June 2015

sad
Ashley Jolly
❤
Sudden Adult Death Trust
SADS UK
HELP SAVE LIVES
June 2015
SADS UK NEWSLETTER
Sensitive Hearts
The Big Shock Campaign placing Defibrillators in Schools
Making Schools Heartsafe
❤
SADS UK bring about Dept for Education Guidelines
to include Automated External Defibrillators in Schools
❤
SADS UK National Heart to Heart Conference and
Annual National Lifesaver Defibrillator Awards
Royal College of Nursing, Cavendish Square, London
Saturday 17th October 2015
❤
The Warning Signs Campaign
SADS UK, Suite 6 Churchill House, Horndon Park, Station Road,
West Horndon, Essex, CM13 3XD
Tel: 01277 811215
e-mail: [email protected] Web: www.sadsuk.org
Any opinion or statement by the author of any article does not necessarily represent the opinion of SADS UK or its committee. SADS UK reserves
the right to edit articles. The primary purpose of this publication is for general information and is not to be used as medical advice, diagnosis or
treatment. Tick and return, together with your address, if you no longer wish to receive the newsletter
Registered in England and Wales No. 5679989.
Registered Office: 22 Rowhedge, Brentwood, Essex CM13 2TS Reg. Charity No. 1113681
❤
CHAIRMAN’S MESSAGE
In February 2014 SADS UK met with policymakers at the Department for Education and
provided evidence for defibrillators to be made available in all schools. In April 2014 The
Department for Education provided guidance to schools re. defibrillators, explaining:sudden cardiac arrest is when the heart stops beating and can happen to people at any
A defibrillator is a machine used to give an
electric shock to restart a patient’s heart when
they are in cardiac arrest. Modern
defibrillators are easy to use, inexpensive and
safe. Schools are advised to consider
purchasing a defibrillator as part of their first
aid equipment. If schools install a defibrillator
for general use they should notify the local
NHS ambulance service of its location. Staff
members appointed as first aiders should be
trained in the use of CPR and may wish to
promote these techniques more widely in the
school, amongst both teachers and pupils
alike.
A lot of media interest ensued, newspapers
radio and TV and SADS UK have been
delighted by the support they have received
from schools who now want to put
defibrillators on their premises. This is a great
Anne Jolly BACP
step forward to protecting our young people
Accr. Counsellor
at school. These days schools are used not
only during school hours, but either side of that for childrens’ clubs and for the
community and a lot of time is spent on school premises.
I was pleased to be invited to speak at the College of Paramedics National Conference
about the SADS UK Big Shock Campaign and the new policy guidance. The icing on the
cake was to receive a letter from eminent cardiologist and leading light in emergency
care Professor Douglas Chamberlain, praising the work that SADS UK has undertaken to
achieve this. He was delighted to see that the Department for Education has now issued
guidance to schools.
Essential new staff and representatives have joined SADS UK this year to help with
the unprecedented workload that has come about in the latter months of 2014 in
anticipation of the busy year ahead; they introduce themselves in the newsletter.
SADS UK was delighted last year when the charity’s patron Dr Hilary Jones (Good
Morning Britain, health advisor and doctor) presented lifesaver awards to deserving
winners. If any further evidence was needed to show how defibrillators in schools save
lives, the SADS UK Lifesaver Awards didn’t disappoint! Two teenage boys who went into
cardiac arrest last year were saved by staff using CPR and defibrillators that had been
put in place in their schools.
SADS UK believes all schools must seriously consider the possible consequences of not
having a lifesaving defibrillator on their premises and the charity continues to urge
Government to legislate to make defibrillators compulsory in all schools.
2
The SADS UK, London Ambulance Service and Saving Londoners Lives school
defibrillator Campaign is building momentum, as are other SADS UK defibrillator
initiatives nationwide.
A range of defibrillator cabinets for inside use and for outside Community Public Access
use are also available from SADS UK. They are mounted in a prominent position with
signage to ensure that everyone is aware of where the defibrillator is kept in a building
or in the community.
SADS UK received a letter in response to our plea to make defibrillators mandatory in
all schools. The Rt Hon. David Laws MP, Minister of State for Schools says he recognises
our concerns. Along with SADS UK they are encouraging schools to put a defibrillator in
place as part of their first-aid equipment. Read more in the ‘Defibrillators in Schools
Campaign’ in the newsletter.
The charity continues to support the BHF and Resuscitation Council (UK) initiative to
teach CPR and lifesaving skills in schools as part of the core curriculum in school; this is
absolutely essential and will save many lives in the future.
We are pleased to report that the 2014 SADS UK Heart to Heart Conference was a
resounding success with over 90 attendees, including SADS UK members, doctors,
nurses and paramedics participating. The Royal College of Nursing accredited the
conference and awarded 7 study points, which meant that attendees learnt a lot about
SADS and were able to evidence this in their Continuing Professional Development
portfolio as well as apply it to their practice.
The SADS UK National Heart to Heart Conference 2015 will take place at the Royal
College of Nursing, Cavendish Square, London on Saturday 17th October 2015, put the
date in your diaries.
Thank you for the tremendous support you give the charity, together we are preventing
premature sudden death and saving more lives in the community.
It is with great sadness that I let our members and supporters know that Barrie Irons
sadly died last year after a battle with cancer. Along with his wife Brenda, he was a
fantastic ambassador for SADS UK and I know many of our readers will have spoken
with Barrie. He will be sorely missed by many people. Our thoughts are with his wife
Brenda and all his family and there is a heartfelt tribute to Barrie Irons in this newsletter.
The newsletter shows a spectrum of the work that SADS UK and our charity members
support. If you have an article you’d like included please send it to us. It may be that
your article is on file in readiness for printing in the next edition.
Keep SADS UK up to date when you change your email address. We like to keep
members up to date with progress and we are able to do this speedily by email.
Tel: 01277 811215 or email: [email protected]
3
MESSAGE FROM ANDREA PATIENT
HEART MONITOR AND DEFIBRILLATOR PROJECT MANAGER
❤
The last six months have been the busiest yet, with
defibrillator placements in schools all over the country.
The ‘Big Shock Campaign’ is continuing to go from
strength to strength and after SADS UK meeting with
policymakers, we are pleased that the Department for
Education are advising schools of the lifesaving potential
of having a defibrillator on the premises and SADS UK is
assisting schools to put the defibrillator and training in
place. This means that a huge amount of people are being
trained in basic life support and the use of a defibrillator.
SADS UK works with ambulance services across the
country and we appreciate the support they have given
SADS UK training personnel in lifesaving skills for over
thirteen years now.
I would like to thank all our members who continue to support the charity and place
defibrillators in their community, thus potentially helping to save lives. People are setting
up memorial funds and project funds with the charity to raise funds for defibrillators in
their community.
If you would like a defibrillator information pack please contact me and I will send you
a copy in the post or electronically. Email: [email protected]
MESSAGE FROM SARAH FRENCH
RAISING AWARENESS AND FUNDRAISING MANAGER
❤
I am always overwhelmed by our members’ enthusiasm
and commitment to raising awareness and funds for
SADS UK throughout the year. It really means so much
to SADS UK as a charity to have such fantastic support
from individuals throughout the year who have
organised charity nights, quizzes, ran, walked, climbed,
skydived, drank coffee and sold cakes to name but a
few ways our members have supported us.
I particularly enjoy seeing the photos fundraisers
send me of the events held and the smiles on faces,
the sense of achievement after completing a challenge,
the relief that it all went well and also to see how
families and friends pull together to raise awareness
and funds for SADS UK in memory of their loved ones.
Charity runs – As always, we have places in the 5k run in cities around the country.
We also take part in the London 10k and other widely held running events around the
country. www.justgiving.com/sadsuk/donate and Virginmoneygiving.com are two popular
online sites our supporters set up through SADS UK. SADS UK ringfences the funds to
help members with a project in their area and I am always here to send out promo items,
collection boxes, sponsor forms, press releases, etc. Please contact me and I will support
you every step of the way. email [email protected]
4
MESSAGE FROM DAVID HULET, GLASGOW
SOCIAL MEDIA MANAGER
❤
I joined SADS UK in September 2014, directly from our
sister organization SADS US where I was the Office
Manager and Program Associate. I spent most of my
time organizing and maintaining the everyday business
of the office, but also tirelessly scouring the media for
SADS events, initiating our response plan to find new
families affected by SADS conditions.
I'm excited to extend these skills in the UK and
oversee SADS UK’s social media accounts. I had a
baptism of fire when the first event I attended was the
SADS UK Heart to Heart Conference and Lifesaver
Awards, it was awesome. I currently live in Scotland
and alongside my work with SADS UK I am doing an MFA program in Creative Writing at
the University of Glasgow. I like to be hands on and have challenged myself to Climb
Mount Kilimanjaro for SADS UK starting on 2nd and finishing on the 16th June, spending
six days on the mountain. I can be reached on [email protected]
MESSAGE FROM JAYNE BIGGS
NORFOLK REPRESENTATIVE
❤
I’m 43, married to Tony and have two daughters, Olivia who is 14,
and Violet who is 9.
Violet had a sudden cardiac arrest on 23rd Feb 2013, whilst she
was asleep; she had never been poorly which made it all the more
bewildering. Violet was subsequently diagnosed with the Long QT
Syndrome and had an ICD fitted on 12th March 2013. I’m pleased
to be supporting the cardiac charity SADS UK as I believe raising
awareness of cardiac conditions in young people is paramount. A
defibrillator was used very soon after Violet had her cardiac arrest
and I know how important it was that she was defibrillated so
quickly, so I support the SADS UK Big Shock Campaign to put
defibrillators in all schools, this is absolutely essential to help save young lives.
Last year I spoke at the SADS UK Heart to Heart Conference and was pleased to speak
with other charity members afterwards. Some of them had experienced their child
suffering a cardiac arrest more recently. In my talk I spoke about what Violet had
achieved since suffering her cardiac arrest and it helped them gain confidence and the
realization that their lives would become easier in time.
Last year I also spoke to twenty year 4 medical students about Violet and her condition.
They really appreciated it as basically they knew nothing about Long QT and ICDs before
I spoke with them; it was also quite disconcerting as neither did my GP. So I am intent
in making sure people know and understand these conditions and the fact that they can
affect very young people. When people visit the doctors surgery with their children I
want to make sure these condition are not overlooked. Please contact SADS UK head
office if you would like to speak with me.
5
MESSAGE FROM ANGELA MORRIS
SADS UK NORTH-WEST CO-ORDINATOR
❤
I would firstly like to say how saddened I
was to hear the news about Barrie Irons
one of the charity’s staunch members, he
will be sorely missed by everyone who
knew him. Barrie was a big part of SADS
UK and his great speeches at many
events, in particular the Retreat, will be
greatly missed. I feel blessed to have
known him. My thoughts are with Brenda
and his family. In the early days of my
Angela Morris and her son Colin Hankin
grief Barrie and Brenda gave me so much
support and the strength to carry on,
they are both an inspiration. Barrie left his mark on this world and will never be forgotten.
I have been pleased to participate in the donation of cardiac equipment to schools in
the North West and I thank all the members who have fundraised to put this lifesaving
equipment in place. It’s fantastic to see the schools learn new lifesaving skills together
with the defibrillator and seeing how relieved they are at how easy it is to use the
defibrillator. I love attending these events as I get to meet lots of passionate people who
want to make a difference and save young lives.
SADS UK were invited to exhibit at many meetings in my area and its always good to
heighten awareness where I can. It was especially nice to be greeted by people I knew
at St James Hospital in Leeds and to participate in the meeting about the Yorkshire
Regional Inherited Cardiac Conditions Service. They really do offer a fantastic service to
heart patients. Dr Stephen Page and the rest of the team are very passionate and
everyone made me very welcome; it was another successful event.
The bereavement support group has been busy and I have been meeting with bereaved
parents in the area, as well as parents of children living with cardiac conditions to offer
information and support. I am pleased that people tell me that telephone and online
support also helps them; many of us need extra support at certain times in our lives no
matter how many years we have been bereaved.
The Big Fun Run at Sefton Park in Liverpool is always a big event in my calendar. As
always there is a lot of organising to do, but its great to meet up with so many supporters
on the day and catch up with everyone, organise group photos and meeting places, etc.
This year was particularly special as I was asked by the organisers of the Big Fun Run if
I would start the race. I was a little anxious as there are so many runners and it felt a
big responsibility. However, I felt privileged to be asked and I started the race in memory
of my son Colin and all of our children who left us too soon. The event gets bigger each
year with lots more people getting involved it is a great day out for all the family. I would
like to say a particular big thanks to Linda Boden our Middlewich Rep who does so much
to support the Big Fun Run and organises a mini bus to bring charity supporters from
the Middlewich area along on the day and Mandy Wright who supports the event every
year together with her employees DHL who generously matchfund her fundraising.
The Heart to Heart Conference in London is always a really productive event as it
enables us to meet up with health professionals in a relaxed atmosphere and to see the
new technology and the progress that is being made to help save more lives. I was
6
pleased to Chair the meeting along with Anne Jolly and Linda Boden and we had some
very interesting and inspiring speakers. People I spoke with said they gained such a lot
from this annual conference and were pleased that their learning was accredited and
contributed to their professional development. They felt they learnt a lot about SADS.
In the evening The SADS UK Lifesaver Awards ceremony was very emotional but
inspiring, meeting lots of people who have saved lives through using a defibrillator and
it was lovely to meet people whose lives have been saved. I was particularly moved to
tears by the young lad and his family who received an award for their positive outlook
on life and their drive to raise awareness was fantastic. It was lovely to have Dr Hilary
Jones attend and present the awards which made the day extra special.
SADS UK supported the 2014 North West Ambulance Service Cardiac Smart Awards.
It was good to go along to Bolton Wanderers Football Club with Linda Boden our
Middlewich Rep and see people being acknowledged for the fantastic work they are doing
in the community to help save lives, providing cardiac equipment. We gave lots of leaflets
out and spoke to lots of people who were interested in the work that SADS UK does.
So another eventful year meeting lots of inspirational people making a difference and
saving lives, I just want to say a big thank you to you all and long may it continue, if
there were not people like you all going the extra mile then we would not have come
this far in preventing sudden cardiac death.
Please feel free to contact me anytime for a chat email [email protected]
or phone 01925-822332 mob 07972 788958
MESSAGE FROM JOANNA QUIGLEY-PHIPPS
SADS UK PATIENT SUPPORT CO-ORDINATOR
❤
I’m pleased that after SADS UK campaigning for defibrillators in
schools that at last Government is listening to the charity. It’s
good that the Department for Education have informed schools
about the lifesaving potential of the defibrillator and asked them
to consider the defibrillator as part of their first aid equipment.
Other countries have CPR on the school curriculum and
defibrillators in schools, the UK should follow suit and save more
lives in schools and the community. I continue to offer support
and information to people affected by LQT.
MESSAGE FROM KELLY APPLETON
❤
FAREHAM REPRESENTATIVE
I decided to help out with SADS UK a while after my
brother, Liam, died because the thought of other families
having to go through the pain of losing someone is awful. I
want to raise not only money, but awareness so that other
lives could be saved. I’ve met up with other members of
the charity and I think the work that SADS UK does is
amazing – I will help out in any way I can in my area.
7
MESSAGE FROM SARINA DA SILVA
SOUTH WEST LONDON REPRESENTATIVE
❤
I’m a 33 year old mum with three children. I work in marketing
and was diagnosed with CPVT in 2012 after 20 years of searching
for the reasoning behind my blackouts since the age of 12.
After my two daughters were genetically diagnosed with the
same condition, I decided to raise funds for both my daughter’s
schools who now both have defibrillators and training in place.
I’ve been raising awareness of ‘The Warning Signs’ in my
community and am targeting schools, leisure centres, doctors
surgeries, medical centres, libraries etc.
Raising awareness is so important and the work that SADS UK
is doing funding research into SADS. I was pleased to speak at
the Heart to Heart Conference and see the launch of the London
School Defibrillators Campaign. It’s good to see that the charity has Dr Hilary Jones,
Good Morning Britain launching the campaign and backing the work that SADS UK does.
DEFIBRILLATORS IN SCHOOLS CAMPAIGN
❤
The Department for Education guidance has prompted many schools to contact the
charity to help them put defibrillators in place and organise training and the charity has
been encouraged by the way schools have responded and want to install this lifesaving
equipment. However, SADS UK is still pushing Government to legislate to make
defibrillators mandatory so that all children can benefit from having this safeguard in
place should an underlying cardiac condition or accident at the school cause them to go
into cardiac arrest.
Parliamentary Reception
Rt Hon Andy Burnham
Shadow Secretary of State for Health.
John and Anne Jolly from SADS UK speak with
MPs, along with Martin Bullock from the London
Ambulance Service.
SADS UK was invited to sponsor the ‘Are you Cardiac Smart’; a reception hosted by the
North West Ambulance Service NHS Trust for all MPs, Lords and Partners. The intention
being to bring about the improvement of survival rates of sudden out of hospital cardiac
arrest in the UK. Presentations and networking during the event endorsed the teaching
of lifesaving skills in schools and putting defibrillators in place in schools and public
8
places. SADS UK were pleased to support the event and sign the pledge. The Rt Hon
Andy Burnham Shadow Secretary of State for Health spoke at the Cardiac Smart
reception and Sara Harris from NWAS gave a compelling talk about the need for CPR
and defibrillators.
Minister of State for Schools
The Rt Hon David Laws MP, Minister of State for Schools, responsible for the policy area
of defibrillators being placed in schools, responded to the SADS UK call to make
defibrillators mandatory in all schools. He says he recognises the charity’s concern that
all schools should have defibrillators and agreed that this is lifesaving equipment. Along
with SADS UK they are encouraging schools to put a defibrillator in place as part of their
first-aid equipment.
He reassures that the Government fully understands that defibrillators are important
lifesaving machines to be used in conjunction with CPR. He anticipates that purchasing
an AED may prompt schools to raise awareness of AEDs across the wider school
community, and this would also cover the use of CPR.
He thanks SADS UK for their input into the AED guide for schools and feels sure that
lives will be saved as a result. To finish his letter, David Laws MP, Minister of State for
Schools says,
‘I was pleased to read that teachers in schools in Luton and Romsey have received
SADS UK Lifesaver Awards. It is always heart-warming to hear of cases in which pupils’
lives have been saved through the actions of teachers and other members of the school
community. I very much hope that as more schools acquire AEDs, such stories will
become more common. Thank you for writing on this important issue.’
Dr Hilary Jones, Good Morning Britain supports the SADS UK Big Shock campaign
Dr Hilary Jones, Good Morning Britain supports the campaign for defibrillators in schools.
Speaking at the Heart to Heart Conference at the Royal College of Nursing he said, ‘I am
delighted to be speaking this evening to launch the London School Defibrillator Campaign
– Safeguarding our future – our children, an initiative designed to make lifesaving skills
and defibrillators available in all schools in our capital city. It’s good to see SADS UK,
Saving Londoners Lives and the London Ambulance Service working together on this
campaign. I feel that with this powerful partnership behind the campaign this target will
be met and rolled out to other cities, towns and villages to help safeguard pupils and
personnel whilst they are at school’.
❤
SADS RESEARCH
STEM CELLS FOR SUDDEN CARDIAC DEATH:
27th NOV – AICC 4th ANNUAL MEETING
Dr Matt Daniels (left) (Consultant Cardiologist and Principle
Investigator University of Oxford) and Prof Chris Denning
(Principle Investigator, University of Nottingham) presented
their work on stem cell models of inherited heart disease
covering known disease processes associated with sudden
adult death; cardiomyopathy and channelopathy in particular.
They discussed a proposal to try and increase patient
9
recruitment into this exciting line of research to the AICC conference audience, and
solicited opinion on how the process could be made to work for patients, clinicians and
researchers alike. The proposal was well received and endorsed by the AICC.
As Dr Daniels pointed out, “We have had a good understanding of the spelling mistakes
that sit in the genes causing an inherited tendency to sudden death for many years. The
challenge we now face is to work out how those spelling mistakes cause the heart to
malfunction at a cellular or whole organ level. If we could understand what is going wrong
we could begin to look for new ways to treat this type of disease”.
Unfortunately it turns out that heart cells are very difficult to study in the lab. Not only
are they very difficult to get hold of safely, but also once removed from the body they
die quickly.
The two labs use the induced pluripotency technique developed by Prof Shinya
Yamanaka (Kyoto University, Japan, Nobel prize physiology or Medicine 2012) to
fundamentally change the way cells behave. In brief patients provide a simple skin biopsy,
and from that the scientists can make the cell behave like the stem cells of the very early
embryo which can then be used to produce any cell type of interest, including the heart.
Since the genetic make-up of the cells at the start and the end of the process is
identical to the patient they can be used to study the disease that affects the patient.
One advantage of the approach is that it generates a renewable source of material (the
stem cells live forever) from a single patient sample. Furthermore heart cells made in a
dish live much longer than ones removed from the body.
To date 19 inherited cardiac diseases have been studied with this method, enabling five
new drug treatments to be tested in the laboratory. More disease models are in the pipeline.
Now that the method has been shown to be effective the two groups are trying to open
out their recruitment on a national scale to break down the geographical barriers that
exist between the most interesting patients and the scientists interested in working on
their condition.
To maximise the chance of finding new treatments it is important that the cell models
the scientists make misbehave in the dish as much as possible. Since we know that
patient outcome with inherited heart disease can vary at this time the teams would like
to try and concentrate on families with a high disease burden as they believe that those
are most likely to have easily detectable problems. If you are interested in taking
part in research, please contact SADS UK.
Dr Matthew J Daniels MA PhD MRCP – Wellcome Trust Intermediate Clinical Fellow
(Cardiology) – Principal Investigator (University of Oxford, Radcliffe Department of
Medicine, Division of Cardiovascular Medicine).
LOOKING AT HOW CORONERS INVESTIGATE SADS RELATED DEATHS
“No one could tell me anything, I just wanted to know”
I am currently conducting a PhD research project at Cardiff
University School of Social Sciences, supported by the ESRC and
SADS UK, looking at how coroners investigate SADS related
deaths and how the information yielded could serve to prevent
deaths in the future in the same family.
This research was designed around the emerging molecular
autopsy technology. This is where the pathologist would request
that a small sample of the spleen or liver of the individual be taken
for genetic analysis, to determine which condition caused the death.
Chris Goldsworthy
However as this project developed it became much more a
project about how the professional groups involved in investigating
10
the death and subsequently screening and treating family members worked
collaboratively; or not, as the case may be. A key concern of the families bereaved by
SADS is that (as the quote in the title suggests) they weren’t told anything about SADS
or indeed the genetic nature of the condition at the Hospital where their loved one was
taken. The Coroner wasn’t able to provide this during the investigation nor subsequently
was their GP. A key finding of my research thus far is that these professionals simply do
not have enough knowledge about these conditions to provide an adequate answer to
the obvious questions that are asked following the sudden death of a loved one: “What
happened? And why did it happen?” nor do they have a sufficient network in place for
them to be able to refer such families to appropriate experts who would perhaps be able
to provide more sufficient answers. Families I spoke with turned to SADS UK and other
charities to answer such questions.
Preliminary findings from interviews with coroners suggest that although the coroners
legislation (the Coroners and Justice Act 2009) identifies the primary role of the coroner
as investigating whether a death is natural or unnatural, (unnatural meaning whether
foul play was involved). The Coroner was keen to help the family affected by SADS, which
is categorised in coronial law as ‘natural’. The Coroner is tasked to establish ‘a’ cause of
death on a balance of probabilities, coroners still maintain that the family remains their
primary responsibility and the hereditary risk furthers this responsibility:
‘We have an obligation to that family to ensure that we get the right result....
I mean I think that’s the responsibility that we have when you’ve got
other young people in the family’
(Interview with Coroner)
Though experiences from families do not necessarily support this finding, which could
be a result of disparity across coroners’ jurisdictions. Also I have purposefully identified
coroners who have a track record of engaging with the implications of these conditions
with the intention of identifying best practice and why particular coroners perform so
drastically differently when confronted with a young person suddenly dying in their
jurisdiction of cardiac causes.
A key reason that has emerged through interviews with clinical specialists in the above
coroners’ area is that this coroner engages with specialist clinical services, accessed
through the expert cardiac pathologist who is employed at the centre in which the specialist
service is located, but also conducts coroners post-mortems. This connection enables a
sharing of knowledge, as well as the availability to directly refer families into the specialist
inherited cardiac conditions service, which is important for families as it establishes a more
efficient and joined up service in which the family maintain the central focus.
The implications of understanding the broad process from sudden death to targeted
family screening as essentially connected by a shared responsibility to the family, is that
it sets a precedent for collaborative working and knowledge sharing which could potentially
prevent many deaths in the future in families that have already suffered such great loss.
Although the molecular autopsy technology is not currently undertaken on a large scale
it is becoming more readily available across the UK and has been proven to be
economically viable. The main stumbling block to its acceptance into pathological practice
appears to be the lack of knowledge across the professional boundaries discussed above
as well as conflict arising over who would provide the technology, the NHS or the Ministry
of Justice. Whilst this issue remains, connected working practices between the medicolegal and medical domains could at the very least open up avenues for discussion on the
topic which have thus far not extended beyond the boundaries of the respected
professions. Along with SADS UK I would like to thank all the members who have
given their time so generously to help with my research so far.
Chris Goldsworthy, Cardiff University
11
SADS UK HEART TO HEART CONFERENCE
ROYAL COLLEGE OF NURSING, 20 CAVENDISH SQUARE, LONDON –
SATURDAY, 18th OCTOBER 2014
❤
SADS UK were pleased to subsidise the SADS UK Heart to Heart Conference and were
encouraged by the number of nurses, doctors and paramedics, as well as charity
members who came along to the conference; the exhibition hall was buzzing and it was
great that Dr Hilary Jones, TV Good Morning Britain, joined us too.
Having a network of professionals involved with SADS and inherited cardiac conditions,
pathologist, cardiologists, researchers, paramedics and families, made a very
collaborative, informative and interesting day. The experiences of people living with
conditions came over very powerfully and were again well received by the audience.
The SADS UK team were pleased to speak with attendees who participated in the
discussions and felt they learnt a lot from the conference. They were able to reflect their
learning in their study portfolios and were awarded seven study hours as the content of
the day provided significant information about SADS, inherited cardiac conditions and
issues that impact on those affected.
SADS UK ANNUAL NATIONAL DEFIBRILLATOR
LIFESAVER AWARDS DINNER
ROYAL COLLEGE OF NURSING, CAVENDISH SQUARE, LONDON
SATURDAY 18th OCTOBER 2014
❤
SADS UK were delighted that the charity’s Lifesaver Awards Evening was so well received.
The Cowdray Hall at the Royal College of Nursing made a fabulous stage for these
prestigious Awards and it was a very emotional and enjoyable evening.
Dr Carl Gwinnut Vice Chair of the Resuscitation Council (UK) joined the founders of
the charity Anne and John Jolly, together with Dr Hilary Jones from Good Morning Britain
who invited the Lifesavers to the stage to receive their awards.
Dr Hilary Jones says
I’m pleased to presenting the SADS UK National Lifesaver Defibrillator Awards. I’ve been
lucky enough to have heard from Anne about the fantastic work of the people we are
awarding this evening. Its satisfying to see how people have worked as teams when a
cardiac arrest has been witnessed using their lifesaving skills and a defibrillator; what a
powerful combination this is when resuscitating a person who has had a cardiac arrest.
12
Dr Hilary Jones, TV Good Morning Britain presents the Lifesaver Awards at the SADS UK Annual Lifesaver
Awards Dinner.
I was staggered to see that two teenage children suffered a cardiac arrest at school, but
thankful to see that they survived thanks to the lifesaving skills of those around them
and a defibrillator being available at the school.
I As a GP, I am all too aware of the consequences of SADS on the entire family and of
course the importance of screening other family members where appropriate. A huge
amount still needs to be achieved in raising awareness not just amongst the general
public but amongst the medical profession as well. As Health Editor for GMB we do our
best to highlight the importance of awareness but all too often the catalyst for a
broadcast is another potentially preventable death from SADS and the lack of lifesaving
skills and equipment that may have made a difference. That is why we are all here today
to carry on the work that needs to be done and to celebrate those people and those
efforts which have paved the way.
I am also delighted to be speaking this evening to launch the London School
Defibrillator campaign - ‘Safeguarding our future – our children’ an initiative designed
to make life saving skills and defibrillators available in all schools in our capital city. It’s
good to see SADS UK, Saving Londoners Lives and the London Ambulance Service
working together on this campaign. I feel that with this powerful partnership behind the
campaign this target will be met and rolled out to other cities, towns and villages to help
safeguard pupils and personnel whilst they are at school.
Contact SADS UK if you would like to nominate a lifesaver for the SADS UK Annual
National Defibrillator Liversaver Awards 2015, deadline 31st July.
❤
PATIENT SUPPORT
Speaking with others
If you would like to speak with other families or individuals living with a condition please
let SADS UK know. It can be helpful to speak with other people who have been living
with a condition for a while and our Patient Support Co-ordinator Joanna is always willing
to speak with you and the charity has support contacts living around the country Contact
SADS UK if you would like your child to network with other young people.
13
Patient Charter
SADS UK was one of the 78 patient groups who signed up to the Patient Charter made
to improve NICE’s Highly Specialised Technology Evaluation Programme. The Genetic
Alliance launched the first Patient Charter last year, highlighting the concerns patients
have about the new approach the Government and NICE are using to determine whether
medicines for rare conditions are made available through the NHS. NHS England plays a
significant role in determining patient access to rare disease medicines as they manage
direct commissioning through Clinical Reference Groups, Individual Funding Requests,
the Cancer Drugs Fund and Commissioning Through Evaluation.
❤
BEREAVEMENT SUPPORT
Photographed above, the Retreat in Warwickshire. Every year the Retreaters release
balloons, light candles and a memorial address is held in memory of loved ones.
Bereavement Support
SADS UK has qualified counsellors and support contact people. These are people from all
over the country who have been affected by a SADS death and offer their support to people
who are more newly bereaved and need encouragement and understanding to help them
along their way. More support groups are being developed in different parts of the country
and if you would be interested in joining/running a group please give us a ring.
Book for the 2016 annual Retreat
In 2016 the Retreatwill be held at Scalford Hall in Melton Mowbray, Leicestershire from
the 6th to 9th February 2016 (3 nights). Contact SADS UK if you would like to join us.
14
CARDIAC EQUIPMENT DONATIONS
❤
All Saints Academy
All Saints Academy benefitted from a defibrillator through the generous fundraising of
Sarah Pyatt in memory of her son Jake Gallagher.
East of England Senior Training Officer, Lindsey Coldwell trains staff in lifesaving skills
and the use of the defibrillator.
Stotfold Bowls Club, Herts
Lindsey Coldwell, Senior Training Officer,
East of England Ambulance Service carries
out the training at the Bowls Club.
Abacus Primary School,
Wickford
Abacus Primary School were so
pleased to have a defibrillator
and training in place that they
made SADS UK their charity of
the year.
15
Royton and Crompton School
In memory of Ashley Livesey
Since the death of their son Ashley Livesey
aged only 15 years old, Gary and Julie have
raised awareness of SADS and funds to
provide defibrillators. Supporting the SADS
UK Big Shock Campaign their most recent
donation was a defibrillator to Ashley’s
former school Royton and Crompton.
School staff were trained on how to use the
new machine by the North-West Ambulance
Service.
Photo by kind courtesy Oldham Evening Chronicle
Trinity Primary School, Oswestry
Trinity
Primary
School
Oswestry were delighted to be
donated a defibrillator by
Oswestry Representative Anne
Wilson,
which
was
also
supported by a generous
donation from Oswestry Rotary
Club.
St John Fisher Primary School, Widnes
A defibrillator was donated to St John Fisher Primary
School in Widnes in memory of Emma Brady. Emma’s
family wanted to organise something positive in her
memory after her tragic young death. They have raised
funds through various events, including the Liverpool
Marathon. The defibrillator pictured went to St John Fisher
Catholic Primary school and in total eighteen members of
staff were trained to use the defibrillator. Marie Brady and
family have now donated five defibrillators in memory of
Emma.
16
Clydebank Town Hall
A defibrillator was donated to
Clydebank Town Hall in memory of
Scott Docherty. Photographed here is
Scott’s mother Norma Docherty
together with the Scottish Ambulance
Service
demonstrating
chest
compressions and providing training to
staff.
Milby Primary School, Nuneaton
James Reilly and his friend Chris
Dawes cycled from Coventry to Nice
last August. They completed 1300
miles in 14 days. James completed
the challenge in memory of his Dad
(Tony), who died suddenly of a
heart attack in 2002 at the age of
48. The duo are photographed
above donating a defibrillator to
Milby Primary School, where Chris is
a teacher.
Dearnford Park, Shropshire
Lynn Leigh, Dearnford Lakeside Café
with Ian Bryan from the West
Midlands Ambulance Service who
provided lifesaving training to
personnel at the Shropshire beauty
spot.
After seeing how many people are
attracted to the beauty spot,
Joannah Thelwell and her friend
raised funds to donate a defibrillator
in memory of her partner Nathan
Jenkins who died suddenly, aged
just 41 from Sudden Arrhythmic
Death Syndrome. Joannah put the
defibrillator in place to help
safeguard local people in and around
Whitchurch.
17
Weston St Mary Primary School
Christine
Pepper
donates
a
defibrillator in memory of her son
John Pepper. Photographed with the
defibrillator is John’s sister Kathryn
Flowers presenting the defibrillator
to the school. Christine, along with
other parents and grandparents
raised funds for the defibrillator and
thanks to a donation from South
Holland District Councillor Anthony
Casson and Weston Consolidated
Charities they were able to provide
the defibrillator to the school.
Christine said, ‘I would like to thank all the people who have given money and supported
us with this project we are delighted that its reached its conclusion.’
Wisbech Citizens Advice
Bureau, Cambridge
Lifesaving equipment was donated
to Wisbech Citizens Advice Bureau in
memory of Suzanne Duffy, whose
parents Ian and Evelyn Duffy,
together with their family raised the
funds to make the generous
donation.
Advise service Leader, Oonagh
Tucker and Melanie Howlett proudly
show their new defibrillator.
Chiswick School
Graham Booth completed the Brecon Sprint
Triathlon - in memory of Savvas Michaelides -a
close friend who died of a cardiac arrest in
February 2014. Graham raised sufficient funds to
donate a defibrillator to Chiswick School in his
memory.
Defibrillator for Collis Primary School,
Richmond
The London Ambulance Service provide training
at Collis Primary School.
18
Lawrence Sheriff School, Rugby
Thanks to the generosity of Tracey and Stephen
Spooner, a second defibrillator to the school will
be kept at the school sportsfield in memory of
their son Joe who sadly died from SADS at the age
of 15 years old. Joe was a former pupil fondly
remembered by the school.
Colney Heath FC
Colney Heath FC were keen to put a defibrillator
in place and this was part funded by K D Wright
Independent Financial Planning.
Harriers Banbury Academy
Supporting the cardiac charity SADS UK’s Big Shock
campaign Karen Bott and family are working tirelessly to
raise funds to put potentially lifesaving defibrillators into
schools in their area. So far five schools have benefitted
from their generosity with Harriers Banbury Academy
being the most recent.
South Central Ambulance Service provide training to staff
at Harriers Banbury Academy.
Rossett School
Jackie and Ken Waight, are donating
defibrillators in memory of their son
Richard Waight who died from Sudden
Arrhythmic Death Syndrome in 2009
at the age of only 23yrs old. Since
Richard’s untimely death they have
raised funds and are now donating
defibrillators in their locality of
Doncaster and further afield in
memory of Richard as they believe
this lifesaving equipment must be
more readily available to save lives.
Staff and Sixth form Students were
provided with defibrillator training at
Rossett School.
19
Long Buckby Infant School, Northants Rickmansworth School, Herts
Parkland Infant and Nursery School
The lifesaving equipment is donated by Clare Stewart
and Cherry Legg in memory of Cherry’s daughter
Jenny Legg died of SADS at the age of 14 years old.
Clare and Cherry are supporting the SADS UK Big
Shock Campaign to put lifesaving defibrillators in all
schools as they know it could save lives. They have
carried out many fundraising activities, most recently
with Clare completing a skydive and Cherry’s son
Christopher taking part in the London Marathon.
Parkland Infant & Nursery School is part of the
Wilsthorpe Campus and one of three schools that will
benefit from Clare and Cherry’s generosity.
Shenfield High School
The Rotary Club of Brentwood a Beckett supported the SADS UK Big Shock Campaign in
Brentwood.
Ian Lloyd trainer from the East of England Ambulance Service is photographed with Anne
Jolly SADS UK, Caroline Herman, Headteacher and Mike Hawkins from the Rotary Club
of Brentwood a Beckett.
20
North Ealing School
Philip Jolly cycled from London to Lands End in
just 24 hours and contributed funds towards the
defibrillator for North Ealing School.
Pinfold Primary School
Photographed is David McNally from the North
West Ambulance Service, together with newly
trained staff Mrs Henthorn, Mrs Rowles, Mrs
Armstrong. SADS UK members Mrs Dawn Pragnall
and fellow fundraiser local PCSO David Pragnall
are on the right. Dawn set up Defibrillators for
Local Communities (DLC) and Pinfold Primary
School is just one of the five schools who have
been donated defibrillators through the generous
and committed fundraising of the DLC fund.
Poplar Street Primary School
Defibrillator donated by Defibrillators for Local
Communities (DLC). Trained staff are pictured
with Dawn Pragnall proudly displaying SADS UK
T’shirt for the local press to take a photo.
St Elizabeths and St Gabriels Primary Schools
Along with his local community Bill Hogan far right
raised funds for defibrillators and training for both St
Elizabeth and St Gabriels Primary Schools.
Willaston Primary School
SADS UK are grateful to South Cheshire Harriers
for supporting the defibrillator donation to
Willaston Primary School and to David McNally for
providing the training.
21
Silverstone Infant and Junior Schools,
Northamptonshire
SADS UK are pleased that Silverstone Primary and
Junior School have defibrillators on site. They are
grateful to the school for donating £1,591.24
raised through the schools various fundraising
events in the latter part of Summer Term in 2014,
including coffee afternoon and a talent show to
help other schools put this lifesaving equipment
in place.
Defibrillator training. Left: Silverstone Infant School; Right: The Read School.
Luton Town and Indians Cricket Club
Luton Town and Indians Cricket Club joined SADS
UK to organise a defibrillator on its premises.
Photographed above is 16 year old Rahul Patel
(right), who himself survived cardiac arrest,
together with Krunal Kalani. The defibrillator
placed at the Cricket Club is easy to use by a
layperson.
Morda School, Oswestry
Anne Wilson, Oswestry Representative is photographed
above with John Elgin, Headteacher. Harry Pickavance,
Shock for Life Campaign Co-ordinator contacted the
charity and the defibrillator funded by the Morda Primary
School Shock for Life Appeal was supported by SADS UK.
Thanks go to Harry Pickavance for donating funds from
the Shock for Life Appeal to the charity to help with the
SADS UK Big Shock Campaign.
22
❤
DEFIBRILLATOR CABINETS
Options available:1. Toggle latch with snap
Tag
2. ¼ turn knob with break
glass key
3. Two ¼ turn knobs
A cabinet makes the AED more noticeable to potential users, it also keeps the AED free
of dust and moisture and offers protection against unwanted handling.
Outside/exposed cabinets
SADS UK prefers unlocked cabinets and these can be
provided by the charity.
However if it is necessary to protect the AED from theft
or vandalism a coded lock can be provided. The AED
access code will be provided by the ambulance call handler
when the emergency call is made.
When choosing a locked cabinet you must consider the
likelihood of theft or damage, this has to be balanced with
the potential delay in accessing the AED.
Contact SADS UK for details of the new external cabinet
developed for the charity.
RAISING AWARENESS AND FUNDRAISING
❤
In memory of SADS UK Representative Barrie Irons
It is with great sadness that SADS UK let
you know that Barrie Irons, representative
for Beds and Herts passed away on
October 23rd 2014 after falling ill with
cancer. Barrie was a big man with a
personality to match, hard-working and full
of fun, he will be sorely missed by the
founders of the charity (Anne and John
Jolly) and numerous members, especially
those who attended the yearly Retreat,
who got to know and love Barrie. Our
thoughts are with his wife Brenda and her
family at this sad time.
23
Photo above, Barrie and Brenda Irons receive Community
Defibrillator Award, presented by the Chair of the
Resuscitation Council (UK) David Pitcher (2013).
Barrie and his wife Brenda have been involved with SADS UK since they attended the
first international SADS UK Conference in 2002. Since that time they’ve given raising
awareness talks and supported people who have been bereaved. They lost their son
David Irons in 1974. At the time they were told he died from epilepsy, however events
that happened in the family later showed that the Long QT Syndrome was quite dominant
in the family.
Raising awareness about SADS and conditions that might cause a premature sudden
death was very important to them and they networked and spoke with many people to
heighten awareness. Barrie and Brenda discovered that they could continue raising
awareness in a way that also raised funds for defibrillators. Barrie converted home videos
to DVD and people made a donation to the David Irons Memorial Fund. Their generosity
has meant that Barrie and Brenda have donated many defibrillators. They received a
commendation from their MP Alistair Burt for their tireless campaigning and the 35
defibrillators that they have donated to schools and sports clubs in his constituency and
an award for the remarkable number of defibrillators they have placed in the community.
SADS UK is grateful to them for their hard work and to the East of England NHS
Ambulance Trust and Lindsey Coldwell who carried out the training when the defibrillators
were put in place.
Barrie’s wife Brenda kindly asked for donations to be made to the David Irons Fund,
SADS UK, so that she could continue their good work of putting lifesaving defibrillators
in place. Our thoughts are with Brenda and her family at this most difficult time.
In Memory of Joanne Griffiths
Angela & David Hosking Charity held a Quiz Night
and Raffle at The Rufford Arms on the 21st
November. It was well attended and a great fun
night with a pie supper. David was quizmaster and
together with generous raffle prizes a fantastic
£503 was raised in memory of Joanne.
Joanne Griffiths
In memory of Laura Radcliffe-Seth
Halifax staff at Welwyn Garden City
supported Mark Seth in raising funds in
memory of his wife Laura Radcliffe-Seth,
holding quiz nights and collections at their
branch. Mark is pictured with staff
presenting him with a very generous
cheque of £2,019.70 from funds raised
during the year.
A kind donation of £21 from a collection
box at Mark’s local chemist in Hallgrove
was also made to Laura’s fund.
24
In memory of Susan Yost
Shaun Yost completed the Prudential Bike Ride London-Surrey
in memory of his wife Susan Yost raising funds of £1,028. The
weather was not kind to the riders but Shaun completed the
course in very good time.
Shaun is supporting placing defibrillators and training in
schools along with Susan’s mother Anne Wilson who has donated
defibrillators to schools in Oswestry and district.
Anne Wilson, (second
right) along with good
friend Margaret Clegg
(second
left)
and
supporters have raised funds from coffee
mornings and cream teas held. Anne has spoken
at rotary clubs to raise awareness and recently
donated funds in lieu of Birthday Presents; a
generous £875.
The Marches School Non Uniform Day raised
£328. Oswestry Rotary Club donated £300, being proceeds of their street collection in
June. A friends Birthday Party in support also raised £250 and Anne’s latest coffee
morning raised a fantastic £527.
In memory of Gary Anthony
Vincent
Farah Boggia Vincent and together with
her son Giani they took on a very brave
plane flight raising over £600 in support
of SADS UK. Gianni’s grandfather also
donated a very generous £110. Thanks
also go to Bush Hill Rangers Football
Club and Walker Primary School for
funds donated.
Farah says,
‘Gary was a humble, spiritual person
who despite having a turbulent
childhood after being adopted, worked
so hard to make a positive contribution
to the world. He was a talented
swimmer and diver who, as a teenager, became part of the British Olympic Dive Team.
Gary worked tirelessly for various charities and taught disabled and vulnerable young
people to swim. The proudest moment of his life was when he became a daddy to his
gorgeous son Gianni. Gary was always laughing and I feel privileged to have met him
and to have shared sixteen years of my life with him.
Sadly, Gary died suddenly and unexpectedly October 2011, age 40, one week before
his son's eleventh birthday. Gary was Gianni's hero daddy. Gary's sudden and
incomprehensible departure from this world left his son confused and devastated. I have
spent the last three years grieving and desperately researching Gary's sudden death.
When I came across SADS UK I felt they understood the pain and bewilderment we were
all suffering over the sudden loss of Gary.’
25
Danielle Vincent – Festival of Fun
Bailey Drew’s aunt Danielle Vincent organised
a Festival of Fun because Bailey was such an
outdoor type of person. On her JustGiving
page Danielle said, ‘We are holding a 7-a-side
football tournament for SADS UK because
Bailey would have loved it!!’
Funds of
£1,902.50 were raised on the page to date.
Danielle also organised an Amateur Boxing
Club Show and took part in a Santa run. She
says, ‘Raising money for life saving equipment
and also awareness of this deadly condition is so important to all Bailey's family.’
Fundraising has enabled five defibrillators to be donated, those who benefitted were
Malcolm Sargent Primary School, The Bluecoat School, St Gilbert’s Primary School, St
George’s CE Primary School and St Augustine’s Catholic Primary School.
Charity football match at the Stamford Carnival in memory of Bailey Drew
Nick Gill who after hearing about local boy Drew
Bailey aged 9 from Corby Glen losing his life to
Sudden Adult Death Syndrome decided to raise
some money by taking part in a charity football
match at Stamford Carnival on the 2nd August.
Nick along with Karen Scotney, Damian Moss and
Mika from the Grantham site got together an
adult’s team and child’s team to take part and
raised nearly £200, and plan to raise more by
selling wristbands, badges and key rings in the
future.
In memory of Adam Julian Wardle
Julia Wardle continues to support SADS UK
in memory of her husband Adam Wardle.
She held a very successful charity night last
year and most recently sending a cheque
from Barnfields for £651.85. She continues
to support the charity with personal
donations made to Adams Memorial Fund.
Derby Big Fun Run
Alexandra Draper proudly shows her medallion
after completing the Derby Big Fun Run
donating £64 to SADS UK
26
KDW Associates Triple Challenge
Dan Ainsworth and David Wright,
Financial Planners and Marcus Maisey,
Director KDW together with Anne Jolly
SADS UK
David Wright, Mark Peddle and Dan
Ainsworth ran a Marathon, an Ultramarathon (100km) and a Triathlon
within the space of 6 weeks raising
funds of £9,365.00 to be divided
between SADS UK and Cancer
Research.
Eddie Lynch - in memory of brother James Lynch
Eddie Lynch with his Girlfriend Lucy Walker, together with team and friend Tom de Ronde
in red.
Eddie Lynch is supporting the SADS Big Shock Campaign to make defibrillators
mandatory in schools in memory of his brother James. He is photographed above running
Fairlands Valley Challenge.
He says, ‘It’s particularly tragic to hear of young people dying of cardiac arrest. I
understand how important it is to defibrillate a person in cardiac arrest as quickly as
possible to give them the best chance of survival. It makes sense that all schools should
have this lifesaving equipment in place.’
In memory of Matthew Flatman and
Dave Northan who died from SADS
After losing two of his friends to SADS,
Jamie Gunner felt compelled to raise
funds to help the charity prevent these
tragic young deaths. He organised an
amazing charity fun day at the Henry
Cort Recreation Ground, Fareham and
raised £780.
Jamie is photographed presenting the
generous cheque to SADS UK Fareham
Representative Kelly Appleton.
27
In memory of Nisha Kachra
Brave Laura Nicholls shows no nerves as she prepares
to jump off the top of the Stratosphere Tower, the
tallest freestanding building in Vegas with 108 floors!
Laura completed her challenge and raised over £600
in memory of Nisha Kachra
Laura says, ‘All money raised will be given to the
charity SADS ( Sudden Adult Death) in memory of our
special and sadly missed Nisha.’
In memory of Nathan Jenkins
Sadly Joannah’s partner died prematurely, she says,
‘On July 23rd 2013 life for me and my boys changed forever.
My amazing partner 'Nath' passed away suddenly. We were
together 15 years. He was only 41. At the time our boys
were 11 months and 3 years old. Nath's death has had a
huge impact on myself, his boys and all his family and
friends that loved him dearly. Doing something positive is
what I need to do. I want to raise money for SADS UK for
vital research. To even possibly get a vital defibrillator into
our local community would mean the world to me and his
family.’ Together with her friend Paula Reynolds they
completed the Derby Big Run, enabling them to achieve Joannah’s wishes to support
research and a defibrillator was donated to Dearnford Lake in Nathan’s memory.
In memory of Tommy Thomson
Stephanie Thomson undertook an Ice Bucket Challenge in memory
of her father Tommy Thomson who sadly died aged only 39 years
old. Stephanie says, ‘Not many people have heard of adult sudden
death, however at the very young age of 39 my Dad suddenly died
leaving behind three kids Michelle, Stephanie and Darren . . . three
grandkids, Keira Logan and Jaya and also his wife Yvonne. SADS
UK is a charity who helps the families who are victims of SADS and
also makes people aware of SADS.’ Stephanie did as she intended,
she highlighted SADS widely and raised £520 for the charity.
In memory of Daniel Antcliffe
Simon Ash, photographed above completed the Sheffield Half Marathon in memory of
his nephew Daniel Antcliffe, raising £460 towards defibrillators in the community.
28
In memory of Thomas James Handling
Thomas James Handling sadly passed away in April
2014 at the tender age of 22 years old.
Thomas and his Dad, Brendan were keen bowlers,
so Brendan decided to set up a bowls competition in
memory of his son. It was a great success and raised
£1,000.
Marion and Brendan Handling presented a generous
cheque of 1,000 donation to SADS UK. They are
photographed above with June Nichol accepting the
cheque on behalf of the charity.
James Mason completes Virgin London Triathlon
A very fit James completes the Virgin London Triathlon, which includes a 1,400km swim,
40km cycle and 10km run. He is pictured above during the race and at the end of his
challenge with a very well deserved pint! James raised a generous £635 for the charity.
In memory of Emma Wylie
Susan Wylie organised for a further £9384.15 to be
bequeathed from Emma’s Godmother Lynda Murdin’s
Estate in memory of her daughter Emma Wylie. Funds
from the Emma Wylie Memorial fund have supported
research at Papworth Heart Hospital and the Institute
of Medical Genetics in Cardiff. Emma’s fund has also
supported schools in the North East to put defibrillators
and training in place.
In memory of Edward Gabbert and Chris Hoggarth
Broughton Young Farmers raised £1,725 by
taking part in a marathon sledge push from
Bowness on Windermere to Broughton-inFurness in memory of Edward Gabbert and
Chris Hoggarth. They completed the marathon
in an amazing 6 hours!
29
In memory of Scott Docherty
Norma Docherty and her sister Lillian
raised £100 by making the fabulous
‘nappy cakes’ seen here. Norma sent
£808 from Lloyds Glasgow from the
sale of Christmas goodies in memory
of her son Scott.
Below: Proudly displaying her medal
Tracey Paterson completed the 5k
very muddy and tough major series
event on Saturday 27th September
raising £304.50 in memory of Scott
Docherty.
In memory of Ella Bury – Bupa Great Birmingham Run
Terry Moynihan - In memory of Ella Bury
30
In memory of Ella Bury
Netball Match
Danielle Kennedy held a charity netball match in
memory of Ella Bury at the Heart of England
School Students at the Heart of England School &
Sixth Form raised £925.03. Her friends wanted to
raise as much money as they could to support the
charity and raise awareness of SADS.
Zumbathon
Abbie, Liv, Meg, Ze, Julie, Laura, Nicola and many others completed a two and a half
hour Zumbathon at Solihull Sixth Form College in memory of Ella Bury to raise awareness
of Sudden Adult Death Syndrome and the charity SADS UK.
Ella’s mother Karen Bury organised the Ella Bella Ball
Ella Bury sadly passed away in July 2014 at the age of only
17yrs old. Mr and Mrs Bury kindly organised for donations in
memory of Ella Bury to be made to the charity. The Ella Bella
Ball was held in her memory and raised significant funds. There
was a superb three course meal, charity auction, raffle, disco
and other entertainment. There was an amazing list of auction
and raffle items and Ella’s family and Highway Netball Club gave
a huge thanks to all those who had donated so generously. Her
family and friends have continued to raise funds and awareness
of SADS. The Ella Bella Ball raised £8,117.
Solihull Sixth Form College kindly donated £71.84 in memory
of Ella Bury.
In memory of Laura Persey
Naomi Gay and team took part in the London South Tough Mudder on October 25th 2014.
They are photographed here celebrating completing the course with a well earned pint and
raising over £800 for SADS UK! Naomi Gay, Kirsty Gay, Josh Gay, Will Gay, Stuart Persey,
Jamie Greenslade, Dan Llarney Anne Jinks, Georgie Bear and Anne Lock all took part.
Naomi says, ‘It is safe to say that although we may look like athletes, this will be an
enormous challenge.
We will be completing this in memory of Laura Persey who passed away in her sleep
with no explanation, just days before her 20th birthday in October, 2007. Laura was a
lovely, kind person, that would have done anything for anybody, whom was taken from
us far too early.’
31
Gary Hurst - Mont Blanc Ascent in memory of Andrew Dickinson
So after years talking about it, I decided to put my money
where my mouth is and climb a mountain; a proper mountain!
Mont Blanc is the highest mountain in the Alps and Western
Europe at 4810m above sea level. Though thousands of
people climb it each year, it is no mean feat. The trip lasted a
total of six days on the mountain, the first three days were
used to practice rope and crampon skills, as well as sleeping
at altitude to properly acclimatise before tackling the big one.
Summit day, 24th August 2014, was the most physically and
mentally challenging thing I have ever done! We climbed
almost uninterrupted for 12 hours which showed me just how
far I could push myself.
The tragic loss of our good friend Andy Dickinson, a young,
healthy guy, in May 2014 to Sudden Arrhythmic Death
Syndrome made me reflect strongly on life. Principally, you never know what is coming
next! So seize the day and do the things you say you want to do; now, not later! So, in
memory of Andy I wanted to raise money for a charity that is making efforts to prevent
and research Sudden Arrhythmic Death Syndrome, as well as most importantly funding
the purchase of life saving equipment such as defibrillators in schools and sports clubs –
something that Andy’s family are keen to support. Gary raised over £1,000.
Rob Lee ran the Venice Marathon in memory of his good school friend of almost twenty
years Andrew Dickinson. Rob says, ‘We unfortunately lost in May this year due to a sudden
cardiac arrest. I had the pleasure of running on multiple occasions with Andy at school
and in recent years. Unfortunately for me I was generally chasing, he was surprisingly
quick! Though always enjoyed the thrill of the chase and the banter that came with it.’
£1,215.00 was raised, which included a donation from HSBC, Rob’s employers.
In memory of Andrew Dickinson
Carys hosted a fundraiser in memory of her husband
Andrew Dickinson who passed away on the 8th May
2014 to SADS. Carys decided to hold the Bond Ball to
raise funds in his memory and put a defibrillator in
place. She felt this was an appropriate event to hold
as Andrew liked a good night out.£2,558.82 was raised
from the fabulous night.
Defibrillators have been donated to Fernhill School
& Language College and Slough and Eaton C of E
Business Enterprise College in memory of Andrew.
In memory of Laura Finney
Chelsea Blanch together with friends, Alice Hoole and Anju Blau, organised a Christmas
Charity Event at the Sanctuary Bar in Basingstoke in memory of Laura Finney who sadly
died in her sleep on Christmas Eve aged just 30yrs. They wanted to mark the 1st
Anniversary of Laura’s death and to raise awareness and funds for SADS UK. Over 100
people came along and Laura’s father, Andrew Finney and step-mum Lorraine were
touched by the event which was a celebration of Laura’s life. In the afternoon mulled
wine and mince pies were served and this was followed by five local bands, performing
artists and a DJ Disco in the evening. A generous £1,749.89 was raised from the
memorial charity event.
32
In memory of Michael Hurst
Last November Ruth Garrett and Min Tarleton held a coffee morning raising awareness
and funds for SADS UK. Ruth lost her brother in law Michael Hurst to SADS, he was only
31 yrs old. Min lost her son Samuel Tarleton to SADS in May 2014, aged just 25yrs.
Funds of over £1,000 were raised in their memory.
In memory of Nick Rawlinson
The Rawlinson Bracket bike ride
was set up after the premature
death of Nick Rawlinson. He
loved cycling and as a tribute to
Nick the popular bike ride was formed. There are two routes available – the hilly route
is 90km in length and has 930 meters of climbing with gradients of 14%+ in places, the
flat route is 48km in length and has 300 meters of climbing with gentle gradients.
Thanks go to Steve Jefferies, Chris, Jan and Dave Rawlinson and to all the sponsors of
the Rawlinson Bracket: Epic Cycles, Sportest, Bike Dynamics, Nuffield Health, Make
Agency
Pictured above is Nick’s mother and helpers, together with trays of delicious cakes
given to riders after the Rawlinson Brackett. The event raised a staggering £10,792.48
in memory of Nick Rawlinson.
Birkdale School were pleased to make SADS UK their Charity of the Year
SADS UK is grateful to Lee Marsh, Phil King and staff at Birkdale school for raising funds
throughout the year. Their events included the epic Coast to Coast Cycle challenge, where
8 members of staff cycled from one side of England to the other in just one day. It
involved riding 150 miles, with 4500 meters uphill! The charity is grateful to them for
the £3,490.29 donated to help save lives.
33
In memory of Andy Donaldson
Suzy says, ‘We lost Andy Donaldson my husband’s step dad and
Hazels husband he was 49 he died four days after we got back
from honeymoon. He also gave me away on our wedding day.
He was an amazing man who I am proud to have spent 12 years
knowing.’
Suzy comfort ate after his death and decided to do a Slimathon
for SADS UK.
Suzy lost an amazing 5 stone 6lbs and donated £160 through
her slimming challenge.
Photographed are Marie Sutcliffe with Sharon and
Carol Marie lost her daughter to SADS 15 years
ago. A charity night was held in August at Walton
Social Club, West Yorkshire which was enjoyed by
everyone who attended and over £600 was raised.
Marie said ‘Everyone had a fab night raising
awareness and supporting a great cause’.
In memory of Suzanne Duffy
Last October Liam Knight together with Tom Stokes and Matthew Brigham pedalled 328
miles across the Alps in just four days to raise funds for SADS UK. Starting on 25th October
they began their epic cycle from Geneva to Milan – 320 miles across in the Alps. They
covered over 80 miles a day to complete the challenge in 4 days.
Liam said: “The cycle ride was in memory of my auntie (Suzanne Duffy) who passed
away nine years ago from a condition that SADS tries to prevent.
“Putting defibrillators in schools and work places can save someone’s life, so someone
doesn’t lose their life like my auntie did.
“The cycle was the hardest experience of my life for many reasons as we had to deal
with ice, snow drifts the freezing cold. £1,374.60 as at 27th March.”
Ian and Evelyn Duffy, together with their son Steve and daughter in Law Judy, held a
fun day with music and Ice bucket challenge and personal donations also contributing.
Funds raised enabled a defibrillator to be donated to Wisbech Citizens Advice Bureau, with
another donation in the pipeline.
34
In Memory of Charlie Morettes
In November 2014 Allison Spalding held her very
successful annual Tiger Ball in memory of her son Charlie
Morettes. It was well supported with many auction prizes
which raised over £4,330. In total funds received reached
an amazing £10,500.
Allison continues to support schools to put defibrillators
and training in place and supported a significant number
of defibrillators in Kent in memory of her son Charlie.
Ann Stevenson raises funds for
Butchers Shop
Ann Stevenson has been spearheading
raising funds for a defibrillator since
the SADS death of a close relative.
Aiming to put a defibrillator into W.R.
Stevenson Butchers to protect her
community.
Photographed here with like minded
businesses in Weddington who gained
the support of their local community.
In memory of Jake Gallagher
Jakes mother Sarah Pyatt was keen to raise funds in
memory of her son Jake Gallager. She held Jake’s
Bash on Saturday 6th September 2014 6.30pm till
midnight at Charlton Manor Golf Club, in Bedfordshire.
There was a memorial Disco, with childrens
entertainment, disco, raffle and buffet. Live music was
provided by The Wilson Show. She was delighted with
the £2,600 raised as it has enabled her to donate two
defibrillators and training to schools. All Saints
Academy have already benefitted from a defibrillator
due to Sarah’s generous fundraising in memory of Jake.
In memory of Joe Hindmarch
Sharon and Chelsea Allen, together with family, friends and
colleagues raised funds in memory of Chelsea’s Partner Joe
Hindmarch who sadly passed away aged only 24yrs old in July
2014.
Chelsea raised funds from a Zumbathon and Chelsea’s mother
Sharon along with family and friends held a night in his honour
together with selling wristbands, pin badges and donations
raising £518. Joe’s work colleagues at Siemans also donated a
generous £150 in his memory. SADS UK is grateful to them all
for the £933 they donated to the charity in memory of Joe.
35
In memory of Tom Midcalf
Charlotte and Matthew Jones ran the British London 10K in
memory of their cousin Tom Midcalf. Both Matthew and
Charlotte’s employers supported their fundraising
Charlotte said: Myself and Matthew had an amazing day, and
it proved to be quite an emotional one - especially on passing
the finishing line. We’ve both caught the ‘running bug’ and so
no doubt we’ll be in touch in the future to see if we can help you
fundraise for any further events. Charlotte and Matthew raised
£1,059.67 from sponsorship and donations.
In memory of Sharon Fanning
Caroline Killen, Sharon’s cousin photographed here with Darren
Wood, walked together with family and friends to the top of the
Wrekin in Shropshire, a peaceful walk, allowing them to reflect
and remember Sharon on the 1st Anniversary of her death,
releasing balloons in her memory.
Caroline says,
‘Everyone in Shifnal knows we suddenly lost our beautiful Shaz
last year and it really did rock the town. We are going to be
holding events (coffee mornings, car washes, etc to raise funds
for SADS UK in memory of Shaz’.
Craig Twitchett conquers Mount Etna
Craig conquered Mount
Etna for SADS UK in July
2014 and said that as
well as for the personal
challenge it was because
he is aware that SADS
hits many young people,
these people can be fit
and active such as a
young local lad in
Yorkshire who was a
keen cyclist looking to a
good strong professional
career in the sport and
died quite suddenly.
Also, more closer to
home a girl from Craig’s
school who was in his
year also died of SADS.
Craig said ‘The challenge went fine it was brilliant, the traffic was something like I’ve
never experienced before it was worse than London but I made it there and back in one
piece in about 3 ½ hours. The weather was also fantastic though a bit on the warm side
at about 33 degrees C it sure makes me miss it even more now!’
36
Terry Blake raises awareness
SADS UK member Terry Blake spoke on SKY News
about the GoodSam app which contacts emergency
services when activated, as well as people trained in
basic life support who are nearby. An app which alerts
off-duty first responders to serious accidents and
emergencies could save lives.
Thames Training
Dave Jones from Thames Training
donate funds of £54.60 to SADS UK.
Photographed with Anne Jolly is
SADS UK Patron Dr Hilary Jones and
Dave Jones from Thames Training.
SADS UK is grateful to Thames
Training for their ongoing support.
Alan Clark
On Sunday 5th October, training officer Alan Clark
exercised one of his rights as a Freeman of the City
of London. He herded a flock of ten sheep across
London Bridge. Alan expresses his thanks to
everyone who donated to his chosen cause, SADS
UK. Thames staff raised a generous £100.
37
TRIBUTE
In memory of Elizabeth Ann John - Feb 1980 - Dec 2014
Elizabeth suddenly died at the age of 34, in the
peaceful surroundings of her own home. She
was found collapsed face first in her bedroom,
after the alarm was raised that she didn't turn
up for her shift as a carer. She was a very loyal
person, unselfish, kind, and of course beautiful;
every positive word on the planet would be
used to explain her, she did not have a bad
bone in her body.
Elizabeth was extremely committed to her job as a carer, at the local nursing home,
Glasfryn. She would always pop in for a tea, a chat and of course to help, even on her
days off! Always would work extra long shifts to make ends meet there, which eventually
led to her deservedly being awarded 'Senior Carer' of the home; but more or less, was
a counted as a nurse. Me, as her daughter, may not have seen her for a couple of days,
due to her working inevitably and uncontrollably.
Even though being a very busy young woman, she would always have time for me as
my mother, there was nothing too big or too small she could do. Almost everyday, you
would see her face in the swimming pool and would hardly miss taking me to one
swimming session, ever; even if she had work commitments, she would take me
swimming first. Sometimes, it would seem like she would want to go more than me! I'm
sure it is so weird, not only for myself, but for others there on a daily basis, to not have
Elizabeth there too. She will be sorely missed by everyone there as well.
I am overwhelmed with the donations that have been received in her memory, raising
over £800 and for a fact, I know there's more to come as a sponsored swim has also
been organised. In addition to that, there has been many articles published, some
including our two local newspapers, BBC and the Mirror containing the story, which I am
also very grateful for, as they've raised awareness of this rare syndrome. I would also
like to add, that from our two local newspapers, they had the most replies on the story
they have ever received before!
Although, taken tragically too early, in the last 34 years she has graced many people
with her presence on this Earth, and I expect her to have touched many hearts just like
she's touched mine. Considering the short time she was given, the things she has
achieved are endless. If you were to know about half of Elizabeth's life, I'm sure you'd
join me on saying that she is an inspiration, not just to me, but to everyone else here
today. Sometimes she struggled her way through life, but never let it show and picked
herself up, even at the lowest of lows and carried on.
She was an extremely strong woman, she fought for me endlessly. Being a single
parent, I bet was one of the hardest things to do, and at times it was obviously taking
it's toll on her, but she never gave up; I'm so proud of her for that because she was my
mother and father in one, and I know she done a better job than anyone else could have!
Everyone argues and everyone makes up afterwards, and that's exactly what me and
my Mammy did. We would laugh, we would cry and we would shout, but with a doubt I
have many fond memories of her that lay in my heart for forever and beyond. She may
have left me at the age of 13, but she's left a great legacy in my heart and because of
that I'm proud to call her my Mammy.
Her daughter Olivia xxxxxxxx
SADS UK are grateful for generous funds donated in memory of Elizabeth Ann John.
38
DONATION THANKS
SADS UK is grateful to the following:-
❤
In memory of Suzanne Duffy – Ian & Evelyn Duffy, along with their son and daughter in
law Steve and Judi held a charity day, raising £1,200 from the day.
In memory of Louis Carter – His brother Anthony Carter held a 5 a side football match,
raising £561.23
In memory of Ben Hoare – Reverend and Mrs J M Hall – donated £20 in memory of their
nephew Ben Hoare
In memory of Nicole Dawn Hartup - Thanks to the family of Nicole Dawn Hartup who
donated funds in her memory. Nicole sadly died on 23rd May 2014 aged 12. LeRoy
Funeral Donations sent £145.95.
In memory of Paul Marsden - Barbara and Brian Marsden donated £42 from sale of
garden equipment and £100 in memory of their son Paul Marsden
In memory of Christopher George Britton - Donnie, Terri and Ann kindly donated a total
of £788 as part of their fundraising in his memory of Christopher George Britton
In memory of Ryan Bothamley - Julie Carder donated £400 and funded lifesaving training
for coaches at Rotherham United Football Academy.
In memory of Michael Taylor – his wife Rose Molyneux and his daughter Rhianna Taylor
- donated £200 from Wigan Community Choir Christmas Concert
In memory of Emma Brady - Dave and Helen Smith - donated £250, funds raised at
rugby club
In memory of Mark Abbott - Jamie Abbott arranged funds of £1,200 donated by the Royal
Bank of Scotland
In memory of Sam Wright – Elaine & Kevin Wright along with Dani West and Friends of
Sam Wright donated £500 in his memory from a fundraising day held at Noel Baker
School last July.
In memory of Bailey Drew - Emily Drew chose SADS UK to receive £25 from Gedney
Dyke Bingo Club in memory of her nephew Bailey Drew.
Peter Green kindly made a donation of £25 in memory of his wife
In memory of Mr Alexander Dominic Marr - his wife Mrs Anita Ruth Alden kindly organised
for funeral donations to be made to SADS UK in memory of her husband Alexander
Dominic Marr. A total of £507.68 was donated and the charity.
In memory or Erol Bora
Amy Grist completed the Dorney Dash 10k on the 26th July in memory of her late fiancé
Erol Bora who sadly passed away in March 2014. She has raised over £2,700 in his
memory. SADS UK is grateful to Amy and Jean Grist for nominating SADS UK the charity
of the year for the Fleet Townswomens Guild.
In memory of Sam Tarleton - David Tarleton donated £120 in his memory
In memory of Miss Nisha Kachra Overhall Community School Class 4 held a coffee
morning and raised £36.50 in memory of Nisha who sadly died suddenly at the age of
only 28yrs old.
In memory of Lisa Ann Richards - parents Julie and Anthony Hogan donated £50. Paycare
donated £200 towards their goal of putting a defib in at Heath Park School
39
In memory of Tim Daines – Jo Morgan, Tim’ mum Ann Daines and sister Lucy Coaker
held a coffee morning on the 4th December and donated £650 in memory of Tim. Tessa
Daines donated £180 from lecture fees in memory of her nephew Tim Daines.
In memory of Dorothy Horwood – Mrs Shirley Hinge kindly organised donations in
memory of her mother Dorothy Horwood and £295 was donated to the charity
In memory of James Bott - Andrea and Eddie Gladdon generously donated a defibrillator
to Newbottle and Carlton School in memory of James Bott. Andrea wanted to donate this
gift to the school after her retirement.
Ruby Wedding Anniversary - Trevor and Janice Dunning kindly organised for people who
came along to their Ruby Wedding Anniversary to donate to SADS UK in lieu of giving
them presents. They kindly donated £45 to the charity.
Renewal of Wedding Vows - Mr and Mrs Le Grove of A & A Training Ltd donated £108 Mr
and Mrs O’Gorman donated £15
R Walford who donated £400 from their Golf Day.
Deeping Round table who donated £375
Walton Soul Club who donated £600
The Whitehill Ladies Group who donated £70 from the raffle they held to support
defibrillators in schools.
Tim Beard through his year in Captaincy at the Druids Health Club who donated £2,000
to SADS UK.
Coulsdon Medical Practice, Surrey who donated £150 to the charity
Staci Andrews - Quality Solicitors Burroughs donated to SADS UK after a Dress Down
Day raising £73.90
The Saltire Club kindly- donated £100 from their New Year's Day Charity Party
The Crossley Heath School whose Sixth Form Students who run the school’s Interact
Charity Committee kindly designated SADS UK to receive funds £320.66 from their
fundraising.
Helen Whitfield who completed Stoptober and has made this a permanent change. Helen
kindly donated £600 which included £100 from Savills, the company she works for. The
donation was made in memory of her brother who sadly passed away when he was only
29yrs old.
The Chaplaincy, HMS Raleigh who donated $100 from the Church of England Church at
HMS Raleigh, kindly donated by the Trainees and others from the Church of England
Sunday Service.
M Bennett who donated £15 in support of placing so many defibrillators into schools
Thanks to DHL employee Emma Schofield who through a Match it Scheme chose to
support SADS UK and a donation of £240 was made to the charity
Kingswood Evening Group – sent a cheque for £20
£100 donated by Mr and Mrs Brewer, kindly sent to the charity by Angela Hughes
In memory of Connor Ashton - Preston Guild Hall donated £50
Dave Jones - Thames Training SADS UK Collection Pot Donations £89.37
Samantha Thompson and her fiancé Philip donated £180 to SADS UK and had charity
pin badges as wedding favours for their guests.
Printed by Andrew Smith Print Ltd • Tel 01245 600432 • [email protected]