"It's a nightmare every day " Two Sheffield doctors are struggling to cope due to lack of respite care for their autistic son

The couple attended a tribunal in December 2019 where it was decided that their 13 year old son Arnav should have his respite care increased but, due to Covid-19 restrictions, this never occurred.

Arnav has severe autism, ADHD, learning difficulties and is prone to violent behaviour, which has caused his parents concern for the safety of their youngest son, Chitvan, aged 5.

Arnav’s father, who did not want to be named due to the nature of his job, said: “During lockdown respite care was minimal - Arnav struggled with isolation. It was completely detrimental to his mental health.

"Arnav has severe tantrums, hitting his head on the walls. His room has been converted into a safe room. We have to bolt his door to keep Chitvan safe.

“I can physically restrain him but my wife Namrata and Chitvan have both been injured. Namrata suffered damage to her eye and had to go to A and E, she has still not fully recovered. Chitvan has been kicked in the tummy and ended up in A and E.

"The council says they understand but if a person is not in that situation they cannot understand. It’s a nightmare to go through on a day to day basis.”

Mulberry Lodge, where Arnav received most of his respite care has been closed since March.

Arnav’s father added: “Family support is ruled out. My mother is in her 80s and she needs support herself. Arnav has injured her as well.

"We have had personal assistant support for five years. They stay with Arnav for three to five hours.

“If PA support was not there I would have had to stop working altogether.”

The parents depended on respite care to catch up on sleep, but are still no clearer as to when, or even if, it will return.

The father added: "I have sleepless nights and then have to go in and manage patients. It is a lot to do with maintaining my own mental strength, but I don’t know how long I can do that.

“The council do not tell us if Mulberry Lodge is permanently closed or not. All we are told is that the council are trying but we don’t have any answers.

"Some families suspect it will never open.”

Carly Speechley, Director of Children and Families at Sheffield City Council, said: “We anticipate an increase in short break provision in three of our short break homes from October 2021. We are committed to supporting disabled children and their families because we recognise the value of respite provision.

"We have communicated with the families affected by this situation and provided alternative support, and we will be writing to them regularly about the current position until the situation is fully resolved.

“Overnight respite care in our short break children’s homes is currently limited due to a need to use these homes to temporarily provide full-time accommodation for a number of looked after children with disabilities. This is as a result of a national and regional shortage of placements for looked after children with disabilities and the impact of Covid 19.

"We have worked very hard to identify suitable alternative accommodation for them and now have plans in place to move them into more permanent accommodation.”