The play team on the children’s heart ward at Leeds Children’s Hospital (L51) have some fantastic resources to help reduce anxiety on the ward for everybody.
Many of the toys, activities and resources in the playroom have been funded by Children’s Heart Surgery Fund, because of your generous donations…
Play specialist Sarah dressed up as Cat in the Hat for World Book Day this year – all in a day’s work for the Play Team!
To round-off Stress Awareness Month 2023, we asked Play Specialist Sarah to tell us a bit more about how the Play Team help to relieve anxiety and stress on the heart ward…
Sarah said…
The Play Team spend time with patients that are awaiting procedures and use play as a technique to help them understand what to expect.
This can include a mix of real and toy medical items to role play with, along with pictures and videos on the iPad of the places they may need to visit in the hospital.
Hospitals can be busy and noisy, so we offer distraction play to all patients and their families through the day.
Colouring and crafting are particularly good mindful activities, but for some patients building with Lego or playing on a games console is just as therapeutic.
Distraction during a procedure like having blood taken is important too. Having fidget toys, games to play, and even jokes to tell all help alleviate anxiety for the patient.
Our work is very much ‘in the moment’, tuning ourselves into the patient’s feelings, responding to them and advocating for them as required.
This balance means that we need to use stress-busting techniques for ourselves too.
I try to find five minutes for a mindful moment to level out, whether that’s with a warm drink or just a having quick chat with a colleague.
I find laughter and being playful really is the best medicine and I take pleasure in decorating the ward to make everyone smile.
Speaking of colleagues, the playroom door is always open for staff too! We find that the resources and techniques we offer to children work just as well in adults.
Speaking of colleagues, the playroom door is always open for staff too! We find that the resources and techniques we offer to children work just as well in adults.
April is Stress Awareness Month. A big thank you to Sarah on the L51 Play Team for writing this blog and telling us a bit more about the awesome work they do for our patients, families and staff on the heart unit.
Corporate Partnerships Manager Georgie recently went along to St Luke’s Hospital in Bradford to meet up with Children’s Cardiac Nurse Specialist Araminta – whose role is funded because of your donations!
In this blog, find out a bit more about Araminta’s role and the difference she makes to heart patients and families in the Bradford area…
“How do you feel about change? Recently, there has been a lot of change in my life, most of which I embrace, but I definitely have moments of yearning for the world to stop turning so quickly.”
“One of our corporate partners asked me yesterday what the biggest change has been coming back to work at Children’s Heart Surgery Fund (CHSF) after maternity leave. Two things come to mind…”
“First of all, I have returned to a charity that has progressed immensely in the last few years, now offering more services to our young heart patients and their families, which weren’t even available when I was last at work. This I find incredibly inspiring.”
“As a fundraiser it’s always very rewarding to see services developing and I am proud that CHSF is helping more babies and children born with heart problems and their families. This includes the establishment of two Family Support Workers and four regional Children’s Cardiac Nurse Specialists (CCNS).”
“Secondly, I am now a mum of two and I am very conscious that I am spinning multiple plates in the air in the hope that I can juggle them all at once without them coming crashing down.”
“Yesterday I shadowed, Araminta, who is the CCNS for Bradford, based at St Luke’s Hospital, and I was blown away by her amazing enthusiasm and compassion for her new role supporting cardiac patients and their families.”
“It soon occurred to me that Araminta was spinning far more plates than me!”
“During the course of one day, she will sometimes see up to 19 families giving them her invaluable care, compassion, and attention, often without a lunch break for herself.”
CHSF have funded regional cardiac nurses in Bradford, Sheffield, Calderdale, Grimsby & Scunthorpe and plan to fund more roles in more areas in the future.
“It was a privilege to spend time with Araminta to understand why her role is so vital to cardiac patients, and by the end of the day I found myself wondering how families coped before she started her role 8 months ago.”
“Her regional role allows her to be there for families in their hometown, so they don’t need to travel further than their local hospital for appointments and she is also able to do home visits, which are clearly so important for cardiac children.”
“She told me about a young autistic boy who is very anxious about having his blood pressure taken. Visiting him at home enables her to see him in his own safe environment, which gives her the opportunity to put him at ease in a situation he usually finds unbearable. On her last visit she made him laugh by pretending to test blood pressure on his dog.”
“As with every progression there comes more opportunity for change, and for CHSF this means continually reviewing and developing our support for young cardiac patients and their families.”
“This is a dream for every fundraiser because it means we know our work will continue to provide new and exciting projects for our loyal corporate partners and new businesses, as well as knowing our work is having a hugely positive impact in our local community.”
“Araminta highlighted a few areas for future development, including how we can enhance our communication with families. Currently she has to book an interpreter around three times a week to speak with patients who do not have English as a first language.”
“CHSF have a sign at the entrance to the Leeds Congenital Heart Unit ward translated into the top 10 languages spoken in Yorkshire and have produced some hospital literature into needed languages, but we have identified a need to improve on this and diversify our staff base to include a multi-lingual Family Support Worker.”
“In addition, Araminta, told me about the need for more distraction techniques while cardiac children are having an ECHO, to check the anatomy of their heart. It’s really important for children to stay still during this scan to ensure an accurate reading of the heart and all its complexities. Araminta has visions of disco balls and bubbles to make the room a more friendly and entertaining environment for children.”
If you or your business would be interested to work together to help make Araminta’s visions a reality I would love to hear from you at georgie.abbott@chsf.org.uk.
Georgie Abbott
Corporate Partnerships Manager
georgie.abbott@chsf.org.uk
Recruiting Corporate Partners across Yorkshire, North East Lincolnshire and The Humber who want to help improve the lives of children born with congenital heart defects.
Because of your superb support, CHSF were able to fund an educational event focussing on palliative care in babies and children with CHD.
The event was attended by over 90 nurses and clinicians from across the Yorkshire and Humber region.
Cat Brown, Lead Nurse for the Yorkshire & Humber Congenital Heart Disease Network said:
The event was great, exploring the challenges we face in palliative care for infants and babies with CHD.
Thank you to all the speakers and attendees for making the day a success, and special thanks to CHSF for sponsoring the day. This was our first face-to-face event since the pandemic, so the funding from Children’s Heart Surgery Fund meant we could hold it at a venue with excellent amenities!
The event was evaluated well with feedback such as “More of this, please!” and “Excellent session on a topic I wasn’t familiar with.”.
WHAT YOU’VE FUNDED
We are thrilled to announce we have awarded a grant of £10,000 to Eckersley House ‘Home from Home’ run by The Sick Children’s Trust, thanks to your donations.
Eckersley House gives families with a seriously ill child at Leeds Children’s Hospital a place to stay just minutes from their hospital bedside, free of charge.
It is the latest in a series of substantial donations from CHSF, who have gifted over £550,000 to Eckersley House since 2010. Driven by our mission to support the Leeds Congenital Heart Unit at Leeds Children’s Hospital as a world-class centre of excellence, CHSF provides funding and resources needed to care for a patient’s heart, mind, family and future.
Heidi Watson, the CEO of CHSF said:
“Eckersley House has been a vital resource for our heart parents for well over a decade, providing them with respite and home-from-home facilities while remaining close by their poorly child.
One in 125 babies are born with heart disease in our region – often needing lengthy hospital treatment, and the whole family needs support during this period.
“A huge thank you to Jane McHale, all the team at Eckersley and the tremendous CHSF supporters for their hard work and commitment in helping to fund our latest donation.”
“We don’t know what we would have done without the support of CHSF and Eckersley House.”
Jane Featherstone, CEO of The Sick Children’s Trust, said:
“We are so grateful for yet another generous donation from Children’s Heart Surgery Fund, who have been wonderful supporters of Eckersley House over the past 13 years.
“We have a very close working relationship with CHSF, working in collaboration to support families of children with serious heart conditions being treated at Leeds Children’s Hospital.
“We often hear stories from those families about how much they appreciate the support they receive from both charities, and I hope that this continues for many years to come.”
One family that has been supported by the two charities is Adam Dale and Caley Flynn from Sheffield, whose baby son Alec was born 11 weeks premature at their local hospital in August 2022.
However, the diagnosis of serious heart condition saw Alec transferred to Leeds Children’s Hospital, more than an hour away from the couple’s home.
Adam and Caley said:
“We met Jane [McHale], the House Manager at Eckersley, and she was wonderful. She couldn’t do enough and sorted everything out for us. All the staff there were brilliant, and it was so homely.
“When Jane said that there was no financial cost for us, it was such a huge relief, a massive weight off my shoulders.
We didn’t need any help when we were in Sheffield, but we really did in Leeds, being so far away from home.”
“Children’s Heart Surgery Fund were also incredible for us, giving vouchers for food, providing toiletry bags and even to offering pay the cost of our fuel when travelling.
“What they have done to support the families of children with heart conditions in Leeds is amazing, and we cannot thank them enough. We don’t know what we would have done without the support of CHSF and Eckersley House.”
CHSF’s donation to Eckersley House, plus our own accommodation on Brotherton Wing, ensures that more parents can stay nearby while their child is being treated at Leeds Children’s Hospital. And we can only offer this with your donations.
It costs £30 for one night of family accommodation.
Regular donations help us ensure respite in a hospital home-from-home for worried families, when they most need it.
For example, just £10 a month could pay for three nights of rest and support by the end of the year. Please help if you can.
In June this year, the Congenital Cardiology Intervention Team performed a pioneering procedure by implanting a Venus P pulmonary heart valve into an adult congenital heart disease patient.
This was the first implantation of this revolutionary valve in Europe after it received its CE mark.
Earlier this week, the story was shared on BBC Look North. Watch full video below!
Dr Jamie Bentham said:
“This is another first for Leeds and it is wonderful to be part of such a dedicated team who are consistently able to deliver first class results.”
“It is a real honour to have been asked to perform the procedure and fantastic for our patients that new technology is allowing us to treat them with keyhole procedures rather than open heart surgery”.
Teacher, Francesca Cooper, was born with pulmonary stenosis, a narrowing of the valve that lets blood flow from the heart to the lungs. At one day old she had surgery at Leeds to widen the valve but was always aware she might need a replacement valve as an adult.
The P Valve is inserted by catheter through a small incision in the groin and fed through an artery into position in the heart.
Once in position the device is carefully deployed, expending to fill the valve of an adult patient.
Thanks to the new device, Francesca was able to have a day-case keyhole procedure.
This meant she could avoid open heart surgery, a lengthy stay in hospital and a prolonged period of recovery.
As this story highlights, the Leeds Congenital Heart Unit is a world-class centre of excellence – and a leading light in congenital cardiac care, because of you.
The hybrid lab, for which YOU contributed £500,000 through the Keeping The Beat appeal, played a big part in the heart unit being able to perform this operation.
Your donations help to care of the heart, mind, family and future of congenital heart disease patients in our region. We are proud to work hand in hand with the Leeds Congenital Heart Unit and are incredibly grateful for your unrelenting support.
Your donations help to care of the heart, mind, family and future of congenital heart disease patients in our region. We are proud to work hand in hand with the Leeds Congenital Heart Unit and are incredibly grateful for your unrelenting support.
An exciting opportunity for an NHS staff member at Leeds Children’s Hospital to undertake a fellowship in Canada has been made possible because of you.
Leila Rittey is a Paediatric Cardiologist on the Congenital Heart Unit at Leeds Children’s Hospital; she provides support and care to young patients and their families before and after their surgery.
In the next 18 months, Leila will complete her training and hopes to become Consultant at Leeds.
In collaboration with Leeds Hospital’s Charity, your donations have helped to fund Leila’s International Fetal and Neonatal Cardiology Fellowship at the University of Alberta in Canada.
Leila is currently working at Great Ormond Street Hospital to develop her skills, and spoke about why she wanted to undertake the Fellowship in Canada:
“Once I decided that Fetal Cardiology was the specialty for me, I spent time talking to the current Fetal Cardiologists in Leeds about what I could do to develop my skills and learning in this field. They were both clear that in order to have the time truly dedicated to Fetal Cardiology and to see how other units work it was important to go somewhere other than Leeds.”
“I was told about an opportunity in Canada which was internationally renowned and got in touch with one of the doctors working there. I was able to talk to her and the program just sounded amazing. So, I am truly grateful that Children’s Heart Surgery Fund and Leeds Hospitals Charity have come forward to support me undertaking this incredible opportunity.”
Leila hopes that the Fellowship will help her give poorly children and their families the best possible experience in hospital. When she returns to Leeds in July 2023, Leila hopes to join the Fetal Cardiology Team, and start a clinic to see pregnant women earlier on in their pregnancy to detect heart disease in their baby sooner and provide reassurance to families going forward.
Heidi Watson, CEO of Children’s Heart Surgery Fund said:
“CHSF is committed to supporting the family and future of congenital heart disease patients in our region, and Leila’s training will bring essential new skills to the Leeds Congenital Heart Unit from her Fellowship in Canada.:
“Edmonton is an internationally-renowned centre which teaches enhanced technical skills in using data imaging to determine the best treatment plans for the youngest of patients with congenital heart disease, and optimum support for affected parents both before and after their child’s birth.”
“Thanks to donations from our supporters, CHSF has invested over £30,000 in this training so that future heart families and the youngest of patients will benefit for years to come.”
The team Leila will be working with have an 80% success rate of identifying congenital heart disease, and she hopes through her screening sonographer training, she can discover ways to improve the detection of heart disease in Leeds.
Leila added:
“I am very much looking forward to working with this team who are at the forefront of research in this area worldwide.”
“I’m excited to be participating in research to help push forward this very important specialty. Not only in the year that I am there but continuing a good working relationship with them in the long term to continue this essential work when I am back in Leeds.”
MORE NEWS
Thanks to a generous £17k donation by the Morrisons Foundation, CHSF has funded a vital breastfeeding project within the LCHU.
Children’s Cardiac Dietitian Alix Dunlop-Jones told us all about it…
Breast milk provides many long-term health benefits to children which are widely published. Being fed with breast milk is particularly important for babies who are premature and/or have certain cardiac conditions due to their increased risk of developing a potentially severe infection called Nectrotising Enterocolitis (NEC).
On the Leeds Congenital Heart Unit (LCHU) it was found that there were significant barriers in supporting mothers to breastfeed, and mothers were describing expressing breast milk as a major stress put upon them at an already worrying time.
The two main barriers identified were a lack of staff who were knowledgeable about breastfeeding and a lack of equipment for mothers to express breast milk. The ward provision means mothers were having to share limited equipment, and queue for one specific room on the ward.
To add further pressure, mothers in trying to keep their breast milk supply going would need to walk over from local accommodation to the ward overnight to express milk, due to not having a portable pump or suitable storage space to allow them to express milk overnight where they were staying. Concerns were raised that these night-time walks over to the ward were safety risks, putting mothers in a potentially vulnerable position due to the city centre hospital location.
Alix Dunlop-Jones with new mobile breast pumps funded because of you!
Breastfeeding Champions Megan and Emma
“Mothers now feel safer, more comfortable and supported to express breast milk and breastfeed”
Dietician Alix with new dedicated breastfeeding fridge
Charlotte’s son Charlie was diagnosed with hypoplastic left heart syndrome and had to have open heart surgery when he was just five days old.A group of breastfeeding champions from different clinical backgrounds have been created within the LCHU. These champions have all received specialist training to support mothers of poorly infants more effectively and confidently.
After hearing about the issues facing mothers and the desire of staff within the LCHU to provide specialist care for them, CHSF has provided a large amount of support to get this project up and running.
Thanks to the generosity of the Morrisons Foundation, a range of breastfeeding and additional equipment has been bought for the LCHU. Mothers can express while with their baby and have less worry about needing to share pumps while on the ward. A selection of mobile breast pumps, along with appropriate storage facilities, mean mothers now no longer need to walk across to the hospital in the middle of the night as they can express breast milk overnight in local accommodation provided for them by CHSF.
She told us:
“I had never expressed with any of my other children but was supported so well by the nurses – initially on the post-natal ward and then through PICU. I was given access to an expressing machine whilst in hospital and was also loaned an electric pump to bring home which was just absolutely amazing.”“Alix the dietician was amazing throughout and still is now! She not only talked out my expressing worries but she was able to talk through Charlie’s needs in a way we understood, helping us make the best choices and supporting me when I made the choice to stop expressing and move to formula at the right time for Charlie.”“We still see Alix regularly where she keeps an eye on Charlie’s weight and supports us with our tube-feeding journey.”
Charlie after open heart surgery at five days old
We are so grateful to the Morrisons Foundation and to the staff of the LCHU. We want to provide the best care for all families, and the provision of additional equipment and training has played an integral role in achieving this care.
We have already had amazing feedback from mothers who now feel safer, more comfortable and supported to express breast milk and breastfeed. Thank you.
FURTHER READING
Cardiac Dietician Alix has written a booklet called ‘Breastfeeding on the Cardiac Ward’ which has been designed and printed by CHSF thanks to your donations.
This project has only been made possible by the generous support of the Morrisons FoundationMORE CHSF NEWS
Generous charity donations will help families of young heart patients at Leeds Children’s Hospital.
Families of little heart warriors being treated at Leeds Children’s Hospital’s congenital heart unit will soon reap the benefits of two generous charity donations which aim to boost support in their hour of need.
Yorkshire Evening Post
By Joanna Wardill
Tuesday, 1st February 2022, 12:07 pm
The city’s Children’s Heart Surgery Fund (CHSF), which supports the hospital’s heart unit, has been able to revamp the family accommodation it funds on-site thanks to a £29,000 donation from the West Riding Masonic Charities Ltd – the charitable arm of the Freemasons of Yorkshire West Riding.
The funding was awarded last year and now the renovation has been completed – with seven rooms, in LGI’s Brotherton Wing, having received new furniture, flooring and a complete redecoration.
The family accommodation is a vital part of CHSF’s support and is used by parents who need to stay close to the hospital while their child is receiving life-saving treatment as an in-patient.
Sharon Milner, the CEO of CHSF said:
“Our family rooms are so much more comfortable and inviting since their renovation, and we are hugely grateful to the Freemasons of Yorkshire West Riding for their incredible donation.
“We know how much parents crave a relaxing space nearby to recuperate while their poorly baby or child is being treated at hospital, and we are thrilled to be able to offer this support.
“Thanks to our wonderful supporters, these rooms and the accommodation at Eckersley House will benefit families in need for years to come.”
Dr Andrew Wright, assistant provincial grand master, visited the rooms this week. He said they were “delighted” to be able to help.
“We cannot begin to imagine how distressing it is for parents to have a child in hospital needing open heart surgery. It’s vitally important for them to remain close throughout that time and these wonderful facilities will go some way towards easing that distress,” he said.
The Children’s Heart Surgery Fund is also celebrating a donation of £8,000 from the National Lottery Community Fund which go towards providing practical and emotional support for heart families.
The grant will help fund the role of the charity’s family support worker, Sarah Cherry, who took on the job in October 2021 and will help around 500 families a year.
Sarah said: “This tremendous grant will make a huge difference to the wellbeing of many heart families in our region.
“The support I give includes direct family support during the child’s hospitalisation, wellbeing sessions for families, workshops on financial stress and nutrition and signposting sessions to housing, finances, and family grant services.
“It is common for family relationships to be strained during a child’s hospitalisation, and my role helps build the resilience and positivity of parents so they can better support their sick children and siblings.”
CHSF are incredibly grateful to
MORE CHSF NEWS
Children’s Heart Surgery Fund (CHSF) has been awarded a grant of £20,000 from London North Eastern Railway (LNER) to help children born with congenital heart disease, and their families.
The ’Healthy Hearts and Minds’ project will provide children who have coronary heart disease with blood testing kits and mobile kits for monitoring heart rhythms, plus welcome packs for their parents.
The INR kits reduce stress, and allow a patient to test their blood levels themselves at home without missing school for hospital appointments.
The mobile ECG kits also allow patients to record their heart rate wherever they are, and send the data straight to their cardiologist.
Both pieces of equipment are known to positively benefit the mental health of patients and parents as they mean fewer trips to hospital and earlier support for any worrying symptoms.
The project will also fund welcome packs for parents on their arrival at the Leeds Congenital Heart Unit providing essential everyday items.
Worried mothers and fathers often arrive at Leeds with next to nothing, as their child’s diagnosis can require urgent treatment.
The CHSF welcome packs contain items including a toothbrush, toothpaste, a water bottle, a lunch voucher and the contact details for CHSF’s Family Support Worker, who provides direct support for families of young inpatients.
CHSF’s Fundraising Manager Ellie Brown said:
As a charity, CHSF are committed to supporting the heart, mind, family and future of all congenital heart disease patients in the region being treated at Leeds.
We are hugely grateful to LNER’s fantastic grant, as we think this project covers all of these bases.
We appreciate the first few days in hospital can be extremely traumatic for parents, and welcome packs give them a chance to refresh and take stock.
Once patients are discharged following treatment, it can be both time consuming and stressful to visit hospital for routine monitoring appointments, especially in the wake of the pandemic.
Both kits allow the patient to send in medical results from home, and we applaud LNER for helping to provide this holistic care for patients and their families.
David Horne, Managing Director at LNER added:
We have supported many great charities and groups in recent years through our Customer and Community Investment Fund as part of LNER’s commitment to being a responsible business.
Our communities along the East Coast route are important to us and we are delighted to support Children`s Heart Surgery Fund and the Healthy Hearts & Minds Project in this new round of funding, helping them to make a difference to people’s lives.
A huge thanks from everyone at CHSF to LNER for making this happen! We can only support hearts for life #BecauseofYou.
CHSF IN THE NEWS
CHSF is now able to buy a raft of new equipment to help make it easier for mums to provide potentially life-saving breast milk for babies with congenital heart disease.
Yorkshire Evening Post
By Joanna Wardill
Tuesday, 5th October 2021
Thanks to a generous £17k donation by the Morrisons Foundation, the Children’s Heart Surgery Fund has now been able to fund a vital breastfeeding project at Leeds Children’s Hospital’s congenital heart unit.
The funding will pay for breast pumps so mothers can express milk at the babies’ bedsides in the children’s cardiac ward as well as in the paediatric intensive care unit and in parental accommodation at the hospital.
The provision will also include privacy screens, foot stools, dedicated storage fridges, thermometers and special cushions – all to help make it more manageable for mothers of babies with congenital heart disease to breast feed in the hospital environment.
Children’s dietician for cardiology Alix Dunlop-Jones
For babies with certain cardiac conditions, breast milk is the only proven protection against developing a condition called NEC – a bowel inflammation that can lead to sepsis, bowel surgery and death.
And the numbers of cardiac babies needing breast milk for this specific reason is said to be on the rise, following new methods of surgery and updated research into the condition.
Alix Dunlop-Jones, children’s dietician for cardiology said:
“We are incredibly grateful to the Morrisons Foundation for their terrific grant…
…which will improve the nutrition and clinical outcomes for a significant percentage of future babies with congenital heart disease.”
“We expect our breastfeeding initiative to reduce the length of hospital stay for mother and baby, and there will fewer complications from infections due to the health benefits of breast milk.”
Clinicians predict the project will benefit more than 3,000 babies and their mothers over the 10-year-lifespan of the equipment.
Sharon Milner, the CEO of CHSF said:
“Because of the Morrisons Foundation, this breastfeeding initiative will benefit future infants with cardiac conditions in a number of ways, which align with our charity mission to support the heart, the mind, the family and the future.”
“This is yet another project which demonstrates the Leeds Congenital Heart Unit as a world-class centre of excellence.
“We can’t thank the Morrisons Foundation enough for their generous support of this initiative.”
David Scott, Morrisons Foundation Trustee said:
“I’m delighted that we’ve been able to support the Children’s Heart Surgery’s phenomenal work.
“The impact the charity has on families in the local area, as well as those travelling from across the country to receive the expert treatment the hospital offers, really is life-changing.
“The new facilities will make a huge difference for many years to come and I’m so proud that the Morrisons Foundation, together with CHSF has helped to make this happen.”