Pete's story

My mum was diagnosed with Alzheimer’s. She also suffers from an auto-immune disease and is now, at 93, bedbound with terminal cancer. She was visited by a team of nurses and a social worker to see how they could help her stay living at home. I asked about Continuing Healthcare. I followed this up with emails but got no answer and was passed from person to person. In the end, I let it drop because I was getting nowhere.

She got one, then two visits a day by carers sent by the local council. But they were very poor apart from a couple sent via an agency, who were great. When the council took the agency off their list, I started to pay these carers to visit my mum privately and I stopped the other visits.

Applying for NHS Continuing Healthcare (CHC)

A couple of years later, I applied again for my mum to have CHC, sending my application by recorded delivery. Shortly after, I got a phone call saying they had received it and would be in touch. I didn’t hear anything for two months. I sent a reminder and another two months went by.

Then I wrote saying that if I didn’t hear from them within 48 hours I’d contact the media and my mum’s MP. I got a phone call the next morning saying, ‘Sorry, we don’t know what’s happened.’

After about six months, they visited twice, but the assessment was never completed. I then contacted my mum’s MP. She has been fantastic. It was her that finally got an email saying they were unable to find out why my mum had not been assessed previously. After that I was also contacted by the Clinical Commissioning Groups (CCG). However, the delays and obstruction continued.

Eventually, it did a new needs assessment and Mum was granted help but it would only backdate the payments to my original request date.

Yet when you do try to claim benefits, such as Continuing Healthcare, you have to fight for it.

Making a complaint to the NHS

I contacted the Parliamentary and Health Service Ombudsman about the delays in assessing my mum and my inability to get a response regarding backdating of her claim to the original time of application. They were pretty useless. They ignored my complaints about delays and said that they couldn’t arbitrate on the backdating issue until the CCG had made a final decision. My complaint was that I couldn’t get them to make a final decision!

I think that they were just hoping that I would fade away and wait for my mum to die. That would save them a lot of trouble (and money). Governments over the years have banged on about how millions of pounds in benefits go unclaimed. Yet when you do try to claim benefits, such as Continuing Healthcare, you have to fight for it.”