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April 24 2014 Latest news:
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Jack Holt visits Hope House Hospice in Oswestry to see how the time and effort of staff, volunteers and fund raisers makes a huge difference to the children who stay there.
Don't fancy walking from John O'Groats to Land's End? Not keen on abseiling down a 110-foot column? Running dressed as Santa not your thing? Raising money for Hope House Children's Hospices doesn't have to be so arduous.
Take a lead from the Hope House Village Friends Committee. One of its events this summer was called Pimm's in the Garden. That's more like it.
Roly Trevor-Jones is a member of this committee and a long-time fund-raiser for Hope House. We went with Roly to the hospice in Oswestry (Hope House has a second hospice called Ty Gobaith in Conwy) to find out why she does it.
Hope House is for children facing a terminal illness who are unlikely to reach adulthood. It provides practical and emotional support for them and their families.
Oh, a bit grim then. Actually no. Hope House bears little resemblance to a hospital and its decor is more Travelodge than NHS. Laughter not sadness is the default mood. Children and their families enjoy themselves while at Hope House - it's a place of escape, of relaxation even.
Our guide was Vanessa Thomas, Fundraising Manager - more of which later. First stop was the computer room, recently re-fitted thanks to money from Lifelites, a charity for helping children's hospices originally launched by the Royal Masonic Trust for Girls and Boys in 1998.
This room is a particular favourite of teenagers - away from home they can gain a degree of independence while staying in touch with friends and family.
The Quiet Lounge is an area for both children and parents to relax, while the Play Room is just the opposite. Hope House caters for an age range of babies from around six months to 18-year olds and the toys and play equipment reflect this. Often, children who are reticent in formal counselling sessions - an important service offered at Hope House - will be more communicative while playing.
A track suitable for wheelchairs leads to the outdoor garden area - with its garden, pond and impressively large fish. Here as elsewhere at Hope House, the children are always accompanied by one of the staff or a family member. We found Ben (aged 15) here with his little sister, Ffion, and their grandmother and they went on to demonstrate some of the equipment in the new outdoor play area. There are all sorts of interesting, brightly coloured things including a climbing frame and swings, both suitable for wheelchair users.
Back inside, the Sensory Room had us fascinated. Designed to stimulate all five senses, it has unusual lighting effects, music, moving images, mirrors, a waterbed and cushions plus scents. We couldn't, however, work out how taste came into it. Vanessa pointed out that 13,000 was needed to upgrade this room and this brought up the subject of financing.
Vanessa said: "We need to raise 4 million a year just to cover the running costs of both hospices. Only one twelfth of our income comes from the Government, whereas adult hospices get one third of their costs."
Hence the importance of fund-raisers such as Roly. But how did she first get involved?
"When my son was born," she says, "he was very ill and spent a long time in hospital. It was a difficult time for my husband and me. Thankfully Edward recovered, but it made me realise that there were many families who would not be so lucky.
"Later, a friend told me about Hope House and I eventually plucked up the courage to come here. I was so impressed and just wanted to help.
"The Hope House Village Friends Committee is simply a group of eight friends. We try to hold about two events a year, nothing too complicated, and just something we hope everyone will enjoy.
"Usually one person comes up with an idea and the rest of us support in anyway we can - apart from parachute jumps and sponsored runs - but that way no one person ends up doing all the work. Vanessa is very helpful too."
Vanessa comes in at this point: "Our Fundraising Office supports our volunteer fund raisers throughout the county however we can. We can supply banners and balloons etc. and make and print tickets and sponsorship forms. We also help with publicity through the local media, our newsletters and our fundraising events diary on our website which is also good place to look for ideas of the sort of things to do."
Adds Roly: "Our fund raising event this summer was called 'Pimm's at Preen'. Ann Trevor-Jones invited us to Preen Manor to see her gardens and we served Pimm's and strawberries.
"In the autumn, we've decided to have another film show. This was very popular last year when we had the opening night of the James Bond film Quantum of Solace. This time it will probably be a truly classic film, but I can't tell you which one yet."
While talking, we've seen the bedrooms - for the children, and also for families or for parents or carers who sometimes choose to stay too. Children stay at Hope House overnight or for a number of days. As one parent commented: "It was just so nice not to have to get breakfast in the morning."
The parents stay in separate rooms not far away. This may give them more of a break but they can still look in on their child during the night - even though Hope House has carers on duty all night.
Some parents will take a holiday while their child is staying at Hope House - keeping in touch by telephone and email. Hope House does not neglect the requirements of siblings and has a special club called Building Bridges for brothers and sisters. They get help and support and go on trips to places such as Alton Towers.
Essentially, Hope House provides whatever care and support each child and his or her family require. Following the initial referral, which may be by a doctor, by social services or the parents themselves, the Head of Care meets the child and parents and assesses their requirements. There's no charge for any of the services and certainly no means testing - all children and parents are welcome.
Still touring, we've taken in the hydrotherapy pool (warmer than a public swimming pool and with wheelchair access), the music room (with music therapist, Alison Acton and budding piano player, Max) and the authentically untidy teenage room (where children can watch DVDs, play computer games and lounge around on bean bags).
Although the majority of the hospice's work is respite care for the children, sometimes for many years, death and bereavement is a fact of life. For this reason, Hope House has a team of highly-skilled Social Workers who are acknowledged experts in bereavement counselling, particularly bereavement affecting or involving children. They are also called upon to work in the community - following the death of a child in a car accident, for example.
Each year, Hope House organises Snowflake Day - for the relatives and friends of the 160 children from the hospice who have died since it opened in 1995. Vanessa says: "Snowflake Day is a mixture of a happiness and sadness for the families, remembering the much-loved children they have lost but also remembering happy times together and meeting old friends again. Some families find this really helpful whereas others may prefer to remember in private. Every family is different and we respect that fully."
Hope House also sets aside a day - Community Bereavement Day - to support parents not connected with the hospice but who have lost a child.
We met a group of staff taking their tea break, which prompted questions about what it takes to work at Hope House. Typically, we were told, "It's more of a vocation than a job," and "You've got to want to do it." Again, the prevailing mood was happiness and Vanessa advised: "Hope House isn't a sad place because staff try to deal with life in a positive and light-hearted way and, of course, children are naturally full of fun and here to play not be sad."
Hope House employs around 25 nurses and 25 carers at Oswestry who have come from all walks of life. Most of the staff are women, with just four men in the care team. Because of a national shortage of children's trained nurses, there are often vacancies at Hope House for them.
We're back at the front door and an immensely interesting visit is over. Roly is even more energised to raise money for Hope House (although not to the extent of considering a 100-foot abseil) and I have one final question for Vanessa - how does anybody who reads the article and is motivated to raise money proceed?
She says: "They should contact me or the rest of our Fundraising Team on the special fund-raising number which is 01691 671671 or send me an email at email@example.com. We'll be very happy to hear from them."