Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Is it Friday yet?

Is it Friday yet?

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.

And then the fun really began.

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.

Wrong again.

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!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

View Carolyn’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...