Frustrated by inconsistent and impersonal agency care, Cath Severn decided to apply for a personal health budget for her aunt Doreen, who has advanced Alzheimer’s disease.
Here she talks about the experience – from the red tape difficulties and delays through to today and her hand-picked team of seven carers.
“The day I found out that we could have a personalised budget I felt like I’d won the Lottery,” says Cath Severn from her aunt’s home in south Manchester.
“I spent 18 months battling a system to show that this was the right way to care for my relative. It was hard work, but I know this is the right way to look after Doreen when I see her at home and happy.”
Today Doreen, who is 84, is sitting in her favourite chair with two of her care team with her. Although she seems far away in her own world, she occasionally laughs and joins in the conversation, or squeezes the hand of Shirley, one of her carers.
“You can tell that she is happy because of how she’s acting,” explains Cath. That’s because she knows all the carers –and just as importantly they know her.”
When recruiting the care team Cath was clear on the essentials. They had to be kind, compassionate and get to know the Doreen of today –and how she used to be.
Each carer was interviewed and told about Doreen’s past. She had been happily married for 41 years to Harold, who died two years ago. She used to be a hairdresser, loved clothes and nail varnish and liked nothing better than going to shop for the latest fashions.
All those details may not seem immediately important –but for Cath they give Doreen a dignity and history that could otherwise go unnoticed.
“Each carer knows what Doreen likes and dislikes and they all keep a detailed record from the day of what she enjoys or doesn’t enjoy.
“Little things like knowing the colours she likes, doing her hair, painting her nails and giving her the meals that she enjoys all help with her condition. Plus, we make sure that we have two of the care team here on some afternoons so that we can take Doreen on outings.”
Recent trips have included going to Blackpool – which used to be a favourite haunt for Doreen and Harold. She has also been to Chester zoo and goes regularly to garden centres for tea and cake.
Cath is sure that the ongoing personal care has helped to not only slow down the effects of Doreen’s illness, but also to keep her out of hospital.
“People reading this piece might say it must cost a fortune to have a whole team of carers for one person,” says Cath. “But, it also saves the health system money because Doreen doesn’t need repeat hospital care after falls or a dramatic change in her condition.
“I’m convinced that if she was in a care home she would need far more hospital treatment and she wouldn’t be anywhere near as happy.”
Shirley, one of the care team, who used to work in a nursing home, also sees this from another holistic angle.
“It’s great for us to get the time to see the effects of our work with Doreen. You don’t get to develop such a personal bond in a nursing home setting.
“Last year we used to have Doreen up and dancing in the lounge because she loves music. She can’t do that now, but she loves the bright lights we put on for her and her enjoyment shows. She’ll often give us kisses and cuddles.”
However, not all the care is easy or with idyllic results. Doreen’s condition means that she can be unpredictable and her behaviour can be difficult to manage.
Shirley continues. “It’s so much easier to deal with an issue if you are part of a team you trust and know –and also if you have a good understanding of your patient.”
Cath agrees and says these were all reasons again for wanting to move from agency carers to having a hand-picked team operating from Doreen’s house.
“I got so tired of people not keeping appointments or just rushing from one patient to another,” she says. “It didn’t add to a stable environment and just made the hard things even harder.”
Now that she has the right team in place –with a clear back-up plan for holidays or illness – she feels like she can relax.
“Taking on the system was daunting,” she says. You have to be very direct and clear and not give up on what you think. I’d tell anyone else who thinks that a personal health budget is the right choice, to stay strong and persevere with their wishes.”
In fact, the experience has had such a dramatic effect on Cath that she is now starting to work as a personal budget adviser for other people who may be in a similar situation.
“I give them help on how to use the funding for the best care options, which gives me a great sense of satisfaction,” she says.
“Ideally I want everyone to have the best, personal results like Doreen. It may sound morose, but in my situation I need to know that if I died tomorrow there would be continuity of care for my loved one.
“Other people in caring roles need to know that too. We need to know that the person we love will be safe, happy and protected. Only then can we relax and appreciate the results that human kindness can bring. When I see those moments when Doreen is back with us and happy to be here it makes everything worthwhile.”