Without social care investment, people like Annabell Downey will be unable to live fulfilling lives
When you first meet Annabell Downey, it’s clear her personality is as bright as her blue and purple hair.
She stops to chat to every passer-by that walks past her pretty front garden. Her phone buzzes constantly and her love of Mickey Mouse is on full display in her two-bed terrace in Northumberland.
The famous rodent is everywhere – from her shower curtain and bedding to figurines and photos on her mantelpiece. He’s also on the t-shirt Downey is wearing, alongside the words: ‘The fight goes on.’
It’s the only sign of the sadness lurking beneath Downey’s happy demeanour.
Downey has terminal cancer. She also has a learning disability which makes dealing with the bomb-blast of her diagnosis even tougher to understand and deal with. Downey finds it challenging to regulate her emotions, managing her medical conditions (which include diabetes, cataracts and mental health issues), dealing with her finances and reading.
Thankfully, as well as a medical team to support Downey’s needs, she has a tower of strength in her Mencap social care support worker, Cat Bell.
It’s Bell who advocates for her in medical appointments and gives her chemotherapy tablets, who does her housework, helps her get showered and dressed and facilitates a busy social life including art and lunch clubs and shopping trips.
And it’s Bell who is there when the fear of cancer overwhelms Downey and she needs to talk through her feelings.
“Life would be miserable without Cat,” Downey says. “I love her to bits. We have the same personality and she helps me so much.”
Bell, 57, has been a support worker for Mencap for over 10 years and has looked after Downey for around a year.
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She says: “Annabell is an independent, bright, feisty, funny lady. She needs support to live the best possible life and it’s a privilege to help her do that. I have promised to be honest with her, never treat her like she is ‘stupid’, and listen to her.”
Annabell with Mickey Mouse
It’s clear the pair have a great bond, linking arms as they walk along and teasing each other. Bell says some people mistake the duo for friends or sisters, but the boundaries are clear. “If something goes wrong, I am professional in helping Annabell,” Bell says. “My priority is that she always feels safe with me.”
There are plenty of examples of Bell going the extra mile. From dancing around Downey’s lounge dressed as an elf to make her laugh last Christmas to taking her to the beach for sausage and chips when she was feeling low about her cancer.
In February this year, Bell saved Downey’s life when she found her unconscious at home, put her in the recovery position and called an ambulance. She went to hospital with her, updated doctors on her medications and stayed by Downey’s side as she recovered from respiratory failure.
Bell is one of 6,000 Mencap support workers in the UK, going above and beyond to help people with a learning disability to maintain independence and live their best lives.
But worryingly, the social care workforce is declining. There are more than 150,000 vacancies unfilled in social care in the UK, and a third of workers are leaving the sector for good.
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The driving force behind this is low pay caused by government underfunding, which constrains local authorities (and in turn providers) from paying much more than minimum wage for this hugely important role.
Sadly, it’s people with a learning disability and their families who suffer. Recent figures show that in England alone more than 400,000 people are waiting to get the social care assessment.
Downey had to wait more than seven months following her diagnosis to receive increased hours of support – before Bell came on board.
“It makes me so furious and sad,” says Bell. “Here was a lady with a terminal cancer diagnosis, dealing with all the emotions that brings, and with little support to get showered or dressed; all the basic things many of us take for granted.
“I was glad I could make a difference, but Annabell isn’t the only person waiting for social care and suffering because there is not enough money.”
It’s not just people with a learning disability being affected – Mencap research found frontline social care staff are often working long hours to cover the gaps in resource, or struggling to make ends meet.
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Bell says: “Social care is a skilled profession and millions of people rely on it, yet people get paid more money to stack shelves. It’s no surprise so many are leaving the sector, even though the job can be incredibly rewarding.”
Determined that support workers get more recognition, Mencap launched its Why We Care campaign calling for all political parties to commit to more funding for social care (£8.3bn to deliver the improvements needed) and for social care staff to be paid the same as NHS staff doing similar duties.
Mencap also campaigns against health inequalities, calling for people with a learning disability to have a qualified nurse and get more support to understand what is happening at medical appointments and their options.
Downey wonders if she would have had an earlier diagnosis if she hadn’t had her learning disability.
She says: “I’d had back pain for years, but I kept being told it was old age. I wasn’t even 50. I think because I have a learning disability people often think I am being a drama queen.”
Bell adds: “People with a learning disability like Annabell find it hard to articulate the pain they are feeling. They can also face prejudice which reduces their chance of getting a medical diagnosis.”
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Downey was rushed to hospital with agonising back pain on her birthday in December 2022. Scans and tests revealed she had seven tumours in her breast that had metastasised on her spine. Her cancer was incurable. “I cried and cried and felt so scared,” Downey says. Bell came on board in June last year, and another two support workers are now helping Downey.
“When I started working with Annabell she asked what a terminal diagnosis was and I had to explain it,” Bell says. “I said it’s the last stop on the railway line.
“The cancer is never going to be cured or go away but we don’t know how long the railway line is.”
They have also talked about wills and Downey’s funeral.
“When I die, I will have a cardboard coffin with Mickey Mouse painted on it,” Downey says.
“And I’ll get them to play Beautiful Trauma by P!nk.”
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I ask Downey if it upsets her to talk about it.
“I am sad I won’t get to appreciate it,” she says.
Annabell and Cat on a trip to Liverpool
Like anyone in her shoes, Downey has her down days.
“Sometimes in the evening, Annabell will go quiet and say she is feeling flat and is worrying about the future,” Bell says.
“I try not to give advice but I am here to listen. I tell Annabell to talk it out and she often comes up with the answers herself.”
Bell also goes with Downey to medical appointments and helps explain some of the complex terminology so she can make informed decisions about her care.
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Like so many people with a learning disability, Downey has faced discrimination over the years. She says: “People have called me names, talked over me or talked to other people about me.”
Bell says society’s views are changing, with many people with a learning disability working in cafes and supermarkets, but she says there is still a lot of ignorance.
Cat and Annabell with some familiar faces in Liverpool
Thankfully, Downey says where she lives is very inclusive and, with Bell by her side, she is making the most of life.
She’s been on trips to Liverpool and Manchester and has adventures to Blackpool Tower and Chester Zoo on the horizon.
Bell says: “Annabell knows I will always be here for her, laughing, staying positive, talking things through and helping her prepare while giving her companionship and joy. I’ve promised Annabell I’ll stay with her until she dies or I retire, whichever comes first.”
