A one-year-old from Burnley who was diagnosed with a brain tumour at just two months old has received a specialist buggy that could support her safely and prevent her condition further deteriorating.
Esmie Butler endured five major surgeries to remove as much of the tumour as possible, spending the first six months of her life in hospital.
She is now waiting for an assessment date to see if she is eligible for a specialist buggy, six months after being referred.
Esmie urgently needed a specialist buggy that could support her safely and comfortably and prevent her condition further deteriorating, which would allow the family to leave the house to go to regular hospital appointments and into the local community.
But as they have no idea how long they will be waiting for an assessment date, her mum Sophie turned to Newlife The Charity for Disabled Children for a specialist buggy through their Emergency Equipment Loan service.
Esmie’s Mum, Sophie Bullas, said: “Without Newlife we’d be stuck. We would really struggle to get out of the house, but now we can easily go to her regular hospital check-ups and she can sit in this loan buggy if we go for a family meal as high seats aren’t supportive enough for her to use.
“Initially, advice we were given was just to prop her up, but that would just lead to further medical issues for her. The buggy from Newlife has extra chest straps which support her and ensure she doesn’t develop a curve in her spine.
“The hospital staff have been absolutely great and are doing their best within the system, but they are very understaffed.
"Luckily, because I work with children who have special educational needs, and because of Esmie’s Occupational Therapist, we had heard of Newlife and were able to get in touch with them to apply for the loan buggy – I don’t know where we’d be without them.
“I don’t know many people that could afford to just pay thousands for a buggy or wheelchair, especially as you need to keep getting new ones as they grow, and that’s just one item that a disabled child might need. It’s a lot of stress to constantly try to sort everything out all the time.”
This has left her and her family struggling to attend hospital appointments until a disabled children’s charity stepped in to help.
Doctors were unable to remove all of Esmie’s tumour, so her future is uncertain, but she is unable to sit up on her own, is still struggling to develop head control and the left side of her body is particularly weak, making a high street buggy completely unsuitable for her to use.
Newlife is the largest charity provider of specialist equipment and support for disabled and terminally ill children and families in the UK.
As well as providing grants for permanent provision, Newlife also provides equipment loans when a child is in urgent need due to a life-threatening, life-limiting condition or terminal illness.
The charity has produced a new report, Fight for Our Future. which reveals waiting times for assessments can take longer than three years in some areas, including the North West, due to a devastating combination of increased need, staff shortages, decreased budgets and a lack of clear government guidance.
A third of local services in the North West have also cut their equipment budgets.
Newlife’s own research with professionals across the UK found that eight in ten professionals say they are concerned by long waits in their areas, and over the last year 60 per cent of professionals have seen assessment wait times grow and nearly half of local statutory services have reduced their equipment budgets.
Sophie doesn’t know how long they will have to wait for Esmie’s assessment and then for the buggy she needs, but she knows that paying for one privately isn’t an option, despite her and partner Connor both working full time.
Stephen Morgan, Newlife’s director of charitable services, said: “Families now face insurmountable challenges when seeking support, from not being sure who to turn to at the point of diagnosis, to navigating a complex system with no clear point of responsibility, as well as a lack of clarity on what equipment can be provided and by who.
“Overwhelming pressure is now being placed on charities which are increasingly needed to plug the gap, at a time when many are struggling to raise funding due to the cost-of-living crisis.
“Even when statutory provision is provided families often find it unsuitable for their children, whether it simply does not suit their needs, or due to a long delay waiting for an assessment meaning their child has now outgrown the equipment, leaving the family having to restart the whole process. In such cases, many families turn to charity provision for the equipment they need.”
Newlife is now calling for the next Government to commit to establishing a dedicated Minister for Disabled Children, who will ACT: Accelerate equipment budgets; Cut assessment waits; and Tackle staff shortages.
Stephen added: “With all equipment needs being met at the right time, the postcode lottery can be ended, and families can avoid the stressful experience of being dependent on self-fundraising or charitable support.
"Disabled children have the right to live a dignified life free from pain.”
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