Disabled boy's family say they struggle to get proper care
- Published
The father of a 17-year-old boy badly injured in a crash has spoken of the struggle his family faces to get a sufficient care package.
Cian Milligan suffered life-changing injuries in a collision between a car and a bus near Clough in County Down.
He requires almost constant care, but after having daily and overnight carers initially, his father said there were some days the family had no-one.
The Department of Health acknowledged difficulties with care provision.
It said as of January 2023, 2,780 people were waiting for a domiciliary-care package.
A further 1,752 people were waiting for a partial element of their assessed domiciliary-care package.
The crash that changed Cian's life happened in October 2020 when he was travelling to school in Downpatrick.
He spent a long period in hospital but after being discharged last year, he and his family lived in a rented property while his Castlewellan home was renovated to cope with his needs.
This saw the installation of a new bathroom, hoists, a physio table and wider doors and passageways to allow easier wheelchair access in the family home.
For this to happen, Cian's family had to engage in a major fundraising drive, with Cian finally able to move home at Christmas.
"It's great to have Cian home," said his father, Damian.
"It's the smiles on his face. The familiarity with the people he sees every day and not just being in a hospital ward.
"Bottom line, if that hadn't taken place he'd still be in hospital or some form of care facility - because the rental accommodation wouldn't have been available forever."
But getting Cian home was only part of the battle.
He, like many others in his position, requires almost round-the-clock care.
"We started with a care package that looked after Cian from 8am to 9pm and then overnight care but now there are days that we are on our own," Damian said.
"There are a lot of families in our position so I speak out for all of these families when I say - it isn't good enough. We can't take any more of the pressure that we face when we are looking after our own family and basically they deserve better.
"We were told from day one that we would have to fight for everything for Cian. We would have to watch and make sure that Cian was getting the care he needed.
"At that time I took it on board but I didn't really understand it.
"This was told to us by countless families who were in the same position as us - either from the birth of their child or in an accident like Cian's. It has astounded us."
In a statement, the Department of Health said a November 2021 funding package of £23m aimed to reduce pressures.
It said this initially increased the number of care hours delivered by the independent sector by approximately 8% but "care hours delivered have unfortunately seen a decline over the winter period".
The statement added: "Challenges still remain within the sector, both in retaining and recruiting staff, as well as in delivering care packages, with demand outstripping available supply.
'He will keep on fighting'
"While the overall demand for care packages continues to increase, the department is confident that the funding provided to date has assisted in stabilising the sector, and has supported the capacity of providers to deliver care packages, particularly against a backdrop of extreme system pressures and a competitive wider recruitment market."
Damian said there had been major improvements in his son since he moved home.
"He's trying lots of things with his hand, his right hand in particular," Damian said.
"To move stuff and touch stuff and to hit things and there is a lot of effort there. We know Cian understands everything.
"And he is trying very hard to do things. But physically he's not capable of doing some things yet, but everyday there is something different.
"It provokes a lot of emotion as well because of where Cian has come from initially to where he is now.
"We know that he will keep on fighting."
In a statement, the South Eastern Health and Social Care Trust said a growing number of young people were being assessed as having a disability, who would require assistance throughout their lives.
It said it was experiencing challenges "in accessing timely care packages to support many families," and that staff vacancies among allied health professions - occupational and speech and language therapists, for example - and social services "have also resulted in families and children having to wait for access to important services".
"The trust is currently working with the Department of Health to compile a new Regional Children's Disability framework to help those families in need," it added.
"The aim is to improve early help for families, increase the provision of short breaks, expand residential placements for children who are unable to remain at home and to improve opportunities moving into adulthood."
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- Published19 May 2022