A depressing account. Coming up to half-time in the Barcelona-Paris St Germain Champions' League quarter final second leg - and I should not have started fiddling with Twitter.
Had I not done so, I would not have linked to the Contact a Family's website, to "Read all about our enquiry service for professionals who work with families with disabled children", nor would I have checked out what they had to say about Conductive Education (nothing), nor would I then have checked out their link to cerebral palsy, the advice they offer, and I would not have found the following:
Most children with CP will have a normal life, jobs and families, but seven per cent are so disabled they require around-the-clock care and assistance with daily tasks, such as feeding and washing.
Sounds great "most .... normal life, jobs and families". But is it true? Can anyone confirm this from actual figures? I'm sure it must be; as no less than a Professor of Paediatric Neurosurgery, Michael Vloeberghs of Nottingham University Hospital, is apparently credited with it.
Looking further down the page, I thought I'd check out what Contact a Family and Professor Vloeberghs has to say about "treatment" and read this:
As CP is a brain injury, there are only treatments for the physical symptoms and at the moment no cure is available for the condition.
What a depressing statement this is! Is it any wonder that parents are left feelong hopeless - without Hope? There's more. The medical profession can offer:
Treatments can consist of oral medication to relieve the muscle tightness, surgery to avoid deformity of joints because of the muscle tightness and injections of botox in selected muscles, which provides relief from spasticity. Severe spasticity can be relieved with an implanted drug pump that injects baclofen (a muscle relaxant and anti-spastic agent) into the spine, with good results for the general care of the child.
Drugs, surgery and implants. And just in case you have any doubt at all that the medical people have got all this sussed, be warned:
There are many unconventional treatment programmes .... None of these treatments are endorsed by healthcare providers and aside from being very expensive they can be dangerous or even fatal.
None of these "treatments" (sic) "are endorsed by healthcare providers" ... "dangerous or even fatal". So if feeling hope-less is not enough, parents should now feel fearful - or even guilty, for looking elsewhere than the "healthcare providers" on whom they are now so dependent.
What if we look beyond the "healthcare providers"? Contact a Family's "enquiry service" has nothing at all, nothing at all, to offer the "professionals who work with families with disabled children" for whom the service is provided, never mind the parents, when it comes to learning development, learning, teaching, and most of all education and upbringing of a child with cerebral palsy.
Why not? Why not? Conductive Education has been available in the UK for years. Contact a Family has been around the block a good few times, too. To purvey such a throughly medical account is no longer acceptable or good enough. No excuse. Hopeless. Depressing. A disservice.
Back to Barcelona.