Ensuring prescriptions on the NHS

How I responded when my GP surgery asked if I still need my PKU supplement and foods, with example email.

Do you require these prescriptions?

It was a normal Monday morning when I got the call from a staff member at my doctor’s surgery asking if I “really need the PKU supplement and foods this month? Only they are a little expensive…”

I’ve heard rumours of others being questioned over prescribed medicines. However, this was the first time a GP had questioned my PKU supplies. The temptation to respond with “are you being serious right now!” was pretty strong.

Challenges to our treatment regime shouldn’t happen. Sadly, this isn’t an ideal world. These questions are annoying and exhausting, and it is important to be firm and clear in your response.

The temptation to respond with “are you being serious right now!” was pretty strong.

Remain firm, and clear

I replied with “Yes, I absolutely do. This is an incurable condition, I will always need the prescribed PKU medicine and foods for special medical purposes, and the items cannot be bought elsewhere.”

This was enough for the surgery, who confirmed they would go ahead with this prescription this month. Whew! Then they said I would be getting a call to check this every month. Again, WTF? I didn’t say that, instead I asked why they were questioning my treatment regime. It turns out, this wasn’t a doctor or nurse, but someone who was employed to check on all prescriptions. This was just someone doing their job.

PKU patients do have back up

I hid my sigh at needing to explain, again!, and told them: “PKU is inherited and there is no cure. We would just be having the same conversation every month. Is there any way that you can just note that I will always need them? Can my clinic email you with the details so we don’t have to have this call again?”

In the end, the surgery received an email from both me and my PKU clinic. I sent them the details of the NSPKU and attached the NSPKU leaflet for GP Surgery staff. There is an example of my email below.

PKU foods received — so far!

Since this incident, I have received my monthly PKU prescriptions on time and in full. Importantly, I haven’t (yet) had another call from the surgery. My PKU clinic have followed up with me to ensure I haven’t had further problems. And I know that the NSPKU is always there if I require more back up.

Have you had similar problems? Or found a different solution?

Hopefully, you won’t have the same difficulty. If you do, here is my example email and links which might help:

Example email regarding PKU prescriptions

I confirm that I will always need the prescribed PKU medicine and foods for special medical purposes. PKU (Phenylketonuria) is an inherited genetic condition with no cure, and the items cannot be bought elsewhere.

I have included further information below on PKU, and the prescription items, from the National Society for PKU which may be of interest. They are a lovely team and their helpline is open if you have questions.

You have letters from my PKU metabolic clinic on file detailing my needs. Please continue these prescriptions which I require every month.

Have you had similar problems? Or found a different solution?

I'd love to hear about your experiences and how you have solved it, or are you still having difficulties with accessing your prescriptions? Please let me know in the comments below.