Joshua never did master toilet training; We began to make some progress when he was four years old and he used the toilet a couple of times, when there was much celebration. At the time, he loved to blow out candles and so that was his reward if he successfully used the toilet. My Mum even sent him a well done card on one occasion, after we called her to share our good news! Sadly at the same age, epilepsy took hold of him and we had to begin to medicate him as his seizures became much worse, so toileting took a back seat and has never reappeared on the agenda.
When you are incontinent, you are allocated four nappies/pads per day and sufficient to last you three months are delivered to you at home for free. I had a battle with the Continence service several years ago, when they tried to change Joshua’s continence products to cheaper Tena versions, which were not adequate for him and we had a full year of having to try alternative products, to prove that they leaked or were not absorbent enough, before we were allowed to have our usual brand and range. It was a very frustrating time and involved endless meetings and reviews, before eventually they agreed that we could maintain our more expensive products and these have remained unchallenged since that battle was won. However I did have a call last month, warning me that Joshua had been handed over to Adults and they may wish to review his products in due course.
There is an automated telephone number that you ring to activate your order, armed with a unique ID number, so that we are not wasteful and you cannot activate your order any sooner than they have calculated that you should. Around two weeks ago I realised that my stocks were running low and I tried to place an order but it was not accepted as I was too early. So I have been calling this automated phone line for the last week and it kept telling me that his ID number was not recognised. It was only yesterday that I was able to call in office hours to find out what was going on by speaking to a human being. As I was on hold, I suddenly thought that it would probably be an issue created by his 18th birthday.
When I finally got through, the lady explained that his previous ID number had been ” closed down” and he had been allocated a new adult one, and that was why I could not place an order! I asked if I was just supposed to guess that it had changed and what the new digits might be?? I was livid as I had wasted so much time and I was by yesterday on my last products, yet she told me that delivery would not be made until Monday then asked if that was OK. I explained that it was not OK : that I only had one more day’s supply and that I had not been given any new ID number to use. I questioned the logic of a new ID number, explaining that Joshua’s needs had not changed even though he had turned 18 and that he had not been allocated a new NHS number on this anniversary . She was unapologetic and stated that Monday was the earliest that delivery could be made and told me that ” this is just the way that things are done in Adults” . She was unmoved when I told her that I would now need to make an online order and that I would have to pay for next day delivery. I placed that order for a pack of his daytime and a pack of his night-time products, with the next day delivery option, and it came to £30, so this would be a massive expense if I was expected to fund them every month.
With that realisation, I will be grateful now to receive the 3 month delivery next week. But not for the first time, I recognised that the processes around the changeover from Children’s to Adults were poor and I felt that I could do a better job myself.