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Rachel K.

Rachel K.

59, Reading

Rachel’s mother was 91 when she was assessed as needing NHS continuing healthcare. Rachel only discovered this when she phoned her mother's social worker.

“My mum was increasingly frail and social services arranged care visits, but after about a week she had to go into hospital again. When she came out I thought the arrangement would start again, but it didn’t. A carer turned up from a completely different company. She was covered in tattoos and she smelled strongly of cigarette smoke. My immediate thought was that she wasn’t the type of person I wanted looking after my mother.

Change of plan

I rang the social worker up. She said they had closed Mum’s case and it was now being dealt with by continuing healthcare, which is run by the NHS. I was given their number. I was a bit annoyed because the team that once seemed so efficient hadn’t even bothered to let me know what was happening. There was no discussion about when the new carers would come and what they would do, no consultation and no information really.

Do it yourself

The next time the carer came she told me that she wouldn’t be able to come for the last visits on Tuesdays and Saturdays because she had a second job as a barmaid. But in the end she was mostly amenable. She had too many people to visit, too far apart and when you looked at where she was going, she was doubling back on herself lots of times. Sometimes she was an hour late and by that time I’d done all the tough jobs like washing or bathing my mother and helping her use the commode or toilet. I was torn between resentment and irritation and love and compassion.

The trouble is, the carers are badly paid, often not the best educated people, and they don’t get paid travel time between appointments, so they want to shave a bit off the end of one call to give themselves time to get to the next place. And they’re not trained properly – for example, on how to lift people safely.

Moving in and on

'It is pot luck who you get, but good communication with the agency and the carer is key.'

Eventually I went on sick leave for more than four weeks – I had no option. I stayed at my mother’s house the whole time. I think that the package of care set up by continuing healthcare only worked because of that. But looking after someone is physically draining and emotionally draining, and you need a little bit of respite yourself. Home carers are okay if the client doesn’t need a lot of help; is reasonably mobile and not failing mentally. It is pot luck who you get, but good communication with the agency and the carer is key.

In the end I rang continuing healthcare and asked if the funding could be transferred to a residential home. They said yes, and that I could choose the home if I found one that had vacancies. I was amazed! I thought the home visits were all I could get! There’s no comparison between residential care and the short home visits my mother got.”

[Rachel’s mother moved into a care home. She has since died.]

More information

  • Respite care explains why it’s important to try to take breaks from caring and what respite options are available.
  • Benefits for carers: find out if you are entitled to benefits.
  • Accessing local authority care and support: find out if your relative is eligible for any local authority support.
  • Looking after yourself: we know that as the carer of a relative or friend you're very busy, so we've created a guide with practical advice on how to look after yourself with tips on how make life easier.

Page last reviewed: April 2018