It has been one of those months where my anxiety has been at 100% and then, to top it off, I got hit with the dreaded formularies. If you’re unsure what these are, the NHS have put in place some cost saving measures which also aim to stop people hoarding unnecessary products.
The NHS formularies have hit the stoma department in my hospital.
It started with me putting my prescription in, like I always do, but after a week I received a phone call from my GP saying my prescription had been declined. They didn’t say why, but suggested I phone my Stoma Care Nurse. Frantically searching online for what it could be, I shared my concerns with others in some of the online forums – lots of people seem to be experiencing the same issues as me. I kept searching, until I stumbled across some information about formularies.
There is a common misconception that it’s the suppliers (the home delivery services) who are refusing to send out certain products.
Lots of the other ostomates I’d spoken to had advised me that switching to a different supplier could solve my issue. When actually, as it’s a problem with the formularies themselves, there’s little the suppliers can do and they are just as frustrated as us! Once I’d figured this out, there was only one thing I could do…
I called the Stoma Care Nurse, who wanted to really restrict what I used.
As you can imagine, it came as a bit of a shock because I have been using the same products for ten years! Of course I was happy to change to cheaper products so long as they had the same effect, such as a different brand of adhesive wipes, but it didn’t stop there.
Being quite a hairy man, I have had issues with ingrowing hairs under my stoma appliance, which has caused big openings in the past – sore, and an infection risk. The way I got around this was by using an adhesive spray to get the bag off with no pulling and then using an adhesive wipe to remove the residue. I explained this to the Stoma Care Nurse, and she told me that it “sounds like an old wives’ tale” and she’d only allow me two sprays a month OR one box of adhesive wipes.
I explained that having had my stoma for ten years, I would like to think I’m pretty clued up on what works for me, but she said that, due to the formularies, she couldn’t give me both.
I was made to feel like I wanted to have my stoma and I was hoarding products!
Then we moved on to the stoma bags. I have two boxes of 30 stoma bags on my prescription. I travel quite a bit with work, and it’s handy to have spare bags in case of an incident like a dreaded leak or a faulty bag. The Stoma Care Nurse would only grant me one box of 30 stoma bags for the month under the formularies. I explained that, at very least, I would change my bag every other day. I actually like to change my bag every day. I am quite a clean freak anyway, but I work out a lot and I swim too so 30 bags just wouldn’t cover it.
She basically laughed at me and said I need to change less and deal with it.
I’m sure you can understand that I was left feeling quite hurt by this. We’re taught by the Stoma Care Nurses in hospital that we can carry on and live a normal life after stoma surgery. It seems the NHS formularies now stop that from being possible.
I fought my corner and am currently waiting for an outcome back from the complaints department at the hospital. Not only for myself, but for anyone else that gets hit by the formulary limits.
I am absolutely fine with them telling us about cheaper products and ASKING if we’d be willing to switch to these. However, stomas are not a 'one size fits all’ health condition.
Everyone is different and some products work for some people and not others. Some people can keep their appliance on for up to a week and others will change theirs every day. I don’t agree with things being put in place to make us all 'the same' as it just doesn’t work.
You may never experience something like this with your stoma department, but I just wanted to highlight it in case any of you did.
Fight your corner and make it known why you need the specific stoma products you ask for.
If you struggle finding the right words and need more information on the unique benefits of that product, contact the suppliers – they will have resources to help you out.
I have had no official response from the hospital yet, but my most recent prescription went through without any hassle. People have different lives and different needs, and the NHS with their formularies need to recognise this when putting limits and restrictions on products that effectively allow people to live their lives.
I’ll keep you posted!