‘It’s not good enough’: Hastings woman fights for daughter to get a vital wheelchair from Eastbourne
A woman from Hastings has shared her struggles in trying to get her disabled daughter physio and a wheelchair from their Eastbourne supplier.
Seven-year-old Elsie-Rose Nugent, of Park View Road, has scoliosis, a curve of the spine, which means she has to be in a supportive power wheelchair.
As Elsie-Rose is still growing, she cannot have a spinal rod fitted yet due to the regular invasive surgery that would be needed which could put her at risk.
As long as she has a supportive wheelchair, physio, and medication, she is comfortable.
However, according to her mum Natasha Kelly, multiple appointment issues with Eastbourne-based Millbrook Wheelchair Services has left Elsie-Rose in a wheelchair too small for her. Natasha says this, teamed with a lack of physio, means Elsie-Rose is in pain.
Natasha said, “It’s just not good enough. She needs the right support and then she’s fine, but she needs that support. It’s getting worse and she’s very tearful.”
Natasha has kept a logbook of the appointments Elsie-Rose has had. On September 5 2019 she was issued with a manual wheelchair without warning because the power chair she had been promised had been sent somewhere else. This meant Elsie-Rose had to be pushed around, which she was ‘absolutely mortified’ about according to Natasha.
By the end of the month, after ‘lots of chasing’ Natasha said, this had been corrected and she had a power chair.
Natasha said Elsie-Rose still has this chair, and was meant to have an appointment on May 17 this year to discuss getting a new one, but it was pushed back.
Natasha said an appointment doesn’t mean you’ll come away with a wheelchair that same day either, it is a long process and the longer it goes on for, the longer Elsie-Rose is stuck in a painfully small wheelchair.
On top of this, Elsie-Rose is on spinraza – a medication that works to its full potential with weekly/fortnightly physio – but Natasha said she’s been told the resources aren’t there with the NHS and as a result Elsie-Rose only gets physio every few months.
Natasha said, “Children deserve to be treated a lot better, and so do we. We shouldn’t have to fight like this.”
When approached, Millbrook Wheelchair Services said it cannot comment due to confidentiality.
A spokesperson for the service said, “We can assure you that our aim is to enhance the lives of our service users; our occupational therapists work in partnership with colleagues and our service users, their families and carers, to provide the most appropriate solution.”
On the topic of physio Sally Pullen, head of school health and children’s integrated therapies and equipment services, said, “We are very sorry to hear that Ms Kelly is unhappy with the care her daughter Elsie-Rose has received. We are urgently looking into this to see how the situation can be resolved.”
To follow Elsie-Rose’s journey go to: https://www.facebook.com/smatype1/