Debbie has been using Independent Lives services since 2007. She lives in Horsham.
I was diagnosed with Multiple Sclerosis (MS) when I was in my early twenties. I was hit by a car, and immediately after the accident I had numbness from my waist down.
The symptoms of numbness would subside and then return, and this went on for a while until I was diagnosed with relapsing remitting MS.
Despite my MS, I worked in corporate banking for 15 years, then after I retired, I was a fundraising volunteer for a local children’s charity for a few years and treasurer of the Shoreham MS society.
Now in her sixties, Debbie’s condition has progressed
I have no feeling in my legs, so I’m a full-time wheelchair user. Over the last six months, my left hand – which is the only hand I’m still able to use – has become stiff, so I rely on my carers now, more than I ever have.
It also has a huge impact on my social life. Years ago when I was well enough, I’d go out and see friends, but as the symptoms of my MS have increased, it’s meant that the social activities I can participate in have become slowly become fewer and fewer, and it’s made it much harder for me to make friends.
Before Debbie received a Personal Health Budget (PHB), she was supported solely by her partner Tony, who passed away in 2022.
Tony was diagnosed with early onset Alzheimer’s when he was 51, which is why I was originally given the PHB, as he started to become unable to care for me.
At first, I thought he’d started to develop depression, so when he received his diagnosis, it was a real shock, but we carried on for another eight years until his symptoms progressed to the point where he also needed care.
Living together as a couple with two progressive neurological conditions had its challenges, but Debbie and Tony made it work for as long as they could.
I think it worked as well as it did primarily because at no stage did Tony ever moan or complain about my condition or about caring for me. I originally thought he’d developed depression because he found caring for me too difficult, but in retrospect, he loved caring for me.
Then as his Alzheimer’s progressed, I did everything I could to make sure he was okay, so we were supporting each other.
Today, Debbie is supported by a team of six carers, who provide extensive support.
I initially started using agency carers, because I thought it would be easier, but over time, most of the agencies had less and less availability or weren’t able to cover the area I live in at all.
Now I employ six staff, who support me twelve hours a day to do everything, get me up, washed, dressed, and enable me to go out into the community.
Debbie has been supported by various Independent Lives teams since her PHB began 17 years ago.
Everyone at Independent Lives has been incredibly helpful, I certainly wouldn’t be able to manage employing six carers without their help.
Independent Lives provides a range of services and support for people receiving Direct Payments. Click here to find out more about our Direct Payment support services.
We also provide activities for older people, people with support needs, and those living with dementia. The support we provide allows carers some time and space for themselves. To find out more about our carers respite service, please click here.
