Christine Anderson, mother of Christopher who uses a wheelchair, talks about the importance of listening.
I am the mother of Christopher, a 12-year-old full-time wheelchair user. I know of many, many others in my position. And if we had one message for the NHS and wheelchair services in particular it would be: listen to the parents.
The fact is that of necessity we are experts in this field. I’m probably more knowledgeable than any of the technicians I encounter about the services that Christopher requires – I’ve made it my job. I know the different models, how the chair should be set up, the angles, the wheels and all the products. I also know better than anyone what my child needs.
And because the NHS has often been unable to meet those needs, I’m also an expert in fund-raising, grant applications and knowing which charity to approach to raise the money for new equipment. But that’s another story.
For a child like Christopher, who has spina bifida, having the right wheelchair at the right time is his key to independence. It’s the equivalent to his legs. It means not only that he can get around the house unaided, he can be a typical schoolboy.
His wheelchair frees him to be himself and go where he wants to go – and it means that people talk to him like a 12-year-old rather than treating him as a baby.
But equally if the chair is wrong for the individual – too big, too small, too bulky or simply not designed for active use – then you are likely to end up with an angry and frustrated child who simply isn’t able to move around as he or she wishes. It can also lead to health problems.
I am sure some wheelchair services are getting this right. And none set out to make things worse. But some do still tend to believe the individual should fit the wheelchair and not the other way round.
I would like to see every physiotherapist, occupational therapist and wheelchair technician do a wheelchair skills course as part of their ongoing training. In fact it would help if they used a wheelchair themselves to experience more directly what we are talking about.
Carers and users should also be consulted much more closely about all decision-making in this area.
The other thing that would help is greater transparency from the NHS about that decision-making. Stop fobbing us off. If you know that cost is going to be a problem, be open and honest about it. Do the full assessment of need, write the prescription and say clearly what the service can and can’t afford to offer.
I feel strongly about this because recently Christopher was offered a chair that was supposed to be for an active user but wasn’t. Crucially, though, it was much cheaper than the model we wanted. It took us 18 months of battling to get the chair that truly met Christopher’s needs.
If the wheelchair services had said at the start, “We’re really sorry, we can’t afford to deliver these chairs any more but this is what we can offer,” we’d have known where we stood. Then we could have decided to take the NHS offer or accept a voucher towards an alternative. That would have made much more sense.
The other problem with this cost-saving approach is that it’s so short-sighted. If you don’t get the right fit at the start, it will almost certainly affect that person’s health and well-being and that will end up costing the NHS and social care much more.
I know of many parents of children with cerebral palsy who have faced surgery for displaced hips and other postural problems, largely because of inadequacies in their chairs. The costs of those interventions far outweigh the costs of getting the chair right in the first place.
We need a more joined-up approach between all the professionals involved in wheelchair services. Therapists should be an integral part of any clinic – in fact we shouldn’t be offering clinics where they are not part of the service.
It’s also vital that children get their wheelchair at the right age. Many disabled children will need a wheelchair – not a buggy – as early as 18 months if they are not to fall behind their peers. For them it is the equivalent of legs and it’s inspiring to see how they thrive once they have the right equipment.
This is why I’m a fervent supporter of the My Voice, My Wheelchair, My Life campaign, which seeks to bring about real change. I attended the first summit earlier this year and am delighted it has led to this week’s launch of the e-Digest, which is an important starting point. But there is so much more to be done!