It had been one of those months where my anxiety was at 100%, when I found that my usual prescription for stoma products was unexpectedly declined. A week after putting my order in like I always do, I received a phone call from my GP. They told me that my prescription had been refused, but they didn’t know why—all they could suggest was that I contact my stoma care nurse.

Asking why

First, I frantically searched online for why this could be. After sharing my concerns on online stoma forums, I soon found that many people seemed to be having the same issue. Some users assumed that their home delivery services were refusing to send out certain products—this was not the case. Looking into the things further, I found out that these restrictions were not caused by the home delivery services, and there was little that companies could do about them.

The restrictions were instead the result of formularies, which are cost-saving measures put in place by the NHS. I figured out that these formularies must have hit my hospital’s stoma care department.

There was only one thing I could do, so I called my stoma care nurse, who confirmed that my order would have to be altered in light of the formularies. Of course I was happy to change to a cheaper product, so long as it had the same effect. But it didn’t stop there; I was told that there were some products that I would have to use less of or stop using altogether. As I had been using the same products for 10 years, you can imagine that this came as a bit of a shock.

Feeling restricted

For example, I had been using both adhesive remover spray wipes and sprays. Being quite a hairy man, I have had issues with ingrowing hairs under my stoma appliance. In the past, these had created openings in the seal between my pouch and skin, which made my skin sore and risked infection. I had only managed to get around this by changing my pouch removal routine to include both sprays to prevent pulling and wipes to remove the residue.

According to my stoma care nurse, the formularies meant I could no longer have both kinds of adhesive remover, and I would have to choose between two sprays or one box of wipes each month. I explained that, having had my stoma for 10 years, I was pretty clued up on what works for me, and it was important for me to have both. The nurse was sceptical, suggesting that this sounded like an old wives’ tale—which made me feel like I was being accused of wanting to have my stoma and hoarding products!

Likewise, my prescription had always included two boxes of 30 stoma pouches. I am quite a clean freak. I like to change my bag every day and, at the very least, I will change my bag every other day. I travel quite a bit with work; it’s handy to have spare bags in case of an incident, like a dreaded leak or a faulty bag. Plus, I work out a lot and I swim too, so sometimes I have to change my pouch more than once a day.

But the stoma care nurse told me that, under the formularies, I could only have one box of 30 stoma bags for the month. When I tried to explain why 30 bags just wouldn’t cover it, it was laughed off, and I was told that I needed to change less and deal with it.

Ostomates can work with their stoma care nurse to figure out what is best for them

Doing it right

As I’m sure you can understand, all this left me feeling quite hurt. After stoma surgery, we are assured that we will be able to carry on and live a normal life. But it felt that, in my case, the way that the NHS formularies were being put in place was making this impossible.

Everyone is different, with different lives and different needs. Some products work for some people and not for others. Some people can keep their appliance on for up to a week, and others have to change theirs every day or more. Treating everyone the same risks putting restrictions on products that some people need to live their lives.  Cost-saving measures should consider that stomas are not a one-size-fits-all health condition.

I am more than happy to use cheaper products; however, it is important that we are kept informed, listened to and actually asked about whether we’d be willing to switch.

As people living with a stoma, it is worth making our case

Fighting our corner

I felt that it was important to fight my corner, for me and everyone else who might find their stoma prescription limited without their consent or input. I put these feelings in a letter to my hospital’s stoma care department

In this letter, I laid out the reasons why I needed each specific item in my order. Expressing exactly why we need something can be challenging, so I recommend anyone struggling to find the right words to contact their stoma product home delivery service. They can provide more information on exactly what makes a product work and may have the resources to help out.

At the time of writing, I hadn’t had an official response back from the hospital. However, my next prescription did go through without any hassle, which goes to show that we should never be afraid to make our case.

Nathan Wheeler is a SecuriCare customer and blogger. His blogs can be found alongside over 300 others from more than 25 authors on the SecuriCare site

This article has been sponsored by SecuriCare (Medical) Ltd