A dad has told of his fight to get the required care for his disabled daughter with additional needs. Darren Bailey, from Irlam, is the father of 12-year-old Freya, who was born with two holes in her heart and has cerebral palsy and epilepsy.
To ease the pain of her incurable condition, she has to have multiple physiotherapy sessions a week - which is not available on the NHS - costing almost £1,000 per month. Darren, 50, is also constantly having to fork out to upgrade specialist equipment as she grows and her needs change, recently spending £3,000 on an off-road buggy so they can go for country walks.
But while he is having to deal with the rising cost of bills, amid the cost of living crisis, on top of additional costs for his little girl, from the start of the year up until recently, he says he has had to "battle" with local authorities to get a new assessment of the care Freya needs.
She previously received 15 hours of social services care while her time was split between her parents' homes, however, due to a change in circumstance and through mutual agreement by both parents, Freya now resides with her single dad the majority of the time. But Darren says Salford City Council “refused” to carry out a new assessment despite their situation changing.
He has had to be on and off from work with his job at United Utilities as a water engineer in order to look after Freya. After what he says has taken months of calls and emails, he has been granted 63 hours of care for his daughter, and is now getting back into his usual working routine of 12-hour shifts.
“It’s disgusting the support that these families [with additional needs] aren’t getting. We can blame Covid for so long, but no one is picking up the phone for these families that are desperate for help," Darren said.
“It’s taken from January to about April to get the hours of support for a personal assistant to come and help me with Freya while I get back to work because my job was at risk. United Utilities have been great and very understanding, but there’s only so much they can do.”
On being granted 63 hours of care, Darren said: “That sounds all well and good, but they don’t provide the carer, you have to go and find the carer that you trust to come into your house as well. I’m lucky that Freya has a following through the fundraising work I’ve done - people are aware of her and we’ve had people volunteer to come and look after her.
“But these people have other jobs as well. It’s a job in itself to arrange the carers to come in. I’m a very positive and proactive person but the last year has tested me… I’m proud of myself.
Darren's parents volunteer to help, but with them being elderly it's not a solution. He has sought help from the MP for Worsley and Eccles South, Barbara Keeley, who he says got in touch with social services to address the issue. “If I was a disabled person myself, an adult, I would have walked away, and said ‘forget it’, but it’s my daughter and I couldn’t let it go," Darren said.
"She's made me a better person and I was never as outspoken as I am now, but I am her voice, I have got to fight and battle for her to get her the things she needs."
Darren has been fundraising for Freya since 2016, when he needed to gain funds for an operation which helped ease her pain. With the help of a friend, he came up with Scooter Grannies - where he and six of his mates dress up as grannies and descend on a journey across the North West on scooters.
Today, Saturday June 25, they will be travelling from Preston FC to Blackpool Town Centre. The funds raised are vital for Freya’s ongoing physio, which helps to keep her mobile and means she can continue to ride her adapted bike and enjoy swimming.
It’s a lifeline treatment that was stopped during the coronavirus lockdowns; at a time when Darren was also unable to fundraise. And over the years, Darren has seen the price per session increase.
“It’s gone up in cost and probably will again. It started off at £74, £86, £96, another increase is due again,” he said. “We’ve struggled with bills like every other family, of course we have.
“Having a child like Freya, you’ve got additional costs on top. We need an acknowledgement that these costs are going up.
“These families with additional needs, it’s in the name itself, they need additional payments. It’s self-explanatory. But it’s ‘out of sight out of mind.’
“There aren’t enough people shouting so they’ll be ignored.” Darren, who has already remortgaged his house to be able to spend £84,000 on adapting their home for his daughter, is hoping some of the fundraising costs can also contribute to improving Freya’s independence with an electric wheelchair - which can set him back anything from £12,000 to £20,000.
During the journey on scooters, the riders will also shake collection tins, usually raising a few hundred pounds that they will donate to another local child in need. Darren said: “As ever I’m grateful to all my loyal mates who take part in Scooter Grannies every year, as well as the local businesses and individuals who donate money to help Freya.
“The funds raised continue to provide physiotherapy and essential equipment for Freya to make life as comfortable and pain-free as possible. There is no cure for cerebral palsy, no magic wand, just a family’s resilience against the odds”.
Gill Gibb, CEO of Tree of Hope said: ‘We’re delighted to be helping with Freya’s fundraising and Scooter Grannies is certainly an innovative event! We wish Darren all the best with it.’ To donate to Freya’s fund, visit https://www.treeofhope.org.uk/freyaslittlelegs/
Commenting on the case of care for Freya and support for Darren Bailey, Barbara Keeley MP, Member of Parliament for Worsley and Eccles South, said: “I have been working with Darren Bailey to help ensure that he has the social care support that he needs at home to care for his daughter, Freya.
"I am always happy to help and support constituents with needs for care and I am really pleased that Salford City Council has agreed a good package of support for Freya. However, I know that funding is very tight and many people cannot be helped with the care they need.
“For over 10 years the Conservative Government has consistently and repeatedly cut funding to Salford City Council and underfunded social care nationally. The direct result of this is that constituents like Darren and Freya have been let down by this Government, which does not take social care seriously or fund it adequately.
“I hear from many people in Salford and across the country who are struggling to arrange social care for friends and family who need it. Unfortunately I know that it will not be possible to help in each case until the Government gives local authorities the resources to fund social care properly. People are being short-changed by this Government. We need a better national settlement for social care which improves access to care for people who need it."
What Salford City Council says
A council spokesperson said: “We cannot comment on individual cases but the council works hard to ensure children with additional or complex needs and their carers are supported. The council works to national guidance and follows set processes as we are required to do in determining care packages.
"Our staff continued all statutory meetings and our Parent Forum (which feeds back on service improvements) during the pandemic and continues to do so, using a mixture of face-to-face and online meetings. We are always available to discuss any concerns or complaints.
“Children’s care is kept under constant review to ensure it meets their current needs and, following any changes in personal circumstances, families are given or can apply for a reassessment. Social workers then work with the carer to consider existing support, what is needed going forward and how that meets the needs of the child and the carer.
"Support can come from family, friends, services and the community. This has to be supported with documented information to allow the Disability Resource Panel, which meets monthly, to consider the request and make a fully informed decision on the appropriate care package and personal budget to fund that package.
"Carers have the right to appeal a decision. Once a care package is approved it may take time to set up – for example recruiting and starting a personal assistant or finding a service provider. Carers are supported throughout the whole process.”
What DWP says
A Department for Work and Pensions spokesperson said: “We know that living with a long-term illness or disability can impact on living costs, which is why financial support is available to those with disabilities or caring responsibilities and we urge people to check they are getting all the help to which they are entitled.
“Eight million low income households will get at least £1,200 of direct payments this year, with a £150 top-up payment for disabled people. And for those who need further support, our £500 million Household Support Fund is there to help with the cost of everyday essentials.”
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