A single mum-of-six says she is 'disgusted' at how quickly the decision was made to half her vulnerable daughter's night care package. 

49-year-old Michelle Burgess-Tolley is the mum of Ellie Burgess-Tolley, 23, who has autism, cerebral palsy, pathological demand avoidance and learning disabilities.

The eldest of Michelle's six children, Ellie could be disruptive in the family household and had what her mum described as a 'mental breakdown' in March 2020 due to the restrictions during lockdown 

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Her needs at that time significantly increased and police support was needed on several occasions to restrain Ellie due to incidents of violence, said her mum.

The family, from Grange-over-Sands, battled on with what they say was very little support until in September 2021, they managed to get in-house care.

(Image: Michelle Burgess-Tolley) Last year Ellie chose to live independently in Kendal against Michelle's wishes.

As part of a care package, she was receiving a 2:1 ratio of support through the day and night.

Funded and arranged by NHS Lancashire and South Cumbria Integrated Care Board (ICB), a decision was made last month by the Continuing Healthcare team (CHC) to reduce Ellie's staff to resident care ratio from 2:1 at night time to 1:1.

The reasons given on May 28 were that Ellie's needs were stable at night and that a 2:1 ratio was too restrictive.

Michelle says this was told to her via email, rather than at a review meeting a week before, and short notice and decisions to be made about staff.

The changes were to be implemented from June 1.

(Image: Michelle Burgess-Tolley) She said: "The decision basically gave me day's notice and with no information as to how this decision was come to.

"It was basically made overnight. As an employer I have a legal obligation to my staff and they have contracts."

Michelle says Ellie still remains a highly vulnerable adult and suffers with incontinence - which is one of many reasons a 2:1 ratio is still needed during night time.

She added: "I have appealed this decision and they are allowing me three months to gather information and make an appeal.

"Ellie will then have another review but we are still at risk of having our overnight support reduced.

"The battle is by no means over and I suspect in three months they will stand by that decision.
(Image: Michelle Burgess-Tolley) "I want to highlight this in the media because the pressure that it put on families when these decisions are made is appalling.

"Her needs have not been re-assessed and they haven't changed.

"Ellie's bedtime is not consistent neither is her behaviour.

"Sometimes her bedtime is 11pm - sometimes after midnight.

"If she wakes at 4am she needs two staff, then she may wake at 7am incontinent.

"If this is allowed to go ahead then it becomes a safeguarding issue. 

"I have three months to try and prove that Ellie needs 2:1 support when that should be, and was, a given.

"I have to paint my daughter in such a dark picture to be able to get her the support she needs for her safety and that of my family and staff.

"I wish to highlight this in the media as I am extremely disappointed and disgusted at how this decision has been made and I know other families will have had this sudden pressure applied to them."

NHS Lancashire and South Cumbria Integrated Care Board said it does not comment on individual cases however assured that care needs are being assessed and that due process is being followed.