Father of two terminally-ill children pleads for home move
FAMILY TOLD THEY MAY HAVE TO WAIT 10 YEARS FOR A BIGGER PLACE
A FATHER-OF-TWO terminally ill and disabled sons is desperate for Ealing Council to grant his family a bigger home as they struggle to cope living in an overcrowded two-bedroom council flat.
Patrick McCreesh lives in a ground-floor flat on the Golf Links Estate in Southall with his two sons and wife Angela,46.
Patrick, 56, is a full-time carer for his sons, Sean, 12, and Ryan, nine, who both have Duchenne muscular dystrophy – a terminal condition which causes muscles to gradually weaken, leading to an increasing level of disability.
His sons, who are wheelchair users, are also on the autism spectrum. One of his sons also has a heart condition, cardiomyopathy, and scoliosis.
Sean and Ryan both have to share a room in the two-bedroom flat, which has led to severe stress for all members of the family, due to a chronic lack of sleep and inability to move around their rooms comfortably.
Patrick says his home is not suitable for the needs of his disabled sons, with inadequate sleeping and bathroom arrangements that has left all family members feeling “frustrated”.
Patrick says he has provided Ealing Council with letters of recommendation from a professor from Great Ormond Street Hospital (GOSH), a local physio and occupational therapist, the GOSH’s Citizens Advice Bureau and GOSH Social Services. They have all urged the council to provide the family with a bigger home.
In a letter seen by this paper, a family support officer from GOSH said the problems arising from their living situation “are very concerning and it is paramount that a new house is provided as soon as possible to avoid any more harm and prevent a serious accident”.
Despite their efforts, the council has not moved the family into a bigger property. Instead, Patrick claims he was told by the council to wait “eight to 10 years” on the housing waiting list or to “move out of London”.
Patrick said: “I was told to wait eight to 10 years for a suitable property, but that time is a luxury my boys don’t have.
“To be brutally honest, they might not make it to that point. It’s a difficult subject – some children make it to around the age of 30, but some pass away around 13 to 14 and every case is individual.”
According to the NHS website, Duchenne MD is one of the most severe forms of muscular dystrophy and people with the condition usually only live into their 20s or 30s.
The father-of-two added: “Time is a luxury. In what time they have, I want to make it the most comfortable and safe environment that they can possibly have. To make sure they’re happy. The way it is at the minute, it’s not like that.”
Patrick says his sons’ bedroom will get more overcrowded with time as their condition gradually worsens and they require more equipment.
“It will only get more overcrowded as the months pass with two hospital profile beds, two power chairs, two manual back-up chairs, a portable hoist and a shower chair,” he said.
Patrick described how, depending on the way the condition progresses, his sons may have to be fed with a PEG (percutaneous endoscopic gastrostomy), which is a feeding tube placed through the abdominal wall and into the stomach.
He added they may need a cough assist machine and, in the longterm, “may end up in a hospice because we might not be able to provide the care.”
For now, however, Patrick says the home is not fit-for-purpose for the needs of his two children.
“Bathing them, changing them, the room is so small. I nearly fell over the other day. If you put myself and my son in the wet room, you can’t move, it’s so small,” he said.
“To give proper care, we have carers coming in the morning. Carers in the room with the boys, it’s like a jumble sale, you can’t move. It’s very detrimental.”
The father-of-two also says the bathroom is not adapted and has “no changing facilities that give any dignity or ease of use”.
The family-of-four all share one bathroom, despite Muscular Dystrophy UK, a charity, recommending everyone with the condition to have en suite bathroom facilities.
The charity’s adaptation manual states: “It is recommended that everyone with a muscle-wasting condition, who needs a wheelchair or will need one in the future, has en suite bathroom facilities. This can, or will, enable them to be undressed on their bed and be taken to the bathroom (possibly on an extended track of the ceiling hoist), within the privacy and warmth of the two rooms.
“The provision of en suite bathroom facilities is a real need. If the bathroom or bedroom is too small to allow sufficient space for the additional door, necessary equipment and the circulation space for a wheelchair, then an extension will be needed.”
Bedtime is also particularly difficult with family members, at times, getting as little as two hours of sleep.
“They’re on the autism spectrum, they’re in the same room sharing, with such close proximity to each other. Any sort of sound or noise disturbs them so much,” Patrick said.
“They can’t help it, but they get easily upset – there’s a lot of screaming and shouting. They need their own space.
“The both of them, they’re totally stressed all the time. Sometimes I have to go into the room at night, I have to remove one and take them into my bedroom, let them stay there for a bit. Once the other goes asleep, then I have to take him back to the bedroom.”
As a result of the pressure associated with living in overcrowded homes, one of Patrick’s sons is currently seeing a counsellor at school, while Angela, a part-time customer service assistant on the London Underground, is taking antidepressants.
A spokesperson from Ealing council said: “We have been in contact with Mr McCreesh after he raised concerns about his accommodation needs.
“He and his family were previously living in shared ownership and in normal circumstances homeowners are not permitted to apply to join the housing register.
“The council, however, assessed his needs and used its discretion to secure council accommodation at Babbage House, where they currently hold a secure tenancy. They were then awarded priority for rehousing in October last year.”
Patrick said the family previously lived in Edith House, beside Ealing Hospital, which was also not suitable for his children.
In order to get out of their home in
Edith House, the father-of-two would have to carry his sons down the stairs one by one, followed by their wheelchairs, in order to take them down for their transport to school.
Patrick claims the lift in Edith House was “breaking down” and he would have to navigate four heavy doors, with his sons, to get out.
The Ealing spokesperson added: “Due to reduced availability of social housing lets each year in Ealing and a growing demand for such properties, we have been unable to find a suitable property for him and his family.
“There are at least two other families with very similar needs to Mr McCreesh who have been on that list longer than he has. We understand his frustration, but there is simply not enough properties available that meet his housing need at the current time.
“There are currently almost 11,300 households waiting for a socially rented, affordable home in our borough, but last year only around 430 council homes became available to new tenants.
“The council has recently been awarded almost £110 million from the GLA’s Affordable Homes Programme, which will help pay for the construction of 1,032 new homes in the borough – 561 of the new homes at those sites will be let by the council at genuinely affordable rents priced within the means of local people on low incomes. The remainder will be available as shared ownership, helping first time buyers get onto the property ladder.
“This is part of Ealing council’s programme of delivering 2,500 genuinely affordable homes by 2022, which we are on track to deliver.”
Patrick said he feels “absolutely frustrated” and “angry with the council – they’re not working with us”.
“They’re reading from a script like a telesales person. There’s no empathy or understanding at all, the impression I get is being told to just get on with it. I’m very frustrated and angry about it,” he added.