YOUTH HUB
Support for young people aged 13-25 with a congenital heart condition
ABOUT CHSF’S
YOUTH SUPPORT
Welcome to the Youth Support page provided by Children’s Heart Surgery Fund (CHSF).
CHSF’s dedicated Family Support/Youth Worker, is here to support you through various things, from ‘boredom busters’ on the ward, to chats about school and what comes after.
The next stage of CHSF
At CHSF we want to be with you as you take the next steps. Our Family & Youth Support Worker, Lu is here to listen and work with you as you navigate this time of change.
Group Activities
Participate in engaging group activities organised by the hospital, including cooking sessions, quiz nights, and the Duke of Edinburgh Award. Weekly peer support groups, facilitated the LTHT Youth Work Team, offer a supportive environment. More info here.
CHSF also run activities, online and in-person. These have included digital quizzes and an in-person Alpaca walk. Keep an eye on social media or sign-up to receive CHSF emails to be the first to hear about new events.
Virtual Sessions
‘Transition evenings’ are held virtually on Teams by the Leeds Congenital Heart Unit, providing essential information twice a year. You will also receive a ‘Welcome To The Adult Service’ telephone appointment prior to your first ACHD appointment, once you have been referred to the Adult service.
Adult Clinics
There are Adult Congenital Cardiac Clinics in Leeds, Sheffield, and Hull. Reach out to specialist nurses for more information and support:
- Children’s Cardiac Nurse Specialists: 0113 392 5467 | ccns.lgi@nhs.net
- Adult’s Cardiac Nurse Specialists: 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
Your journey to adult care is a significant step, and CHSF’s Family & Youth Support Worker is committed to supporting you.
For more information or assistance, feel free to reach out. Your well-being is our priority!
LU MCMAHON
Family & Youth Support Worker
Hi there!
I’m Lu, the Family & Youth Support Worker for Children’s Heart Surgery Fund (CHSF). That means I’m one of your go to people for all things CHSF events, activities and anything youth-related. I work with a bigger team in the hospital to provide you the best service and support.
Here are just some areas we can help out with...
- Confidence building
- Signpost for support with social issues and wellbeing
- Increasing independence
- School/College issues
- …and more!
Check out some of the links and resources on this page to get started. If there is anything else I can assist with, just let me know!
Lu 🙂💜
Call/message: 07933 185146 | Email: lucy.mcmahon@chsf.org.uk
LTHT Youth Service
The hospital youth service in Leeds organises awesome group activities such as cooking, quiz nights, and even the Duke of Edinburgh Award. There are also weekly peer support groups run by our hospital Youth Work Team. Tap the images to find out more…
For more info or if you’re interested in the group sessions and would like support do not hesitate to reach out and get in touch. Find more info here.
Lu says: “If you need something more specific, just let the hospital staff know, and they’ll be able to let me know!“
HOSPITAL STAYS
Getting ready for a stay on the ward? We’re here to support you through your hospital stay! 🌟
Getting settled
You’ll get a quick tour of the place – bathrooms, the playroom (if you are on Ward L51), the Day Room (if you are on the adult wards). The hospital has Play Specialists and a Youth Worker who can set you up with activities, from crafts and boardgames to online gaming events!
Stay connected
We’re all about making your stay as comfortable as possible. Want to stay in touch with your friends? No problem! We’ve got WiFi on the wards, so you can keep in touch with your friends and family.
Your faith, your way
Got any customs or beliefs you want to keep up? We’ve got you covered! The LTHT Chaplaincy has reps from all faiths – just let your nurse or a member of the team know.
The fun stuff
We’ve got a bunch of activities to keep you entertained. Board games, puzzles, word searches – you name it, we’ve got it. Feel free to bring your own things, whether it’s music or something artsy. No music devices? Bring your headphones to listen to music and podcasts during your stay. The hospital has games consoles, iPads, and even VR headsets. Entertainment is essential!
Support for you
Need some support while you’re on the ward? Lu, our Family & Youth Support Worker is here for you. From a brew and a chat …to help with your UCAS applications, she’s on hand!
Lu says: “Your stay in hospital is about making things comfortable for you. If you need anything, just give us a shout! 🚀🎮🎨”
What to bring to hospital
“What do I need to bring?!” This list comes from talking to young people who have been for surgery and what they recommend…
-
Comfy clothes 🩳
-
Button-up PJ’s, loose t-shirts 👕
-
Entertainment (e.g iPad, tablet, e-book reader, chargers) 📱
-
Toiletries 🧼
-
Headphones (the ward can sometimes be noisy!) 🎧
-
Favourite pillow from home (you can even bring your own bedding if you like!) 🛏️
-
Books, Puzzle Books, Colouring etc (anything that keeps you busy!) 🧩
-
Favourite snacks or drinks 🍪🧃
LIFESTYLE
Click or tap the image below to find more about each topic…
ALCOHOL
It is common for social events to include alcohol, and it can be hard to be different from your friends.
Talk to your doctor about what’s safe for you, as it can vary from person to person. Once you know what’s safe, make thoughtful decisions about drinking. It’s important to think about how alcohol fits into your life and health.
Alcohol and heart conditions
Drinking alcohol, especially as a young adult, is common, but it’s more challenging for those with a heart condition due to both medical and social factors. Alcohol can also interact with medication, such as Warfarin, so it is important to know the risks. Please contact your medical team, or ask in clinic, for advise around drinking alcohol.
Medical Risks of Alcohol
Drinking large amounts of alcohol regularly poses risks such as liver disease, reduced fertility, high blood pressure, increased risks of cancer and heart attacks, this is something to be aware of when deciding how you approach alcohol. Alcohol can interfere with medications – please speak to your nursing team/cardiologist if you have any questions.
Moderation and Safety Tips
Moderation is key. Recommendations include knowing your limit, alternating alcoholic drinks with water, eating before drinking, sticking to lower alcohol options, planning safe transportation, and using apps to track drinks.
Stimulant / ‘Energy’ Drinks
Beverages like Red Bull or Monster can affect the heart negatively, causing an instant rise in blood pressure and heart rate. Please speak to your cardiologist about your specific heart condition and the effect stimulant drinks can have.
Social Considerations
Social pressure to drink can be significant, but it’s essential to know your own limits, trust your judgment, and not succumb to peer pressure. Strategies like drinking non-alcoholic beverages or avoiding drinking games are suggested.
Personal Choice
Ultimately, the decision to drink alcohol is personal, but it’s crucial to be aware of the risks and make informed choices based on individual health considerations.
For more information and guidance on alcohol and your cardiac condition, speak to the cardiac nurse specialists in clinic or reach out via email or on the phone.
Children’s Cardiac Nurse Specialists 0113 392 5467 | ccns.lgi@nhs.net
Adult’s Cardiac Nurse Specialists (16+) 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
ENDOCARDITIS
What is Infective Endocarditis?
In brief, infective endocarditis is an infection where bacteria affect the inner lining of your heart, usually around the valves. It can be a serious infection and requires urgent treatment. For more information on the seriousness of endocarditis, please see the Leeds Congenital Heart Unit website.
Alright, let’s dive into the world of keeping your oral health in check – it’s interesting!
How do you reduce the risk of Infective Endocarditis ?
Keep your teeth game strong! Good dental care and oral hygiene are a top priority. If you have questions, speak to your medical team and they can signpost you to the appropriate dental service for you. Brush your teeth twice a day with fluoride toothpaste and go easy on the sugary snacks and drinks.
Need a family dentist? Look up the NHS website – they’ve got the information you need on local services. If you’re in a dental emergency and don’t have a family dentist, give NHS 111 a call. 🦷✨
Tattoos, piercings and beauty
It is important to be informed and make decisions about tattoos, piercings and beauty treatments. Know the facts.
Getting tattoos, piercings, or any beauty treatments that use needles can be risky, especially if you have a heart condition. When you break the skin, it can let germs into your body. We want to support you make the right choice for you, so here are some useful things to know before heading to the salon:
- Ear piercing, body piercings or tattooing can lead to infections which may cause endocarditis.
- Microblading, lip fillers and other aesthetic procedures are best avoided as may cause endocarditis.
- Patients at increased risk of endocarditis are best avoiding these procedures.
If you have any questions, please don’t hesitate to give your Nurse Specialist team a call. For further information, the team at Leeds Congenital Heart Unit have some great resources.
For more information and guidance on the risks of endocarditis and your cardiac condition, speak to the cardiac nurse specialists in clinic or reach out via email or on the phone.
Children’s Cardiac Nurse Specialists 0113 392 5467 | ccns.lgi@nhs.net
Adult’s Cardiac Nurse Specialists (16+) 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
FOOD
TIPS FOR HEALTHIER EATING
-
Eating the right foods is important.
-
Try to avoid too many snacks and focus on having balanced meals.
-
Learning to cook can be really helpful.
-
Planning your meals ahead of time can make it easier to eat well.
-
It’s okay to have a takeaway occasionally
but try not to rely on fast food, as they contain a lot of salt and fat, which isn’t good for anyone, especially those with heart conditions
It is a great idea to learn a bit about what makes a balanced meal.
We often hear the word ‘protein’ and think of a milkshake you have after the gym. But there are plenty of ways to add in protein and veggies to meals to make them filling and balanced.
Healthy eating can feel daunting and sound like it can cost a lot of money. Below are some healthy, tasty recipes for under £5 to get you going…
Use the arrows on the right to reveal each recipe
PASTA PESTO 🌱
INGREDIENTS:
o 200g pasta
o 3 tablespoons pesto sauce
o 1 tablespoon olive oil (or an oil of your choice)
o Salt to taste
o Grated cheese (optional)
METHOD
1. Cook the pasta according to packet instructions. Drain and set aside.
2. In the same pot, add oil and pesto sauce. Mix well over low heat.
3. Add the cooked pasta back into the pot and toss to coat the pasta evenly with the pesto.
4. Serve with grated cheese on top, if desired.
Vegan Alternative:
o Use vegan pesto (usually available in most supermarkets).
o Substitute grated cheese with vegan cheese or nutritional yeast.
JACKET POTATO 🥔
INGREDIENTS:
o 2 large potatoes
o 1 can of baked beans
o 1 tablespoon olive oil (or an oil of your choice)
o Salt and pepper to taste
METHOD
1. Preheat the oven to 200°C (180°C fan/gas mark 6).
2. Wash the potatoes and prick them several times with a fork.
3. Rub the potatoes with oil, salt, and pepper.
4. Place them on a baking tray and bake for 1 hour or until the skin is crispy and the inside is soft.
5. Heat the baked beans in a saucepan.
6. Cut open the baked potatoes and top with baked beans.
VEGETABLE RICE 🍚
INGREDIENTS:
o 200g rice
o 1 cup mixed vegetables (frozen or fresh)
o 1 tablespoon soy sauce
o 1 tablespoon olive oil (or an oil of your choice)
o 1 clove garlic, minced
o Salt and pepper to taste
METHOD
1. Cook the rice according to package instructions.
2. In a large pan, heat oil over medium heat.
3. Add minced garlic and cook for 1 minuet.
4. Add the mixed vegetables and cook until soft.
5. Stir in the cooked rice and soy sauce. Mix well and cook for another 2-3 minutes.
6. Season with salt and pepper to taste.
CHICKEN TRAYBAKE 🍗
INGREDIENTS:
o 2 chicken breasts
o 2 potatoes, chopped
o 1 bell pepper, chopped
o 1 onion, chopped
o 2 tablespoons olive oil (or an oil of your choice)
o Salt and pepper to taste
METHOD
1. Preheat the oven to 200°C (180°C fan/gas mark 6).
2. Place the chicken breasts, chopped potatoes, bell pepper, and onion on a baking tray.
3. Drizzle with oil, sprinkle with paprika, salt, and pepper, and toss to coat.
4. Bake for 25-30 minutes, or until the chicken is cooked through and the vegetables are tender.
SPAGHETTI WITH TOMATO SAUCE 🍝
INGREDIENTS:
o 200g spaghetti
o 1 tin of chopped tomatoes
o 1 onion, chopped
o 2 cloves garlic, chopped
o 1 tablespoon olive oil (or an oil of your choice)
o Salt and pepper to taste
METHOD
1. Cook the spaghetti according to package instructions. Drain and set aside.
2. In a large pan, heat oil over medium heat.
3. Add the chopped onion and cook until soft.
4. Add the garlic and cook for another minute.
5. Stir in the chopped tomatoes. Simmer for 10 minutes.
6. Season with salt and pepper to taste.
7. Toss the cooked spaghetti in the sauce and serve.
For more information and guidance on healthy eating and your cardiac condition, speak to the cardiac nurse specialists in clinic or reach out via email or on the phone.
Children’s Cardiac Nurse Specialists 0113 392 5467 | ccns.lgi@nhs.net
Adult’s Cardiac Nurse Specialists (16+) 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
MINDFULNESS
Personal and Social Wellbeing Support
Lu, our Family Support/Youth Worker is available when you need to talk and support you if needed. Email lucy.mcmahon@chsf.org.uk or call/message on 07933 185146
Leeds Psychology Service
The Leeds Congenital Heart Unit has it’s own Psychology Service. They are a small team of Clinical Psychologists and Counsellors, who are dedicated to supporting patients and families living life with a heart condition. Find out more
Teen Connect
Teen Connect is a helpline for 11–18 year-olds. Teen Connect can offer up to an hour of support either by phone, text or online chat. You can have up to an hour with one of their trained staff each night to talk about what you’re going through. Find out more
Leeds Recovery College (18+)
Leeds Recovery College provides free workshops, courses, and training to explore, improve and maintain our mental health and wellbeing. Find out more
Leeds Autism AIM (18+)
Drop-ins, mentoring and advocacy available for autistic adults in Leeds who receive little or no funded support. Find out more
Ideas for relaxation
Relaxation can help you when you feel anxious or tense, calm your breathing and soothe you. Here are some ideas you can try…
For more information and guidance, speak to the cardiac nurse specialists in clinic or reach out via email or on the phone.
Children’s Cardiac Nurse Specialists 0113 392 5467 | ccns.lgi@nhs.net
Adult’s Cardiac Nurse Specialists (16+) 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
My Heart Surgery Support Pack
This 24-page guidebook, created by the CHSF and the Psychology team at LCHU, is for teens aged 13-18 who are coming in for heart surgery at Leeds General Infirmary.
It gives a clear and honest look at what happens in the hospital and what to expect before, during, and after your surgery. This book is here to support your mental health and help you feel more comfortable and ready for your experience.
Request a copy from your Cardiac Nurse Specialist or email the team below!
SEX &
RELATIONSHIPS
As you get older you might start exploring your sexuality and thinking about relationships.
You may have had sex education lessons at school, but did you know for tailored advise, specific to your needs, you can speak to the cardiac nursing team?
There will be some of the same information, but we can help sign-post you to the most appropriate support when thinking about sex, relationships and family planning. We recommend speaking to your Nurse Specialist team for these kind of questions.
It is important to remember when thinking about a sexual relationship, it is about personal choice. It can sound cliché, but it is important you ONLY do things that you want to do. Don’t think about what your friends have done, or what others expect from you. It is up to YOU to decide what is right for your body!
Please email the CCNS team if you would like any more advice: ccns.lgi@nhs.net
If you have moved to the adult service, contact the adult congenital nurses at leedsth-tr.achdnurse@nhs.net
Find more info about Periods, Contraception and Pregnancy on the LCHU website here.
Helpful resources
YORKSHIRE MESMAC
This is a Yorkshire-wise support service. HIV & STI testing, 1:1 support, counselling, outreach, condoms, and support. Plus social groups for men who have sex with men, and transgender men. Find out more
C-CARD
This is a national service and you can find services local to you once you are enrolled. Individuals aged 13 to 24 are eligible to enroll in the C-Card program. The C-Card initiative provides complimentary: Support and advice about sexual health; Condoms, femidoms, lube and dams; Chlamydia screening; Pregnancy testing (selected places).
When used correctly, condoms are the only type of protection that help prevent sexually transmitted infections (STIs) as well as pregnancy. Find your local service here.
FIND YOUR SEXUAL HEALTH SERVICES
Find sexual health services (www.nhs.uk) is a resource for young people to find their local clinics across the UK.
For more information and guidance on sex, relationships and your cardiac condition, speak to the cardiac nurse specialists in clinic or reach out via email or on the phone.
Children’s Cardiac Nurse Specialists 0113 392 5467 | ccns.lgi@nhs.net
Adult’s Cardiac Nurse Specialists (16+) 0113 392 8154 | leedsth-tr.achdnurse@nhs.net
JOIN THE YOUTH HUB
The CHSF Youth Hub is for young people with CHD. This free membership gets you access to our events, an opportunity to be a member of the Youth Voice panel and to influence what CHSF does for you going forward.
Become a member to build peer connections and have the opportunity to connect, have fun and make a difference.
Sally
Sally's heart defect wasn't identified until after she was born and had open heart surgery at 18 days to correct her CHD. Doctors at the Leeds Congenital Heart Unit stated that without this operation, Sally wouldn't live past 6 months old. Now 21, Sally has already...
Georgie shadows Lucy, Family Support Youth Worker
written by Georgie Abbott “Ready, Steady, Go, Hello” is a national programme our CHSF Family Support Worker, Lucy McMahon, has been telling me we are working towards implementing to help our young heart warriors as they navigate their cardiac care pathways. And...
Sign up to Youth Hub
“I’m here, if you need me!”
Lu McMahon
Family & Youth Support Worker
lucy.mcmahon@chsf.org.uk
07933 185146
“I’m here, if you need me!”
Lu McMahon
Family & Youth Support Worker
lucy.mcmahon@chsf.org.uk
07933 185146