Row over housing means terminally ill girl, 7, has been stuck in hospital for nearly 4 months

Little Olivia Heary-Botham, who suffers from the rare condition Pontocerbella Hypoplasia Type 6 – which causes severe fits – has been in the Royal Preston Hospital since December 17, with her parents Jenna and Matt travelling backwards and forwards several times a day to administer vital trial medication.

The family say they are unable to make precious memories with her and their other two children, Kailen, 10 and Harper, four, and the pressure is "mentally draining”.

Jenna says she has reached out to the media in a "cry for help" after claiming her housing association, Community Gateway Association (CGA) has made no other viable properties available.

But CGA insists this is not true, and said that since 2017 it has carried out work on the family’s existing home and offered two other larger properties – including adapting one specifically for Olivia’s needs – but they have been refused by the family. It says it is still holding a three-bedroomed property which was refused in February, in case the family change their minds.

"Constantly split up”

"It's the worst situation we could be in", said mum Jenna Heary, 29.

“We are constantly split up. There's one parent at Olivia's bedside, and another on the school run, we have no down time. We never get a night all at home, and this is a time when we should be making the most of things, making memories."

The family currently rent a two-bed property in Thorpe Close, Preston, where they have lived since 2017.

Olivia’s condition means she is peg-fed and requires 24-hour care, and the home has been deemed unsafe for carers and the equipment Olivia needs, including a hospital bed and hoist.

Less than 50 people in the world have Olivia's condition and she is the first in Europe to undergo pioneering treatment through the Royal Infirmary in Newcastle. Because of this, her parents have to administer the drugs, three times a day, the last being at 11pm.

Jenna said the hospital staff have been "the only ones fighting our corner" and has hit out at Lancashire County Council's social care team.

She said: “Social care are really letting us down. I’ve been a CGA tenant for five years and says they have known about Olivia's needs for that time and the fact her condition is deteriorating.

It's unbelievable it's been allowed to get to this. How have they allowed four years to go by?"

Jenna has now set up a Go Fund Me page in a bid to raise enough money for a wet room at their current property.

What does Community Gateway Association say?

Louise Mattinson, Executive Director of Customers and Communities said: “Community Gateway Association (CGA) recognise the frustrations the Heary family are facing in trying to secure suitable accommodation which meets the needs of Olivia and the whole family in what is obviously a very stressful and difficult time. Our colleagues have been working hard to try and provide a home that meets the changing needs of this family to allow them to live happily and safely together.

"Insistent”

“The family were originally referred to CGA in 2017 by Preston City Council for a three-bedroom property. When a property became vacant close to Jenna’s mum, the family specifically requested that they be considered for it, despite it only having 2-bedrooms. Whilst we did not believe that this was the correct long-term choice for the family, Jenna was insistent that the need to be close to her mum was more important than the size of the property. As Olivia’s occupational therapist confirmed that the property was suitable and we were sympathetic to the family’s needs, we agreed to offer the family the home which they accepted.

November 2019

“After the family moved in, Olivia’s medical needs increased and the family had another baby meaning that their home was no longer suitable, even with adaptions, as it was not large enough. This was confirmed by Olivia’s Occupational therapist and the family requested a larger home. In November 2019 a large, extended home which could accommodate 4-bedrooms as required became available and was offered to the family.

"The family, along with their social worker and occupational therapist, agreed that it was suitable for the family’s needs with some adaptations to be done before the family could move in. CGA undertook all works which were requested by the occupational therapist and the family were kept updated with the works and invited to view the progress before they moved in.

Works completed

"The works were completed in February 2020 but disappointingly, despite all parties previously agreeing that the property was suitable, the family refused the property on the day they were due to sign the tenancy. Some minor damp that had arisen due to the property being empty which could be easily remedied, and it being too far away from Jenna’s Mum’s house, were given as the reasons for the refusal. After refusing the specially adapted property, the social worker and occupational therapist reviewed their previous decision and advised that the existing home could after all be adapted to meet the family’s needs. We agreed to carry out these works and the family were housed elsewhere whilst the works were completed.

Deterioration

“In June 2022, Olivia’s health deteriorated further and we were contacted by the family’s social worker, who told us that the family now needed a larger property again. In September 2022, we received an occupational therapist assessment setting out what was required in a suitable home to meet Olivia’s needs. This was followed up in January 2023 with a list of requirements necessary to allow Olivia to come home from hospital after she was admitted in December 2022.

“CGA own very few properties which meet these requirements in the areas that the family are willing, and able, to consider and those that we do own do not become vacant very often. The first property which became vacant that met the discharge requirements for Olivia was offered to the family. This property could accommodate 4-bedrooms but would require the installation of a wet room to meet the discharge requirements and we confirmed we were happy to undertake this work. The family viewed the property on February 6, 2023 but, unfortunately, declined it as they were not happy with the internal layout and the amount of space they felt it offered.

Floor lift request

“We were then asked to consider installing a through floor lift and building an extension to make the property suitable for the family’s future needs. We are always happy to consider such requests; we have done such works previously, and will continue to do similar works where it is possible, however in this instance it is simply not possible to do the requested works to this property.

"A through floor lift takes up a surprisingly significant amount of space and would result in the loss of 1 bedroom upstairs and such significant space downstairs as to render one of the rooms too small for the family’s needs. Furthermore, there is not sufficient space outside to build an extension that would provide the number of rooms that are required. We appreciate that Jenna, her family and the medical professionals are frustrated that we have been unable to find a suitable home that meets not only Olivia’s discharge requirements, but the family’s future needs as well. We are just as frustrated as we recognise that at the heart of this is a little girl, Olivia, who just needs to come home.

House is held

"If it was possible to do the works that have been requested at the latest property, I can assure everyone that we would, as we did at the previous property offered.

"It is not true to claim that we won’t do the works, or that we have deemed them unnecessary, it is that it is not possible to do them at this property. We have held this property for the family in case they reconsider their decision as it can meet all the discharge requirements necessary to allow Olivia to come home and spend precious time with her family.

"In the meantime we continue to consider each property that becomes available in the hope that something comes up that meets Olivia’s discharge requirements and also the family’s future needs.

"Biggest and most suitable” offered

"To date, we have had no other properties become vacant that are suitable and we are not aware of any becoming vacant in the coming weeks. In the areas where the family are willing, and able to live, this is the biggest and most suitable property type that we currently own. The family remain at the top of our priority list for housing and we hope that this situation will be resolved quickly for Olivia and are doing everything we can, including liaising with other local housing associations, to ensure that it is.

“We have done everything we can to find a suitable home for this family. In the meantime, we are aware that the family have bid on a number of 3-bedroom new build properties with another housing association in our lettings partnership and we will continue to support the family to find the right home for them”.

What do Lancashire County Council say?

A spokesman for LCC said: "We do not comment on individual cases but we are assured that we are working with the family and other agencies including health and housing to identify accommodation that meets the needs of the whole family.

"We are actively working with the family to come up with a safe solution to the challenges the family are currently experiencing. The family have a dedicated social worker who is working closely with all professionals involved in supporting the family to explore the support the family need.

"We appreciate that the current situation must be frustrating for the family and we will continue to work with them and partners in order to achieve the best possible outcome for the family."