A few weeks ago I wrote about my tricky appointment with the local continence nurse. I was there to get a prescription for pads to help me manage some of the issues I’ve been having with my bladder. Towards the end of that post, and despite the challenges, I wrote “In the end I got what I needed.” Turns out I spoke too soon – way too soon!

About a week ago I got back from work to find a missed delivery card through my letterbox. The info was confusing but it seemed to suggest that the delivery would be made again the following day. This was great as I was working at the castle that day and the next, so I thought I’d definitely be around when they called. But no sign of them on either day and as it was then the weekend there wasn’t much I could do, so I thought I’d leave it and call them on Monday.

On Monday morning we had an important meeting but we were back at the castle by lunchtime. I was relieved that there were no missed delivery cards and I thought I’d wait till the end of the day to see if the pads turned up.

Today my support worker Jen called to find out where they were. Much to our surprise she was told that I’d been ‘discharged’ and would have to go back to my GP and be re-referred because I’d missed two attempted deliveries.

I was engulfed by a wave of pure desperation. For the last few months I’ve been buying the adult pull up pads I need online, but I was almost out of my supply. Also the thought of going through the continence assessment again filled me with dread because the first had been such an unnecessarily upsetting experience.

To start with I thought I’d just keep buying the pads online, but then I did the maths and worked out it’d cost me roughly £600 a year, so Jen tried to sort it out on the phone again. She was advised to call another number but when she called it she was re-directed back to the initial team who kept saying that I needed to go back to my GP. Jen called my GP who in turn directed her back to the people she’d just spoken to.

The administration team at my GP are looking into this for me and will hopefully be in touch tomorrow with more information on how to resolve my problem.

I appreciate the need for some rules around deliveries, and it’s important that NHS resources should be used efficiently. But discharging me for missing two deliveries seems harsh, especially when the system is complicated and unfamiliar. My clinical need for the pads hasn’t changed simply because I was at work when they first tried to make a delivery.

What worries me most is that there must be many people who are missing out on vital products because of the complexity and rigidity of this system. But it isn’t always like this: my experience of getting catheters has been totally different, with a really simple process that was explained to me thoroughly at the outset.

I’m lucky to have Jen’s support in managing this and I’m sure together we’ll get there in the end. I just hope it’s soon!