YLife - CORRIE STAR ALI SHARES HER STORY Page 22 - Cardiomyopathy UK
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yLife
Issue 20/October 2019
PIP benefit form tips 7
Paul set for a runner’s high 8
The magazine for people affected by
cardiomyopathy and myocarditis Our winter campaign 22
CORRIE STAR ALI
SHARES HER STORY Page 22
the heart muscle charity
|2 3|
Contact us
If you would like more
Welcome
information on our services,
please get in touch
Call or write to us
Unit 10, Chiltern Court,
Asheridge Road,
Chesham, Bucks HP5 2PX W hen I received the call asking me to write
the intro for this My Life, which is focusing
on the theme of community, I was far away from
01494 791 224
the community that supports me personally.
I was travelling through the Outer Hebrides with only
Helpline
occasional internet and mobile coverage.
0800 018 1024
(free from a UK landline) As we travelled, I thought a lot about how it feels to be
Contents
8.30am-4.30pm, Monday-Friday alone with cardiomyopathy – the worry about what may
happen and no one easily available to help; the isolation
of not knowing anyone else and even the possibility that
communities with a small population could be restricted in
Find us online partner choice if families carried genes for inherited diseases.
www.cardiomyopathy.org It made me doubly grateful that Cardiomyopathy UK are able
to run our helpline, support groups and online Facebook
contact@cardiomyopathy.org groups.
4. Become a regular giver 15. Community Voices
We are also committed to opening more in-clinic services
next year, so that people get support when they most need it
Live chat and we reach people for whom travelling to support groups 6. In-clinic volunteers 18 Tributes to Peter McBride
www.cardiomyopathy.org is not possible.
8.30am-4.30pm, Monday-Friday
It has been lovely to see our community come together 13. When Aaliyah met Pudsey 22: Our winter campaign
to celebrate our 30th anniversary and it’s not too late
to join in.
Social media
Thank you to everyone in our community who supports
others through sharing their experiences; being a listener;
/cardiomyopathyuk volunteering with us; or fundraising to help this small charity
make a big difference.
@cardiomyopathy
Alison Fielding, Chair
@cardiomyopathyuk
Cardiomyopathy UK is a charitable
incorporated organisation (CIO) with
a registered charity no 1164263 This magazine and its plastic wrapper is 100% recyclable
| MyLife
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Sign up to change lives Tribute fund to keep
Monthly giving is one of the easiest ways you can help others Josh’s memory alive
and became a founder member.
She was always grateful for the help and
support she received and never let HCM J osh Deakin died in March
2018 from Left Ventricular Non-
Compaction (LVNC) at the age of
to Abby, and treasured friend to many.
He always put others first and had
get in the way of her life – exceptional people skills, effortlessly
even pruning her fruit trees a week before just 26 – but his memory lives on striking up a conversation with anyone
she died,” added Carol. in the actions of his family, friends and immediately putting them at ease.
and loved ones, who have worked
tirelessly to fundraise in his name.
“As a family, we have supported Since his death, the outpouring of
Cardiomyopathy UK by ‘doing’ the messages from those whose lives Josh
London Marathon. My daughter, her Over the past 16 months, Josh’s loved touched, has been nothing short of
partner and I have walked it several times, ones have shown incredible strength phenomenal and his selflessness and › In the car with
but my son has run it six times. We also by raising a staggering £23,106 for unwavering positivity will live on in the partner Abby Lewis
take part in the charity’s raffles and buy Cardiomyopathy UK through a variety frontline services that his tribute funds will
Christmas cards. of fundraising events – from a charity help to support. Josh achieved much in
football match and BBQ, to clay pigeon his 26 years, including
› One of Carol’s favourite photos of her mum Edie Harbour – ‘She did
“But fundraising through marathons isn’t shoots and sponsored cycle rides, jumble obtaining a BSc in
enjoy a long chat on the phone!’
compulsory – an easy way to support sales, auctions, and much more. Sports and Exercise
Cardiomyopathy UK is with a monthly
‘Their contribution to Science, as well as
the Cardiomyopathy UK
By the end of this our T he story behind every regular
donor is precious to us and many
tell us how it’s their way of giving
donation and we’re delighted our
donations have helped the charity grow to cause will ensure we can
setting a number of
junior athletics records
30th anniversary year, be a force to be reckoned with.” in 100m, 200m, and
something back for the difference the be there for more families
we are looking for 30 long jump.
new donors to give
charity has made Sheila Nardone, Head of Fundraising, across the UK affected by
monthly to save and
to their lives. says: “It’s thanks to families like Carol’s heart muscle disease’ He lived life to the
change lives in the
They find that giving a small amount each that the charity has been sustained over fullest in whatever he
charity’s fourth decade. month is affordable, but over a few years the past three decades. Her regular giving did – a self-professed
it adds up to make a huge difference to has helped us to gradually improve and graphic novel and
Join our community someone’s else’s family. extend our services. “From everyone at Cardiomyopathy UK, comic book ‘geek’,
of regular givers by Carol Wood, 74, from Yorkshire, is one we’d like to extend our sincere thanks Josh enjoyed attending
signing up between of our longest-serving regular givers “Setting up a monthly direct debit is one to all who contributed to this incredible live rugby and wrestling
November 1 and who started giving in 2006. Her mother, of the best ways you can help improve › Josh with his parents and younger brother fundraising and awareness-raising effort events, and was a huge
Elliott on Graduation Day
December 31 – by Edie Harbour, was one of the founding health outcomes for people with, or at risk – we are eternally grateful for everything fan of rock acts like
phoning 01494 members of our charity 30 years ago, of cardiomyopathy, right across the UK.” they’ve done for our cause,” added Alter Bridge, Tremonti,
791224 or donating after she was diagnosed with Hypertrophic “Their collective passion and tenacity in Christie. and Sevendust – bands
via our website – and Cardiomyopathy (HCM). overwhelmingly tragic circumstances has that can now count
we’ll send you a been astounding, and their contribution mum Sue and dad
limited edition 30th “The first sign of her problem was to the Cardiomyopathy UK cause will Steve as enthusiastic
anniversary mug. when she became very breathless while ensure we can be there for more families converts!
travelling on the Underground in London. across the UK affected by heart muscle
There was some history of heart attacks disease,” said Cardiomyopathy UK’s
in her family, but not cardiomyopathy,” outgoing Community Fundraiser Christie
recalled Carol. Jones.(See Page 11)
“She was signposted by Hammersmith Josh was a loving son to Sue and Steve,
Hospital to the newly-formed charity › Carol Wood caring big brother to Elliott, loyal partner › Josh & Elliott in their school uniforms
Fundraising stories | | MyLife
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How Ken is What you need to
giving back know about PIP
O ne of the most common
questions I’m asked on our
Information’ on the form, which is
your opportunity to articulate what
In-clinic peer support
volunteer Ken Pugh is helping
Cardimyopathy UK develop › Ken Pugh receiving his Cardiomyopathy
helpline is, “What should I put on my
form when I’m applying for Personal
your day is like. Some important
points to consider including in a PIP
application for cardiomyopathy are:
UK Community Award at last year’s Independence Payment (PIP)?”
our medical community by National Conference from Dr Will
• If you experience fatigue, be clear that
reassuring patients there is life Bradlow, who set up the in-clinic scheme
I always start my response with, fatigue is not akin to tiredness and
after diagnosis. “What’s a typical day like for you?” The cannot be remedied by sleep or a rest.
Two years ago, we launched the “Patients who may be hearing their biggest mistake people make when
country’s first in-clinic peer support diagnosis for the first time can completing a PIP form is assuming the • Explain why you are fatigued – your
By Ali Thompson
service at the rare disease department experience a range of emotions and DWP appointed assessor will know and heart does not function as efficiently Head of Services
of the Queen Elizabeth (QE) Hospital responses – from nonchalance and understand what cardiomyopathy is. This as a normal heart; the tasks that
in Birmingham. denial, to fear, anger, and even tears. is seldom the case. others take for granted can place
extra strain upon the heart of a person
Ken Pugh is our longest-serving “I’m there to answer questions and I encourage people to take 20 minutes with cardiomyopathy and can result in
volunteer at the clinic, who wanted point patients in the right direction. with a pen and paper to jot down what fatigue, breathlessness, etc.
to “give something back” for all the However, I’m cautious in giving a typical day is like for them: from the To find out
Our volunteer
support he had received since being advice as I’m always mindful that the moment they wake up, to the time • If you are no longer able to socialise more about
diagnosed with DCM in 2002. process is for and about the patient. they close their eyes at the end of as frequently because of fatigue or
community is the day. This means considering the if on diuretics, include this. Social
PIP – if you
a huge part of “I met Dr Will Bradlow at the “Hopefully, I reassure patients following: isolation and feelings of loneliness can are eligible
what makes Cardiomyopathy UK West Midlands that for the majority, there’s life lead to the presentation of emotional to apply and
support group. Will asked if anyone after diagnosis and that a key to • Are you symptomatic upon waking, challenges, so include this and explain.
our services so how to appeal
would be willing to offer peer support managing their cardiomyopathy is are you fatigued?
effective. to cardiomyopathy patients,” Ken to listen to their own body, work • If you identify as having anxiety should your
recalled. with their medical team and learn • Can you put on slippers and walk or depression, but this has not application
about the condition from the range down the stairs? been diagnosed, be clear that you
Turn to Page 10 be rejected,
“I felt that I could fulfil the role by of information Cardiomyopathy UK experience feelings of anxiety or that
to read about making use of my own experience of provides. • Do you struggle to put on socks, your mood is depressed. If you state call Ali on our
our plans to run the condition and having an ICD, as tights, shoes? that you “have” anxiety or depression freephone
well as my skills as a marriage guidance “It’s great that so many patients tell us on the form, you may be asked to
helpline 0800
a new online counsellor for more than 10 years.” what a good idea the in-clinic peer • Can you prepare a healthy breakfast, provide clinical evidence to support
training course support concept is and how helpful or do you rely on breakfast snack this. 018 1024.
Ken can spend anything from a it has been for them,” Ken added. bars, as preparing eggs on toast or
couple of minutes to an hour with “But we’d like more patients to use similar is too physically taxing? • Be clear that any treatment such
patients, depending on how they the service and more people to help, as medication or devices cannot
react to what they’ve heard in their as there are far more clinics held • Are you able to wash and style your cure cardiomyopathy, but rather
appointment with the consultant. that can be staffed by appropriately- hair, or do you need assistance as help manage a condition that will
trained volunteers. raising the arms above the head deteriorate over time.
“Many patients forget what they’ve exacerbates symptoms? And so
just been told amidst the trauma of “Despite the challenges, I really enjoy forth, throughout the day. • If you have an ICD, explain what it is
the moment and only begin to ask being able to give something back and why – to shock the heart into
questions once they return home,” and share a little of my experience These reflections should form part of the a normal rhythm should it fall into a
he said. and talents, such as they are!” applicant’s response to Q15 ‘Additional dangerous, life-threatening rhythm.
Services | | MyLife
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Paul’s guaranteed to
“That started my friendship with
Cardiomyopathy UK,” said Paul, who
ran his first marathon for the charity
three years later. “I have met some
get a runner’s high
lovely people along the way and having
realised what Cardiomyopathy UK does,
I have kept you as my charity of choice.”
Today, with a further 18 marathons
under his belt, the 46-year-old is
taking on his most ambitious challenge
after his friend Sarah Russell told him
about the Himalayan 100, which she
completed in 2014.
“I help Sarah coach her running group
in my home town of Tunbridge Wells
and in return, she’s been generous with
advice and support,” said Paul. Paul also supplements his average › Runner on the trail
weekly running mileage of around that has been called
“Training for the Himalayas means I 30 miles with 35-mile bike rides to the Most Scenic Race
need to up my mileage and I’ve done Southwark Police Station before starting in the World.
nine marathons this year alone as his night shifts.
‘training runs’ and been to the altitude Look out for a
centre in London to see how I cope “I’m getting used to running back-to- follow-up interview
with the lack of air.” back days to give my legs an idea what with Paul in our next
I’m in for. However, my shift work makes issue of My Life.
it hard to have a strict training plan, so I
can sometimes be found running on the
Today, the 46-year-old treadmill in the middle of the night!”
is taking on his most
The Himalayan 100 has been called
ambitious challenge, the most scenic race in the world as
after his friend Sarah runners take in panoramic views of
Russell told him about Mount. Everest, Lhotse, Makalu, and
In 2017, Paul helped
put together a field
of around 50 runners
O ur community of fundraisers
raise vital funds for our
work through a variety of events,
Paul is under no illusions how tough the
race will be as right from Day 1, he’ll face
24 miles of trail running with an altitude
the Himalayan 100
Kanchenjunga – four out of five of the
world’s highest peaks – and despite the
rigours of his planning and preparation,
in the London Vitality gain of more than 10,000ft. Paul knows he’ll enjoy a real runner’s
10k – making history but Met Police sergeant Paul high when he catches sight of them.
for Cardiomyopathy Hollis is taking running for “In all honesty, I’m somewhere between
UK with the charity’s excited and terrified about it and realise
Cardiomyopathy UK to
biggest team of how much I’ve taken on when I see
running fundraisers new heights. people’s reactions when I tell them!” he
to date. admitted.
He has signed up for the
Himalayan 100 Stage Race, which Paul started running in 2010 after
takes place over five days in a knee injury prevented him doing
November, with runners traversing contact sports and martial arts. That
isolated jungles, pine forests, same year, he ran his first half-
villages and major rivers along a marathon for Cardiomyopathy UK after
100-mile course in the foothills of a friend’s stepfather was diagnosed
the Himalayas. with the condition.
Fundraising stories | | MyLife
| 10 11 |
At the heart of our community Familiar face joins › Christie Jones talks
our services team
about his role as our new
If you are
interested in
finding out more,
T he charity is delighted to
announce that we have been
awarded a five-year grant from the
people’s ability to cope and manage
their condition well when they access
Cardiomyopathy UK for peer support.
Community Peer Support
Manager
or would like to National Lottery Community Fund
be notified of the that will see us support 19,500 people The charity is intending to further Tell us a little about your What does your new job involve?
online training affected by cardiomyopathy through increase the number of support groups background? I’ll be working with our volunteers
course when it is the development and continued we offer (whilst maintaining the groups I’ve been involved in the third sector to maintain and grow the charity’s
released, please growth of our peer support via in-clinic, we have) and also looking to create a from the age of 19 – volunteering invaluable community peer
contact our Head phone and support group services. coordinator hub to steer the groups in rural Madagascar teaching support services – our in-clinic
of Services Ali where people are reluctant to take on English and French; leading sports support services; our regional
Thompson at Clearly we have a big job to do and will the sole responsibility of leader. camps for kids in local villages; and support groups; and of course, our
Alison. need lots of help and support to do helping out at a local radio station telephone peer support network.
thompson@ it. This is why the charity is part-way We will also be increasing the number and at an inner-city zoo.
cardiomyopathy. through creating an online training of cardiac clinics we operate within, An essential part of my role will
org course for all our volunteers who by presenting businesses cases to the I became somewhat of an involve collaborating with our peer
provide peer support – existing and new. respective NHS Trusts to demonstrate employment nomad after support volunteers and recruiting stakeholders, such as clinicians
the benefits of having in-clinic peer graduating and tried my hand new volunteers to continuously and NHS Trusts. We will recruit and
The interactive course will help our support volunteers. at finance, IT, advertising tech, adapt our frontline services to meet train new volunteers from diverse
volunteers to understand the roles secondary school teaching and the diverse needs of our service users. backgrounds to provide emotional
available; what is required and how Our telephone peer support volunteers beard oil sales! support of the highest standard,
the charity can support them. will also increase to ensure we have What do you hope to achieve? wherever they are needed.
a more varied cache of supporters to However, no matter where I First and foremost, to improve
Our core services rely on the better meet the increasingly diverse worked, I often dedicated my spare the well-being of those directly What do you do when you’re
empathy, personal understanding needs of the caller. time to charitable endeavours: affected by cardiomyopathy and not working?
and experiences of our community mentoring pupils in inner-city the well-being of their friends, I like to keep active – football,
members affected by cardiomyopathy London secondary schools; family, and carers. basketball, badminton and
and myocarditis and these make a helping primary school children distance running are some of
very tangible, positive difference to in Tower Hamlets to improve Thanks to funding from The my favourites. I’m also a keen
their reading skills; fixing elderly National Lottery Community writer and have had some poetry
residents’ IT issues in a Southwark Fund for a five-year community and short fiction published. I
care home; putting on my own arts peer support project, we’ve also also do a bit of acting when I
festival, and much more! been able to set a number of can – either in small independent
‘Giving by taking’ movement gathers pace Joining Cardiomyopathy UK in
ambitious goals; increase our
number of regional support
productions, or as an extra in
big-budget blockbusters like
January 2018 as a Community groups from 35 to 50; build a Fantastic Beasts and Bohemian
S ince becoming one of the
beneficiary charities for
DrugStars, our community
and/or over-the-counter –
including painkillers, vitamins
and minerals.
Fundraiser was a dream come true
– a chance to begin a full-time
career in a charity that had been
40-strong network of phone
volunteers and establish a
network of 15 in-clinic peer
Rhapsody!
What piece of technology
of cardiomyopathy app users making a huge difference to the support services across England. could you do without/
have earned us more than You can also earn stars by lives of families across the UK for never do without?
113,000 stars that will be giving information to be used almost 30 years. What are the challenges? I’m trying to limit my phone
converted into an annual in research to help improve With ambitious targets come a usage at the moment as I like to
donation of over £1,000. medication. number of potential challenges – be as mindful as I can during my
one of which is to provide effective downtime – although Saturday
You can earn stars by using the Join the ‘Giving by taking’ peer support to the more isolated afternoons are still spent
DrugStars app, which is really movement by downloading the areas of the country. Again, we will frantically keeping up to date
easy to use and free. You use DrugStar app on your phone or achieve this through building upon with the football scores. But I’d
it to remind yourself to take tablet via our existing network of volunteers be literally and figuratively lost
your medication – prescription https://www.drugstars.com and working closely with local key without Google Maps!
News | | MyLife
| 12 13 |
The word When Aaliyah
on the street met Pudsey
Corrie Star Ali Mardell is among those helping
to raise awareness of Cardiomyopathy UK
O ur community of
supporters who are
willing to share their personal
stories in the media – whether
Read more
newspaper, magazine, radio
or TV – plays a vital role in about
creating awareness about the joining our
work we do. community
of media
The internet and advent of social
volunteers › Cardiomyopathy UK Support Nurse Jayne Partridge
media also provides numerous took these photos of the day
opportunities to promote stories on Page 22
even further.
Coronation Street star Ali Mardell (top
right) ran the Great Manchester 10k in
O ur Youth Panel member
Aaliyah Aries, 16, took
part in this year’s Countryfile
10am: Had a safety briefing and
headed to the start line.
› Aaliyah was
interviewed by
presenter Ellie
memory of her father, who died from 11am: We were joined by Pudsey Harrison (top left)
Dilated Cardiomyopathy (DCM)three
Ramble for Children in Need Bear and some bangra dancers to during the mass
years ago, and her story was featured and was filmed by a BBC get us all in a happy mood, then off ramble through the
in The Daily Mirror, The Sun, The television crew talking about we set. We all had matching hats so city of Worcester,
Express, Hello! and Digital Spy. looked a bit crazy and some passers-
her experience of being a by gave us funny looks, but it
where they took in
views of the River
teenager living with DCM. was fun.
“I was ready to raise awareness about Severn and historic
DCM in the hope that it could prevent sights around the
at least one family from suffering. Here is Aaliyah’s diary of the day: Along the way we stopped at various city.
Knowledge is power,” Ali explained. points to film pieces for the TV show.
7.30am: Woke up, feeling a bit nervous I was interviewed (along with my The special
Sheffield support group leader and but excited to raise awareness of mum) and was able to share my Countryfile episode
co-leader Julie Taylor and Sarah cardiomyopathy and looking forward experiences of cardiomyopathy. featuring Aaliyah is
Glossop (right) appeared on BBC Radio to taking part in the Children in Need Mum was able to add her perspective due to be broadcast
Sheffield to discuss their experiences The Metro online – read by ramble. I was glad to see the sun as a carer too. Towards the end, I on Sunday, October
of living with cardiomyopathy and their 1,248,000 across the UK – covered shining as rain was forecast. was lucky enough to meet one of the 27.
wildlife photographers who gave
diagnosis journey. the shocking story of Katie Denial,
me a short masterclass. I hope to put
whose symptoms of DCM were 9am: Arrived at Worcester race course and
his tips into practice soon.
“Receiving support from Cardio- initially misdiagnosed, and our youth met up with my family. We met some of
myopathy UK was like a weight panel member Aaliyah Aries was the production crew and had refreshments
lifted’, Sarah told listeners, while Julie featured in her local newspaper, The whilst we waited for everyone to arrive. 3pm: Arrived at the finish line. I was
discussed how our support groups Milton Keynes Gazette, prior to her pleased I had completed it. I had
and helpline can provide support and BBC Countryfile appearance (see 9.30am: I was introduced to the managed well, but was very tired as it
accurate information. facing page). presenters and had a hot drink. had been a long, but enjoyable day!
Media | | MyLife
| 14 15 |
Our new Christmas Community voices
card range Our Information and Educational Events Manager Adrian Taylor
spoke to Rosie and Elis – two members of our youth panel – at
the first National Youth Gathering to ask them about their views
on Cardiomyopathy UK and the future of our services
Why is it important for Cardiomyopathy the same condition as me. It’s made
UK to have a youth panel? me feel a lot calmer about managing my
‘To produce and aim resources specifically condition. Putting on events such as
at younger people managing their National Conference is a great way to › Cardiomyopathy
condition. The stigma of heart condition get people in the same place and talk to UK Information and
usually relates to older people, and that’s one another about their experiences.’ Educational Events
Manager Adrian Taylor
what you see when you look at most of [Elis]
the current resources out there.’ [Elis]
What difference has knowing more
helped with your condition?
‘It always helps me to know as much
as I can in any situation I find myself
in. Finding out as much as I can about
cardiomyopathy helps me to plan my
life, explain it to others and be okay
with it myself.’ [Rosie]
How do you like to get
information about your condition?
‘I look online. I go to the
Spend over £20 and
receive a free gift! S pread festive cheer far
and wide by sending a
Cardiomyopathy UK Christmas
All proceeds from the sales of
our merchandise go towards
supporting everyone affected
Cardiomyopathy UK website and
other online articles.’ [Elis]
What would you like to see
more of in the future from
Cardiomyopathy UK?
Visit our online card – the perfect way to show by cardiomyopathy, so What help have you received ‘I think more events around the
shop at www. from Cardiomyopathy UK? country and partnering with
your friends and family that whatever you buy, you’ll be
cardiomyopathy. ‘I have received peer support from universities and companies
org/shop for a wider
you support our work. helping us raise vital funds. Cardiomyopathy UK, which I don’t would be great to see.’
selection of cards to think I would have found [Rosie]
choose from Our 2019 catalogue is included anywhere else.’ [Rosie]
in this edition of My Life and ‘More youth-specific events,
features a range of cards for the ‘Cardiomyopathy UK has been maybe even a TV advert to
festive season, along with our invaluable to me – allowing me to spread the word in the same
branded merchandise. see that there are plenty of people way larger charities have got
all over the UK and the world with national exposure.’ [Elis]
Fundraising
Services | | MyLife
| 16 17 |
#teamcardio highlights KEY
Community events
from 2019 Challenge events
September strolls
None of our vital
services would be
possible without
A huge thank-you to our
fabulous fundraisers who
have been raising money
our community of
to support our work in this
amazing fundraisers.
special 30th anniversary year.
Whatever event you
take part in, your The map right, shows how they have
support means more supported our work in 2019 so far,
people affected by
through a wide range of fundraising
activity, including:
cardiomyopathy can
get the information • 141 people signed up to take part
and help they need. in a physical challenge – from
walks to runs, skydives to abseils
and even the famous super
challenges known as Ironman
Triathlon and the Himalayan
100 Stage Race.
• 150 people organised a
community fundraising event, 17
of which raised more than £1,000
and 30 people undertook our
special 30-day challenge.
• 48 Virgin London Marathon
runners raised a record-breaking
£148,571 at the Virgin London
Marathon; 20 runners in the Great
North Run raised £9,300 and 15
skydivers raised £11,502.
• 8 organisations chose us as their
charity of the year.
• 12 people organised an annual
community fundraising event
such as a sports tournament,
dance or music event.
• In December, help finish 2019
on a high, by signing up for a
Christmas fundraiser, or run Santa
in the City over the Millennium
Bridge? (Details on Page 20)
#teamcardio || MyLife
MyLife
| 18 19 |
Tributes to former Protect yourself against
chairman the cold weather
Former Chief Executive Robert Hall,
who worked with Peter from late
2003, said: “He became a valuable
and supportive colleague, as well as a
dear friend.
“Many people who attended the › Cardiomyopathy
charity’s events during this period will UK Support Nurse
remember Peter as the person who Jayne Partridge
introduced and closed meetings, often
with jokes about his own driving. Experts are
predicting this winter
“This was his public persona. His could bring the
main contribution, however, was in coldest weather for
the background where he showed 30 years.
a tremendous level of personal
commitment to the charity’s cause, Cardiomyopathy UK
travelling miles, often at his own has further advice
expense, and displaying a deep on our website –
compassion for people affected by
cardiomyopathy. W ith flu season just around
the corner, our specialist
nurse Jayne Partridge offers
contain a combination of drugs, which
can include aspirin and ibuprofen.
‘Protecting yourself
against the cold
weather’.
“He was instrumental behind many advice on how to protect your It is a good idea to check with your
Peter touched
many lives and had
a transformational
W e are extremely sad to
announce that former
Chair of the charity, Peter
of the initiatives introduced to assist
people and increase the charity’s
relevance to those it sought to serve.
heart during cold weather. pharmacist to ensure that there are no
interactions with your usual medications
before you take any over-the-counter
impact on the McBride died this summer. Colder weather makes your heart medications.
charity. “That the charity has continued to thrive works harder to keep your body
We asked some of those he
is a significant part of his legacy.” warm, so as a result, your heart rate The flu vaccination may be
If you would like to
worked closely with to share and blood pressure may increase. recommended for you by your GP or
share your memories their thoughts. Joel Rose, Cardiomyopathy UK Chief your cardiologist as it may be of benefit
of Peter we would Executive, worked with Peter towards the These changes can sometimes make to people with a heart condition.
love to hear them. Current Chair of trustees Alison end of his time as Chair of the charity. your heart-related symptoms worse
Fielding paid tribute to Peter’s long- and can sometimes affect how your The vaccine encourages your body to
Please contact term commitment to being Chair: He said: “Peter was exceptional at heart copes with doing everyday develop an immune response to the flu
us at contact@ “Peter gave his time and accounting seeing possibilities; deals that could things. virus. This won’t stop you catching flu,
cardiomyopathy. expertise over 11 years. be done, connections and networks but will help your body to fight
org that could be made to grow the If you are concerned about any new the virus if you do catch it.
“He was passionate about spreading charity and help more people. or worsening symptoms and need
awareness of cardiomyopathy and advice, contact your doctor’s surgery If you feel unwell with the flu and
each trustee meeting invariably “He had huge ambitions for the or GP out-of-hours service. are concerned about any increase or
started with him telling us about his charity and an infectious change in your symptoms, see your
latest discussions with people whom enthusiasm that made him a While cold remedies are used to relieve GP or out-of-hours contact 111 or 999
he met on his extensive travels.” pleasure to work with.” the symptoms of a cold, they often for assistance.
News | | MyLife| 20 21 |
London Marathon
Applications for the 2020 Virgin
London Marathon are still open.
Congratulations to our
Do you have what it takes? Don’t
miss out on this opportunity to take
on the world famous 26.2 miles
raffle winner Heather
around the capital by filling out
our application form for one of our Every raffle ticket
charity spots. sold really does make
a difference and will
Please put as much detail as possible mean we can help
in your application as we do receive more people that
a high number of applications. need us. Thank you
to everyone who
Were you one of those lucky bought and sold
individuals to get a ballot place? tickets for us.
If so, we would love to have you as
Are you up for
part of #teamcardio taking on this
huge challenge in a Cardiomyopathy
UK vest and help families affected
by cardiomyopathy.
a challenge? Here’s how we can support you:
Sign up to an event and Santa in the City • Cardiomyopathy UK
help us raise vital funds Want to get in the festive spirit early performance running vest
to support our work. this December?
• Full fundraising pack including
Then why not join our team and take London Marathon guide,
part in Santa in the City? A joyful sponsorship forms, banner
Call our festive run across some of London’s and event posters › Ross Morgan, Heather Sim and her husband Nick Morgan
Challenge historic sites, a perfect occasion to get
Events friends and family together to really • Support from our dedicated
Fundraiser
Becky Bryant
on 01494
get in the festive spirit this Christmas!
And most importantly, you get to do all
of this dressed as Santa whilst raising
fundraising team to help you
smash your target W e’re delighted to
announce Heather Sim
has bagged £500 as the winner
We recently met a young artist
whose parents were volunteer members
of the Cairngorm Mountain Rescue Team
791224. vital funds for Cardiomyopathy UK. • Training day of our summer raffle. and she was exhibiting her amazing
with our paintings of the mountains to help raise
coach Sarah funds for their work.
Russell “It was such a surprise to get the phone
call telling me I’d won the first prize and “Our son Ross, who has hypertrophic
• Cheering since then, I’ve had numerous thoughts cardiomyopathy, has always enjoyed
points along the route with the about how to spend the money. hill-walking and has recently taken
loudest support However, there is one idea that I’m up climbing, which he is loving.
liking the most,” said Heather. So I’m going to use the money to
• Post-race reception on the commission a painting from Elizabeth
day complete with showers, “A few years ago, we moved to that is inspired by Ross, by his heart
sports massage and food the Highlands of Scotland where we and by our family’s enjoyment of the
live in a house with views of mountains and I will also be making
the Cairngorm mountains. a donation to Cardiomyopathy UK.”
Fundraising | | MyLife| 22 23 |
Winter Our clinical
2019 community
Bringing healthcare professionals
Campaign together to develop the next generation
of cardiomyopathy experts
If you would
O ur media work is all
about saving lives. If
we can get more individuals
The charity is encouraging people
and GPs to ‘think heart’ if they see
lingering flu or flu-like symptoms,
T his issue of My Life
features stories of how our
community fundraisers help
UK Chief Executive Joel Rose.
The group does this by providing
clinical insight and ensuring our
like to be a to recognise the signs and
along with symptoms such as
the charity grow; how our work is appropriate, helping us to
part of our palpitations, dizziness, swollen keep up to date with developments in
symptoms of cardiomyopathy community services ensure that
ankles, or shortness of breath. treatment and diagnosis and giving us
campaign and then people with the condition we can reach more people with a real understanding of changes on the
share your story will be diagnosed quicker. With cases of flu set to spike this the condition; and how our ground.”
year, we are concerned that a lack of community of media volunteers
with the media,
This means that they do not have to public awareness of the condition, help us to spread our life-saving In the past few years, the clinical advisory
please call run the risk of going without the care in particular myocarditis, will cause awareness messages. group has met to discuss a range of
Kerry Allan on and treatment that they need. people to brush off signs of the big issues, such as how we can provide
› Professor Perry Elliott
01494 791224 condition as flu and not seek the help more training to doctors; what a great
Last year, our national media campaign they need. Another community of supporters who cardiomyopathy service should look like and
‘Heart Bleeps’ focused on some of the play a vital part in our work is our clinical how we can do more to support research.
misconceptions around cardiomyopathy As part of the campaign, we will run a advisory group.
and how these misconceptions can lead national survey of the general public The group is also there to listen to the
to delays in diagnosis and make living to look at how people respond to flu- The group, chaired by our President, feedback that we give them from our
with the condition even more difficult. like symptoms; whether they put off Professor Perry Elliott, brings together national surveys, or from individuals
going to the doctor ;and whether they some of the leading healthcare who use their services, and discuss
We were really pleased with the go back to the doctor if symptoms professionals with expertise in how they can improve the support that
response that our campaign don’t go away. cardiomyopathy and myocarditis. they can give.
received and the coverage we
achieved in national and local media. We will also be using a number of They represent a wide range of clinical One of the most exciting things about
case studies of individuals, who will centres from all across the UK and a the clinical advisory group is the role it
This winter, we are running a new be sharing their own story of wide range of disciplines, including plays in developing the next generation
awareness campaign highlighting the how they were diagnosed with senior clinicians, cardiac nurses, of cardiomyopathy experts to ensure
symptoms of cardiomyopathy. myocarditis and cardiomyopathy researchers and geneticists. more clinicians choose to specialise in
when they just thought that they cardiomyopathy and myocarditis.
We will be telling people how it is had the flu. “The purpose of this group is to help
especially important to be aware of the charity’s work to campaign for That way, we can be confident future
these symptoms during the winter We are still looking for individuals better access to quality treatment and generations get the expert help
months, when cardiomyopathy and who are happy to share their own provide the best possible support and they need and we continue to make
in particular, myocarditis can be story as part of this campaign and information for anyone affected by progress in detecting and treating
mistaken for flu. our ongoing media work. cardiomyopathy,” said Cardiomyopathy the condition.
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