Welwyn Garden City mum reveals the failings of adult disability care and housing
- Credit: Danielle Chivonne
Welwyn Garden City resident Danielle Chivonne, a 36-year-old mother of two who was training to be a midwife, is now paralysed on both legs and living in her dining room.
After suffering from COVID-19 for nine weeks, things went downhill for Danielle as she picked up multiple other disorders in the wake of the virus.
She feels she has been failed by the system after not receiving adequate care either in hospital or through social care and housing.
Danielle already had a minor case of Ehlers Danlos but after getting COVID the first time, Danielle was diagnosed with Functional Neurological Disorder (FND), Postural Tachycardia syndrome (PoTS) and a more severe case of Ehlers Danlos.
This led to her having seizures, paralysis, body pain, fatigue, dislocated bones, and spondylitis and spondylosis, throat infections and randomly losing feeling in different parts of her body.
At the moment, Danielle’s paralysis has spread to both legs, her bladder and bowel. Doctors are left unsure of how to treat her.
Danielle said "I’ve dislocated my shoulder and my knee just from living in the wrong conditions. Because I can’t feel it, I can’t tell that I’ve injured myself.”
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She currently lives in her dining room as she needs to be carried up and down the stairs and she is unable to use the toilet - just seven to 10 steps away - as her wheelchair does not fit through the hallway.
Danielle has applied to Welwyn Hatfield Borough Council on multiple occasions for the housing department to change her living conditions and make it easier on her and her family to deal with the situation. Currently, her six-year-old son, who is also in a wheelchair, has been registered by his school as a young carer.
Danielle says her disability worker, who was appointed to assist her in June, has not responded to multiple calls and emails to set up a care plan. She has not answered calls from her occupational therapist or her son’s school and only contacted Danielle in mid-January.
“She gave me a bit of paper with her details and said she does not have a good phone so I email her and call her but she still does not get in touch with me,” Danielle added.
“At the moment, my friend’s daughter - who is a carer - is staying with us but otherwise my partner comes after work but he lives with his mum and looks after her as well and now he’s torn between it all. My little boy is in pain himself but he tries to help me. And my 17-year-old is not coping with it well at all” Danielle explained.
In regards to housing, the council put her in Band C - for households with an identified housing need - but her family is worried that this an emergency situation and it is not looked into quick enough.
“I can’t get to my bathroom and I have to be carried. They gave me a wheelchair to go to the toilet but the council have kept the downstairs toilet in such bad repair that I can’t actually get my chair in. I now have a catheter and a commode with the wheelchair. I’m just living around everybody in my family.
“I can’t even get through my front door. The council said if a fire occurred, I was to stay in the property and wait for firefighters to get me. I’ve been waiting since November for a ramp to get out my front door.
"It’s really affecting my mental health. I don't leave the house, the last time I left was for Mother's Day but before that I can’t even remember,” Danielle added.
Jack White, managing director of White’s Training, a nationwide adult social care training service, said the entire profession is in a state of crisis.
"It’s not so much the individual care provider all the time but sometimes they are confined by the constraints of what they can access within their local authority.
“You can always ask for a second opinion. People do not understand their own rights. And unfortunately, as a sector, we are not transparent enough with telling you what you should be able to access.
“But it shouldn’t be down to the individual to have to request the care but it should be down to the carer to offer support.”
For now, ambulance crews have reported her situation to the council housing and adult disability service as a case of severe neglect.
But Danielle has also been told by the council she would have to find her own carer as they cannot support her due to a shortage.
A WHBC council spokesperson said: "We will always do everything we can to help someone in a situation such as this, and we’re sorry to hear that the person concerned feels we’re not working fast enough to help her and her family.
"We are always happy to review new information regarding banding when provided.
"The Repairs team aim to carry out repairs as quickly as possible. If someone is experiencing an issue with an outstanding repair this can be raised as a complaint by going to our website https://www.welhat.gov.uk/contact/complaint, by emailing email@example.com or by calling 01707 357000."