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young man with down's syndrome looking at a book in library with female carer

Free to choose care

Looking after a loved one who needs care can take up a huge amount of time and effort, leaving little space for the carer’s own needs. However, help is at hand.

To add some flexibility and choice back into carers’ lives, an Ealing Council initiative offers an alternative way of arranging support.

The council’s direct payments scheme gives money directly to local people to pay for their agreed care needs, rather than organising it for them. This enables them to choose personalised care for their needs, rather than being reliant on the services the council offers.

Hanwell resident Dania receives a direct payment from Ealing Council via a managed account company to help look after her son Filippo. “Direct payments put me in control,” she told us. “I can choose his carers and manage their timetable to guarantee my son has the best support. Our quality of life is much better now.”

Filippo’s story

28-year-old Filippo has Down’s Syndrome and lives with a series of health conditions, including heart problems, low blood oxygenation, and underactive thyroids.

“He needs someone with him all the time”, said Dania.”

However, thanks to direct payments, Filippo now receives regular support every week from a carer.

Dania added: “Filippo needs to do a lot of exercise to manage his conditions, so his carer takes him to activities, or stays at home with him when he doesn’t feel well.

“I’m so happy with the way his care works now – the direct payment has made a massive difference to our lives. I don’t have to deal with money or payroll or reports – the company takes care of every single step.

“Knowing my son has a companion during the days means I don’t have to worry about his safety. It also gives me time to look after myself. And for him, it means he doesn’t have to be treated as mum’s little boy all the time. Having different people around makes his life happier.”

Wirood’s story

Frank, 75, gets a direct payment to help care for his wife Wirood, 72. The couple live in Ealing.

Frank explained that Wirood was diagnosed with Alzheimers in 2015. “To start with, it was manageable – she was just forgetful – but it has gotten worse over time,” he said. “She once left a pressure cooker on the stove with no water in it, and it blew up. We took her off household duties after that! She’s now lost the ability to speak, and her walking is limited.

He was helped through the process by the council, which ran a thorough financial assessment for the couple first to make sure that direct payments could meet their needs. “Our contact in Ealing social services helped a lot – she simplified the process for me. With her support, we employed an amazing lady called Armenoohi, who has previous experience of working with an Alzheimers patient. She’s been with us for 2 and a half years now and I hope she’ll be with us for much longer. She understands the need for a routine – we have to run a very right regime with Wirood’s diet, to minimise any tummy upsets or illnesses.

Direct payments have offered Frank the flexible, reliable help he needs to continue looking after Wirood at home. “With medication we can get Wirood to sleep, but it’s hit and miss,” he added. “She wakes up a lot in the night, which can be very draining. Because Armenoohi can be relied on to be with us at 9.30am, I know I’ll be able to go back to bed if I need to catch up with sleep.”

Frank says the biggest benefit is that he can plan his days in advance, safe in the knowledge that his wife is in safe hands if he goes out. “Having someone you trust is so important. We tried using agencies to provide care, but it meant it was hard to stick to the routine set by her neurologist – food, waking, etc – as different carers would come each day. I would have to stay at home in case there was a problem.”

Carers’ coffee morning

Every Tuesday morning, carers can get together in Acton to meet other carers, share challenges and solutions, and enjoy some time for yourself in a social environment.

Over a cup of tea and a biscuit, you can relax and hear from other carers about their experiences.

The sessions are free to attend and there is no need to book – just show up on the day at Sycamore Lodge, Acton, W3 8PH between 11.30am-1.30pm. Email info@ealingcarers.org.uk for more information.

‘Family carers are unsung heroes’

Councillor Josh Blacker is Ealing Council’s lead member for healthy lives. He said: “Family carers and others who provide support to loved ones are unsung heroes, often doing so in an unpaid, voluntary capacity while trying to remain in work and deliver on other family needs.

“Direct payments can help take the pressure off. For cared-for people and their loved ones, the payments offer real flexibility and peace of mind.”

Find out more

If you or a loved one has care needs, the council’s social care advice and referral team can help you find the best options to enable you to stay independent. Contact them on 020 8825 8000 or sscallcentre@ealing.gov.uk

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