The hospice offering crucial care in time of need
Children’s hospices offer a vital lifeline to youngsters and their families in their time of need.
But once a child turns 18 they face being cut off from the care and support they’ve come to rely on.
Now The Donna Louise in Staffordshire has taken the step of opening a specialist centre for young adults.
Nationally, children are treated as adults regarding their care needs when they reach the age of 18.
Many children’s hospices, like The Donna Louise, continue to look after them until their 19th birthday, offering them an additional year of support before they are discharged.
But staff realised that uncertainty over what would happen next was causing a great amount of anguish and distress for families with many fearing the moment their child reached adulthood.
There were also concerns that overstretched NHS budgets could lead to teenagers facing a long wait for the support they required or that there would be no appropriate care services available to them.
“Some of our families have been coming to the hospice since it opened in 2003,” says relationship manager Chris Belyavin.
“We have been supporting them all that time and building up relationships and trust.
“Nationally a children’s hospice would discharge a patient when they get to 19 and they go into what’s called transition which is the move from children’s to adult services.
“We realised we were tipping our young people over a cliff edge and into a black hole.
“We’ve got a lot of young people in their late teens so in 2016 we made the decision that we were no longer going to put them into transition.”
“Now we can say to families ‘we will be there for as long as you need us’ and that is a massive relief for our families.
“It’s a big change from our point of view and it will be a learning curve for us because we don’t know exactly what it will entail but we feel it is the right thing to do for our families,” he adds.
The new multi-million pound young adult centre, which opened in May and will be fully operational early next year, provides facilities for day care and overnight respite.
Funded by The Denise Coates Foundation, the centre also has plenty of space to offer a wide range of physical and emotional therapies.
Teenagers were involved in the planning stage and given an input in the design of the centre and the facilities.
On the ground floor there are large, open plan communal and entertainment areas, group and physiotherapy rooms as well as a garden.
There is also a kitchen where young adults will be able to practise their cooking skills along with a laundry room.
On the first floor there are four standard bedrooms and a larger “sleepover” room.
“One of the requests from our young people was that the bedrooms were located upstairs. In our children’s hospice they are on the ground floor but they told us ‘we’re adults, we want to go upstairs to bed’.
“Everything has been designed to empower and enable young people to be as independent as they want to be so they can look after themselves in a supported way,”says Mr Belyavin.
As long as needed
The centre has been designed to cater for young adults from the age of 19 for however long they want to continue using the facilities.
“We decided we didn’t want to set an upper age limit because we didn’t want to be moving the problem five or six years down the line.
“At the moment, we are saying we are here as long as you need or want us,” says Mr Belyavin.
The hospice, based in Trentham, supports more than 260 children and young adults with life limiting or life-threatening conditions and associated complex needs, from across Staffordshire and Cheshire, including many in Stafford, Cannock and Burntwood.
As a charity, it relies almost entirely on donations and fundraising to run its services, which following the expansion of its services has risen to £4.5 million a year.
It offers a range of support including respite breaks, physiotherapy, art and music therapy, play activities and counselling for the whole family as well as end of life care and bereavement services.
Facilities include a music room, library, teenage lounge, computer room, lounge, areas for soft play and arts and crafts and a sensory room.
There is also family accommodation and a large outdoor area which enables disabled and able-bodied children to play together.
The hospice, which has around 110 staff, has been designed to be an extension of the family home.
“Anybody can referred to The Donna Louise, there is no waiting list. When a family is first told that they could benefit from what a hospice can offer them and they come for that first visit, it can be quite daunting.
“We want them to feel relaxed when they come here and feel welcome. The staff don’t wear uniforms because we want to take an informal approach.
“When families are staying with us for a short break, we want them to use us like a hotel. All of their meals are provided if they want them.
“We want families to know we are there for them every step of the way,” says Mr Belyavin.