Tuesday, 9 September 2014

talk

more treatment, more soup. The prospect of porridge, custard and rice pud. It's all gravy as they say.
I have been asked to attend and speak at   a conference being held next week to promote the treatment, which will hopefully bring it some publicity, and move it a step closer to being available on the NHS. Seems like the least I can do.
The first batch of treatment is going to cost us a bit over £3000, but the cost to the NHS of supplying me with my high calorie drinks to inject through my feeding tube is more than £7000! That is without factoring in delivery, time spent with doctors, nurses etc.
We are priveliged to have money squirrelled away to be able to afford this, but surely something that gives hope to people who can't enjoy one of life's great pleasures, eating, should be available to everyone.
Hopefully I can do my bit to make this happen. 

2 comments:

  1. all power to you in these efforts !

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  2. Logic and NHS, not words that always go together. They were happy to supply me with endless free disposable nappies for Lydia but were not prepared to pay for one set of waterproof mattress/duvet covers instead. When necessary I always tried to complain and get things changed, knowing how many families were too worn down by the system to do so. Hope the conference succeeds in making this treatment option better known.

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