For many people, the line between what the NHS will help with and what local authorities will do is a blur. That’s certainly what Rita McAllister’s family has found.

“I don’t think you realise what goes on until you are involved in the system,” says Rita’s daughter, Siobhan Madden. Rita, 77, is sitting in her armchair watching the world out of her window. The other side of the glass, the streets of Taunton are set out in a patchwork before them.

Rita has Parkinson’s disease and needs a lot of help. For a long time, she was cared for at home by her family. Siobhan gave up her job to look after Rita for six years, but as Rita’s health deteriorated they needed more help. At first, because of Rita’s very high needs, the NHS paid for her social care under a scheme called Continuing Health Care - the same scheme that eventually provided support for Martine Evans.

The social care provided by the NHS is not means-tested and is only available for those assessed with the highest health needs. But many people don’t realise that. A recent poll for the Local Government Association found that 44% of people questioned believed that the NHS provides adult social care for everyone, not councils, and 28% thought generally social care was free.

When someone does qualify for health-service-funded social care, they often find their budget is more generous than it is when they are supported by their council. Rita’s health seemed to improve with the level of support the NHS was providing and her family believed that because it was working well, it would continue. But a year later in 2017, Rita’s case was reviewed. It was decided she no longer met the criteria for free NHS social care. Even though her family argued that it was the level of support she was getting that had stabilised her condition, NHS funding was withdrawn.

This meant responsibility for her care now fell to Somerset County Council, but it wouldn’t pay for as much support. The family were already doing a lot of care. Now they had to fill in the gaps.

“Obviously Siobhan was getting tired,” Rita’s son Sean says. “It was difficult for me because I was working full time. If I was staying the night I might be up for long periods, and then going straight to work. Over a period of time that becomes quite draining and difficult to manage.”

Siobhan became ill and her mother’s health got worse too. Rita’s pain levels were increasingly hard to manage and eventually she ended up in hospital. From there, she was moved to a nursing home. Once again, the question of who will pay for her care is being discussed. With Rita in a nursing home, the value of her home is now included in the council’s financial calculations. It means she is expected to sell the house she loves.

Georgia Ayling, Rita’s social worker, has got to know the family well over the past few months.

“Rita has very, very strongly said all the way through she doesn’t want to sell her home. It will be a situation she is forced into if funding comes back to the local authority,” says Georgia. “I can’t agree with it, but it is the way it is. There are no allowances for people, because everyone who has social care is in the same situation.”

“They moved into this house in 1964,” says Siobhan standing in the kitchen of her mother’s home. “They were the first people to move in as a council house and eventually they bought it.”

Lined up on top of a cupboard are teapots of all shapes, sizes and patterns. Siobhan and her brother Sean chuckle at the memories of how their Mum would welcome everyone into their home with the offer of a cup of tea and a chat. “Everyone would leave feeling better,” says Sean, smiling.

Rita’s children accept the house may have to be sold, but say it will break their mother’s heart.

It seems like a cop-out to say if you’ve got an illness that is progressive... then you have to fund yourself Sean McAllister (Rita's son)

“It is like being penalised, for being ill and seemingly doing the right thing for your family and buying your property.”

“I appreciate care costs a lot of money,” says Sean, “but Mum did not ask to be where she is. It seems like a cop-out to say if you’ve got an illness that is progressive, that’s not going to get better, then you have to fund yourself.”

The alternative is to once again apply to the NHS for Continuing Health Care funding. Social worker Georgia has been helping the family fill out the forms in what all of them find a complicated process.

A photo of Rita as a young mother A photo of Rita as a young mother

“Rita’s health is very, very complex,” says Georgia. “It’s an expensive package of care, with a lot of care going in because of Rita’s complex needs. I relied very heavily on the Parkinson's nurse to support the risk assessments and to give me the information about the support and care that Rita needed.”

On a cold January day Georgia and Rita’s children arrive at the nursing home to meet a nurse assessor. She will go through a checklist to decide whether Rita’s needs meet their criteria. The meeting lasts a couple of hours. Georgia emerges from it feeling hopeful, but they won’t know the decision for several weeks.

The whole system of what happens when you become this ill is horrendous really Siobhan (Rita's daughter)

“I think that Rita should always have been health-funded,” she says. “But I don’t know, I simply can’t say what the outcome is going to be.” The information gathered by the assessor now goes to a panel which will decide whether or not Rita once again qualifies for NHS-funded care.

Three weeks later, the family receive a letter telling them that the health service will pay for Rita’s care. It’s a relief, but the decision will be reviewed in three months.

“What's going to change really in three months? It's a progressive disease,” says Siobhan as she and her brother sit at the table in the kitchen of their mother’s house. “She's not going to get any better. It's just ridiculous really. The whole system of what happens when you become this ill is horrendous really. It's so long-winded, it's so stressful for the family and for Mum.”

“From what I’ve seen it seems to be a battle,” says Sean. “Health wants social care to pay, social care wants health to pay so you’ve got to go through these assessment processes to determine, is it health need? Is it a social need? We’ve been through that and gone backwards again and gone through it again. Politicians need to realise the impact it does have on extended family.”