Thursday, December 17, 2015

Not so little things meant a lot

In various conversations today I learned about a few cutbacks that will have received no publicity, but demonstrate the backstreet hacking of key services to people with disabilities that this government assumes no one will notice.

Lancashire Social Services will now only allow 'social workers' (if they aren't an extinct species up here) to do home visit assessments for people with disabilities if they are classed as 'complex care'. Quite how you decide that without having made an assessment escapes me.  The government cuts to local councils have forced this, but local politicians seem unable and unwilling to oppose them.

It's beginning to look like Contact a Family will lose it's government grant.  If you are or have been part of a family with a very disabled child, you'll know this is a major blow.  Not only did they provide mutual support to families, especially with a severe disability, but they maintained the most comprehensive national database of 'unusual' syndromes.  A very small grant enabled a valuable service to be run on a shoestring with much work being done by volunteers - if anything constituted The Big Society, it was this - disabled families helping one another.

On a slightly different tack, there are strong indications that a major Hospital Trust, not a million miles from Preston, is facing some criticism over how it tick boxes the largely discredited Liverpool Care Pathway.  Particularly how it places them (and sends disabled people home to die) on this pathway inappropriately, largely because of their disability, rather than giving them, admittedly expensive, care that would prolong their lives significantly.

These things make me sad.  I'm oddly grateful that my son didn't have to live through this uncaring period.  I miss him dreadfully, but I wouldn't have wished these issues on him, on top of the disabilities he was born with.

Tuesday, December 8, 2015

First they came for the disabled ...

Can't quite believe Kent hospital put a DNR (Do Not Resuscitate) order on Andrew Waters, quoting his learning disabilities as a reason.  http://www.bbc.co.uk/news/health-34938832

And they didn't even consult his family or carers.

It may have been 2011 when this happened.  It's irrelevant that it was not actually implemented or implicated in his actual death.

An apology isn't enough - it needs an enquiry.

I'm not being madly alarmist but this is how the Nazis started.  Their 'Aktion T4' programme of euthanasia of disabled people http://www.historyplace.com/worldwar2/holocaust/h-euthanasia.htm actually came before the other larger parts of the holocaust such as jews, socialists etc..

First they came for the disabled ...    No doctor should be so arrogant as to set up a DNR on a person with learning disabilities without consulting both the person and his family/carers.  I would have thought an MDT (Multi Disciplinary Team) meeting at least would be appropriate.  ...and neither Downs Syndrome nor learning disability are any sort of reason for a DNR.

Rest in Peace Andrew.  My condolences to your family.  (and my admiration for their dignity in not looking for any compensation - you're right, it isn't and shouldn't be about the money - it'a all about the care.)