'We have become the forgotten group in society': Cork carer slams lack of respite care 

A CORK woman has voiced frustration at a three-year wait to access respite services for her brother, who requires 24-hour care amid mounting health issues.

Marion O’Sullivan has not seen her son, who lives in Germany, for two years as a result of lockdown and caring for her younger sibling, Stephen.

The former city councillor said that, despite numerous attempts, she has been unable to receive a date for some much-needed respite care. Ms O’Sullivan added that she had no idea when a visit to her son might be possible, even after travel restrictions are lifted.

Massive funding shortfall

Cope Foundation chief executive Sean Abbott, where Stephen normally attends for respite, previously revealed how a funding shortfall of €34m was preventing the organisation from meeting the growing demand for its services.

Ms O’Sullivan stressed that she does not blame Cope for the shortfall or for her situation, saying she believes that the HSE and Government need to be held accountable.

Speaking about caring for her brother, who has a severe intellectual disability and additional health issues, she said: “I put down a very hard winter and haven’t seen my son in Germany for two years. It was very depressing as Stephen really deteriorated during the lockdown.

“He gets so confused ... and needs 24-hour care.”

The Knocknaheeny woman admitted that lockdown took an emotional toll on them both.

“I found the dark nights very lonely,” she said. “It was very hard going.

“Stephen was going to bed at 8pm every night because he was so down. The whole situation is very frustrating.”

Ms O’Sullivan, who has been caring for her brother for 14 years, said that people in her situation were becoming increasingly isolated.

“My brother used to take him on a Saturday for me, but he died, so I don’t have that support anymore,” she said.

“There is a huge degree of uncertainty now. People like me are isolated in our own homes. I can’t take Stephen out with me because he has a tendency to become disorientated and fall a lot.

“Before lockdown, he fell down the escalator after coming with me to the shopping centre. Luckily, he wasn’t hurt, but the danger is always there. His sight is going, so it’s been very tough.”

She highlighted how many others in Ireland face similarly difficult circumstances.

“There are many people like me out there. We have become the forgotten group in society. I hear people complaining that the pubs haven’t reopened so they can’t go out for a drink, but this has been my life since I began caring for my brother.”

She said the Government and HSE need to be held accountable for the lack of respite care in Ireland.

“I don’t put this down to Cope,” she said. “I put it down to the HSE.

“It’s very lonely. I often wonder what I’d do if anything happened to my son and I had to travel abroad.

“The Government is refusing to do their duty by their citizens. As of today, I still don’t know when I will be able to get respite.”

Mr Abbott said Cope is doing everything it can to resume short breaks for children and adults.

“The short breaks service is very important to people we support,” he said.

“We have highlighted in our service review the need to develop more short breaks services for children and for adults.

“We are pleased that last year the HSE supported further development of our home-share service, but we know there are many more families in need.

“We are committed to working with any individual on advocating for the supports they need.”

HSE Statement 

Cork Kerry Community Healthcare, which comes under the umbrella of the HSE, also responded with a statement.

“We cannot discuss someone’s circumstances as these are private and confidential,” a spokesperson said. “However, we would like to say that Cork Kerry Community Healthcare absolutely recognises the value and importance of respite care.

“We are aware of Stephen’s case, and we are working with his family and the respite service provider. We will do everything possible to resolve the issues in relation to Stephen accessing respite.

“In any case, including Stephen’s, where residential respite is not immediately available, we work with families to increase the support available to them in other ways, for example home support hours.

“We sincerely regret the impact on any person with a disability and their family in any delay in accessing respite.”

• For information on how to donate to the Cope Foundation click here.