Brighton Family Told No Emergency Respite Available For Autistic Son

A family in urgent need of emergency respite care was shocked to find that the service was no longer available in Brighton and Hove.

Meredith McGill contacted Brighton and Hove City Council for urgent help with respite care for her autistic 14-year-old son, who has complex needs, after her husband Scott, 55, had a heart attack on Saturday 16 July.

When she contacted her social worker asking for emergency respite care for her son, Mrs McGill was told that the service was no longer available even though the council’s website states that an emergency bed was available at a residential home in Drove Road, Portslade.

Almost two weeks on, the family has still not been given any support to help ease the stress as Mr McGill recovers at home.

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

He is unable to speak and has severe learning disabilities and multiple anxiety disorders. He needs support from two adults when he is out in the community.

In the past, his respite sessions have been cancelled to allow other families to receive emergency care so Mrs McGill was shocked when she could not have the same help.

She said:

“What I worry about is it’s not just my family. If there is ever a time that families like mine could end up in crisis, it’s typically over the summer holidays.

“Our children are without school, without their routine and predictability. Parents are without respite, so this does affect us. This is going to affect anyone in a crisis who is in need of support.

“In the past, several stays were cancelled due to emergency respite. We knew it was offered, so that’s why I assumed it would be available to us.

“Whenever our child’s stays were cancelled, we never complained because we knew one day that could be us. Now it is us, there is no help. There is no emergency respite.”

The council has offered extra time with a personal assistant (PA) and at the Extratime holiday club for youngsters with special needs but Mrs McGill said there are no PAs available or any space at the holiday club.

When a placement was proposed outside Brighton and Hove, Mrs McGill said:

“I became hysterical. My son is autistic with a severe learning disability. He would not understand why he was being sent to a strange facility.

“He wouldn’t know where he was, why he was there and when or whether he was coming home.”

At this point, she asked her son’s specialist, Paramala Santosh, to intervene. Professor Santosh is also the specialist who cares for former model Katie Price’s son Harvey at the Maudsley Hospital.

A letter to the council’s disability social services team recommended emergency respite care due to the teenager’s “highly complex medical and co-morbid neurodevelopmental, neuropsychiatric disorders and associated severe learning/intellectual disabilities”.

The Labour MP for Hove, Peter Kyle, has taken up Mrs McGill’s case and is concerned that no emergency respite care is available.

He said:

“If anyone thinks that the McGill family don’t need respite care, and what is happening to them demonstrates clearly that the system is broken, then I invite them to my office in Hove to hear from me what this family are going through.

“I will move heaven and earth to get this family what they so badly need but I also want to reassure people that I am also taking this up in Parliament with the Health and Social Care Minister to try to prevent such a terrible situation from happening to other families in the future.”

The council said:

“We are sorry to hear the difficulty that Mrs McGill and her family are currently going through. We recognise the family is in under acute pressure at the moment and we are trying hard to work with the family and address their needs.

“We do have a number of respite beds but unfortunately there are none available with short notice.

“We would like to be able to offer respite provision to more families in need. But because of the huge cuts in government funding the council has experienced over the last 10 years or more, this simply isn’t possible.

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

“Due to the nature of respite, this is agreed with families well in advance, with children having a set number of days a month.

“In order to offer emergency respite in this instance, it would mean that children already booked into the respite provision would have to be cancelled in order to free up space. This would significantly impact on other children and their families.

“When families have an emergency, we will work with the family to look at what support is needed and how we can assist.

“We are looking at other support services and have approached the family with alternative solutions. We have made them a number of offers of support and we will continue to try to work positively with them.

“We always work to try to keep families together as that is normally in the best interests of the child.”