Team Rory

As mums, we sometimes have to make decisions that perhaps we wouldn’t make, yet with our mum hat on, we have no choice but to make them because they are made with our children’s best interests at heart. Its purely about what is best for them and nothing else!

In order for Rory to go to nursery, he needed a nurse to go with him and be his 1:1. We struggled from day one to get the cover, with no full-time nurse available and conflicting availability meaning often Rory missed out on nursery because there was nobody to go with him. 

I got less and less tolerant of this and in the end, the care company who the NHS commissioned to provide the cover, began sending two of their managers to cover Rorys shifts because they physically didn’t have anyone and they knew that no-cover wasn’t an option. I had given them hell on too many occasions and even on the occasions where they tried to say ‘no cover’ they came full circle and covered it – to get me off their back.

And so….knowing full well that the company sending their managers wasn’t a long term sustainable plan and that in 10 months they had made little gain in recruiting anyone, I looked into other options.

I made a referral to the social care team which went against the grain for me, and I put it to the continuing care panel that I managed the funding myself and employed somebody directly. They agreed.

Rory is much less fragile and much more independent than he once was and considering the level of cover that had been sent for Rory on occasions, I knew there was flexibility. We didn’t need a ‘nurse’ we needed someone that was willing to train up to care for Rory’s tube, but also someone we can trust, someone who won’t let us down, someone willing to go over and above and learn all about Rory’s needs, and invest their time in his world.

Jaime put herself forward and wanted the job so badly that she practically resigned and gave herself the job overnight. She has already spent a session in nursery to see what the job entailed, she has spent an evening at our house training up, learning the in’s and out’s and has asked to borrow the books about Rory’s protocol and signed up to Joanne Jones, working through all of the training already. Her official training is all booked in through July and August and we are even ordering her a Team Rory uniform.

As Rory’s Mum, I have to constantly fight, every single day, for him to have the same things that everyone else takes for granted. I am relieved that we have found someone who can be there every single day, but also someone who has childcare experience, is a great Mum herself and is willing to learn all about Rory’s world, going over and above the role.

We can’t wait to see how this develops for Rory.



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