What time do you go to bed?
Jennifer Pearl talks about her experiences with care agencies and the care system that means she has to go to bed at 8pm every night.
I have a spinal tumour and as a result need help with my personal care. The funding for my care is from the Clinical Commissioning Group. I decided at the beginning not to go for a Personal Health Budget but to get a managed package. The nurse from the team identified an agency that she knew was good. She suggested I try them and said if I wasn’t happy I could go elsewhere.
When the agency came to do my assessment, they had no problem in doing what I needed for my morning call at the time I wanted. But for the evening call they said the latest call was 8pm, which would mean going to bed early every night. I reluctantly accepted this. Prior to using the agency my husband had helped me in the evening. I phoned round locally to see if there were any other options and also spoke to an Inspector from CQC who I knew through my work as an Expert by Experience; he said that most agencies worked in that way.
If I need to get up extra early for work or a hospital appointment there is no problem in arranging that, but the evenings don’t work so well as I can’t be spontaneous about bedtime. We have to eat earlier than we did before. It means that if we go out in the evening my husband has to help me to get into bed.
Interestingly when we’ve been on holiday in the Peak District and in the Bognor Regis area I have found agencies that were able to do later calls in the evening and paid their carers more. One was an agency run by an Independent Living Centre. This gave me much more flexibility - it is a shame that they are not locally based. They also paid the carers more and gave them an option to be on a monthly contract.
After speaking to a fellow NCAG member (National Co Production Advisory Group) and hearing her ideas, it made me think that at some point I will continue to use the care agency but may try to recruit some PAs from the local University where Health and Social Care courses might cover my bedtime routine. This would I hope give me the flexibility that I need.
The system for care staff is not ideal. Often, they start at 7am with their first client and the last call may be me at 8pm. This is a very long day at work. They will probably get two to four hours off during the day. Many of the carers choose to work six days a week to earn enough money for themselves. They are all on a zero hours contract and don’t get paid for travel time. I would like them to earn enough money working a 36 hour week, and to have their travel time paid.
I was recently interviewed for the BBC news and subsequently filmed to illustrate the issues with my choice of what time I get into bed. I hope my experience may raise awareness of the issues that people who draw on care and support face even in their daily lives.