BraveHearts

Plus See who’s in Katie’s Club this month p3 and our amazing community and corporate fundraisers on pgs 4-6

Meet adult patient and restoration man Colin Clewes p8-9

Update on adult patients from Dr Kate English P10

Issue 14, Spring 2016Registered charity 1148359

Account Name: Children’s Heart Surgery FundYorkshire Bank, Doncaster Sort Code: 05-04-14Account Number: 24204715

Remember to reference your company/name.

Here are a few of the heart heroes who have been treated at the Leeds Congenital Heart Units recently.

They include Elsie, who was born with severe mitral regurgitation on 5th August 2013. She had open-heart surgery on 2nd February and had to have more surgery on 25th February to remove a build-up of fluid. Elsie is now doing really well, has been back for follow-up appointments and will carry on to have regular check-ups. She might need further surgery when she is older.

All the children who have surgery at the unit receive a Katie Bear, medal and certificate. If you’ve got a photo you’d like us to consider for a future issue, send it to bravehearts@chsf.org.uk – thank you!

Inside this issue...

2 3

CHSF01 £5Donate now, text

Katie’s Club

4-5 A snapshot of recent fundraising events.

6 Introducing Ellie - Corporate Fundraiser.

7 A guide to fundraising.

8-9 Read the story of our cover star, Colin Clewes.

10 Read our interview with a Senior Adult Cardiologist.

Welcome

For some time now, I have wanted to make you aware that CHSF supports adult congenital patients, as well as babies and young children. You will notice that this edition is focused on them and includes interviews with an adult patient as well as an adult congenital cardiologist. I hope you find these articles informative. We are always interested to hear your views on what you would like us to cover for future issues, this is your

By Sharon CoyleChief Executive Officer

Colin Clewes is a 35 year old buisness owner who was diagnosed with congenital heart disease when he was a baby. Colin tells us more about his zest for life and his achievements.

to 70070

magazine and we welcome your feedback. Please email info@chsf.org.uk

This year, the charity is widening its fundraising

opportunities, with corporate fundraising being one of our main focuses. In this issue, Ellie Brown, CHSF’s Corporate Fundraiser talks about how companies can benefit from a strong business to charity partnership.

I would also like to pass on our huge thanks to those of

you who took part in 2016’s Wear Red Day. We would like to make a final announcement soon, so please make any outstanding payments by using the following bank details.

Joshua Stephenson aged 7 years old had a Fontan procedure in January 2016.

Jacob Macdonald had Tetrology of Falot. His operation in June 15 was a complete success.

Alife Holland age 6 had Fontan

completion surgery in

November 2015.

Isabella Asquith had surgery at 10 days old, she is now 9 months and thriving.

George Sutton had surgery to fit a pacemaker in January at age 21 months.Elsie Douthwaite age 2 1/2

years had mitral valve repair

(OHS) in February.

Taniesha Thompkins Jallow is six months old. She has pulmonary anetresia double right outlet ventrical AVSD.

Rebecca Hartley’s son, Jack, is now 2 years old. He was born with a hole in his heart and needed surgery at only a few weeks old. Knowing how CHSF helped her own family, Rebecca started a fundraising committee in Harrogate. She said:

“My idea was for local CHSF supporters to work together to raise funds and awareness for the charity by pooling ideas and resources. It’s also a great way to get to know the other local families.

We held our first meeting in April at a local child-friendly cafe so that our children could get involved. We’re aiming to start with a coffee morning, a quiz and a Christmas Fair. People only need to commit as much time as they can spare, and can

dip in and out.”

Following on from the success of the Harrogate Fundraising Committee, families and supporters from Bradford are starting their own too.

Please contact us on info@chsf.org.uk or 0113 3925742 to express your interest about setting up a local fundraising committee. Our

Community Fundraisers can give you all the help you need. Read page 7 for further fundraising ideas.

Regional fundraising committees

Cover star

to our Spring edition!

Supporting our region – this map shows the area covered by Children’s Heart Surgery Fundwww.chsf.org.uk

visit our website

4 5

thank you!To all our fundraisers...

Isabella (front, right) was born with CHD and is the inspiration behind the annual Harrogate Halloween Ball.

This year it raised an amazing £19,500. WithIsabella are her sisters Olivia and Mia. On the back row are Kevin Watterson (Isabella’s surgeon), Patti Cook (organiser of the Ball), Tim Hayhood (head of PICU). Jo Birkett (Adult Congenital Nurse Specialist) and Andy Cook, (Isabella’s dad).

Hill House School in Doncaster took part in World Book Day and donated the proceeds to CHSF.

Surrey half marathon runnerClaire Bickerstaff said:

“I smashed my target to finish in 1hr 43mins. I am so overwhelmed by the generosity of the people that have donated thus far - sitting at over £700 and the money keeps coming in.”

£700

Nabby Moore and Pat and Alison Collins raised £2,440.

Anton Maree, head teacher of Ackworth School gave CHSF a cheque for £1,120 from a fundraising week in school.

£1,120

Leeds Jewish Representative Council held a football tournament at the Leeds Grammar School in January and raised money through sponsorship and events on the day.

£1569.80

£19,500

The Goodwin family donated a fantastic £10,000 towards CHSF's Keeping the Beat campaign. Their daughter Martha had surgery in January 2015.

£10,000

George Hinkins is now two. His mum and dad donate £100 to CHSF every year on George’s birthday.

£100

A massive thank you to all who took part in Wear Red Day 2016.

Community fundraising

We were thrilled to see the whole of Yorkshire turn red, schools, businesses and community groups all pulling together. So far we have collected just over £32,000 from all of your efforts, we couldn’t have done it without you!

Lucy Marshall organised a party and received £478 rather than birthday gifts.

£478

Give a Gift donated £15k to CHSF's trustees raised through community events.

Haris Yasin donated £60 saved up from his pocket money.

6 7

This is from Morrish & Co SolicitorsPaul Scholey, senior partner

“CHSF is close to our hearts and carries out fantastic work. We regularly help with activities like decorating the heart unit so we get to meet the children and families and see first-hand how CHSF supports them.”

Andrew Lathem, chief executive, icelolly.comIcelolly “All of us at icelolly.com are proud to support the extraordinary work of CHSF. We send our very best wishes and pledge our continued support.”

Asda – Asda raised £5377 which helped to buy a resuscitation trolley for children.

M&S Food in Guiseleydonated almost £2000!

Morrish & Co solicitors decorated the cardiac outpatients’ children’s waiting room for Easter and did a wonderful job.

NHS Supply Solutions -NHS Supply Solutions raised over £5000 which went towards an exercise bike for children.Leeds Teaching Hospitals NHS Trust said: “Thanks to CHSF, we can now assess the heart function of children with heart disease. The size of the paediatric bike means even very young children can use it and those that have tried it have loved riding it!”

Doncaster Classic VW Festival Fundraising Event Adam’s parents said:

“Following Adam’s open-heart surgery, we wanted to fundraise for the wonderful team at the LGI, at CHSF and to help other families.

We held a stall at the classic VW Doncaster festival with prizes donated by family, friends and local businesses. We charged £1 to sign a white Beetle which now advertises for CHSF when it’s driven around!

In total we raised over £900 – it’s extremely gratifying to know we help other children born with a poorly heart near us.”

“Hi I’m Ellie Brown, Corporate Fundraiser at CHSF. I joined the team in October, and was formerly at Barnardo’s where I was responsible for corporate volunteering.

CHSF works with some fabulous businesses and organisations who support us in lots of different ways and my aim is to increase our partnerships and raise more funds.

I’d like to welcome the new partners we brought on board recently: YPP Lettings and Investments, Bridgfords, Centrica, and Smart Arts. We’re delighted to be working with you!

If your place of work is looking to support a local charity, then I can come in to give a talk about the work we do.” Please get in touch. E: ellie.brown@chsf.org.uk T: 0113 392 3179.

TD Direct Investing has supported CHSF for over 8 years. They decorated the children’s ward for Valentine’s Day.

B&Q distribution centre – Russell Swan’s little boy Charlie has congenital heart disease. Russell and his colleagues at B&Q in Doncaster raised £701 through their Christmas raffle.

Russell said: “The CHSF is a fantastic charity that makes a very stressful time more bearable.”

steps to becoming a

fundraiser7Think about activities your family

and friends might like to take part in.

Pick something fun to do

2.

Set a date, a time and pick a venue

When and where would be most convenient to attract supporters?

3. Tell everyoneRegister your event with us so we can send you

fundraising tools. • Ask family and friends to help. • Tell your local community, post your event

on our social media pages, tell your local press and radio. We can also create a page about your event on our website.

4. Enjoy the event!

Remember why you are doing it - inspire your supporters.

5. Pay in your money

We ask for all monies raised, to be paid in within 60 days. You can do this:

• By bank transfer: See page 2 for our bank details.

• Donate online: www.chsf.org.uk

• Send a cheque made payable to ‘Children’s Heart Surgery Fund’

• Bring the cash to: Children’s Heart Surgery Fund, Room 003, B Floor, Brotherton Wing, Leeds General Infirmary, Leeds LS1 3EX.

6.Thanks to fundraisers like you, we can help babies, children

and adults in our region affected by CHD. You have made a real difference.

Be proud!

1. 2.

Follow us on social media, read BraveHearts, join our organised events, set-up another event,

regularly donate and enter our lottery.

“

“

7. Keep in touch!

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How did you feel when you found out? I never really found out as such, it’s always been there and as such it has become part of being me.

Did you think it would ever limit you in what you wanted to achieve in life?

Maybe it’s a Yorkshire thing but getting on with it is so, so important. As such, limiting what I want to achieve has never even crossed my mind. After each operation my parents dusted me off and taught me to get on with life and that has stuck with me to this day.

What treatment did you have for it?I have had repairs to the aorta, a patch inside the heart

wall to correct poor plumbing and currently take blood pressure tablets to control high blood pressure and help with the arrhythmia issues.

Can you tell me anything more about your stay in hospital? What was the hardest moment?

I can tell you that my stays in hospital were scary, lonely, never easy but the nursing staff were always fantastic. The hardest moment however was one Easter on the ward. I remember smashing a giant Easter egg up for us all to share, but at the same time, becoming aware of how sick another boy in the next bed really was. It frightened me and that night I will always remember crying into my pillow as the reality of seeing him so poorly made me realise how short some of our times can be.

When did you find out you had congenital heart disease?I don’t think there has ever been a moment in my life

that I could say I found out I had congential heart disease. There were conversations I can remember with consultants and my parents as I sat there as a child, and over time you just become aware.

My condition was diagnosed when I was just 11 days old when I suddenly became extremely ill and had to be rushed by my parents to hospital.

Lucky for me, a nurse who had just undertaken a placement with the cardiac surgery team at the hopsital in Louisville recognised my symptoms and before my parents could blink I was in theatre having the first of my aortic repairs.

Since that day, over 35 years ago, I have undergone two more open heart surgeries, both at Leeds back in the day when everything was at Killingbeck.

“After each operation my parents dusted me off and taught me to

get on with life and that has stuck with me to this day.”

Colin -6 weeks post open heart surgery

Colin Clewes

That stuck with me but you can’t change the past and I wouldn’t if I could as I also remember plenty of laughs and smiling faces in the hospital.

Did you have any further treatment, or will you need any?To date I have had three lots of surgery. I have a valve

that is probably not going to last the course and may need swapping but all being well I hope to avoid any more surgery for a long while yet.

Can you tell me more about your project and taking part in George Clarke’s Restoration Man?

My project for the last 18 months was converting a Baptist church in Oxenhope into my family home. We took the project on after I persuaded my wife that the space it would give us as a family would be amazing to bring our children up in.

Did you ever think you could complete the project? Yes, from day one I never doubted it once that it could be

done. That seems crazy but even on my dark days I knew if I could just raise the money I could build most of it myself and the rest I would have to figure out as I got there.

Did you think you could achieve the things you have, knowing that you had congenital heart disease?

I can remember a long time ago someone asking me if I would change my condition if I could. As a child I would have certainly said yes. However when this was asked of me years ago as an adult I realised my answer was now far different. No, not for a moment.

That might seem strange to most but everything that has gone before is part of me. Every moment is something I can call upon when life kicks back. The still moments, pauses in conversations with consultants, silences while they do another scan, test or “just check something” are there. They help me most of all as the hardest times have shaped me into believing that I can and it’s down to me getting on with it.

What else would you like to achieve in the future?Ha, the list is endless! Ideas are easy and the

opportunities out there are all around, it’s just keeping focused that is hard.

What would you say to parents who have children with congenital heart disease, should they worry about what their children can achieve?

Simply don’t worry. What is achievement? It’s different to all of us. What I see as an achievement is far different to the person stood next to me. I set my targets stupidly high. I know this but need to push myself always.

Just because they have a congenital heart defect so what? Give your children belief. With a belief they can achieve anything and they probably will.

I am 6ft4”, 16 stone and far from the weak baby that at 11 days old was in heart failure fighting to live.On the wall in my office are a few words that to me sums up the difference between those who do and don’t.

It simply says Hello.... We believe.. The impossible is often the untried.....

35 years ago, the impossible in medical terms for congenital heart patients was far different to today. So tomorrow’s impossible will be far different again. Please, please don’t limit what you think your child can achieve as you’re the one then who is then limiting them. Give them strength, believe for them and they will surprise you without a doubt.

Is there anything you would like to say about Children’s Heart Surgery Fund?

Yes, the team achieve far more than you realise and have always been there for the unit when needed. Leeds and its patients are lucky to have a charity like them attached to the unit.

Thank you to Colin for all his support over the years. He has given so much to CHSF - his time, his support through our campaigning and not to mention all the free marketing materials he has provided through his company Pennine Signs. For all this we are truly grateful!

8

Interview with

Colin Clewes is a shining example of an adult living with congenital heart disease that still grabs life with both hands – and enjoys the ride! Colin has had a coarctation repair, a

partial anomalous pulmonary venous drainage repaired and he has a bicuspid aortic valve. He tells us about living with CHD and

what he’s achieved – including appearing on Ch4’s Restoration Man programme which featured his Edwardian Baptist church in West Yorkshire which he converted into a beautiful family home.

10 11

An ever expanding service

We met with Dr Kate English, consultant cardiologist at Leeds Teaching Hospitals NHS Trust.

We find out that there are more adults living with congenital heart disease than ever before.

Kate tells us how this is impacting on the service.

Over the past 25 years, developments in children’s heart surgery and medication have made huge improvements to the life expectancy of infants born with congenital heart disease. As a result, there are now more adults living with congenital heart conditions than children - and numbers are expected to go up every year.

We met with Dr Kate English, Consultant Cardiologist at Leeds Teaching Hospitals NHS Trust, to find out how this is impacting on the service.

Kate said: “The numbers of adults with congenital heart disease have gone up and up, and that’s because more and more children are surviving childhood, even when they’re born with very complex conditions. Forty years ago, 80 per cent of babies born with a severe or complex congenital heart defect would have died by age 16. Now, more than 80 per cent survive to adulthood.”

This means that the adult congenital heart disease (ACHD) service is expanding at a rapid rate.

Kate said: “We take about 400 new referrals a year here, have over 6,000 current active patients, and perform more than 100 congenital operations and 130-150 keyhole procedures a year. It is expected that the numbers of adults living with CHD will continue to rise until 2050, when the numbers will plateau in line with the number of births.”

This will inevitably have an impact on the size and scope of the ACHD service. It has already experienced significant growth over the last decade, doubling the amount of surgeries performed and increasing the number of outpatient clinics from three per week to ten per week.

When Kate started at the trust as a consultant in 2006, she was part of a team that totalled just one and a half. Now, ten years on, the team are about to employ a fourth member to meet the current demand in the department.

Kate continued: “The paediatric service does lots of work in outreach clinics, where consultants go and see patients in different places. We struggle to do that because we simply don’t have enough staff. Many people find that to be the biggest difference during the transition between paediatric and adult services, so our next goal is to increase the amount of outreach that my team can do.”

When talking about why she chose to specialise in ACHD, Kate said: “Adults living with congenital heart disease are an interesting group of patients, because although they’ve been born with something life-changing, they are very used to living with the symptoms, so they live life to the full.

- an interview with Dr Kate English

A new telemedicine link that will allow doctors to provide clinical healthcare from a distance is now available in Yorkshire – and is the first of its kind for the county.

Children’s Heart Surgery Fund has donated £11,000 towards a telemedicine link between the Bradford Neo-Natal unit and Paediatric Cardiology department at Leeds General Infirmary.

The link will allow live video communication and sharing of echocardiography images between sites and is included in

the 2015 NHS Congenital Heart Disease standards. The funding will provide the necessary equipment for both Leeds and Bradford. This comprises of a telecart (Bradford) and HD camera screen (Leeds).

Dr Sam Wallis, a Consultant Neonatologist and Paediatrician with expertise in cardiology is behind the project. Together with Dr Helen Jepps they provide the current inpatient and outpatient PEC service in Bradford for paediatrics and neonates. They see over 1000 patients per year including performing echocardiography, and managing new diagnoses and referrals.

Dr Wallis explained how the link works “The paediatricians in Bradford carry out echocardiograph scans of the babies in their care and the telemedicine link would enable the cardiologist in

Read our interview with Colin Clewes, he’s had heart disease since he was a baby but completely lives life to the full – see pages 8-9.

Maintaining good relations with our local MPs through regular visits plays a pivotal role in helping them to understand the work carried out across the Trust.

It was on this basis that Stuart Andrew MP came to Leeds Children’s Hospital to have a look at recent improvements in children’s congenital heart services meeting LTHT Chief Executive Julian Hartley, visiting staff on Ward L51 as well as the Paediatric Intensive Care Unit (PICU).

Stuart was impressed by the progress since his last visit to the facility, when the PICU was still under construction. He discussed progress with the implementation of the latest NHS England congenital heart service review and plans to enhance the unit further, and chatted with parents about the care they are receiving.

Leeds to see the scans in real time.The cardiologist would then be able to give advice about the results, make decisions about next steps and talk to the parents about the baby’s condition.”

The funding comes after a successful three-week pilot. During this time, the link enabled a cardiologist to allow a baby to remain in Bradford and have regular scans rather than having to be immediately transferred to Leeds.

Despite there being just 10 miles between the two hospitals, the telemedicine link removes the need for travel, thereby reducing the risk of moving some babies between sites.

“They don’t let their heart conditions dictate what they’re going to do, most of them have a full family life, lots of them have children of their own, work in interesting jobs, go to university, go travelling, participate in sports and are usually very, very positive in their outlook.”

Adult patients Amy Ball and Andrea Firth

First telemedicine link for Yorkshire!

He also met fundraisers from the Children’s Heart Surgery Fund who do so much to support the facility.

Sharon Coyle, Chief Executive of the CHSF, said: “It was great that Stuart could join us to take a look around the unit. Stuart’s as well as other MPs’ support meant an awful lot to our families during the Save our Surgery Campaign.

“Over the past few years, the team at CHSF have been able to support paediatric cardiac surgery here in Leeds in so many ways, so it’s great to be able to showcase our work to high profile figures.

“We will continue to work with people across the city to ensure that this vital service can continue to provide the very best possible care.”

Stuart Andrew MP visits

Children’s Heart Unit

Come join us - get involved...

Children’s Heart Surgery Fund Room 003, B Floor, Brotherton Wing,Leeds General Infirmary, Leeds, LS1 3EX

E: info@chsf.org.ukT: 0113 392 5742

I want to ride my bicycle...

The White Rose Cycling Event, Ilkley

Reg fee £30 Sponsorship £100

The World Triathlon Leeds 2016

Individual and team places from £50

I would walk 500 miles...

Yorkshire 3 Peaks Team Challenge

Yorkshire Dales. 24.5 mile walk. Reg fee £25Sponsorship £150

Superhero Walk

Temple Newsam, Leeds.Reg fee £10 per family (2 adults & 3 children)Sponsorship £50 per family

We could be heroes...

12 June 26 June

15 Julyget in touch with Ben for more details: 0113 392 8516 or ben.andrews@chsf.org.uk

04 September

Born to run (swim and cycle)...