Young adults with life-limiting conditions across Northern Ireland are being failed by Stormont, it has been claimed.
There is currently no facility in Northern Ireland where young people with complex medical conditions can go for respite.
The Northern Ireland Children’s Hospice offers planned short breaks and end-of-life care for babies, children and young people from birth to the age of 19.
Medical advancements mean more children with life-limiting conditions are surviving into adulthood, but services have not been developed to support them once they are no longer eligible to access the hospice.
Tina McCrossan, director of children’s services at the hospice, said: “I think society and our politicians need to decide whether this is good enough for our young people.
“The only place these young people can go for a break is to a nursing home, but a lot of them have very complex medical requirements that a nursing home may not be able to cater for. This means they have nowhere to go. On occasions where they can go to a nursing home, it is likely the youngest other person there will be in their 60s.
“The nursing home may be able to meet their medical needs but they will not be able to meet their other needs, such as social interaction. This is a matter of basic human rights.”
Ms McCrossan said it is time for Stormont to act to address the growing issue.
“This is not going to go away,” she said. “This is an issue that needs to be addressed. These people are surviving longer and there are more young people with life-limiting conditions living into adulthood, but this hasn’t been planned for.
“We would like to see Stormont put some plans in place so these people can access the services they need and deserve.”
She continued: “We have done research with these young people and they were very clear that by giving them a break, their families were also getting a break.
“Supporting these young people also supports their parents, who have been carers for 20 years.
“They have been fighting for everything for their child for 20 years.
“They are getting older, lifting and caring for their child for 20 years.
“That all takes a toll physically and then they are worrying about the future.
“Who is going to look after their child when they’re gone?
“There is also a real feeling of guilt among the young people who feel a burden on their parents. This is only made worse if there is nowhere for them to get a break.”
Realising the challenges facing young people approaching adulthood who rely on the hospice, they created a post for a nurse dedicated to helping these families.
Anne O’Reilly supports families as they move through the difficult transition period from child to adult services.
“We work with the young people and their families to identify what their needs are and we then work with them to try and make sure that their needs are met by the hospice,” she explained.
“It can be a very daunting time because that person has been under the care of a particular paediatrician and, depending on their condition, may then be treated by a number of different doctors and different clinics.”
Visit www.ni.hospice.org to make a donation or text Give£5 to 70444 to make an immediate £5 donation to the hospice.
‘Richard loves the social interaction’
By Lisa Smyth
Sharon Douglas was concerned about the development of her son in the first few years of his life, but was reassured by health professionals that everything was fine.
Despite this Sharon (44), from Donaghadee, was so concerned that when he started at a playgroup she asked the teacher there to keep a close eye on him.
“He was three-and-a-half and he just seemed more awkward and fell over more often than other children his age,” she explained.
“I asked the teacher at his new playgroup to observe him and I assumed she would watch him for the first term, but she spoke to me at the end of the first day and said she was also concerned.”
Richard, now 19, was subsequently diagnosed with Duchenne muscular dystrophy — an incurable condition that causes progressive muscle weakness.
While there is no cure for the disease, Richard underwent spinal surgery three years ago, which Sharon said has improved life for her son.
“Before the surgery he was in a lot of pain,” she said.
“We were told if he didn’t have the surgery he would need palliative care.
“His heart was borderline for undertaking such major surgery but we made the decision to go ahead.
“The surgery itself went well but afterwards he developed a major life-threatening complication and we thought we were going to lose him.
“The support we received from the hospice was amazing.
“At one point we thought Richard was going to get home in time for Christmas but he would need specialist care, and the hospice offered to open up over Christmas.
“As it turned out he was too ill, but to know we had that love, care and support was amazing.”
When he was finally discharged from hospital, Richard was taken to the hospice to continue his recovery.
“We arrived to a lovely homely environment and they did everything they possibly could to support us,” explained Sharon.
The hospice continues to offer support to the family.
“Richard is ventilated at night and requires a lot of attention through the night,” continued Sharon. “I have great family support but the hospice is also brilliant. It is such a wonderful place.
“As he has got older he has become more isolated and he loves the social interaction at the hospice.
“There is nowhere else offering the same level of support.”