I have been fighting battles for my son James since he was born 19 years ago.

Those battles take place on all fronts, because he has multiple disabilities. But the health service is the one I now find the most difficult to deal with. 

I don't mean the critical care James has had during operations to straighten his legs; that was fantastic. But the outpatient services you need if you can't walk or talk and have Autistic Spectrum Disorder (ASD); services such as physiotherapy, clinical psychology, orthotics. 

The NHS is an enormous bureaucracy, and dealing with different parts of it can feel like walking through an endless forest full of fog.

James's needs

One of the biggest challenges we face is to ensure that James has a working wheelchair. He is taller then me and weighs 80 kilograms. Without a wheelchair he is virtually stranded in bed. 

He has a powered chair which he drives himself and that chair is both his legs and his voice. If he is feeling overwhelmed in a crowded room he can just drive out of the door. There is an override control on the back which a carer can use to keep him out of danger, but we are deeply respectful of his independence.

James does give the chair quite a bashing; he bites lumps out of the head rest and, when he is excited, bucks in his seat like a rodeo cowboy. However, it's not his fault and he does not deserve to wait for weeks for the chair to be repaired when it stops working, which used to be often.

One recurrent problem we had was that his joystick broke, so only the carer could control the chair.

Get involved

Mencap’s first ever Activism Week is from 15 to 21 October 2018.

We’re calling on campaigners to take action, demanding change in their local hospital, as well as celebrating the brilliant health campaigners who are making a difference around the country.

Find out more and how you can get involved!

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Making a complaint

The first time I complained about this I didn't know where to start. The wheelchair services helpline was constantly engaged. So, I wrote to the Chair of the local NHS Foundation Trust. 

The Chair passed my letter to the head of nursing and midwifery, who replied that it might be better if James's joystick was removed and the carer steered the chair from behind. That way James's controller wouldn't get damaged.

There was a warning that we may have to pay for any further repairs to the chair. 

The pain and outrage I felt on getting this reply was all too familiar; there seemed little understanding of James's needs, just a focus on the budget.

Reaching a solution

I decided I must talk to the people who actually did the repairs. I found the name of the head of the wheelchair service in some NHS minutes. I took a guess at his email address and it paid off.

We ended up corresponding, and in the end James got a brand new bespoke chair with his own joystick housed in a cast iron box.

Top tips for campaigning

I would summarise my top tips for campaigning as "the three Ps"; persistence, politeness and proof.

Persistence

The most important quality; never give up.

Politeness

Don't give people an excuse to ignore you, which they may do if you are aggressive or rude.

Proof

Always put your communications in writing and keep copies. Members of staff leave over time, but you'll always been there with the evidence.

Treat me well: Jane's story

Hear from Jane, whose son James has a learning disability, on why she thinks it is essential that senior medical staff should have mandatory disability awareness training.
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Treat me well: Jane's story

Hear from Jane about her experiences with taking her son James to hospital, and her thoughts around disabled people having the right to ask for reasonable adjustments 
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Activism Week 2018

Find out about Mencap's first Activism Week, which took place from 15 to 21 October 2018.
Read more