Colin's story

We arranged some temporary care with the social services and made sure the local council organised care in the home. That was four visits a day, so fundamentally, breakfast, get up, wash, change, lunch time, doing the dinner, then tea time, tea and then the evening one for getting to bed. That was OK until the dementia worsened and then, unfortunately, my father wandered off one day. We found him two streets away with his pyjamas on, which wasn’t good.

In the meantime, he developed some issues and they found out that he’d got terminal liver cancer. And that’s when everything kicked off about his care because we said he can’t possibly live at home now on his own because the dementia is getting worse – and he’s got these other care issues, he’s got liver cancer and chronic obstructive pulmonary disease (COPD) as well.

Complaining about the NHS assessment

The communication between the NHS Primary Care Trust and social services was dreadful, and everybody was blaming each other. My father was assessed five times while he was in hospital and it went positive, negative, positive, negative, positive… and eventually it said he can’t have continual nursing care. It said: ‘This is the decision from the assessment tool.’ We weren’t involved in the loop at all.

So we said, ‘We’re not happy about that situation.’ I went online to get the guidelines for the assessment tool and I printed off all 59 pages and I went through highlighting every area it had missed or where it had fallen short on the guidelines. We had another meeting back at the hospital and the decision was reversed.

Now he’s fully funded he gets 24/7 care, 365 days a year. Social services pay so much and then the rest of it is met by the Primary Care Trust.”