Abandoned by the system – parents plead for more support

Local comedian Conor Keys is no stranger to opening up in public; but, until recently, he has always been reluctant to speak out about the challenges of caring for his 13-year-old daughter, Ruby.

“My wife and I have never really wanted to let the world see into our home, but things have gotten so desperate recently that it seems like the right – and maybe only – thing to do,” he said. Ruby has complex needs, and exhibits extremely challenging behaviour.

In Conor’s words, “She can turn a hug into a hit very quickly. She’ll lift something and throw it at you as hard as she can. She’ll hurt a child without meaning to. She’ll run out in front of cars. She’ll destroy property; we’ve lost five TVs in just a few years. My wife Eimear has lost countless clumps of hair. Both of us – and my other daughter too – have all ended up in the emergency department numerous times with injuries caused by Ruby.

“At the same time, she is wile craic, full of love and life.”

Up until 2019, five times per year, Ruby would be cared for in Avalon House, Omagh, a facility managed by the Western Trust.

However, this is no longer the case.

“Avalon was a lifeline for us. Every quarter we could plan a 48 hours break. Once a year, they would look after Ruby for a full week.

“Sometimes we could plan to go to a family function, like a wedding or birthday – which are things that don’t happen for us anymore.

“Most of the time, though, it just gave us time to recharge and relax. Basically, we could sit and have a cup of tea without the risk of it being slapped out of our hands or thrown over the top of us. And that isn’t an exaggeration.”

The event that led to the removal of Avalon House’s short-term break provision was the introduction of a long-term resident to the facility.

Since moving in almost five years ago, this person has been cared for on a full-time, permanent basis.

Conor said that, if there were proper long-term provisions in place, this would never have had to happen.

“The North suffers from a chronic lack of long-term care facilities. Because of that, the Trust are having to use accommodation originally intended for short-term respite stays. Neglect in one area has a knock-on effect for another.”

Conor said that he knows parents from Omagh who have had to surrender to their children being sent to England because there is no long-term care accommodation anywhere closer.

“These are not people who have stopped loving their children; they just are no longer able to look after them. That is a hard enough position to be in no matter what. Never mind if your son or daughter are then going to be sent out of the country. It is absolutely heartbreaking.”

‘Can’t be done’

When Avalon House closed, Conor and other local families began periodically meeting with representatives from the Western Trust.

“Along with other local carers, we have tried hard to get short-term respite services reinstated in Avalon House. However, we are always told that it can’t be done because of rules written and upheld by some bogeymen called the RQIA (Regulation and Quality Improvement Authority), who have decreed that long-term and short-term residents cannot share a facility.”

In recognition of how difficult it is to care for Ruby, Conor and Eimear were offered the chance to avail of short-term break services in Rosebud Cottage, Derry – a facility which traditionally provided short-term respite for people in the northern sector of the Trust.

“There wasn’t the same ability to book in advance as there had been in Avalon. You would get a call saying there was a slot available and you had to make a choice fast. In saying that, it was much better than nothing.”

But then a situation symmetrical to the one which ended short-term overnight stays in Omagh occurred in Derry.

“A long-term resident moved in there, too, and that put an end to overnight respite within the Western Trust area,” they stated.

Conor and carers in a similar position now have to secure short-term respite arrangement themselves, through something called ‘self directed support’.

“We have to find a private carer who is willing to look after Ruby, then the trust will reimburse us for the cost.”

However, finding somebody is hard. “When you’re asking somebody to deal with Ruby on their own, not many are up for it, and I don’t blame them.

“Thankfully, we have a wee girl at the minute who takes her out a few times a week, which we value. But there is no prospect of getting the kind of overnight support that we used to get from Avalon and Rosebud.”

Eimear had to retire from hairdressing a number of years ago to look after Ruby. Conor said that sometimes he will ‘break down’ because of the stress they are under.

“I’ll be going about my day and then all of a sudden I’ll just burst into tears, then I’ll have to hide so Ruby can’t see me,” admitted Conor.

He continued, “Times I used to love, I now dread, especially when the school (Arvalee) is closed. Everything has been flipped. Instead of being excited for summer, St Patrick’s Day and Christmas, we now can’t wait for them to be over.

“At Christmas, there is no music, no lights, no wrapped presents. We can’t get excited because it will upset Ruby. Our routine has to remain as consistent as possible. We live beside my parents, so on Christmas Day we can look across the road and see everyone partying and having fun. We just have to sit in the house and wait for the dinner to handed into us through the door. Stuff like that is hard, but we’re sort of used to it now.”

‘Coming apart’

In a final, frank plea for help, Conor said, “There is so much to this situation and I could go on all day, but the bottom line is that local carers, the Western Trust and the Department of Health need to work together to reinstate short-term care provisions in Avalon House and Rosebud Cottage, fast. My family is coping okay, but there are many worse off than us. Families are coming apart. Single mothers are being asked to a job that at some point becomes undoable.

“That’s the reality. Something has to change.”