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Children's hospices are incredible places which offer a lifeline to children and families. They are full of everyday heroes – ordinary people in extraordinary circumstances. Please help your local children's hospice continue with their super work!
Fern Britton
News
13/05/2011
Simon Cowell challenges people's misconceptions of children's hospice care
Simon Cowell, Patron of Children's Hospices UK, is backing a campaign to raise awareness of the work of children's hospices. This follows new research commissioned as part of this year's Children's Hospice Week (14-21 May) which reveals that there is a lack of understanding about the valuable support that children's hospices provide for life-limited children, young people, and their families.
When asked to name an organisation that cares for children not expected to reach adulthood, more than seven out of ten people surveyed (73%) did not cite children's hospice. This low awareness and understanding could mean that some families are missing out on the valuable services on offer.
Speaking in a radio interview today (13 May), Simon Cowell said: "What did I think a children's hospice was going to be like? A very, very sad place to go; the reality was, it was something completely different.
"My opinion changed when I went to see one for the first time, and the best way of describing it is, I thought of it as grey and actually it's colour. It's just the most extraordinary thing when you go into one of these places because obviously there are kids there that have had the most horrible time but they're really happy places.
"Rather than a hospital think of it as a large home and everyone feels part - it sounds corny but it's true - everyone feels part of this one huge family. [They are] very, very special.
"[A children's hospice is] more than just a building. It's an environment which creates happiness for these kids, and I cannot tell you how important this is. And it's not just the kids, it's the families as well, of course, that need help.
"The reality is, every one of these hospices relies on the public's generosity to maintain what they're doing, otherwise they don't exist - that's the reality. And Children's Hospice Week is an opportunity to help them financially, tell your friends about it - awareness is really key here."
12/05/2011
New research shows children's hospices largely misunderstood
New research, commissioned by the national charity Children's Hospices UK, shows that there is a lack of public awareness and understanding about the valuable support that children's hospices provide for children and young people not expected to reach adulthood, and their families.
The research was conducted as part of this year's Children's Hospice Week (14-21 May) which aims to breakdown misconceptions about children's hospices and raise awareness about the support they provide.
Barbara Gelb, Chief Executive for Children's Hospices UK, said: "Families caring for life-limited children - often 24 hours a day, seven days a week - can feel under enormous emotional, physical and financial strain. Thousands of these families rely on their local children's hospice each year as a place where the whole family can access flexible, practical and free support at home and in the hospice".
"Our concern is that the low awareness and understanding highlighted by this research could mean some families are missing out on the valuable services on offer. That's why Children's Hospice Week is so important. It is our opportunity to find new ways of breaking down these misconceptions, to highlight the wide range of services children's hospices offer so that more families can benefit".
The research highlighted a number of important themes, including:
Lack of awareness about children's hospices
When asked to name an organisation that cares for children with life-limiting conditions, more than seven out of ten people (73%) did not cite children's hospice.
Confusion about who children's hospices support
The majority perception from the research (65%) is that children's hospices support children with cancer. Although not incorrect, only a small number of children supported by a children's hospice are affected by cancer with the majority having a wide range of complex neurological and metabolic conditions which deteriorate over a period of many years.
Beyond the hospice building
Just four in ten people (40%) are aware that children's hospices provide care in people's own homes. Whilst children's hospices do support families in a building, the majority also provide support in people's homes too.
Support for the whole family
Less than half of respondents (48%) are aware that children's hospices offer the opportunity for healthy brothers and sisters to take part in activities. And only 45% of those surveyed are aware of the support that extended family, like grandparents receive from children's hospices.
It's not just end-of-life-care
Whilst 91% of respondents correctly identified end-of-life care as a service that children's hospices provide for children and young people, many are unaware about the vast range of other support they provide. For example, far fewer people identified that they care for children in the home so parents can have a break (69%) or offer play and music therapies (68%).
12/05/2011
Invisibility named as nation's most envied super power
According to a recent poll, conducted as part of this year's Children's Hospice Week hero campaign (14-21 May), invisibility is the nation's most envied super power (32%), closely followed by flying (21%). Superman was also named as the UK's favourite superhero.
The superhero survey was commissioned by Children's Hospices UK to help raise awareness of the services available to children not expected to reach adulthood and their families. Just like superheroes, children's hospices are there for people when they need them most. Children's Hospices UK is calling on you to be a hero in Children's Hospice Week and help raise funds for these vital services.
Some of the more interesting superpowers people would like to have include, the ability to cure illness, immortality, time travel and physic powers.
You can get involved in Children's Hospice Week by taking part in Superhero Friday (20 May) a special day of hero inspired fundraising activities. Why not dress up as a superhero and make a donation to Children's Hospices UK? Get your friends, family and work colleagues involved and see who can come up with the best outfit!
Visit www.childrenshospiceweek.org.uk for information on Superhero Friday and other hero inspired fundraising ideas.
05/05/2011
Simon Cowell visits local children's hospice to celebrate Children's Hospice Week
Simon Cowell, Patron of Children's Hospices UK, visited Richard House Children's Hospice this week (2 May) to spend time with young people not expected to reach adulthood and their families, who rely on the hospice for much needed support.
The visit was just in time for Children's Hospice Week (14-21 May), the UK's only awareness and fundraising week for children's hospice services. With the theme of heroes, the week celebrates local children's hospices which, just like superheroes, are there for people when they need them most.
During the visit, teenagers had the opportunity to quiz Simon about his showbiz lifestyle in an ‘audience with'. As a long-term supporter of children's hospices, the visit gave Simon another chance to see firsthand the vital work children's hospices provide to children and young people who are not expected to reach adulthood and their families.
Simon Cowell said: "Whenever I visit a children's hospice it is clear to see that they are incredible places that offer a lifeline to the families that use them. As patron of Children's Hospices UK, I'm calling on you to be a hero and fundraise for Children's Hospice Week."
Barbara Gelb, Chief Executive of Children's Hospices UK said: "We are thrilled to have Simon supporting Children's Hospice Week. Visits to children's hospices such as Richard House make such a difference to children and families. Simon's ongoing support helps us to increase awareness of the much needed, unique services that children's hospices provide to children and young people who are not expected to reach adulthood and their families."
Visit www.childrenshospiceweek.org.uk for information about Children's Hospice Week and ways that you can get involved.
05/04/2011
Marvellous Masks at Claire House
Stevie and Hanna chose their heroes as their parents and created masks for them with Play therapist, Catherine Whittam at Claire House Children's Hospice.
Stevie is a 21 year old who suffers from Cystinosis and has been coming to Claire House for nearly two years.
Stevie lives in Runcorn with her mum, stepdad, two sisters called Caitlin and Tia and brother Shaun.
Stevies says "Claire House means the world to me, I love it and all the staff are really kind. Mum loves it when she stays at Claire House because she can relax".
Stevie's hero is her mum.
Hannah is a 19 year old who suffers from Lymphoblastic leukaemia and has been coming to Claire House for five years.
Hannah lives in Wales with her mum, dad and younger brother Ryan.
Hannah says that the children's hospice gives her family a break. "I love coming to Claire House - it's fun and I get lots of different experiences and there are always lots to do!"
Hannah's mask is half her mum and her half dad - she couldn't decide who the hero was as both are her heroes.
31/03/2011
Marvellous Masks at Little Havens Children's Hospice
Frazer is 18 months old and along with his family - sister Imogen, 5, brothers Finley, 7 and Rory 9, mum Katie and dad Keith - stayed at Little Havens Children's Hospice for a respite break for the first time just before Christmas in 2010.
From the age of eight weeks old, Frazer spent two weeks on life support in intensive care because of a serious infection on his brain, followed by months on a high dependency Neurology ward. As a result Frazer was diagnosed with a rare form of epilepsy known as West Syndrome. He also has cerebral palsy, cannot sit up by himself and has serious brain damage.
Katie says, "We have absolutely fallen in love with Little Havens. It really is the small things, like being able to go swimming together as a family that make a huge difference. The kids love splashing about together and can't do that in any other pool. That is what makes Little Havens extra special to us.
"We worry what the future holds for Frazer but just being at Little Havens is enough of a break. Knowing that the children and my family can be all in one place, and knowing that life will feel normal for us all make the hospice the little haven it is."
Rory, Finley and Imogen created new superheroes for each of their masks. They all helped Frazer create his mask and called his the 'Bug Buster' - a superhero to blast away all the bugs in his brain.
23/03/2011
Simon Cowell is a Children's Hospice Week hero
Simon Cowell, Patron of Children's Hospices UK is calling on you to be a hero for Children's Hospice Week (14-21 May). Just like superheroes, children's hospices are there for people when they need them most. Simon Cowell became Patron after seeing first-hand the services that children's hospices provide for children who are not expected to reach adulthood and their families.
This year you can get involved in Children's Hospice Week by taking part in Superhero Friday (20 May), a special day of hero inspired fundraising activities. Why not dress up as a superhero and make a donation to Children's Hospices UK? Get your friends, family and work colleagues involved and see who can come up with the best outfit!
Simon Cowell said: "Children's hospices are incredible places that help life-limited children, young people and their families. As Patron of Children's Hospices UK, I'm calling on you to be a hero and fundraise for Children's Hospice Week."
He continued: "Superhero Friday is a great way to support your local children's hospice and have some fun at the same time."
Visit www.childrenshospiceweek.org.uk for information on Superhero Friday and other ways you can get involved.
08/03/2011
Victoria and her Marvellous Mask
Victoria, age 12, was born with Down's Syndrome which has resulted in her having mild learning and communications difficulties. At the age of 16 months old she was also diagnosed with acute myeloid leukaemia for which she underwent successful chemotherapy. However, the chemotherapy left her with a severe heart condition which means she tires very easily and is not well enough to attend school on a regular basis.
Until recently Victoria had not actually stayed at Tŷ Hafan but she and her family have accessed some of the outreach services the children's hospice offers. Tŷ Hafan organises monthly Family Days with families like Victoria's in mind. It gives the chance for mum, Nina to meet and chat with others who are in a similar situation while Victoria is happily taking part in the various activities organised for the children.
Victoria recently had her first short stay at Tŷ Hafan while mum and dad took the opportunity to spend a couple of days away together.
Victoria made her mask with the support of one Tŷ Hafan's volunteers who offered lots of different materials to choose from. Once she had covered it with all the beautiful coloured feathers and shapes she held it up and hid behind it and chatted with people.
08/03/2011
Abbie's Marvellous Mask!
Husband and wife Lisa and Allen received the news that their eldest daughter Abbie, age five, had a life-shortening condition when she was two years old. Despite a delay in walking, Abbie was just like any two year old who could sit up by herself, eat, talk and sing. In 2008 following an MRI scan and blood tests it was confirmed that Abbie had Metacaromatic Leukodystrophy (MLD). MLD is a degenerative condition that slows down muscle tone which means that Abbie now needs to use a wheelchair. Abbie has lost the ability to talk or eat but she is still able to communicate through facial expressions and noises to let the family know if she needs something or if she is uncomfortable.
Abbie visited Robin House Children's Hospice run by Children's Hospice Association Scotland (CHAS) for a weekend break with her mum and dad, and her brother Sean, age three, and sister, Robyn, age four. Abbie's mask was designed by her siblings with help from the Robin House activities team.
Robyn and Sean were keen to experiment with all the decorations available before deciding on the final materials for their sister's mask. The siblings were very taken with the glitter glue and insisted on painting everyone's nails, except their own! There was even a tickling competition between them using coloured feathers, before they eventually used all the materials to make masks for Abbie and themselves.
Robyn likes to look after her sister and she wanted to make her mask extra special, so she chose pink star and heart shaped stickers and a pink feather. Sean was keen to include the blue feather and organised everyone by taking responsibility for the glue. Glue and glitter ended up everywhere - on hands, elbows, and the green glitter glue even made it into Sean's hair.
The siblings loved making their sister's mask for her and Abbie showed her delight with a big smile for her little brother and sister.
07/03/2011
Young people from Chestnut Tree House create some Marvellous Masks
Holly, Samuel and Arron created some Marvellous Masks for Children's Hospice Week.
Holly is 15 years old. She was diagnosed with brain tumor in 2007 which was treated with radiotherapy and chemotherapy, but late diagnosis resulted in Hypopituitarism and severe visual impairment. Holly said that her superhero was her aunty and the mask was made for her, which is why it was sparkly, because her superhero is a woman.
Samuel is eight years old and was diagnosed with Deuchenne Muscular Dystrophy in May 2008. He has been with Chestnut Tree since October 2008 and has just started to use the facilities more often, often coming with his whole family. Samuel said his superhero is Spiderman so his mask has been made in the same colours as Spiderman's outfit. "He's my hero because he's got lots of energy, he's clever and he can spin a web that traps all the baddies and keeps them away from me!
Arron is 15 years old and has been visiting Chestnut Tree House for five years. Following a hernia repair at the age of one he showed signs of meningitis and although he received treatment it led to brain damage. Arron's mask is a sensory mask. His hero is his mum. Her super powers are her kindness and the way she cares and does so much for Arron. Her favourite colours are blue and red so various items in these colours were chosen for Arron to touch. Items were only stuck to the mask if he smiled when he touched them.
03/03/2011
Marvellous Masks at Acorns Children's Hospice
Brothers 11 year old Jack and 13 year old Aaron both have the condition of Duchenne Muscular Dystrophy - a muscle weakening condition that means they both use electric powered wheelchairs.
Jack and Aaron use the services of Acorns in the Black Country and stay for short breaks together at the hospice to give their parents a break.
Mum Vicky explains: "When they stay at Acorns we have a well deserved rest. It's brilliant.
"People don't understand what it means being a carer and a parent of a life-limited child. You're exhausted all the time because of the need for constant care. We never get a proper night's sleep except when they stay at Acorns."
Both boys benefit from the therapeutic effects of the spa and do various activities when they stay at the hospice.
Jack and Aaron both made marvellous masks as part of Children's Hospice Week during a recent stay at Acorns. Jack made a Bart Simpson inspired mask and both boys created Santa Claus inspired masks complete with beards and bobble hats.
03/03/2011
Ava's Marvellous Mask!
Three year old Ava lives with her mum and dad and her big brother George, 6. Ava and her family have been visiting Little Havens Children's Hospice in Essex for short breaks since the beginning of 2010.
Ava was born six weeks premature and after 10 days in hospital was diagnosed with Hydrocephalus. The excessive fluid creates potentially harmful pressure on the tissues of the brain. It was later discovered that this was caused by an infection called Toxoplasmosis. The infection doesn't cause any harm to healthy adults but for a foetus it can have quite a devastating effect. In Ava's case it had affected every section of her brain and left her blind.
Ava's condition means amongst other complications, she is completely blind. Ava loves getting creative as she really benefits from sensory therapy such as art and messy play. Mum helped Ava decorate the mask by dipping Ava's hands into the paint and feeling the mask. Mum Liz says "She loves the feel of the paint as it's slimy and loves splashing about with the water. We sprinkled glitter on the mask after the paint had dried and Ava liked the sound and feeling of shaking the pot."
03/02/2011
Children create marvellous masks for Children's Hospice Week hero campaign
Children and young people using children's hospices are getting involved in Children's Hospice Week (14-21 May 2011) by creating marvellous masks to wear on Superhero Friday (20 May), a special day of hero inspired fundraising activities.
Children's Hospice Week is the UK's only awareness and fundraising week for children's hospice services. Just like superheroes, children's hospices are there for people when they need them most.
Care staff at children's hospices are running art sessions with life-limited children and their siblings, helping them to create superhero masks in their own unique styles. Art therapy helps children express themselves creatively, and is just one of a wide range of services offered by children's hospices to children not expected to reach adulthood and their families.
You too can get involved in Children's Hospice Week by taking part in Superhero Friday. Why not design your own superhero mask? Downloadable templates are available on www.childrenshospiceweek.org.uk. You could dress up as a superhero and make a donation to Children's Hospices UK, and get your friends, family and work colleagues involved to see who can come up with the best outfit!
***Case studies and photos of children and their masks available for features***
31/01/2011
Save the date – be a hero in Children's Hospice Week
Children's Hospice Week, the UK's only awareness and fundraising week for children's hospices, takes place 14-21 May this year. Children's hospice services up and down the country will be celebrating the week hero style.
Children's hospices are incredible places that help children who are not expected to reach adulthood and their families. Just like superheroes, children's hospices are there for people when they need them most. Children's Hospices UK is calling on you to be a hero in Children's Hospice Week and help raise funds for these vital services.
You can get involved by taking part in Superhero Friday (20 May) a special day of hero inspired fundraising activities. Why not dress up as a superhero and make a donation to Children's Hospices UK? Get your friends, family and work colleagues involved and see who can come up with the best outfit!
Visit www.childrenshospiceweek.org.uk for information on Superhero Friday and other hero inspired fundraising ideas.
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