"We survive on three hours sleep a night" - Sheffield family with disabled children speak of the toll cuts to respite care are taking

Jayne Mcmillan, aged 52, and her husband Lee, aged 53, have three children who require round the clock care due to having an extremely rare medical condition and have spoken out to raise awareness of the toll a lack of respite care has had.

Their children, Leona, aged 14 Carris, aged 18, and Carris, aged 22, all suffer from an unknown condition which is most similar to Langerhans cell histiocytosis, where excess immune system cells build up in the body.

Before the pandemic, they were able to receive weekly respite care, where they would be looked after by care staff, giving Jayne and Lee a much needed break.

Jayne said: “We are on the go constantly. We get three hours of sleep a night.

“That bit of spare time, even if it’s only one of the children in respite, is a massive help - just to catch up on a bit of sleep or jobs without having to do normal everyday things for the children.

“We get up about 5.30am on a school day and we bring them downstairs, give Leona all her medication, then we get breakfast for Callum and Carris.

"Leona has bowel failure, so she’s fed directly into her vein. She floods every two hours so we set our alarm to get up at 2.30am and again at 4.30am to change her.

“Carris is on a feed, and the alarm beeps if she leans on it so we would have to get up for that.”

“Callum doesn’t go anywhere at the minute because of Covid and Carris has only just gone back to school. If they weren’t at school it would be a constant round of changing pads, giving them medication, getting lunch, giving them more medication. It would be like having new born triplets.

“We have been massively affected by school closures - they didn’t go out of the house from March - November last year.

“Before the pandemic respite days were being cut and they didn’t have enough staff. Since Covid it’s all gone pear shaped."

Since March 2021, three of Sheffield’s overnight short breaks centres for disabled children (Rushey Meadows, Gibson House and Mulberry Lodge) have been closed in order to accommodate emergency residential placements. Approximately 60 families have been left without respite care.

Jayne said: “When things were working well with respite a lot of parents were looking forward to that break. Now they are giving us PA (money to pay for personal assistance services) but you then have to find someone to do it or a care company and with staffing issues due to Covid there’s always a chance of cancellation.

“It’s all hit and miss depending on whether staff are available. It looks good on paper but you rarely get it.”

When Jayne was unable to find personal assistance services for Callum because of closures due to the pandemic, the funding provided for it was recouped by the government.

Jayne added: “After Covid I don’t think respite will come back. I think they’re trying to shut services for disabled kids and leave it up to parents to arrange personal assistance.

“The government need to open their eyes and think that these parents do a lot of care and if they don’t get that break they're going to burn themselves out and they will be left with a lot on their hands.

“Some days now I feel at my wits end I’m that shattered. We both work but get no support.

“I work one night a week in care in a bungalow with three vulnerable adults, Lee works Monday to Friday at Evans Halshaw. By 8pm he’s dropping his phone because he’s nodding off.”

"We don’t have our tea until 10.30pm some nights. We are constantly exhausted.

“There needs to be more funding, it can’t keep going on as it is.”

Coun Jayne Dunn, Executive Member for Education, Children and Families said: “We recognise how important reliable and timely respite care is for families and carers and we’re doing everything that we can locally to provide the respite care that they need.

"They have many competing demands and we know just how hard they work for their loved ones. We haven’t made any cuts to our respite provision but Covid has had an impact on how we currently deliver these services. We are committed to supporting vulnerable people and to providing respite care in Sheffield.”