are asking for CHD patients and their families to give feedback on our region’s CHD services.

And who better to ask than our fantastic supporters! You can help in two ways:

1. The network is working with NHS England to promote an online survey: www.chdpatientsurvey.co.uk. We would be grateful if you would complete this survey if you (as an adult congenital patient, or your child) have recently been in the hospital or have attended the Outpatient department at Leeds General Infirmary. It would really help to get feedback about the service.
2. Another of the network’s aims is to listen to patients and families. And their questions to people who have used and benefitted from the Leeds Congenital Heart Unit (LCHU) are:

• HOW can they get feedback from you on what works well and how to make improvements in the service?
• HOW can they feedback any changes that have been made?
• HOW can they best work together with you?

Jo Quirk would love to hear from you on this, and her contact details are

.

Jo has recently been appointed as Lead Nurse for the network, having previously worked as a Cardiac Nurse Specialist at the LCHU for both paediatrics and adults with congenital heart disease.

Here’s the background to the network…

This is a new role for Jo, and she is currently travelling around the region and meeting staff in the 17 hospitals that are part of the network. She is also visiting clinics and talking to families after their clinic appointments.

Jo works closely with the clinical team of doctors, nurse specialists and other members of the team such as physiotherapists and psychologists.

The network comprises a small team – Lead Clinician Dr Elspeth Brown and Network Manager Debra Wheeler. Its aim is to deliver high standards of care throughout the region based on Congenital Heart Disease NHS England Standards (2016).

The standards relate to equity of care and care closer to home and that’s why working together throughout the network is important.

Thanks for reading, you can read more about the network at:

.

It’s #FundraisingFriday and that means it’s time to celebrate our fantastic supporters. Read on to find out what they’ve been up to!

Leeds University Lacrosse Team 

The Leeds University Lacrosse Team recently supported Children’s Heart Surgery Fund as their charity of the year. Over the year, they have organised raffles and collected donations at their Lacrosse social events.  They’ve been a great team to work with – big thanks to everyone involved.

Lauren and Family

Lauren and her family organised an Afternoon Tea Party in memory of Anna Sophie. They baked cakes, sold merchandise and had a great day with family and friends.

“18 years of missing you Anna Sophie”

Thank you to Lauren and family for your support.

Pontefract Lioness Club

Vanessa and the Pontefract Lionesses organised a

at their local Morrisons supermarket. Thank you all for giving up your Saturday to raise funds on behalf of Children’s Heart Surgery Fund!

Sian Morris – Switalskis

Sian Morris and her colleagues at Switalskis Solicitors have been supporting Children’s Heart Surgery Fund for over a year now. Next week Sian and her colleagues will set off on a 3-day cycling challenge across Yorkshire to raise funds for the charity! Thanks for your support and best of luck with your challenge.

Thanks again to everyone for sharing and supporting Children’s Heart Surgery Fund! Would you like to be featured on #FundraisingFriday? Please e-mail us at bravehearts@chsf.org.uk – we look forward to hearing from you.

Casey O’Neill is May’s Fundraiser of the Month. Read on to find out why!

Casey’s son Freddie was born with a hypoplastic aorta and

.

Freddie had two bouts of open heart surgery very early on in life (the “Norwood” procedure at 6 days and the “Glenn” procedure at 8 months), and he requires more surgery later in life.

However, he has surpassed his initial prognosis and gone from strength to strength.

Casey told us:

“CHSF came into our lives the day Freddie was born, always present within Ward 51 and making a tough journey that little bit easier. Having put myself and Freddie’s dad into accommodation, we could stay as close to Freddie as possible which was very comforting to us. They also presented Freddie with a medal, certificate and CHSF bear after his operation. Although he was a baby and had no idea, this was a special touch for me and his Dad, and shows every patient is thought about.”

After these procedures, Casey wanted to say thank you to Children’s Heart Surgery Fund (CHSF) and the Leeds Congenital Heart Unit (LCHU) for saving his life by giving back as much as she could:

“In 2017 Freddie’s dad Zach and a few friends completed the Yorkshire Tough Mudder raising £2,000 for CHSF. Freddie and I cheered them on from the sidelines. In January 2018, I hosted a Temple Spa charity night, where every guest received a facial, raising £400. Most recently I held The Little Hearts Ball in April, a fabulous evening to celebrate our amazing boy, supported by Freddie’s friends and family along with local businesses, raising around £3,500. This has opened up other fundraising opportunities I am so excited about and the ball will now be an annual event.”

Having run a successful ball, Casey had the following advice for other fundraisers:

“A lot of people told me hosting an entire ball would be too much. I agree it was very hard and stressful, but I loved every second and managed to raise a lot of money and host a night everyone could enjoy. I think trying to involve your supporters by participating in your event makes it easier to raise money rather than constantly asking them for sponsors so you can complete the event.”

Casey is a tremendous advocate for CHSF and LCHU, and she summed up why by saying:

“On behalf of myself, Zach and of course Freddie himself I’d just like to say thank you to CHSF for being there to evolve the ward, provide extra equipment no matter how big or small and being a friendly face when our family really needed it. We’ve just celebrated Freddie’s 1st birthday and without the charity, we may not have done. So thank you a thousand times over.”

A huge thanks to Casey, her family and all their close supporters! It’s plain to see where Freddie gets his strength from!

If you’re looking to get involved with Children’s Heart Surgery Fund,

. If you’d like to share your story, please

or visit our

Roll up, roll up… it’s time for another Fundraising Friday! Take a look below to see what our supporters have been up to this week…

Hazel’s Soul Night

Hazel organised a ‘Soul Evening’ with a raffle not too long ago in West Bretton. She said: “Everyone had a great time and thought the band was terrific.” It sounds like it was a blast – thank you to Hazel for supporting Children’s Heart Surgery Fund.

Schneider UK

Ben, Corporate Partnerships Manager for Children’s Heart Surgery Fund, spent some time speaking to staff from Schneider Electric UK, to thank them personally for raising over £600. They raised money by arranging a dress down day on the charities behalf – amazing effort from all involved!

Since its launch in April 1992, Stress Awareness Month has been encouraging people to be aware of the signs of stress and ways to manage it.

We spoke to Dr Rachel Avison – Senior Clinical Psychologist at Leeds Congenital Heart Unit, to ask for her thoughts and advice on stress.

Read on to find out ways to help you, your family and even friends manage stress when life gets difficult.

“Stress is a physical and emotional reaction to feeling under threat, be it a sudden and traumatic event or the pressure of day to day life.

It’s a normal response and we all encounter symptoms of stress from time to time. Though stress is not dangerous, enduring it for a long time can be bad for our physical and mental well-being. It’s important we can recognise the warning signs and are able to find ways to self-care.”

Physical symptoms

“We have an inbuilt survival system to help us when feeling threatened.

The brain releases stress hormones (such as adrenaline) that may lead to physical responses, which are normal

.

For example, you may notice things such as tight muscles and a faster heart rate.

This instinctive response prepares us for ‘fight’ or ‘flight’ (run away).

However

, modern stressful life events, like preparing for surgery, are not usually helped by this

!”

“Common physical symptoms of stress are:

• Muscle tension
• Headache
• Churning stomach
• Bowel and bladder problems
• Racing heart
• Tiredness or exhaustion”

Psychological symptoms

“Sometimes feeling these common physical responses triggers worried thoughts.

This, in turn, creates more stress and more

bodily

symptoms, creating a cycle of stress that can impact your emotional well-being

.”

“Common emotional symptoms of stress are:

• Worried thoughts, fear and panic
• Feeling overwhelmed
• Irritability or angry
• Withdrawing from or avoiding people and activities
• Feeling low in mood
• Being self-critical” 

“Stress varies widely from person to person. It could be external – the things that happen to us and around us that affect our feeling of control, such as coming into hospital.

Stress can also be internal – what happens inside us, both in the ways

we feel

physically

and our thoughts, feelings and behaviour

.

Stress is often a combination of external and internal factors, which create a vicious cycle

.”

“It’s not always possible to avoid stress but learning more about it helps you understand the causes and reduce its impact on your physical and emotional health

.

As the response to stress is often physical, our body is one of the first things it affects.

Try using the following relaxation techniques to help you to slow down and regain a feeling of control over uncomfortable physical feelings:

1. Controlled breathing – find a quiet place to spend a few minutes taking deep slow breaths, if possible, breathe in slowly through your nose aiming to fill your lungs, then breathe out slowly through your mouth, then repeat. Do this as many times as needed until you feel calmer.
2. Deep muscle relaxation – this aim of this exercise is to tense, hold and release different muscle groups in the body. For example, stretching your arms out above your head, holding for a few seconds and then bringing them slowly to your lap. Notice how your arms feel when they are relaxed, you may be able to feel a release of built-up tension. When ready, move on to different muscle groups, such as your shoulders and hands.
3. Mindfulness – much of our stress is linked to thoughts and feelings about the past and the future so focusing on the here and now can be very helpful. Mindfulness involves calm awareness, so allowing thoughts and feelings to come and go non-judgementally and returning focus to the present moment. There are some interesting insights from mindfulness practitioners and teachers on the OutwitTrade blog here.
4. Exercise – regular exercise such as walking, cycling and sport can be a great way to relieve stress and physical tension. Not only does exercise reduce levels of the body’s stress hormones, it stimulates the production of our body’s natural feel-good hormones.
5. Hobbies – anything we do that absorbs and interests us can help reduce the physical effects of stress on the body. Hobbies can refocus our minds and distract us from stressful thoughts and feelings, boosting our self-esteem and encouraging feel-good hormones.
6. Self-care – this is about making time to look after you. Finding ways to nurture and soothe yourself is very important at times of stress. Be it relaxing in a warm bath, having time out to read a book, seeing close friends or going for a walk, anything that helps you to slow down and feel calmer is beneficial.”

“The good news is that because our mind and body

are linked

, the above strategies all help to calm our thoughts and feelings

. Here are a few other useful things to try:

1. Soothing self-talk – we can be very good at supporting others emotionally but hard on ourselves for feeling distressed. Soothing self-talk involves being our own ‘wise friend’ and comforting ourselves rather than being negative or judgemental. For example, not comparing yourself to others, aiming for ‘good enough’ rather than perfection, reminding yourself that you have coped with challenges in the past.
2. Self-awareness – being aware of our stress levels allow us to put in place strategies, such as being organised to give us a feeling of control, breaking challenges down into smaller components and slowing down by being realistic about what we can actually take on. Remember, it is okay to say ‘no’ and to put your own needs first.  
3. Talk to someone – sharing worried thoughts, dilemmas and struggles with others we feel able to confide in and trust can help us to process stress. Often, people feel able to share feelings with close friends and family members; however, if this does not feel possible, there are support services available to offer confidential emotional support.”

“You are welcome to contact the Cardiology Counselling and Psychology Service on

0113 3926796

if you would like to discuss arranging confidential, emotional support for yourself or a family member

.

We support patients and family members under the care of Leeds General Infirmary Adult and Paediatric Congenital Cardiology Department

.

You can also discuss accessing psychological support and counselling via your GP or contacting your local IAPT service (Increasing Access to Psychological Therapies)

.”

“And finally, there are

a number of

useful websites with advice, top tips to manage stress and free resources available, including the following:

• www.stress.org.uk
• www.mind.org.uk
• www.youngminds.co.uk
• https://web.ntw.nhs.uk/selfhelp 
• https://outwittrade.com/mindfulness-benefits/

Thanks for speaking to us Dr Avison!

Remember if you need to get in touch with the counselling and psychology service, you can call them on

0113 3926796.

It’s that time again! We’re here to celebrate another round of fantastic fundraising from our supporters.

This week, two incredible groups of people have been working hard to help us support hearts for life…

HMP/YOI Askham Grange

Gareth (pictured above) popped into the Children’s Heart Surgery Fund office, to present us with a fantastic donation after he organised a 5-hour step-a-thon! Gareth said:

“Askham regularly tries to arrange charity events through the P.E Department to encourage the residents and staff to donate to worthy causes, whilst also encouraging people to get active.”

Everyone dug deep and got involved to support the charity, including local beer retailer, Beer hawk in Wetherby who supported their efforts. Thank you all for your amazing input!

West Yorkshire Police Rugby League Team

The West Yorkshire Police Rugby Team (WYPRL) recently visited Leeds Children’s Hospital with Easter Eggs and soft toys for the children on Ward 51 and PICU. The WYPRL Team wasn’t stopping there though! They’ve also organised a bleep test fitness challenge between Easter mascot Rufus Rabbit and team mascot Alfie Lion, setting up a JustGiving page asking their supporters for donations. Thank you for your support and fantastic effort! We also look forward to seeing the WYPRL team compete at our

on the 30th of June.

If you’re looking to get involved with Children’s Heart Surgery Fund, why not take a look at our

? If you’ve already been busy fundraising we’d love to hear from you! Get in touch and send a message to braveheart@chsf.org.uk

Rebecca Jones is April’s Fundraiser of the Month. Read on to find out why!

Rebecca’s daughter Emily was diagnosed with a Ventricular Septal Defect at 9 days old. Emily was only 7 weeks old when she went for open heart surgery.

Whilst Emily was being treated, Rebecca and her family stayed in the parent accommodation we’re able to fund thanks to YOUR fantastic donations.

Rebecca was able to be by Emily’s side anytime, while Emily was cared for in the Paediatric Intensive Care Unit (PICU) and then the High Dependency Unit (HDU).

“When we were walking back from HDU to our accommodation we discussed how we had to do something to say thank you. Children’s Heart Surgery Fund had helped to save our daughter’s life, so I suppose it felt only natural to raise what we could to help other families.”

Rebecca and her family threw Emily a ‘Heart Party’, to celebrate her successful surgery and return home, to which they sold tickets.

Rebecca got creative and made handmade bunting, which she sold at the party. Her equally creative friend knitted coloured hearts and made delicious looking chocolate-covered strawberries.

They held a raffle which brought in plenty of donations and had lots of other activities to enjoy, including nail painting and glitter tattoos for the kids. There was even a surprise visit from Katie Bear!

“So many friends and family had never met Emily because we’d had to keep her away from germs pre & post-op. It was a great opportunity to catch up with loved ones as well as raise lots of money for CHSF.”

Rebecca used JustGiving to collect extra donations and shared it on social media. She received donations from generous friends of friends, as well as her friends and family.

Since returning home and celebrating her Heart Party, little Emily is on the road to recovery.

Thanks to the great work of Leeds Congenital Heart Unit, she’ll live a happy, healthy life, without the need for further surgery.

After the party, Rebecca had a few final words to share, reflecting on her time in the hospital.

“I wanted to say thank you to CHSF for providing the Katie Bear Goes to Hospital book, medal & certificate! I am looking forward to reading the book with Emily when she is older and showing her what a brave and strong little girl she was. It must really help older children and their families.”

Big thanks to Rebecca, her family and all the guests that attended Emily’s Heart Party! Your support is appreciated.

If you’re looking to get involved with Children’s Heart Surgery Fund, take a look at our latest events:

. If you’d like to share your story, please e-mail bravehearts@chsf.org.uk or visit our

.

Happy Friday everyone! In this week’s #FundraisingFriday we are sharing some great photos from Easter fundraising-bunnies and some fantastic fundraising events from our supporters.

Our

, visited Ward 51 and outpatients to deliver Easter Eggs and teddy bears he’d purchased. Junior brought along his younger brother Jake to help hand them out. There were smiles all around!

James organised a charity Ghost Hunt at Toby Carvery in Doncaster, on behalf of Children’s Heart Surgery Fund. His son Henry was born with 3 holes in his heart and had open heart surgery at Leeds General Infirmary. We hope everyone enjoyed the event!

Jayne and Luke celebrated their 50

& 13

birthdays together and collected donations on behalf of Children’s Heart Surgery Fund. Jayne said: “Luke had a catheter procedure last year and had an overnight stay on ward 51. He was really well looked after in hospital and asked if we could raise some funds to give back after the care he received.” Thank you both and happy birthday from us!

Sisters Scarlet and Alexa raised £150 by giving up chocolate for Lent. Their Mum said: “This is to thank you for saving the life of their baby brother Leighton who took his first steps this week.” We think you should both be very proud of your hard work.

Students from Leeds East Academy supported us by organising a cookery club and then baking and decorating buns for a bake sale.  They also held a stall and sold raffle tickets and various bits of Children’s Heart Surgery Fund merchandise. Well done – it all sounded delicious.

West Yorkshire Police Rugby League collected hundreds of eggs which were delivered by the team and Rufus Rabbit around Leeds Children’s Hospital. Rufus Rabbit was a big hit with the kids! They’ve been up to all sorts of other fundraising activities, even challenging their mascot Alfie Lion to train in the gym against Rufus – you can find out more on their

page. Thanks to all the players and staff at West Yorkshire Police for their support.

Wow! What a great week of fundraising. Would you like to be featured on #FundraisingFriday? Please e-mail us at bravehearts@chsf.org.uk – we look forward to hearing from you.

It’s time to celebrate our incredible supporters once again. Read on to find out what these supporters have been up to…

Lisa’s son Louis recently had open heart surgery to repair a hole in his heart and a leaking valve. She organised a boot camp for her local community with the help of Sue Timoney, to fundraise for Children’s Heart Surgery Fund (CHSF). The Moore family and friends all took part and joined in. Great job everyone!

Mark and his partner Sarah have been busy promoting Children’s Heart Surgery Fund across their local community, as their son Reggie is living with

. Mark also decided he was going to get into the boxing ring to raise funds for us. Thank you Mark and congrats for smashing your fundraising target!

The staff and pupils of Kirkhammerton Primary took part in our

not too long ago. Lisa & Katie Bear went to visit them this week to say thank you and pick up a cheque for their amazing fundraising! Well done to you all.

We can’t thank our supporters and everyone who has donated enough.

Have you been busy fundraising or

? Be sure to tell us what you get up to! Send an e-mail to bravehearts@chsf.org.uk. We look forward to hearing from you!

With Easter just around the corner, here are some fun activities for the kids (and grown ups!).

Easter Maze

Katie can’t seem to find her way to the Easter Eggs. Could you help her?

Download Me

Colour me in!

Why not make this Easter coloring-in sheet into a fun Easter card?

Download Me

The Children’s Heart Surgery Fund team wishes you all a happy Easter!