Northamptonshire couple Michael and Elaine Yates’ lives were changed when Michael had a stroke. Adjusting to their new circumstances remains a challenge, but using a personal budget to pay for Michael’s care has been a positive experience.
Until 2004, Michael Yates was a warehouse worker living with his wife Elaine, their dog William and their two cats in the Northamptonshire town of Rushden.
That April their lives changed when Michael had a stroke at the age of 58, leaving him with a brain injury which has affected his short-term memory and his mobility. He also has epileptic fits.
“Michael’s brain only tells him what he can see; there are no grey areas,” Elaine says. “He can’t cross the road on his own because he can’t judge the traffic and it took me months to teach him how to make a cup of tea because there are so many steps to it”.
For a few years after his stroke, Elaine carried on working to pay their mortgage while Michael attended a daycentre. But Michael wasn’t happy at the centre, and Elaine found it stressful holding down a demanding job in a shoe factory and then caring for Michael in the evenings.
In 2006, Elaine decided to give up her job to care for Michael full-time. She now helps him in every aspect of his life. They see this as a turning point in both their lives.
Michael started attending a new workshop twice a week. Called ‘TOOLS for self-reliance’, the Northampton-based scheme sees volunteers clean old tools, which are then sent out to developing countries. Michael really enjoys TOOLS, and through it, he and Elaine met other people living with brain injuries. They realised they weren’t alone.
Michael initially received direct payments for his care. He in effect became Elaine’s employer. She would send a timesheet of the hours she had worked to an agency working for the County Council. They would then send her a pay slip, just as when she was working in the factory.
In July 2008 they received a letter from Northamptonshire County Council telling them about a pilot scheme for personal budgets. At first, Elaine was cautious.
“I was frightened, no one likes changes”, she says.
But the direct payments system did have certain restrictions that Elaine found difficult to manage. For example, Elaine couldn’t pay an unregistered person to look after Michael if she needed to pop out.
“If the doctor came and left a prescription,” she says. “I couldn’t use the money to pay someone to sit with Michael while I went to fetch the prescription”.
Elaine and Michael decided to discuss the personal budget option with their care manager at the County Council. He explained more about how personal budgets work, and re-assured them that they would have help in making decisions about Michael’s care. They decided to give the personal budget system a try.
Elaine says the system suits them because it is more flexible than direct payments and allows greater control of their own budget. It also enables them to identify and list exactly what Michael’s needs are and how they can be met.
“There was so much that wasn’t written into a direct payment, it was just to pay for his care,” Elaine says. “Whereas the personal budget is about him, it’s about his life, what he wants to achieve in his life and what he needs to achieve that life”.
The personal budget does more than ensure that Michael can access the care services he needs. Having control of the money means he and Elaine can include treats which Michael would like, such as visiting wildlife parks or organising a trip on a steam train, and they work with their support planner to include activities such as these in Michael’s personal budget. They can also plan for more fundamental wishes, such as Michael’s desire to die at home.
Elaine is now a citizen leader for Northamptonshire council, talking to others about changing over to a personal budget. When she meets other service users, carers or personal assistants, she finds people are often worried about moving to a personal budget. They fear that they will have money taken away, or that someone will start telling them how to spend their money.
She advises them not to be frightened by personal budgets, and suggests that they look into it as it could improve their situation and everyday life.