, it is very hard to raise awareness and funds when epilepsy and bereavement are involved. Throw COVID into the mix and the challenge reaches whole new levels.

We have continued to do what we can to support SUDEP Action and help them prevent other families from suffering the devastating and life changing loss of a loved one to SUDEP. Our beautiful daughter Becky ‘forever 11 ¾’ would have been celebrating her 30th birthday on 4th August this year.

ASICS LONDON 10K 2022

Despite Roger almost putting away his London 10k running shoes due to an unexpected health issue in 2021, he is now back on track and we will both be running the ASICS London 10k on 10th July. To date we already have 11 ‘Team Becky’ runners signed up to take part in London and another 4 taking part virtually from their holiday cottage. We are sure our team numbers will continue to increase before the run. Roger and Sandie’s JustGiving page can be found at https://www.justgiving.com/fundraising/sandieandrogerscrivens and all donations will be gratefully appreciated by us and by SUDEP Action.

PORTERS NEWSAGENTS COLLECTION POT

Wow! Since Porters first put a collection pot on their counter at the start of the pandemic, they have raised an amazing £1,380 (as at 1 March) for SUDEP Action in Becky’s memory. We are so grateful to Porters, and especially to Wendy, for continuing to share Becky’s story with their customers and for the fantastic total raised by their very generous customers.

HAZEL’S CHRISTMAS 2021 TROPIC FUNDRAISER

Following the success of her previous Tropic skincare fundraisers for SUDEP Action, ‘Tropic Ambassador’ Hazel Eatwell offered to host a SUDEP Action Tropic Christmas Fundraiser in Becky’s memory in November. The online event was a huge success raising a further £462. As well as her fabulous fundraising, Hazel has raised a lot of awareness of SUDEP and has also become a firm friend.

RHS WISLEY MEMORIAL BENCH

During 2021, we were delighted to have the opportunity to sponsor a bench in Becky’s memory in the Wildlife Garden at the new Hilltop Science Centre at RHS Wisley. A plaque on the bench is inscribed with Becky’s name and the words “No garden truly blooms until butterflies have danced upon it”. The bench and its location are stunning. We love visiting Becky’s bench and quietly remembering our beautiful daughter. It is always special when friends share photo’s with us that they have taken when visiting Becky’s bench.

NEWS UPDATE AUGUST 2020 – JULY 2021

Fundraising and awareness continued to present many challenges throughout the last months of 2020 and well into 2021 as the COVID pandemic kept much of the UK, and indeed most of the world, in limbo. Like many other UK charities, SUDEP Action received no government support as, although health care for people with epilepsy was adversely affected, epilepsy was not included in the government’s list of charities that qualified for financial support. For obvious reasons, many events planned by supporters to raise funds for SUDEP Action were cancelled, or at best postponed. We have carried on doing what we can to help this amazing charity who not only support bereaved families like ours but also work to prevent other families from going through a similar devastating and potentially preventable loss.

ASICS LONDON 10K 2021 (New)

After the success of our Virtual London 10k last July, there was immense enthusiasm among our Team Becky runners to join us again in 2021 with the hope that the event would actually take place in London. Friends who were not runners signed up to the NHS ‘Couch to 5k’ podcasts and in turn signed up to join Team Becky. On 25th July, we (Sandie and Roger) were among 11 Team Becky runners who got up in the early hours and made our way to London. We had completed and submitted negative coronavirus tests the previous day and followed strict rules set by the run organisers to keep us all covid-safe including staggered start times. Unlike the days running up to the event, the weather was cool with grey skies (perfect running conditions) but with heavy storms forecast. The atmosphere was wonderful and all of our runners completed the course. We even stayed dry which was amazing as nearby parts of London were severely flooded. We also had runners taking part locally and although we were two ‘men down’ through injury or illness, Team Becky 2021 comprised 16 members. We are incredibly proud of all our runners past and present and are so thankful to them for their support in memory of our beautiful Becky.

Our fundraising page is still open for donations: Sandra Scrivens is fundraising for SUDEP Action (justgiving.com)

PORTERS NEWSAGENTS (New)

The previously mentioned SUDEP Action collection pot remains on the counter at Porters Newsagents and thanks to the generosity of the people of Alton, has now raised just under an incredible £900. We are so grateful to all at Porters, especially Wendy who has shared Becky’s story with many customers and who is totally confident that the £1,000 mark will be achieved shortly.

HAZEL’S TROPIC FUNDRAISER (New)

In late 2020, I (Sandie) met the lovely Hazel Eatwell who was hosting an online Tropic Skincare fundraiser for SUDEP Action. Hazel very kindly offered to host a similar event for me over the May 2021 Bank Holiday weekend. We invited friends to take part and Hazel very generously donated all of her commission from the event to SUDEP Action. As well as being great fun, the event raised a massive £532 for SUDEP Action!

NEWS UPDATE AUGUST 2020 – JULY 2021

ASICS LONDON 10K 2021 (New)

Our fundraising page is still open for donations: Sandra Scrivens is fundraising for SUDEP Action (justgiving.com)

PORTERS NEWSAGENTS (New)

HAZEL’S TROPIC FUNDRAISER (New)

Sandie and Roger

COVID-19 NEWS UPDATE APRIL – JULY 2020

Fundraising and awareness throughout lockdown has proved challenging but we have persevered and our efforts have paid off. We (Roger and Sandie) are sharing details of our efforts below which have only been possible due to the continued support we receive from friends, family, local businesses and many who never even knew Becky but have been moved by her story to support us and SUDEP Action.

VIRTUAL LONDON 10K JULY 2020

In April, following the inevitable cancellation of the ASICS London 10k, we took the decision to continue our training in the hope that COVID rules would allow us to run in our home town of Alton, Hampshire. We were delighted that our 14 fellow runners were still keen to join us and we set about planning a local 10k route. Unfortunately, one of our team had to withdraw following an injury. But with the addition of a former Team Becky member whose travel plans had been cancelled and a request from Louise, a primary school friend of Becky’s (who has run for GB no less) to run with us, we ended up with 17 runners and one dog. We (Roger and Sandie) and six of our team completed a 10k route through Alton while the remaining nine members of Team Becky ran in such diverse locations as Binsted, Bordon, Brecon and Chelmsford. We were supported on the day by wonderful friends who turned up early to see the Alton team off, took photographs throughout the run and provided water and chocolate when we crossed the finishing line. As well as being a speedy runner, Louise is also a keen baker and had made us a delicious cake. We are so very grateful to all of our runners and everyone who sponsored us. Our Virtual London 10k raised over £4,000 for SUDEP Action.

PORTERS NEWSAGENTS JULY 2020

The wonderful staff at Porters Newsagents in Alton, especially Wendy, have had a collection pot for SUDEP Action on their counter throughout lockdown. To date (July 2020) they have collected a fantastic £200 in Becky’s memory.

JAYS VIRTUAL PUB QUIZ JUNE 2020

Early on in lockdown, Jay Flynn, a former pub landlord, set up a weekly online quiz for friends. It went viral and very quickly gained a Guinness World Record for the most people taking part in a quiz at any one time with 182,513 households joining in on 30th April. Jay decided to continue weekly quizzes indefinitely with money raised being shared with various charities. Having taken part from the start, Sandie contacted Jay to share Becky’s story and SUDEP Action was one of several nominated charities during June. This resulted in SUDEP Action receiving a fantastic £900 donation from Jays Virtual Pub Quiz.

Roger and Sandie

SPECIAL COVID-19 NEWS UPDATE APRIL 2020

In ‘normal times’, we wouldn’t be updating our News Page so soon but these are by no means ‘normal times’. Little more than two months ago, we were excited to share, via a News Update, the positivity of the previous few months and our enthusiasm to build on that with more awareness talks to local businesses, pharmaceutical companies, social groups and anyone who was prepared to listen to us. We had engaged with our local MP, Damian Hinds, who subsequently pledged to both us and SUDEP Action that he would continue to do what he could to support us. Sandie had organised a SUDEP Action Coffee Club for families bereaved by epilepsy to get together in June to support each other, a very important part of the grieving process. Our ‘Team Becky’ recruitment for the London 10k in July was at an all time high and we had 14 enthusiastic fellow runners signed up and in training. Within weeks of that last update, COVID-19 happened and the world changed for us all. We, like many, many others, have more than willingly contributed to the various NHS Charities appeals to support the wonderful work everyone associated with the NHS is doing. Our SUDEP awareness talks are, of course, on hold for the foreseeable future, all Coffee Clubs have had to be postponed and, last weekend, we were notified as expected that the London 10k due to take place on 5th July has been cancelled (please read on for more news on this).

Like many other people, our initial concerns over how SUDEP Action and other small charities would cope with their income stream, which is effectively from fundraising events organised by bereaved families, effectively switched off. Our relief when the Government announced support for charities turned to dismay when we found out that SUDEP Action will not benefit as epilepsy is not on the COVID-19 list and SUDEP Action is a ‘small national charity’. SUDEP Action have continued to operate throughout the lockdown and the team has made a voluntary 25% contribution of their wages to help them carry on their wonderful work. The charity continues to provide bereavement support, counselling, help with understanding the inquest process, information and resources to newly bereaved families and to those of us who have been on this journey for longer. They are also providing free safety tools to clinicians and people with epilepsy and continue to collaborate with UK and International research teams to help prevent epilepsy deaths.

While this dreadful pandemic continues, there will still be lives lost to epilepsy. Half of the 21 epilepsy-related deaths every week in the UK are potentially preventable. We are determined that we will continue to do all we can to support SUDEP Action in their efforts to reduce these preventable deaths throughout this crisis and beyond.

Team Becky are now training for a ‘Virtual London’ 10k. Only the location will change and we are currently working on a local route where social distancing can be observed. We and SUDEP Action would be so grateful for all donations which are needed now more than ever. Our JustGiving page can be found at https://www.justgiving.com/fundraising/sandieandroger

Roger and Sandie

June 2019 – Feb 2020

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

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

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

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

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

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

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.

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.