A Ramsgate woman diagnosed as suffering from functional neurological disorder (FND) and needing to use a wheelchair has spent four months living in her mother’s conservatory because no suitable housing has been found.
Samantha Pearse, 27, became unwell in January, losing feeling in her hands and legs, suffering limb weakness, cognitive delay and collapsing due to a loss of motor skills.
The Dover custody officer, who is currently unable to work, has been enduring extreme temperatures in the conservatory, up to 48 degrees last week, and has no access to bathroom and washing facilities because she cannot navigate access to the rest of the house.
Sam was living in a flat in Ramsgate with her partner Nathan Coade and their two dogs but having to use the wheelchair means she cannot get to the flat and it is also too small for the hospital bed, a Sara Stedy to aid her transfers out of bed or on/off the commode or wheelchair.
Samantha is fully dependent on the support from others and says she is distressed at the sparsity of rehabilitation care and at being trapped in her mum’s conservatory.
She said: “At the end of January I began to get pins and needles and my legs would go dead. Then I was struggling to get out the sofa and my legs would give way so that I collapsed. I went to A&E and they did blood tests and an MRI and I was in there 48 hours.”
The MRI came back clear for ‘mechanical’ faults and Samantha was waiting to see a neurologist. After several days of being unable to get out of bed she ended up back in A&E.
She said: “At this point I couldn’t stand at all and was in a wheelchair.
Sam was transferred to the neuro ward at Kent & Canterbury Hospital but says she wasn’t given physio until her mum requested it.
Samantha said: “I was diagnosed with FND at the beginning of March and within four days was sent home. There wasn’t a home assessment and my mum didn’t have any of the equipment I needed.”
The hospital then provide the bed and other items and Samantha was discharged to her mum’s Minster home.
Samantha says this week was the first physio session provided by the NHS since being home although she and Nathan have paid for a private neuro physio. The onset of the illness has been due to mental trauma rather than physical reasons.
Nathan and Samantha say one of the hardest things to cope with is not being able to find a two-bed home suitable for her medical needs and rehabilitation.
An occupational therapy report from Kent County Council lists a number of requirements, including level access, kitchen and bathroom adaptions and space for the necessary hospital equipment.
The report adds: “Due a deterioration in her health, Miss Samantha Pearse is currently living in her parents’ conservatory space as she is not able to access her own home. Within her parents home she does not have access to appropriate toileting or bathing facilities, access to the family social spaces or safe and appropriate access / egress from the building. Miss Pearse has to tolerate inappropriate living conditions of extreme heat and cold and is unable to transfer safely from this area.
“Due to Miss Pearse’s current living environment and functional needs, she is considered to be in critical need of rehousing.”
Samantha said: “There is just nothing that we are eligible for. My mental health has deteriorated drastically. I don’t have any alone time as I always need someone there to help me so I have no time to process the things that are happening.
“The heat in the conservatory is a big problem. It has got so hot that it is painful and I have cried and I’ve always been the type of person that doesn’t cry.
“The only things that have come up are for over 55s, so I’m not eligible, or Kennedy or Trove courts which are no good I the lift breaks.”
Partner Nathan, who is being Samantha’s carer and working as a courier driver, says the couple are ‘at breaking point.”
He said: “Having FND has changed Sam’s life. She was a super bubbly, adventurous, social and outgoing person before all of this. She now suffers with extreme anxiety when she goes out with fear of people looking at her in a wheelchair, and is a complete shadow of her former self.
“She is suffering horrendously with her mental health which is being made so much worse living in the conservatory as she feels like she is a burden, in the way, and has no privacy.
“It’s so horrible to see her change completely. I just feel useless as there is nothing more we can do now to get us our own home and get her back with me and the dogs.”
Determined Sam has managed to take eight steps this week for the first time since she became ill but the rehabilitation journey will be lengthy.
A spokesman for East Kent Hospitals said: “We’re sorry to hear of Ms Pearse’s situation. When she left hospital, community services, including physiotherapy and district nursing teams, have been providing support. The teams are contacting the family and will work alongside them to establish if there is any more support they need from health or social care.”
Thanet council says Sam’s housing need is ‘the highest possible priority.”
A Thanet council spokesperson said: “We are not able to comment about the details of individual cases, however, we are aware of Mrs Pearse’s needs and her application for a transfer to a more suitable home has been given the highest possible priority.
“We work closely with Kent County Council’s Occupational Therapy team and will ensure that any accommodation that we are able to offer Mrs Pearce will be suitable for her needs. At this stage in the process it is not possible to give an exact timeframe for the transfer.”
There are currently 1,691 applicants on Thanet council’s housing register. There are 181 households in temporary accommodation, with 96 of these housed outside Thanet.
Cabinet Member for Housing, Cllr Jill Bayford said: “Demand for accommodation is high and we anticipate that it will continue to rise in the short term due to a range of factors including the cost of living crisis, rising costs in the private rented sector, and courts clearing their backlog of eviction notices.
“We will continue to work as hard as we can to support families and individuals with housing needs in our district.”