Toddler with life-limiting health condition left in 'nightmare' council flat for two years against NHS advice

Lilly-Anne Jacobie’s multiple illnesses mean a nurse must stay five nights a week to care for her round-the-clock and she requires a large amount of medical equipment in her bedroom.

But her room in the family’s ground-floor flat in Carshalton is not fit for purpose, according to the specialist nurse that works with her.

Grant Mallon, a paediatric nurse at Chelsea and Westminster Healthcare NHS Trust, has repeatedly written to Sutton Council urging for Lilly-Anne, her mum Katie McCormack, and eight-month-old brother Charlie Jacobie to be moved into more suitable accommodation.

The toddler spent the first 17 months of her life in hospital before the council found her a home

Lilly-Ann suffers from intestinal failure and delayed development and has to be fed intravenously.

The conditions often leave her critically ill – and her health problems are exacerbated by the size of the room and flat, according to Mr Mallon. But the council have so far failed to find alternative housing for the family, who have lived in their Sweet Briar Avenue flat for two years.

Miss McCormack, 27, said: “I keep getting down about it all, because she deserves the best, and when she comes home from hospital, and with the life-limiting condition that she is in, to come home to this place is completely heart-breaking.

“It not good enough for us to be forced to live here. I know, and the medical professionals involved with treating Lilly-Anne know, that we should be a priority for a better home – but that is just simply not that case.

“We have a nurse here five nights a week, from 10pm until 8am, to help out.

“And they can’t believe the world we are being forced to live in. It is an absolute nightmare and I have had enough.”

In a letter to the council sent in April last year, Mr Mallon wrote: “Lilly-Anne and her parents are currently living in a 2 bedroom flat with limited space and limited storage.

“It is now evident that her needs are increasing and she has long term serious and complex health needs.

“An essential part of keeping Lilly-Anne out of hospital and supporting her family at home is the provision of a home healthcare package that involves overnight carers.

“The current room size makes it extremely difficult for the carers to look after Lilly-Anne and safely deliver her care.”

Lilly-Anne's bedroom, which is stuffed with her medication, is unsuitable for her needs

A housing support worker has also written to the council earlier this month explaining that the flat was unsuitable for the amount of medication and equipment required to care for Lilly-Anne, who spent the first 17 months of her life in hospital until Sutton Council found a home for her family.

Samantha Williams, who works for the housing and care support service Family Mosaic, said in a July 10 letter: “Please re-house this family in a more appropriate and better located home as a matter of urgency.

“Lilly has her own room which has a specialist profiling bed.

“There is a waking nurse who cares for Lilly in her bedroom five nights a week and therefore requires a reclining arm chair which is also located in the bedroom.

“However due to the size of the room and all the space the equipment takes up when the chair is reclined the exit to the bedroom is blocked, therefore, creating a hazard whilst the exit is obstructed.

Miss McCormack added: “The radiators in here are literally hanging off the wall, too, and because Lilly-Anne is on a drip stand – if the wires get caught on it the stand could potentially fall on her.

“It is also difficult for her to get around in her room with the drip stand because her room is so small.

“I want to, as her mother, do the very best I can to look after her and make sure she has the life that she deserves to have. But it is so difficult, and it is really starting to get me down.”

Miss McCormack said the condition of the flat is a health risk for her daughter

Simon Latham, head of housing and regeneration at Sutton Council, said: “We are aware of Katie McCormack’s circumstances, have assessed her application for housing and agreed to rehouse her family in a property with an additional bedroom.

“Her application is being dealt with in accordance with the council’s policies and procedures and we hope that she will move to a suitable home as quickly as possible.”

But Miss McCormack said: “I just hope they stick to their agreement. Believe me, yesterday I was told by a housing officer I was on the list like everyone else – and that nothing was agreed.”