Glittering Hospice Ball supports those in need
PIONEERING APPROACH AS AS CENTRE PLANS MOVE TO NEW BELLAHOUSTON SITE
SUPPORTERS of the work of The Prince and Princess of Wales Hospice have raised money through a glittering-charity ball.
Television presenter Sarah Heaney took part in the charity’s Hospice Annual Ball at the Cameron House Hotel on the banks of Loch Lomond.
The new hospice is set to be built in Glasgow’s Bellahouston Park as part of the Brick by Brick Appeal.
A remaining £1.3million is still to be raised to reach the £21 million total.
Speaking at the event, Sarah Heaney said: “I’m a great believer in kindness and paying forward and the foundations of that are in The Prince & Princess of Wales Hospice’s Brick by Brick Appeal.
“Building a new hospice is a fantastic way to offer care to the people who need it in our community now and for years to come.
“Together, tonight, we’re going to raise the roof on the new hospice.”
The ball has been running for 17 years and raises money to help provide free palliative care to more than 1200 patients and families every year.
Rhona Baillie, chief executive of The Prince & Princess of Wales Hospice, said: “We have had a wonderful night and can’t thank our loyal supporters enough for all their help over the years.”
“Thanks to their generosity we can continue to provide crucial services to those who are living with a life-limiting illness, in a place of their choice.
“That is why such ongoing support is vital as we look to the future and extend our care to many more patients and families who need our help every day.”
MORE children with life-threatening illnesses are surviving into adulthood – which means the way they are cared for has to change.
A Glasgow hospice is leading the way as it prepares to support 16 to 21-year-olds for the very first time.
In a groundbreaking partnership, The Prince and Princess of Wales Hospice has been working with Children’s Hospice Association Scotland to make sure staff and patients are ready for the move.
Right at the heart of the project, however, are young adults who already know what it means to live with conditions like cancer, Duchenne muscular dystrophy and fatal genetic disorders.
Jane Miller, clinical nurse specialist at the PPWH, explains: “We don’t know what young people want from our service – so we need to ask them.
“It’s only by involving them and getting their views on everything from the way we communicate with them to the building itself, that we can make sure we are meeting their needs.”
Paul McGinley, who was diagnosed with Duchenne muscular dystrophy when he was eight years old, is one of the first patients to make the transition from CHAS to the PPWH before the latter moves to its new, purposebuilt home in Bellahouston Park.
“The hospice is helping me and taking on board my opinions, which should help other younger patients in the future,” he says.
The 37-year-old from Muirend was diagnosed when he was at primary school. “I kept falling over – at first my teachers thought I was being lazy but they didn’t know what was wrong, it’s a rare condition,” he explains.
“It’s a weakness in the muscles which affects around one in 3500 people. I was still walking until I was 18, and often other people are in a wheelchair by the age of 10.”
Paul, who lives at home with his parents Gerry and Giorgie, smiles: “So I’ve managed to keep going. I’m not doing too badly, I try to keep my independence as much as I can.”
He adds: “A lot of people think the hospice is only for old people so it’s good I can help develop the services for younger people. I want to help people understand it can help young people too.”
For Jane Miller and her team, the move to Bellahouston Park will make a huge difference to the kind of support they can offer young people.
“Carlton Place was never designed with young people in mind,” explains Jane.
“Caring for young adults needs a very different approach. With our existing patients, there is a very clear line on what support is required .
“With young adults, it’s an entirely new area – their expectations are different. For them, it’s a very scary time too – in many cases, these young adults have outlived their life expectancies and they are now entering territory that has not been researched. It simply hasn’t happened before.”
As part of the transition work, Liz Smith, the hospice’s practice development facilitator, worked in partnership with Jayne Grant, clinical nurse manager for clinical effectiveness at CHAS. Together they ran workshops for clinical staff preparing to spend several days a week at the children’s hospices Rachel House and Robin House, allow them to spend time with young adults and their families and share in their care experience alongside CHAS staff.
It’s a pioneering approach, as Jane Miller explains.
“We don’t believe this has been done on this scale in Scotland before,” she says.
“By running these workshops and placements, staff get the chance to learn firsthand and increase their knowledge and confidence in the care of young adults and their families.”
Consulting young adults has been a key part of the process, as Jane explains.
“We have run focus groups, in which the young patients and their parents get a chance to chat to staff members; we have carried out walk-rounds of the building to make sure it really is fit for purpose for what young people want,” she says. “It is a challenge, of
course, but moving to the new building is an exciting time for everyone. It will allow us to do so much more, not just for young adults, but for all our patients.”
Leona Davidson was 10 when she was diagnosed with the rare pantothenate kinase-associated neurodegeneration. One of only two people in the country who suffer from this fatal genetic disorder, she is now 27 and also moving from CHAS to the PPWH.
By using a wheelchair and communicating through a computerised speech board, Leona leads a busy life, as her mum Angela explains.
“Leona doesn’t let this get in the way of her life,” she smiles. “She’s out and about with friends all the time, she has her own car and her own care staff.”
Angela, who works closely with Fiona Wyle, the PPWH’s senior nurse for strategy implementation, admits the support of the hospice, as her daughter gets older, will be fantastic.
“Everything Fiona has said would happen, has happened, the hospice hasn’t let us down,” she says. “The most important thing is she able to meet the needs Leona has for her end of life plan.”
Angela adds: “I’m a lone parent, I have a full-time job, I have a son at home and have Leona’s needs to oversee. It does get tiring.
She smiles: “We have a strong mother-daughter relationship and are very close. In a strange way, her illness has made that relationship all the more special.”
Hospice Care Week, celebrating all those involved in hospice care, runs until October 15.