Mum 'begging' for respite care for disabled sons since start of pandemic

Tracey Gilliland and her husband care for their two severely disabled sons

A mum with two severely disabled sons says she has had to beg for a break since the start of the Covid pandemic.

Tracey Gilliland, from Portadown said she was "beyond on her knees" after services were cut.

The Southern Health Trust said its respite service was now "operating at normal levels", but day care still had reduced capacity.

Ms Gilliland and her husband used to have respite dates six months in advance.

Both her sons are in their 20s and need round-the-clock care, but she said this had become "sporadic" after a long stretch with none at all.

She said for the past 30 years, respite has been the only time she gets a full night's sleep.

'Fighting all our lives'

Speaking to BBC News NI's Talkback programme, she said: "I have been a carer for almost 30 years. My husband and I have two boys who are severely disabled and need clothed, washed and fed day and night.

"We've been basically fighting all of our lives for care."

"I am now beyond on my knees trying to cope and care for our two sons, holding down my employment, my husband trying to hold down his employment."

• The pain of Covid's impact on respite care

She said her calls to the Southern Health Trust often went unanswered and she felt alone trying to get back the services her family had relied on pre-pandemic.

"It just means so much, means you can put your feet up - it's our time to be together, and to get that taken away from us has been such a stress, you just don't know when you're going to get that next break," she said.

"I am just constantly exhausted."

'People let down'

Alliance Party assembly member Kellie Armstrong was a carer for her brother and is a member of the all-party group on carers.

"Sadly Tracey is a typical example of how people have been let down. Carers and the people they care for were the first people to have services removed at start of the Covid pandemic and sadly they are the last to have them reinstated," she said.

"Imagine if you were in work 24 hours a day, seven days a week, always on call and never being able to take a break. Carers do this."

Alliance assembly member Kellie Armstrong says carers have been the last to get pre-pandemic services back

In a statement, a Southern Trust spokesperson said: "We fully recognise the impact the pandemic has had on our service users and carers.

"The past few years have been hugely challenging for our staff and services as we have managed the pandemic and we know particularly stressful and frustrating for carers with the reduction of some services.

"In terms of respite, trust services are now back operating at normal levels and we are continue to work with community providers to increase overall capacity.

"We continue to work with community providers to increase overall capacity."

'Urgent review'

The Department of Health said it had sought an "urgent review" of barriers to respite services.

"Trusts have continued to deliver day care and respite services at a reduced level, subject to health protection guidance.

"To date, significant efforts have been made by trusts to implement the Public Health Agency Pathway to manage Covid-19 risk, while increasing service provision on a phased basis.

"Trusts have indicated that the pathway has allowed for an increase in service provision, however they have yet to reach pre-pandemic capacity and there remain further adjustments to public health guidance before services can be fully restored."