A Westbury woman has called for answers after her night care support was unexpectedly withdrawn, leaving her struggling to manage her condition.
Ms Johnson, who was diagnosed with Multiple Sclerosis (MS) in 1992, uses a wheelchair and requires assistance with two stoma bags due to her limited mobility.
Until recently, she says she had been able to press an alarm button on a bracelet during the hours of 10pm and 7am if she needed someone to come out to her home. This was organised through Medvivo, which Ms Johnson believed was part of the wider support she was given via the NHS and the council.
But last year, the night care responder service was abruptly withdrawn. Six months later, she still has no answers as to why this is the case.
She said, “In August, I pressed my buzzer one night and said that I had a wet bed because my stoma bag had burst. I was told by a woman at the other end that they don’t do the night care responder service any more.
“I was told I’d have to ring 111. When I did, I was told the ambulance wouldn’t come for this kind of thing either. I felt like I didn’t matter. I was left there lying in my own urine with no one to help. It was degrading.” She managed to dry the skin around the stoma bag to “patch it up” then waited until 9am for her carer to arrive to help.
She decided to reach out to the White Horse News when it became clear her night care would not be reinstated. Now, she simply wants answers as to why.
Ms Johnson, a former executive chef in London, added, “I phoned my surgery, and they didn’t have an answer for me. Neither did adult social care services. I just want someone to tell me why it stopped. Was it a decision made by the NHS or the council?
“I wish someone had had the decency to call or write to me and warn me about it. Instead, I feel like I’ve been fighting for my rights, trying to get answers.
“I don’t understand why the care was stopped. That’s all I want to know. It’s like they aren’t treating me like an adult. They think I can’t handle the truth.
“This is not just a Wiltshire problem. Apparently, support is being removed across the country. But no one is saying anything. I watch the news incessantly, and the politicians aren’t fighting for us.”
Ms Johnson enjoys the independence she gets living alone aided by the four visits from ‘fantastic’ carers each day, as well as support from her occupational therapist and staff at the White Horse Health Centre. She also thanks her children, friends and neighbours who assist her with growing fresh vegetables in her garden.
She decided to raise her voice in a bid to bring further support to disabled people.
She added, “I’m a great problem solver, so I can come up with ways to look after myself. I use my disability benefits on gadgets I can use with my carers, like Alexa to switch my lights on and off. I’ve always been self-aware of what I need.
“I worry about other people in my situation with stomas, and also people in the wider community with conditions like dementia who need care.”
Emma Legg, corporate director for care and wellbeing at Wiltshire Council, said, “We are sorry to hear about the difficulties Ms Johnson has experienced and we are in regular contact with her to find a solution which will work best for her.
“We have moved to a new service, and all those using telecare were informed about the changes. While we still offer a 24-hour emergency response service, we are unable to meet overnight care needs via this service. People have been supported to find alternative ways to resolve any issues that may occur overnight.
“We know how important a care package is to someone’s way of life and wellbeing, and if changes need to be made for any resident, we will work closely with them to look at all the options.”
Pictured: Ms Johnson has raised her voice in a bid to help others in her situation
