Health

Brexit is why my 14-year-old child can’t get her wheelchair. This can’t be what people voted for


Dan and his daughter Emily (Picture: Dan White)

It was last September, in the midst of the pandemic, that my tenacious, confident disabled daughter Emily had an urgent scoliosis operation on her back.

Scoliosis is the curvature of the spine, it can affect the entire skeletal and nervous system​ if untreated.

As a family, we had no option other than surgery that would see titanium rods threaded around her spine and bolted in place in the hope the curve could be straightened.

The procedure was emotional but successful and upon discharge from the hospital, the surgeon had one request: that we urgently get Emily a new wheelchair that will keep her back straight to aid recovery.

Emily picked her new chair from our local NHS wheelchair service and we were assured that its delivery would be a priority because of her surgical need – the ETA was four weeks.

Parents with a disabled child know the rigmarole of sourcing wheelchairs. It’s a long and stressful process that can cost up to £10,000 when done privately, depending on the severity of the disability.

The cost to families is unfair, considering many parents are active carers who cannot work due to their dual parenting and care duties. Wheelchairs, like medication and other disability aids, are essentials, but if not available through the NHS, horrifically expensive.

In the past, we have used a donation to purchase a wheelchair. But right now charities are financially strained because of the pandemic, meaning the opportunity of a grant has shrunk.

Weeks passed and no news came of Emily’s new wheels. Calls to the supplier went unanswered.

Five months after surgery, Emily was looking increasingly uncomfortable in her old chair. She began to complain of intense pain down her side, increasing until she was either on painkillers or in tears.

Her once-straightened posture was slowly unravelling as bone and muscle pulled and spasmed and we could only watch while desperate for a response from the wheelchair supplier.

She needed this chair now.

Finally, we got a call early one morning. An apologetic wheelchair engineer told us everything was in place apart from some essential parts that had still not arrived from Germany. The reason he gave for the delay? Brexit.

Red tape from the introduction of new rules governing Britain’s trade with the EU have been responsible for vehicle holdups at both sides of the Channel. Amongst those trucks are the components Emily so desperately needs.

When I heard of the reasons for the delay, I was stuck halfway between disbelief and tears.

They say 17.4million people knew what they voted for in the referendum, but I couldn’t believe that so many people knew they were voting to impede the health and wellbeing of their fellow disabled citizens, including my 14-year-old child. And if they did then I’m utterly revolted.

When I broke this story on Twitter, I was besieged with hundreds of stories from the disabled community coming forward with similar experiences.

With everything from prosthetic limbs to whole powerchairs being held up, the repercussion of this pointless sovereignty exercise will be that the disabled community will suffer long-term health issues. Why? Because fish seemed to be of higher importance than disabled children.

Yes, I am damn angry.

Is there a way around this? Yes, there is.

Drugs for epileptic children have also been caught up in this red tape web, so the Government, obviously realising the implications of their inaction far too late, has offered a six-month reprieve from Brexit rules to stop supplies from being delayed. This allows essential Bedrolite oil from the Netherlands to arrive unimpeded and save the lives of many children with epilepsy.

If they can do this, then why not open up supply links for the items that other disabled children desperately need?

The Government record on disability care is already horrendous. For instance, a 2016 UN report found that UK welfare reforms amounted to violating the human rights of disabled people in several ways – from not taking into account the support disabled people need to work, to the way the community was being negatively portrayed as benefit dependents.

Without urgent action, the Government’s neglect of those living with disabilities will turn into a humanitarian crisis.

Without a new wheelchair, Emily’s back will continue to deteriorate. Months of intense physiotherapy will unravel as her corrected spine attempts to shift back to a curve and cause her more and more pain. For a child with already complex health needs, this is unacceptable. It’s unfair.

Emily is heartbroken and the terror of her operation coming undone has pushed her mental health to breaking point.

Her confidence is gone.

I’m her dad, I’m supposed to be her protector, to make her better, to give her the promise of a better tomorrow, and because of politics and paperwork I can’t do that. Instead, I’m watching her in pain between the laughs and the tears.

Has Great Britain’s ideology really led to this? Supposed sovereignty over health and wellbeing?

Britain is in a state of flux and it needs to prioritise people’s health over its passport colours before the casualties line up – casualties starting with my beloved and beautiful child.

The Government needs to engage with the EU on a humanitarian level and also engage with the disabled community, bringing them to the negotiating table.

We are sadly used to being ignored. Let’s hope, through telling our stories, things will change.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk

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