Help for people affected by dementia when appealing against a decision about NHS continuing healthcare

NHS continuing healthcare (CHC) is a package of care that’s arranged and funded by the NHS. It’s notoriously difficult to obtain – you need to persuade your local NHS that most of a person’s needs are for ‘health care’ rather than ‘social care’. 

If you’re one of the many people affected by dementia who are turned down, then the Society’s CHC Appeals Support Service may be able to help. 

The volunteers who provide this service come with their own experiences of appealing against a decision not to provide CHC, whether as professionals or family members.

They understand how tough the process is at a highly stressful time. 

Exhausting 

Judith, one of our volunteers, fought to gain CHC for her mother.

‘It’s so hard because you’re worrying about your relative, their diagnosis and how you’ll manage,’ she explains. 

‘At the back of your mind is, “Will I have to sell the property? Are we going to run out of money?” Dealing with rejection and then appealing at the same time is exhausting.’ 

David, battling for payments for his wife, Penny, agrees. 

‘My GP persuaded me to appeal, but It’s hard to do this at a time my wife’s unable to talk to me, not able to move without a hoist. 

‘The application was stressful and upsetting. Even if you get funding, they can remove it and that hangs over you.’ 

Need to push 

Through the service, Tony – a retired geriatric consultant – was on hand to help David. 

David says, ‘In the end, my file of evidence was four inches thick. I recorded everything: hospital visits, falls, care plans, nursing home notes and doctors’ notes. 

‘We were awarded £115,000, but I needed the push to achieve this.’ 

Michael broke his hip in a nursing home that failed to diagnose it for months. His wife Margaret moved him but, after a while, the CHC withdrew funding for the new home, and she lost her appeal. Despite this, she has no regrets. 

‘The CHC started taking notice after I sent one of my volunteer Andrew’s strongly-worded letters. I thought, “This is how you’ve got to be.” 

‘I don’t feel I let Michael down. Appeals are extremely hard, and I learnt an awful lot from Andrew.’

Doing all you can 

As Margaret suggests, success can mean accepting you have done all you can for your loved one, just as much as it can mean a financial decision in your favour. 

‘People can accept losing an appeal if they feel they’ve been heard,’ explains Mary, the service’s co-ordinator. 

‘It’s knowing you have done everything you can for the person you love. That’s as positive an outcome as being awarded the money.’ 

Of course, the volunteers’ support also helps people to win their appeals. 

Bill says his volunteer Sara knew how to check for records at care homes and with social services. 

‘We won a battle royale with the authorities, only because we had these documents. 

‘This was a matter of principal. I was fighting for my wife and at the very last minute, they said, “Yes, you’re right.”’ 

Huge importance 

There are many reasons why people step forward to join the team. The decisions being made are of huge importance, potentially affecting where someone can live, says retired psychiatric nurse Tim. 

‘The threshold for gaining continuing healthcare is getting higher and higher. I want people to know they’ve spoken up for their loved one.’ 

Others know they have the capacity to analyse a lot of information while remaining empathetic, having experienced appeals for their own family. 

‘I’m an only child,’ says Judith, ‘So I had nobody to share the responsibility with. When I heard about the volunteering I thought, “I can be somebody to bounce an idea off.”’ 

Volunteers generally talk about ‘making a difference’, including retired NHS worker Sara. 

‘I can gently guide my clients to understand their appeal won’t be successful, while ensuring their voices are heard,’ she says. 

‘But sometimes we receive the funding. Then I feel satisfaction that their loved one has the proper care they need.’ 

Strength and focus 

The service came into being into 2016 because of clear and increasing demand from people contacting Alzheimer’s Society. 

When asked what message they most wanted to share with others who are considering making an appeal, the responses show just how varied people’s experiences are. 

‘I used to be paranoid about public speaking,’ says Margaret. ‘Now I know how to speak out. I think the fact that I was doing this for my husband made me stronger.’ 

Judith adds, ‘CHC is an arbitrary system. If you don’t get the result you want, this isn’t a failure. Sometimes you need to stop the appeals and focus on yourself and your loved one. 

‘Rather than spending your life filling out forms, take them to a garden centre and buy them a coffee and cake.’