Thursday, August 03, 2006

A Tale of Two PCTs

Yesterday (2nd August) this appeared in the Times:

Deaf toddler's parents win NHS battle
Hospital trust refused to pay for boy to have implants in both ears, then
relented after pressure
THE parents of a toddler who has become deaf in both ears were told by NHS
bosses that he could have the hearing restored in one ear, but not in both.
However, after The Times asked North Dorset Primary Care Trust (PCT) to
justify the decision, it relented and agreed to operate on both ears. The trust
denied that the call from The Times had any influence on the decision, which it
says it had been considering carefully for some time.

Later the same day we received a letter from our PCT informing us they were 'not willing to provide funding for a second cochlear implant for Tom'.

We had gone into the Appeal Panel meeting on Tuesday afternoon desperately trying to be hopeful of a positive outcome. We had opted to present our case in person rather than submit a written appeal - having felt the level of helplessness that comes with sitting by a comatose child's bed, the more involved in the process we were the better, however painful it may prove to be.

We practised and honed the presentation, covering what we regarded as all the salient points:

  • the research on bilateral implants published thus far
  • ongoing research reported at International Conferences,
  • pertinent research regarding deafness and education, mental health and work
  • the international perspective
  • exceptional circumstances relating to Tom (bearing in mind he is post-meningitic, under two and had language prior to his deafness)
  • testimony from bilaterally implanted children and their parents

We delivered it with the level of competence you'd hope for from an ex-teacher and a project manager. We even managed to control the waver in our voices when we touched on the more personal, emotive issues.

And, quite frankly, the whole effort was futile.

My dad, who came to drive the keyboard and whose support has been immeasurable throughout, came away thinking we had hope. I had to admire his optimism in the face of such evidence to the contrary. What I assumed, quite wrongly, to be a question and answer session to clarify our case was, in reality, an extended explanation of why they were going to turn us down. My feeling is that the panel had, to varying degrees, made up their minds long before we appeared.

PCTs can't have a blanket policy - there has to be wriggle room where 'exceptional circumstances' allow for independent decisions. Well, there has to be the appearance of it anyway; the pot is only so big as we were told in ever more imaginative ways ('we're not dumb, we understand!!' I wanted to shout) 'you know those other PCTs/countries who believe the research and stuff, well they've got more than we have...'

I tried to explain that, as much as we'd like to, we didn't have the time or the money to move to Scotland, Camden, Barnet, Norway, Iceland, Spain, Austria, Germany....or possibly North Dorset.

They may have smiled ruefully; I don't know, I was on my way out of the door.


Jennifer said...

I'm so sorry :( I wish there were something I could do.

Jason said...

Thanks Jennifer - people's responses have been fantastic and we haven't given up on what we think is best for Tom. Wishing you the best with your assessments.