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'I'm in fear of my life': Terminally ill Dagenham woman stuck in flat as council struggles to provide accessible homes

PUBLISHED: 12:00 12 September 2019 | UPDATED: 07:40 16 September 2019

Jackie Dawes with her daughter, Sarah Harris. Jackie was diagnosed with motor neurone disease in May and is slowly losing the ability to walk. It is a fatal disease. The situation is made worse with the lack of available and disabled accessible council homes. Picture: Luke Acton.

Jackie Dawes with her daughter, Sarah Harris. Jackie was diagnosed with motor neurone disease in May and is slowly losing the ability to walk. It is a fatal disease. The situation is made worse with the lack of available and disabled accessible council homes. Picture: Luke Acton.

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A council tenant stuck in an 11th floor flat is fearing for her life as her debilitating illness makes it harder and harder to live independently.

Jackie Dawes' building. She lives on the 11th floor. With temperamental lifts, she's afraid of what will happen if there's a fire or she has a medical emergency. Her condition means getting down the stairs is a daunting prospect, and as she gets worse it will become impossible. Picture: Luke Acton.Jackie Dawes' building. She lives on the 11th floor. With temperamental lifts, she's afraid of what will happen if there's a fire or she has a medical emergency. Her condition means getting down the stairs is a daunting prospect, and as she gets worse it will become impossible. Picture: Luke Acton.

As the council struggles to provide enough social homes for the borough, a letter from the authority shows at least a dozen of its most vulnerable residents face an "extensive wait" for accessible homes.

Jackie Dawes, 57, has lived in her Dagenham home for 22 years with her husband Paul Laegas.

She was diagnosed with motor neurone disease in May, a life-changing and terminal illness. Her flat, which isn't disability accessible, is becoming increasingly unfit as the disease takes more and more of her ability to move.

Jackie's ability to even get out of the flat is in the hands of a temperamental lift that shuts down whenever there's a fire alarm. False alarms are frequent, according to Jackie.

Jean Dawes' wheelchair doesn't even fit into her toilet. though she can walk around the flat now, MND is expected to take her ability to walk in a matter of months. She already relies on the chair when she leaves her home. Picture: Sarah Harris.Jean Dawes' wheelchair doesn't even fit into her toilet. though she can walk around the flat now, MND is expected to take her ability to walk in a matter of months. She already relies on the chair when she leaves her home. Picture: Sarah Harris.

"I'm in fear for my life," she said. "I'm truly petrified of a fire.

"My main concern is a medical emergency. If I have a fall and the lifts are out, how are the paramedics going to get up 11 flights of stairs and how are they going to get me out if they need a stretcher?"

Motor neurone disease is a rare condition that progressively takes away a person's ability to move and is always fatal.

A third of MND sufferers die within a year, and half within two years, according to a spokesman for the MND Association, a charity dedicated to the disease.

A bath chair installed by the Motor Neurone Disease Association. This and a small handrail in the toilet are the only alterations made to the flat so far, said the family. Picture: Luke Acton.A bath chair installed by the Motor Neurone Disease Association. This and a small handrail in the toilet are the only alterations made to the flat so far, said the family. Picture: Luke Acton.

Jackie has lost the use of her right arm and is now dependent on a wheelchair when she leaves the flat. That wheelchair doesn't even fit through the door to the toilet.

A letter from a council manager about Jackie's situation on August 28 said chronically ill and disabled residents face an "extensive wait for a housing solution".

He expected that would be the case unless "significant" funds and resources were committed to the problem. With the financial pressures the council is under, he finished, that's a difficult challenge to take up.

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An authority occupational therapist assessed Jackie needs a two-bed, ground floor flat with an accessible bathroom. She has been rated the highest priority of Additional Preference. As of the letter's date in late August, 15 people needed the same thing.

This problem isn't just in Barking and Dagenham. The housing system at large isn't fit for cases like Jackie's, according to the MNDA.

"The system is very, very slow, especially in the context of how fast MND progresses," said MNDA policy manager Alex Massey.

"A condition like MND really shows the gaps in statutory services, because they just do not keep up with needs."

Only 7 per cent of England's homes are disabled accessible, according to a 2017 housing association report. There just aren't enough to go around.

The MNDA wants the government to introduce legislation that mandates a certain proportion of new homes be disabled accessible. In the meantime, Jackie is living with the system now.

"The sad part of this illness is, everything else goes, but your marbles don't. They stay," she said.

"I can still think and be totally aware of everything when it's going on, even in the late stages. I just won't be able to do anything about it."

All she wants to be able to do with the time left to her is be able to sit in a garden outside her home.

The family are due to meet with the council about Jackie's needs, but a date has not been set.

A council spokesman said: "Barking and Dagenham, like councils across London, faces a significant shortage of adapted and adaptable housing stock to meet the needs of these residents.

"We are working to increase the housing options to meet this demand, but options around developing new homes and adapting existing housing stock are both lengthy when we have residents like this who need accommodation urgently."

The Department for Housing, Communities and Local Government has been contacted for comment.

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