Tag: RHCYP

Baby Gabriel lights up Edinburgh Children’s Hospital for Christmas

A baby boy who has spent his entire life at Edinburgh’s Royal Hospital for Children and Young People (RHCYP) has now had the honour of turning on the hospital’s Christmas lights. 

One-year-old Gabriel Sebastian was born 17 months ago at the hospital and has not spent a single night at home since. His parents, Teena Thomas and Sebastian Paul, have never left his side. 

Gabriel has Spondyloepimetaphyseal dysplasia – a 1 in a million genetic condition so rare that doctors cannot predict how it might shape his life. He may be short and could have facial abnormalities and brittle bones. He is unable to breathe by himself so has a tracheostomy. 

Yesterday afternoon, alongside his proud parents, and Hibs captain and Edinburgh Children’s Hospital Charity volunteer Joe Newell, Gabriel pressed the big red button to light up the 20ft tree and surrounding area of the hospital which has cared for him since birth.  

Mum Teena said: “At our five month scan, we were told something was wrong with our baby. His bones weren’t really there, his spine barely developed, his tiny arms and legs too short. And there was a 50% chance that he would be stillborn.

“But I could feel him moving so strongly, like he was saying, ‘I want to come into the world Mama.’ How could we not fight for him? 

“We prepared for the worst but clung to hope. We bought a Moses basket, decorated his room. We thought, ‘We’ll be in hospital maybe five days, then he’ll come home.’ He was born on 2nd June 2023. We’ve been living here ever since. 

“Gabriel’s smile is the most powerful thing. Through every invasive operation, every painful procedure, every heart-wrenching emergency, he comes back smiling. And that keeps us going.” 

Teena and Sebastian will always be grateful for the incredible care and support they and Gabriel have received from the RHCYP, as well as from Edinburgh Children’s Hospital Charity (ECHC).

The family is supporting ECHC’s Christmas appeal, which asks supporters to help bring the sparkle to seriously ill children and families in hospital this Christmas.

Teena continued: “The care and love we have been shown by everyone at the RHCYP has been outstanding. Everyone has been such a huge part of his journey. It’s thanks to everyone there that Gabriel is here with us this Christmas. 

“We are honoured to have Gabriel switch on the Christmas lights for ECHC. We’ve missed out on so much of what it is to be a ‘normal’ family. This is what the charity really understands. We never wanted him to be treated like a child who is ill. Even in the chaos, he gets to play, to laugh, to have moments of happiness. ECHC makes this happen. 

“Gabriel’s future is uncertain. We don’t know if he will ever breathe on his own. We don’t know if he will speak or eat. But we do believe he will be with us. If you’re heading home this Christmas, please spare a thought for children like Gabriel who will be in hospital instead this year.” 
 
The Christmas Light Switch On is just one of many hospital activities that ECHC has planned to make this Christmas one to remember for children who are sadly too unwell to spend it at home. 

Pippa Johnston, Deputy CEO at ECHC, said: “We would like to say an enormous thank you to Gabriel and his wonderful family for helping to make the hospital’s Christmas light switch on so memorable. They are a remarkable family and Gabriel is a little star in every sense of the word. 

“Every year, in partnership with our friends at NHS Lothian, ECHC works hard to bring the sparkle to the hospital at Christmas. We rely solely on donations to do this. We are asking the people of Edinburgh (and beyond) to help make Christmas extra special for children in hospital this year.” 

Anne Milburn, General Manager for Women’s and Children’s Services at NHS Lothian, said: “Christmas can be a really difficult time for patients who are unwell, and so watching Gabriel and his family turn on this year’s Christmas lights at the RHCYP has brought a real sense of festive cheer. I’d like to extend our thanks to them for making the light switch on so special.

“Our expert staff and ECHC go above and beyond every day of the year to make sure that children experience the best care, and so it’s important that those who will be spending most of the festive period in the RHCYP still experience the magic of Christmas.”

To make a donation to ECHC’s Christmas appeal, visit www.echcharity.org/donate

Edinburgh Children’s Hospital Charity: ‘No Time To Wait’

Charity head: New children’s mental health service has “the potential to be transformational”

  • ECHC reports promising data showing children and families benefiting from ‘The Haven’ 
  • No Time To Wait pilot service attracts almost 1,300 visits in first six months  

A new pilot service set up to tackle the mental health crisis facing children and young people in Scotland has released promising data showing the numbers benefitting from its service in the first six months of operating. 

Developed by Edinburgh Children’s Hospital Charity (ECHC), ‘The Haven’ wellbeing and resilience service opened at The Fraser Centre in Tranent in September 2023. It is the first centre to open under the Charity’s ‘No Time To Wait’ strategy.

The Haven aims to support families with children struggling with their mental health and prevent problems escalating to the point where professional intervention is needed.

It is open for three afternoons a week and has attracted 1,264 visits in the first six months. 

Roslyn Neely, CEO of ECHC said: “Children and young people in Scotland are in the midst of a mental health crisis, a crisis which doesn’t just impact the child, but the whole family who feel they have nowhere to turn. 

“We are staggered by the number of people we have been able to support through The Haven, and the impact the service has had on young people and their families. It really does have the potential to be transformational.

“We truly believe there is no time to wait. Allowing the mental health crisis to escalate just wasn’t an option.”

The service was developed in response to ECHC’s research which found that over half (59%) of Scottish families have a child who has experienced a mental health concern. It is hoped the service will be scaled and delivered in community settings and available to all children struggling with their mental health, and their families, across Scotland.

The Haven is open to any child or young person with a mental health concern, and any member of their family, including parents, carers, siblings and grandparents. It offers support in a relaxed and informal setting and provides interventions including family support groups, signposting, fun activities and a drop-in service for those who may just need a cup of tea and a listening ear.

Roslyn Neely added: “While we are humbled by the results of the first six months, this is just one pilot service in one small town. We want to see a Haven available for every child who needs it, in every community.”

The Haven is being piloted in Tranent for two years to ascertain the scale of demand. It is modelled on the charity’s existing Hospital Hub, which delivers very similar interventions to children and families visiting Edinburgh’s Royal Hospital for Children and Young People (RHCYP).

At its best, The Haven may negate a family’s need for future access to medical support, alleviating the pressures on Scotland’s CAMHS.

Fiona O’Sullivan, Director of Children’s Wellbeing at ECHC, said: “The Haven exists to support the whole family; the child, the parent, the grandparent, the auntie, the carer, whomever is closest to the child in need. 

“We have supported people suffering from a range of issues including anxiety, depression, self-harming, challenges with education and school attendance, and eating disorders. Without any medical intervention we have provided young people and their families coping mechanisms to deal with these issues, and crucially, we are seeing positive results.”

Children use virtual reality to prepare for surgery at New Sick Kids

An Edinburgh children’s hospital has become one of the first in Scotland to use a virtual reality headset to help children prepare for surgery. Patients at the Royal Hospital for Children and Young People (RHCYP) will now be able to prepare for surgery through an immersive virtual reality (VR) experience. 

Thanks to funding from the Hearts & Minds charity, the home of the Clowndoctors, and NHS Lothian charity, the RHCYP will launch its first VR film alongside five headsets this week as part of an innovative pilot.  

A number of patients and staff members were involved in the development of the VR pilot including Isla Burns, 14, who advised on the script with Hearts & Minds and recorded the introduction.  

The schoolgirl takes centre stage in the project after undergoing ten operations and surgical procedures since she was two-years-old and is keen to reassure and help other children and young people. 

Isla from Edinburgh had surgery at the RHCYP to lengthen her left leg which had developed to be 8cm shorter than her right. She underwent an initial 8-hour surgery where her leg was broken and then encased in a brace which screwed 26 metal pins into her leg.  

Every day, her mum Annabelle had to turn the pins to move Isla’s bones further apart, encouraging a ‘ghost bone’ to grow in between. 

Isla said: “When I was a little younger and virtual reality wasn’t used in hospitals yet, it was hard to visualise what would happen before my operations by chatting it through.  

“This virtual reality film will help young people by allowing them to see what the wards look like and get an idea of how the whole process works. It is a great visual tool that will help so many kids prepare for their operations and feel less anxious about what is to come.”   

After the operation, Isla’s leg grew 7cm in just seven weeks. She has since had had a further 9 surgeries and spent a full year learning to walk again under the guidance of physiotherapists at the RHCYP. 

Under Isla’s guidance, the VR film features the Clowndoctors who are about to undergo surgery at the RHCYP. Alongside the help of NHS Lothian staff, the Clowndoctors showcase a virtual walk through of the pre-operation journey; from the surgical ward, into the anaesthetic room and then into theatre.  

Isla used her own experiences to help the Clowndoctors outline every step of the process and put the minds of younger patients at ease.  

The film, which was produced by filmmakers Neon8 who initiated the project with Hearts & Minds, uses cutting-edge technology which enables patients to have a gentle immersive viewing experience while remaining seated or reclined.  

The VR pilot is being rolled out within the hospital and will be managed by Play Specialists who generally prepare children for surgery.  

Allister Short, Director of Women’s and Children’s Services at NHS Lothian, said: “I would like to especially thank Isla and her family alongside our staff and charity partners who helped to craft this extraordinary VR film.  

“When a child is about to have surgery, it is often an emotionally unsettling time for the entire family. It’s hoped that the VR headsets will help to alleviate patient’s anxieties before a procedure takes place.  

“I look forward to seeing the positive impact this ground-breaking technology will have on patients and staff.” 

Rachel Colles, Co-Artistic Lead, Hearts & Minds, said: “I first tried a VR headset when running a research project for children exploring virtual reality theatre with Neon8. It was fantastic to see the children’s responses and excitement with this medium and it occurred to us that we could use this in our work as Clowndoctors.  

“This collaboration with NHS Lothian alongside our fabulous Clowndoctor colleagues has allowed us to create what I hope will be a beneficial and enjoyable way to support children preparing for surgery at the RHCYP.” 

Jane Greenacre, Head of Programmes, NHS Lothian Charity, said: “We are delighted to have funded five VR headsets which aim to reduce children’s worries before they undergo surgery. 

“The VR headsets will enable children and their parents to complete a virtual walk through of what will happen at each step of their pre-operation journey.  

“This is a great example of how NHS Lothian Charity works with NHS Lothian colleagues and third sector partners to support ideas that improve the experience of patients and their families across the Lothians.”

Meerkat’s Out of the Bag! Cheeky creatures coming to Edinburgh Children’s Hospital

Children at an Edinburgh hospital will soon be learning important conservation lessons from some very unusual teachers – a mob of meerkats based in an outdoor classroom within the grounds!

The first programme of its kind outside of Australia, the meerkats from The Royal Zoological Society of Scotland’s (RZSS) Edinburgh Zoo will reside at NHS Lothian’s Royal Hospital for Children and Young People (RHCYP) and be at the heart of an extensive learning and discovery experience.

Thanks to a partnership between Edinburgh Children’s Hospital Charity (ECHC), NHS Lothian and RZSS, the inquisitive creatures will give young patients, particularly those staying long term, the opportunity to learn all about nature and the environment.

Edinburgh Zoo currently delivers a weekly programme of educational activities at the RHCYP, including projects on penguins, pandas and tigers, all of which encourage children to think about their place in the world and the importance of wildlife within it.

The meerkat enclosure will replicate their natural habitat and zookeepers from Edinburgh Zoo will care for them and provide meerkat educational sessions while on site.

Roslyn Neely, CEO of ECHC, said: “Some children are too unwell or have been in hospital for so long that they don’t have the opportunity to engage with the outdoors, or interact with animals.

“Many of the children who visit the hospital care passionately about nature and the environment. Our programme will allow them to learn from experts while getting up close to the best teachers of all – the meerkats themselves.

“The wellbeing benefits of engaging with animals and using nature in the healing process are well documented, and there’s great excitement within the hospital in anticipation of our furry friends arriving.”

David Field, chief executive of the Royal Zoological Society of Scotland, said, “Our conservation education programme has already been a great success and now we are taking this incredible next step by creating the only meerkat enclosure at a children’s hospital outside of Australia, making this a first in the UK and Europe.

“Being close to nature and animals can have a tremendous impact on people’s mental and physical health and wellbeing. We also know that people and communities are more likely to help protect nature when they have had the opportunity to connect with our natural world.

“We are really looking forward to bringing a group of meerkats to live at the hospital next year and seeing the impact this will have for the children and their families.”

Allister Short, Service Director, Women’s and Children’s, NHS Lothian, said: “We are really excited about this innovative programme coming to the RHCYP.

“Meerkats have been introduced into many children’s hospitals in Australia and this unique concept encourages children to learn and be inspired, particularly when they’re in hospital for long periods of time.

“We want to brighten up our patients’ days in an educational way and we know that the meerkats will be an exciting addition to the RHCYP.”

The programme is currently in the early stages of planning and it is hoped the meerkats will move into their new home at the RHCYP from 2024.

Children in hospital’s Christmas Wishes redirected to people of Edinburgh

Letters to Santa from children in hospital are being redirected to the people of Edinburgh this Christmas.

Children at the Royal Hospital for Children and Young People (RHCYP) have shared their heart-breaking wishes, but sadly Santa alone can’t make these wishes come true.

Edinburgh Children’s Hospital Charity (ECHC) has stepped in to ask the people of Edinburgh to help bring a little magic to families who won’t be at home for Christmas this year.

Macy, aged 4, is one of the children whose letter to Santa has been sent to homes across the city. She was diagnosed with Acute Lymphoblastic Leukaemia in January this year and has since been receiving treatment at the RHCYP.

Mum, Gillian, said: “Due to Macy’s chemotherapy treatment, she has lost her lovely blonde hair which she has found really hard. Her wish this year is for her hair to grow back long enough so she can put it in a ponytail just like mine.

“We are also hoping that she will feel a little bit better as last Christmas she was very poorly. She had frequent colds prior to her diagnosis and just wasn’t in the mood to play with any of her toys.

“Throughout Macy’s treatment, the care and kindness from her nurses, all of the NHS Lothian teams we’ve met and the support from ECHC, as well as lots of other charities, has been phenomenal. It really has made our hospital journey that little bit easier and we are so very grateful to all those who have stood beside us during the most difficult times.”

ECHC supports the work of the RHCYP and NHS Lothian. The charity’s new ‘Redirected Letters to Santa’ appeal is asking supporters to make a gift to support families facing a hospital stay this December.

Pippa Johnston, Director at ECHC, said: “The reality is that some children and young people have to be in hospital over Christmas, so what should be a time of magic and laughter becomes a time of worry – for them and their families.

“While we can’t take away their pain, we can deliver some happiness. Together with our friends in the NHS, we work hard to make sure no child or young person misses out on the joy of the festive season.

“You don’t need a sleigh, or reindeer, or a white beard, but some letters will need more than Santa’s help. We are asking the people of Edinburgh to make a donation to help deliver magic and make Christmas in hospital that little bit easier for children and families.”

To make a donation to ECHC’s ‘Redelivered Letters to Santa’ appeal, visit:

www.echcharity.org/donate

Be prepared for Road Works when travelling to RIE and New Sick Kids

If you are travelling to the Royal Infirmary of Edinburgh or Royal Hospital of Children and Young People for an appointment, please be aware of road works which are due to commence Monday 17 October 2022, for 24 Weeks as this will affect your travel time to your appointment.

The road works will result in 2-way Temporary Lights on Old Dalkeith Road near Little France Campus. The lights will move as work progresses from the campus up towards Shawfair Park and Ride/Train station. This will take a break for 2 weeks from Friday 23 December 2022 until Friday 6 January 2023.

We have been informed that this will result in a minimum of 20 minutes delay up to 50 minutes at peak times.

It has been suggested that people travelling to these sites should instead travel via Gilmerton Road, Edinburgh which runs parallel to Dalkeith Road, to access the Campus, as this may limit time impact.

Lift Off for NHS Lothian’s new helipad at New Sick Kids

NHS Lothian and the HELP Appeal are today (12 April) celebrating an important milestone as the new helipad located at the Royal Hospital for Children and Young People and the Department of Clinical Neuroscience (RHCYP/DCN) officially opens.

The helipad, located above the fourth floor of the RHCYP/DCN will serve both the Royal Infirmary of Edinburgh and the RHCYP/DCN giving direct access to child and adult emergency departments, as well as all other clinical departments based on site.

Hospital helipads play a critical role in trauma care by helping to minimise the time it takes to transfer critically ill patients. Without them, patient treatment can be delayed, which can have a devastating impact on survival rates.

Dr Jon McCormack, Clinical Lead for Paediatric Major Trauma, NHS Lothian explained that having access to a helipad plays an important role in optimising patient flow pathways for both planned and emergency transfers.

He said, “The helipad will provide access to hospital services 24 hours a day, seven days a week, with three trained helideck responders being available to ensure safe landing and departure. This will help to enhance patient care by facilitating a seamless transition of patients from the air ambulance to in-patient services.”

The helipad was part funded through the HELP Appeal, which aims to ensure that patients who sustain life threatening critical injuries or illnesses are able to be flown directly by air ambulance to a Major Trauma Centre or key A&E hospital, where all the specialist clinical skills and medical equipment are immediately available, improving their chances of survival and recovery.

The HELP Appeal is the only charity in the country funding hospital helipads.

Robert Bertram, Chief Executive of the HELP Appeal said, “The amazing RHCYP, DCN and the Royal Infirmary of Edinburgh treat some of the most seriously ill in Scotland. This lifesaving helipad will dramatically speed up the time it takes to transfer these patients from helicopter to hospital anytime of the day or night, giving them the best chance of survival and recovery.

“We had no hesitation in providing the £700,000 needed to ensure the hospitals had a state-of-the-art helipad – a crucial element in their emergency care offering – as it will save many lives.

“With brand new helipads opening in Applecross and Campbeltown, and the helipad opening in Edinburgh today, we are so pleased that the HELP Appeal is making a positive impact in emergency care across Scotland. We look forward to helping many more hospitals secure helipads in the future.”

Jim Crombie, Deputy Chief Executive, NHS Lothian said, “We are incredibly grateful for the support of the HELP Appeal in part-funding our new helipad.

“It really will make a positive difference to our patients and will no doubt save many lives not just here in Lothian, but across Scotland.”