Mum’s despair as she fights to extend son’s respite care

Meredith McGill contacted Brighton and Hove City Council for urgent assistance with respite care for her autistic 14-year-old son, who has complex needs, after her husband Scott, 55, had a heart attack.

Last year she received a letter from council officials cancelling her son’s respite care to make way for an emergency case.

But despite her husband’s ill health and her son’s need for two-to-one support when he leaves the house, she is frustrated that her family is not being treated in the same category.

The letter from the council’s “specialist community disability services” team sent last year said: “I am writing to inform you that due to an emergency full-time placement starting at Drove Road on 31 August 2021, there will be alterations and cancellations to (your son’s) stay at Drove Road.

“We apologise that this situation has occurred as we are aware it’s likely to have an impact to you and your family.

“We are working hard with this young person, their family and providers so that the Drove Road service can return to normal, although we cannot put a timescale on this.”

Mrs McGill's son when he was younger

Mrs McGill’s son, who she asked not to be named, has routine respite care at a specialist residential home in Drove Road, Portslade, four times a month to give his parents a break.

He cannot speak and has severe learning disabilities and multiple anxiety disorders.

Three weeks after Mr McGill’s heart attack, the council provided two extra nights of respite care for the teenager and an additional day at the Extratime holiday club for youngsters with special needs.

Mrs McGill said: “My husband and I were only ever interested in short-term respite but we have no idea what short-term respite represents. No one will clarify.

“In terms of ‘ongoing support’, to date, we have only received two extra days of respite at Drove Road and a cancellation, resulting in an extra day at Extratime Holiday Club.

“I wrote to disability social services asking for help on July 17 and we still have nothing other than those three days.”

Mrs McGill has received support from her MP, Peter Kyle, who vowed to “move heaven and earth” to get the family the support they need and to bring up the issue in Parliament with the Health and Social Care Minister.

Mr Kyle said: “I’m shocked to have seen what this family have gone through and to learn how the system has failed, failed and failed again.

“It is not OK to leave families in crisis without a plan of action – and the public would be amazed that this is what happens.

“There’s clear evidence that the emergency provision was withdrawn and nothing else was put in its place. How can this be in 2022?

“It is going to take a serious accident, injury and trauma for ‘disability social services’ to act – and I don’t say that lightly.

“I will continue to raise this in Parliament and locally in Hove. We simply must start financing these services properly.”

The council said: “We recognise the McGill family is in under acute pressure at the moment and we are trying hard to work with the family and address their needs.

“Emergency residential respite beds do not exist locally or nationally in the form that is being asked for by the family.

“There have been occasions in the past where we have offered emergency accommodation longer than a normal respite stay at Drove Road.

“Every family and young person that we support has different circumstances and individual needs. As a result, we differentiate our responses.

“In the instance referred to, there were exceptional circumstances when we had no alternative other than to accommodate a child due to our legal care responsibilities under the Children’s Act.

“However, Ofsted has made it clear to us that it does not consider Drove Road to be suitable for anything other than short-term respite.

“We remain committed to working with the McGill family to offer them ongoing support."