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Children’s Hospice Week begins today

Author: Leila Hawkins
21 May 2018

Today marks the start of Children’s Hospice Week, the week dedicated to raising awareness of children’s hospice services in the UK and the thousands of children and young people they support.

Children’s charity Together for Short Lives (TfSL) has launched a campaign with the theme ‘Life’s short,’ revealing the top five moments that matter to children with life limiting conditions. The theme was chosen because while it is a commonly used phrase, it is especially poignant for children with life limiting conditions as they do not have time to waste.

The charity is encouraging supporters to reflect on their own special moments using #LifesShort on social media. A survey that asked children what they most love to do yielded this top five:

  1. Cuddles
  2. Music
  3. Spending time with family
  4. Playing outside
  5. Days out

Liz, mum to ten-year-old Ava, spoke about her daughter’s love of music:

“The things she enjoys most in life are definitely music as number 1! This is because it has the ability to get through when nothing else can. When she is well it excites her, she can feel the beat and rhythm penetrating through her body and it tells a story. When she is unwell, it calms and soothes her and takes her away to a safe place where the pain melts away.”

For Myles, aged two, the most important thing is spending time with family. His dad Jerry said:

“The facilities and staff at Richard House are amazing. Myles loves the fun play activities, the music therapy sessions, the day trips, children parties and visits to the park... [Hospices are] like a brilliant extended family member offering families and children joy, happiness, and the ability to be included in the normal activities of family life taking away those barriers.”

Barbara Gelb OBE, CEO of Together for Short Lives, said:

"Children’s Hospice Week is still the only week in the year dedicated to raising awareness and funds for the lifeline children’s hospice services across the UK, and the thousands of seriously ill children and young people that they support."

Several big national brands are backing the campaign. Disney are donating some of their classic films to children’s hospices and hosting exclusive events in hospices for staff and families to enjoy. Royal Mail will be adding a special Children’s Hospice Week post mark on mail.  Arts and crafts retail chain Hobbycraft will be hosting in store crafting and fundraising events on Saturday May 26, and customers will be able to donate in their stores throughout the week to support the campaign. 

Chestnut Tree House in Sussex has a similar theme titled ‘For the Now,’ encouraging people to remember that life is short, and to recognise the importance of making moments that matter. The hospice has released a short film to show how it is helping children and their families live For the Now.

The film shows the range of activities children take part in at the hospice, including a multi-sensory room where they can play at being astronauts, a music room for them to form their own bands, and games they can play with at home. The hospice also hosts walks in the woodlands and around the local community.  

Chestnut Tree House has been supporting 12 year-old Charlie and his family for five years. He has cerebral palsy and epilepsy, both as a result of being born at 32 weeks, but his parents, Mary and Russ, say that this does not stop him having a happy childhood.

On visits to the hospice he loves playing the Xbox and spending time in the music room, where he can make different sounds on the drums and piano. For his dad, Russ, one of the best things about the hospice is that “everybody knows Charlie. They know his strong points and what he likes to do. It is the one place where he feels totally relaxed, as he can go and do his own thing.”

For Charlie, For the Now is… playing his favourite game on the Xbox.

Keech Hospice Care in Luton today launches a new 24-hour advice line for the families of children with life limiting conditions. The free phone line will provide round-the-clock advice from qualified nurses seven days a week.  

Jenny Alger, whose son is supported by the hospice, is delighted the service is being launched. She said:

“My son Jacob, 3, has Dravet Syndrome. This means he can have a seizure at any time. The longest we have been without a seizure in his whole life is about six weeks and so making sure we have the support we need on hand is essential.”

“Jacob can be fine one minute but he will become ill really quickly the next. We have grown more confident in learning how to deal with it but having Keech on call 24 hours a day is a lifesaver for us and would be for any family like ours too. Just being able to speak directly to the nurses’ station and get advice on what to do straight away is amazing”

Sonya O’Leary, Children’s Lead Nurse at Keech Hospice Care, said the new advice line will allow the charity to support more families by signposting to other services who may be able to offer further help, or just by providing a listening air when they are in need. She said:

“Launching this new service is an innovative step for us. Access to specialist advice on palliative care over the phone 24/7 is not widely available in the UK, so we want to reach out to as many families in our local community as we can, as we believe anyone facing a terminal or life limiting condition should receive excellent care and support.”

“Most of our families have several consultants, doctors and nurses involved in their child’s care - all looking at individual aspects of their illness. We look at that child and family’s needs as a whole, take a holistic approach and try to reduce the need for them to go to hospital as much as possible.”

Children's Hospice Week runs till May 27.

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