The Library of Lived Experiences was one of the outcomes of Voices4Choices, a project by Cambridgeshire Alliance for Independent Living (CAIL).
The project aimed to provide people who are new to Direct Payments with an understanding of how they work, and how they can change people’s lives, based on personal accounts. It also had a secondary purpose of being a resource for professionals, academics and researchers who want to learn from people’s lived experiences and gain an insight into what is working well, what isn’t, and what could be done better.
Unfortunately, CAIL shut down recently, but we have put up the library on our website here.
The stories have been edited to protect the anonymity of everyone who shared their story with us. Individual’s names have been changed and other personal facts such as dates, addresses and contact information has either been changed or omitted. There have been other small edits to fix basic grammar or sentence structure issues to improve readability.
Other than this, the words in the stories below are entirely those of the people sharing their personal experiences of using Direct Payments.
The stories here have been broken up into four Sections:
- Someone managing Direct Payments for a child.
- Someone managing Direct Payments for an adult.
- Someone managing Direct Payments for themselves.
- Professionals’ experiences with Direct Payments
Library of Lived Experience:
Disclaimer: The views expressed in these stories do not necessarily represent the views of CAIL, Disability Cambridgeshire, or their staff.
Section 1: – Someone managing Direct Payments for a child:
- Michelle’s Story – “We’re moving towards independence. It’s going to be a very slow process but she is moving in the right direction.”
- Heather’s Story – “It gives him time to develop his independence. I think it’s really good in that respect because it opens up that opportunity for him.”
- Alicia’s Story – “Change the direction you’re going in slightly until you’ve found a solution. It gets a bit tiring but you get there in the end.”
- Stephanie’s Story – “I think for us we’re quite a success story in a way that we’ve got exactly what we wanted from it.”
- Nicole & Kevin’s Story – “I think our biggest problem which we haven’t really resolved is actually finding things to spend the money on. Knowing how to use a PA and when.”
- Tara & Jason’s Story – “It’s been nice because it’s integrated into our family so easily because it was done in the right way.”
Section 2: Someone managing Direct Payments for an adult:
- Thomas’s Story – “Know what the rules are, read the rule book, know what the rules are and live within them.”
- Kristin’s Story – “Mum was so stressed, so overworked and so knackered. She just needed somebody to scoop her up and give her the help and support that she needed.”
- Deborah & Melissa’s Story – “We were given our budget and we were just kind of left to work it out. Hopefully it’s a bit different now.”
- Lizzy’s Story – “Broadly speaking it has worked. It’s spent a bigger chunk of time working than it has not working.”
- Heidi’s Story – “Having been let down so badly by carers it’s hard to trust someone and find the right person for her really.”
- Zack & June’s Story – “Whilst I’m letting go of some of the day-to-day management, it’s not creating the opportunity for me to have a better relationship with Zack on a mother-son basis.”
- Julie & Loran’s Story – “Don’t be afraid to speak up if you think they’ve got something wrong because although you might be paranoid, at the end of the day you know yourself best.”
- Catherine’s Story – “When you’re a carer you have a great deal going on in your life. I cannot do without the care”
- Rachel’s Story – “There’s that fear factor that comes from not having a clear idea of how things should be, what the definitions are, what the procedures are.”
- Robin’s Story – “It was my lifesaver. I’ve got no hesitations in recommending them, just get through that initial setting up process.”
- Imogen’s Story – “They then decide if you’re worthy of a visit. However, by then you are two or three months down the line”
Section 3: Someone managing Direct Payments for themselves:
- Kimberly & Brian’s Story – “You took me out of a home, you put me in a flat and now you’ve left me to die!”
- Carolyn’s Story – “I actually know the social workers are gonna cut my Direct Payments when they come in, so I’m off on a defensive start.”
- Zoey’s Story – “There is so much paperwork. I understand that it has to be very thorough but it’s so in-depth. I find that quite difficult.”
- Ethan’s Story – “They got me to sign something in the care home, not explaining what it was. The manager came afterwards, later in the day and told me I was signing to initiate Direct Payments.”
- Scott’s Story – “I’d say go for it! I’d say do it because my it’s certainly made managing my care a lot easier and given me more control.”
- Alan & Janet’s Story – “My friend asked her if she could define ‘Wellbeing’ because that is at the core of the County Council’s new policy on caring for carers and she couldn’t”
- Tammy’s Story – “I decided it was the way to go because the care team I have working with me currently are very good.”
Section 4: Professionals’ experiences with Direct Payments: