My name is Pam. I have an inherited disabling condition. I was 65 when I had to give up walking altogether.

I have been using Direct Payments for about five years now. My borough gives me a set budget which I use to pay for live-in care workers. However, I still need to 'top up' my care and I am only able to do this because I have an occupational pension.

I pay for additional staff to visit in the morning and evening to help the live-in care workers lift me. This isn't funded by the care package, as I already use up the budget that I have been given, yet it is required due to the regulations on handling people.

Despite the flexibility of my care package, there are still restrictions on my ability to make snap decisions. I can't suddenly decide to eat at a different time, stay out late, or have a lie-in in the morning because of the extra staff coming in. Everything must be planned in advance.

The package was put in place when I was under 65 and I was still under the physical disabilities team, rather than the older people's team. I fear that I wouldn't get the same kind of package if it was decided under the older people's team.

Being able to assess my own needs and support is so important. It means that I can live in my own home. I can employ the people and the agency that I choose. It also means that my package is quite flexible and allows me to do what I want.

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