FA & I: Celebrating 25 years together
My diagnosis
My scoliosis
Muscle Spasm
Using a wheelchair
My powerchair
My Speech
NHS Wheelchair Services
Foot surgery
Using a catheter
My diabetes
As FA progresses
Living with depression
Ataxia UK Coventry and Warwickshire Support Group
Independent Living
Getting the care I need
Using a hoist
My Hive
Taking CoQ10
Using my computer
Using public transport
The Open University
Working life
Travels in the UK
Walt Disney World

Please say hello, let me know that you've been here...
My guestbook
Last updated: October 2018

Getting the care I need

For the first few months of having care I found it all very undignified and I felt so self-conscious, but now I completely feel at ease - I forget that it’s “personal care” my carers give me and focus instead on chatting to them. I appreciate that anything I’ve got they’ve seen lots of times before - the part of my brain that says “oh no I’m naked” switches off when the carers are around and I don’t even think about it anymore.

Promoting Independence

For the first 6 weeks of living independently I had something called Promoting Indepence where I was challenged to do what I could do myself, find out what what I couldn't and from this determine how much care I need. I found this a stressful time and I was being told to do silly things like mop my own floors and handle hot food - I had to argue hard for some of the care I knew I needed. But in hindsight I got a lot out of being challenged - I'm a lot more independent than I ever thought I could be.

I am very happy with the amount of care I now receive. I get Direct Payments with which I employ PAs to help me with personal care, exercise, shopping and looking after my home.

My care package

I have 5.5 hours care in total every day - 2 hours in the morning in which my PA helps me to get out of bed, showered, help me stretch my feet and put splints on (which I've worn since having foot surgery), get dressed, prepare breakfast; followed by 1.5 hours where I stand up using a standing frame, my PA helps me to anything that needs doing around my home, deal with any paperwork that I need help with, and doing any domestic work or washing/drying, or sometimes I will use that whole 1.5 hours to go shopping; and 1.5 hours at night when my PA helps me to hoist me on the toilet, use my exercise bike, get medication etc. ready to be able to take throughout the night, help me brush my teeth, help me to take my splints off and stretch my feet, and help me into bed.

Physically I depend on other people a lot but the way I see it that care helps me to be independent.

Agency care vs. PAs - what Direct Payments were really meant for

When I first moved in I started to receive Direct Payments and with the help of Penderels Trust's adviceI became an empoyer. This allows me to employ whoever I like to provide my care, who I pay using a Direct Payment from Social Services which is paid into my bank account together with my contribution (the care component of my Disability Living Allowance).

For the first three years I used my Direct Payments to employ an agency to provide my care. Dealing with this agency was a constant stress and I found it impossible to plan my life around them - they were regularly two hours late, and I had little control over the care I was given as they'd follow a "care plan" laid out by Social Services and the agency. I really longed for the freedom of PAs but as I used a mobile hoist to transfer, Social Services had stipulated that I need two people to help me transfer and I wouldn't be insured with any less. So I always thought I'd be stuck with an agency as I'd have no chance of finding two PAs who work together.

I would often have a little rant about the agency on Facebook and after a particular rant a Facebook Friend messaged me saying that she and her sister would be up for being my PAs. They then popped round for a bit of an informal interview, some papers were signed which put them onto my payroll and a week later I had my PAs! Penderels Trust make the process of employing and paying PAs easy.

Carers who work for an agency have to abide by agency rules whereas my PAs only have me as their employer to please. I wrote my own contract which states the hours of work that fit in with me and lists duties that I need. I'm fortunate in that I've found some REALLY good PAs - they feel more like friends than employees and I enjoy having a chat and giggle with them - I feel far more relaxed now than I did with the agency. I can rely on them to be on time, ask them to be flexible when needed and be confident that they know my needs.

In 2006 Social Services installed a track hoist in my bedroom. This can be operated by just one PA and so has made the whole process of employing PAs a lot easier.

Getting food

Many people have asked in the past how I manage with food. We'll start with breakfast: I have diabetes and I found that my blood sugar seems to agree with having breakfast as soon as possible in the morning and therefore spacing my meals out, so as my PAs are around to help I’m pretty spoilt for choice! Some days it’s a bit of a cooked breakfast while on others it’s porridge or fruit and yogurt.

For lunch my PA makes sandwiches or prepares fruit and leaves them in bowls in my easy-to-access desktop fridge. She will also leave any food in the microwave like soup ready for me to put on. My PA does all meal preparation for me whilst she is here in the morning.

Before being diagnosed with diabetes I used to swear by Wiltshire Farm Foods but I became disappointed that even their nutritional range wasn’t that diabetic-friendly. I rely on my PAs a lot to cook food in their home which I heat up in the microwave or I buy cooked meat/frozen vegetables from the supermarket which I heat up in the same way.


This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course. I designed the buttons using Cool Text.