Create software and iPads

In 2020 we began funding a subscription to vCreate software for the Children’s Heart Unit at the Freeman Hospital and we are delighted to share that it is now a vital part of the service.

Whether their stay in hospital is long or short, a child’s inpatient journey can be extremely stressful for families, particularly if and when they are unable to be together at the unit.  For many parents, who must juggle work commitments, other children and potentially travel long distances to the hospital, it can be challenging to visit every day.  Recognising the challenges parents face when trying to visit their child in hospital, particularly when they are out-of-region, Chuf continue to invest in the use of secure asynchronous video messaging as a way of keeping families connected.  The secure system allows paediatric professionals to record and upload short video-clips and photos of the children on approved devices which are then shared directly with parents.

Staff Nurse at Freeman Heart Unit’s PICU, Rebecca Jack, said:

“The Diaries service has completely changed the way we do things on the unit. While we continue to update parents on their child’s condition, the photos and videos we’ve been sharing provide parents with a physical glimpse into the ward and their child’s wellbeing.”

A parent in PICU said:

“vCreate was a great tool which allowed us to create a picture diary for our son, and allowed us to see pictures of how he was doing whilst not at the bed side.  I found it extremely difficult leaving him over night, but seeing the images of him asleep, made me feel more settled.  The platform allowed the nurses to capture some lovely images, such as birthday celebrations, first bath and when we first took him for a walk off the unit.  It is such a valuable tool, and us as parents really appreciate the time the nurses took to capture such moments, but also for vCreate to be an accessible tool in such an emotional environment, and to give us photos we can share and keep forever”

The system has been used by over 150 families across the unit with over 2600 photos and videos recorded in the last year, the system is now part of the day to day care provided by the wonderful heart unit team.

Transplant Games

The Transplant Games aim to demonstrate the benefits of organ donation and transplantation, encourage transplant patients to regain their fitness and socialise with other families on a similar journey, as well as increasing awareness of the Organ Donation Register.

The games also seek to thank and celebrate donor families for their gift of life.

The British Transplant Games take place each year around the UK with The World Transplant Games and The Winter Transplant Games taking place every 2 years all over the world.  Chuf have supported the Freeman Children’s team to attend the British Transplant games since 2016, at a cost of £21,000 per year.

Chuf is proud to fund families attending the games each year and would love to help grow the team!  If you would like more information about attending the games please get in touch!

info@chuf.org.uk

Breastfeeding Support

Chuf funded an upgrade of all the breast pumps used to support breastfeeding Mums at the Children’s Heart Unit.  Along with the Chuf funded breast-feeding packs which are supplied, this upgrade was of vital importance so that Mums choosing to breastfeed have the correct equipment to support them in doing so.

We are proud to support the Children’s Heart Unit, ensuring that the very best equipment is available and stepping in where the NHS cannot.

Heart Hero parent Jenny, arrived at Freeman Hospital on New Years Eve.  She explains how much the pack meant to her: “We had support from Chuf from the first time we set foot in the PICU. The little extras such as breast feeding support packs made such a difference to our experience and helped us deal with a very difficult and stressful situation by taking away some elements of worry.”

Sibling Packs

In line with Chuf’s mission to support the children and their families we extend our support in many ways to the siblings of our Heart Heroes, who can often also spend long periods of time on the unit during school holidays.

One way in which Chuf tangibly improves the time spent in hospital for siblings is through the provision of sibling packs. Containing colouring books, pens and activity books, siblings of Heart Heroes receiving treatment on our intensive care unit are given a pack to enjoy whilst at the bedside of their loved one.

Food Vouchers

Throughout the pandemic Chuf worked hard to support each and every family facing the most difficult time of their lives, and as a result of everchanging restrictions we introduced subsidies for meals from the hospital canteen for parents.  This ensured that they could keep their Heart Hero safe by not leaving the hospital and also made sure they felt that they were being looked after at a time when they were more isolated than usual.

Whilst the rest of the world may have slowly adjusted to a new normal, hospital restrictions around vulnerable patients remained vitally important.  Following consultation with staff and parents Chuf continued our feeding families, for long term families and we have been overwhelmed by the feedback received.

“My partner and I couldn’t be on the ward together at the same time due to the Covid restrictions, so we were like ships passing in the night.  When Chuf provided the meal vouchers for the hospital canteen, that was the one time of day we could sit down together and support each other.  If we hadn’t had the meal vouchers, I don’t think we’d have done that, feeding ourselves didn’t feel like a priority, but really it helped so much at a stressful time with our little one so poorly”

Although we started funding food vouchers as a short term solution during the pandemic, it became clear that they are a vital support to families on the Heart Unit, therefore Chuf continue to fund food vouchers for families at a cost of £25,000 per year.

Washbags

Each family who is admitted to the Children’s Heart Unit in an emergency situation is given a Chuf washbag. This provides basic overnight essentials to help families shower and brush their teeth. Often families who are admitted in an emergency situation arrive at the unit with nothing at all and Chuf is there to help in those first few hours.

It costs just £20 to provide a Chuf washbag.

Covid 19 Response

The impact of the Covid-19 pandemic affected us all, but for children with heart conditions it was an especially worrying time.

The need for social distancing had an impact on the services that Chuf funds and the care being delivered at the unit had to change; non-essential visits were cancelled, nurses wore more protective kit, which can be frightening for children, and families were restricted to only one parent or carer.  Communal areas were all closed, including the playroom, and ‘Make Me Sparkle’ and ‘The Clown Doctor’ visits also had to be suspended until further notice.

Your support helped Chuf respond to the pandemic, here is how:

The communal kitchen space in Scott House could not be used due to the government guidelines around Covid-19. An emergency float was provided to feed families. Chuf also funded hotel stays and transport for ‘at risk’ families that could not stay in Scott House, so they could still be there for their hospitalised Heart Heroes.

Chuf purchased 3G enabled tablets with a subscription to Disney+ along with the purchase of new games, new toys and magazine subscriptions to help our Heart Heroes pass the time.

Hand creams for staff on Ward 23, PICU and Clinic E were also purchased along with brand new large water bottles for parents to access because they couldn’t purchase drinks from the Chuf shop.

Parking/Emergency Travel

Throughout the year there are emergency situations where Chuf are able to step in and alleviate some of the financial burden for families; for example funding emergency taxis when a patient is transferred to another unit.  We’ve also funded car parking costs for families who need to stay with us for a significant period of time.  Annually this support costs £6,000.

Scott House

In October 2014, Chuf were thrilled to be able to unveil brand new parent’s accommodation, built in partnership with the Sick Children’s Trust, in the grounds of Freeman Hospital after raising £1.65 million towards the project.

Scott House provides both emotional and practical support for families and contains 18 en-suite bedrooms and a transplant flat to help patients prepare to go home, as well as communal living areas including kitchen, dining rooms, lounges, playrooms and laundry facilities.  Each private family bedroom has a direct telephone line to the ward so that parents can be contacted day or night should their child’s situation change.  The Sick Children’s Trust provide ongoing support and management of the facility employing a dedicated House Manager and House Assistants who are on hand to ensure families are supported for the duration of their time in the house.

The name ‘Scott House’ was chosen to recognise the achievements of Anne Scott, whose tireless fundraising on behalf of her two daughters led to the founding of our charity now known as Chuf. Chuf was originally called the Lesley Anne Scott Memorial Fund after Anne’s daughter Lesley Anne, who sadly passed away in 1979.  Lesley Anne was born with a congenital heart defect, as was her sister Lisa who also sadly died from the same heart-related condition.  Chuf are delighted to recognise the vision and dedication of Anne Scott and her family in the name of the new house.

Chuf continues to support the Sick Children’s Trust annually with a grant towards the running costs of Scott House.

Psychology Services

Chuf are proud to have supported Psychology Services for many years at the Freeman and beyond and we are now working with the North East & North Cumbria Congenital Heart Disease Network to establish what psychological services are needed across the network.

Bereavement Support

Sadly, the terrible reality is that not all of our Heart Heroes recover and go home with their families.  At Chuf we are there throughout the good times and also the unthinkably hard times.  We provide support to families throughout their whole journey.  We fund memory stars, jewellery charms and work with the staff at the Children’s Heart Unit to fund bereavement packs at a cost of over £2,500 per year.

Emergency Accommodation

At Chuf we step in to not only provide hotel accommodation for families who are unable to stay in Scott House but also to provide respite accommodation for families who have more than one child.

Annually we  provided hotel accommodation over the Christmas period for families who have a little one in hospital and other children at home to ensure that families can  be together on Christmas Eve and over the festive period.

The annual cost of additional accommodation is over £6,000.

Wall mounted changing station and mats for Clinic E

Wall mounted changing stations have been purchased to enable families to change their children with ease in a small room whilst waiting for their outpatients appointment.