Currently we’re working our way through a new quagmire of chaos and paperwork; there seem to be more forms to fill in on a daily basis in order to apply for the support Sam and we all need.
Three years ago we started down the application process for NHS continuing healthcare, as Sam met the criteria we thought it would be a relatively straight forward process to apply, then wait for the answer.
The plan was to apply for funding to cover overnight care for Sam, so that J and I could get some much needed sleep knowing our boy was being cared for and was safe.
OK, so that bit was pretty easy… the decision came back relatively quickly to say that yes, he DID meet the criteria and yes, he was eligible for the funding.
Now don’t get me wrong, while I adore that little chap totally I am not blind to his issues. I know he has very complex medical needs and that his care needs are at the more significant end of the spectrum shall we say.
But never in my wildest dreams did I think that the social care and health care teams would have such an uphill battle to find someone, anyone, prepared to take on the contract.
After many months of searching, advertising and chasing agencies, we were eventually contacted to say there was a care agency who were interested in taking on the contract.
Hurray, we thought.
They came round to the house to meet us and Sam (que me manically cleaning and tidying the place first, I can almost hear the nods of agreement from all the Mums reading this), and said there and then that they were able to meet his needs, and would be in touch in the next few weeks to sort out the details of dates, times etc.
And that, we thought, was that. Sorted.
The next contact we had was many weeks later, when after hearing nothing we contacted the poor woman in charge of the healthcare team; apparently the agency had been in touch with them the day after meeting with us to say they wouldn’t be taking the contract for two reasons; firstly, the road to get to our house wasn’t suitable for their vehicles; its unadopted and had too many potholes.
Secondly there was a power cable lying across the floor that was a trip hazard (my laptop was charging).
She was more than a little bit shocked to hear that the agency hadn’t had the decency to contact us directly.
All this was around 6 months ago, and due to life getting in the way the application has now lapsed. Gah.
Once more Sams lovely social worker has come to the rescue – so now we’re filling in the paperwork, again, to restart the process and this time we’ll be looking into having a personal health budget, to allow us to select who WE feel is right to care for our boy.
For now, if anyone wants me, I shall be hiding in a pillow fort with my boy until the world slows down!
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Does your child still wear nappies? If 'yes' is this to prevent accidents when out of the home environment?