Director of Care Dot Gillespie talks to The Sentinel’s John Woodhouse about the hospice taking exciting steps forward in helping young adults with life-limiting illnesses
As the Director of Care Services here at the Donna Louise Children's Hospice, Dot Gillespie is used to challenges. With the hospice taking a major step forward in helping life-limited young adults, Dot has shared the plans with John Woodhouse, "If you can't do it through Plan A, you do it through Plan B or C."
"The saddest thing I heard," reveals Dot Gillespie, "was a mum who said 'I actually lie awake at night hoping my daughter dies before she's 18 because the thought of transition is so scary. How can it be that a parent should lie awake actually willing their daughter to pass away because the thought of what's coming next is so frightening, because It's so traumatic to think about what could happen and how different it's going to be? That tells you volumes."
Dot is talking about the next big challenge in the charity sector she occupies. As Director of Care at The Donna Louise, she has witnessed a change in the needs of many who access its hugely valued services. This is no longer just about children. Advances in medical care mean it is increasingly about young adults – young adults who are all too often at the sharp end of healthcare cutbacks which leave them, and their families, floundering. After all, the clicking round of a date on a calendar means nothing. It dismisses not the need for respite care for either the young person or those close to them. In fact, if anything, those needs are increased.
"Some of the more specialist support gets dropped," explains Dot, "and then parents, who are themselves getting older, can struggle with caring for a young adult who is physically getting bigger.
These are parents whose own support mechanisms are dropping off. Grandparents might no longer be around. The patient's care needs are going up and the parents' are as well. It's a big challenge for families. We have heard people say some very moving things."
The Donna Louise currently offers a palliative care service to youngsters and their families until the age of 19. It's a highly regarded and widely respected service, but the cut-off means young adults with serious illnesses are often left with nowhere suitable to go for help. Parents and carers, meanwhile, are denied the opportunity for respite that a hospice can provide.
For the past year, The Donna Louise has been running a 12-month experiment where it has stopped discharging young people at 19. The idea was to investigate both the feasibility and practicality of offering the service full-time. It reached the conclusion that such a policy was possible, and by the end of 2018 the first of many young adults with life-limiting conditions will be receiving help at a new purpose-built unit on the site. By 2020, it will be able to help 45 young adults. "We'll be there for as long as they need us," says Dot.
While a benefactor will build the unit, the running costs will be significant, amounting to £1m a year on top of the present £3m which the charity must find. It can't have been an easy decision to make. "It was easy-ish," counters Dot. "We knew the demand was there. But it is a huge undertaking. We're a small charity and we get massive support, for which we're so grateful, but it's a lot of extra revenue to bring in. It's going to need staff, equipment and kit. We had to be really confident we could do it before we made the decision, but there was an absolute determination to make it happen. We had to be realistic, though. There's no point setting ourselves up to fail, and once you're committed to something like this you can't then let families down. It's a big challenge to bring that revenue in year on year."
But in the world of respite care, where life is limited, there is, quite literally, no time to lose. Needs are expanding as public sector healthcare shrinks. "Social care picks some elements up," says Dot, "and health care too, but the more specialist and refined support had got dropped. The problem isn't new, but it's become much more apparent as more young people survive longer with much more complex care needs - medication, respiratory support, all sorts of things.
What's out there can be quite limited. There's a gap in the skills and knowledge of the workforce who are needed for a lot of these people to survive. We are talking about children's conditions in adults, and not many people have cared for a 21-year-old in that situation. There are some services, but we know what's happening with cuts left, right and centre. 'We can't do this, you can't have that' will be a constant in families lives."
The Donna Louise is constantly bedevilled by misconceptions, the main one being that it is a sad place when in fact it is one of the most positive and upbeat environments one ever could enter. Another is what happens to youngsters when they leave.
"There's a misconception that they go from one hospice to another," explains Dot, "that when they leave us they got to the Dougy Mac or Katherine House, but those are very different care models. We support families and help them live with their conditions. We do end of life care, but that's only a small part of what we do. Someone might be discharged at 19 and not need end of life care until they're 24 or 25, so who cares for them in between? That's the gap we're trying to meet."
For any parent or young person, the thought of losing the support of such a revered institution as the Donna Louise must be little short of petrifying – a situation the charity has long been aware of.
"We've always tried very hard to make it not feel like a cut-off," says Dot. "We work very hard with the families to prepare them for the change that is to come and the handover in care to adult services, where they exist. We're still doing that, because even though they'll be staying with us post-19, they'll still need to be dealing with adult care services. There's a lot of transition. There'll be district nurses instead of children's community nurses, an adult social worker as compared to a children's social worker. That's very different. It's a huge transition to go through."
At the same time, as young adults, horizons are expanding, albeit seen through a different prism. "For most of us at 18, 19, 20," explains Dot, "we are thinking 'the beginning of our lives - here we go', all that normal stuff about looking forward to things in the future. For them, the future looks very different. They still have a future but it's different.
"A lot of the young people we meet are really positive about their future. It's about living for every day. They have aspirations the same as any other young person, like going to university. We have one young woman who's got a place at a university in America. She's hugely aspirational, but equally she knows that at any moment she could get a really bad chest infection and that could change what happens. The attitude is 'I might not have a long life to live but I'll get as much as I can into the time I've got'. Every minute means something."
The challenge for the Donna Louise is ever-changing, but it is one the charity is determined to meet. "There's a need to be met," declares Dot. "If you can't do it through Plan A, you do it through Plan B or C. We won't be put off at the first hurdle. The challenge is that people need a quality service.
"There's a general lack of awareness of young people with these conditions and what it actually means. We might see a young person going through Hanley in a wheelchair and think no more of it. Why would we? But for some young people that is their reality and we need to think about the help they have. At The Donna Louise, that is something we're doing all the time."