Can anyone give help or advice about private prescriptions?

[prescriptionhelp]

I have received a prescription item for about 15 years and it massively helps me manage a chronic health condition. My GP has now told me it has been removed from items they can prescribe. She told me she would look into alternatives but this has just led me to being put on a waiting list for a hospital clinic which could take God knows how long - at least months, maybe a year plus. And I don't really have hope there is anything better than what I already had.

The item is still made (checked the manufacturer's website) but I need a prescription to access it. I was considering getting a private prescription but have no idea how to do this. How do I get one, how much does it cost? Do I then have to pay for the cost of the item on top?

And, does anyone know if / how I can challenge this decision by whoever decides what items are on prescription? This item is cheap/ safe (its not a drug so there are no side effects) and extremely effective. I've had this condition for 30 years so I know all the alternatives and this item is much, much better than all of them. The others are painful, unreliable, much more life limiting, and decrease in effectiveness with use.

This item enables me to live a life as close to normal as possible. I'm bloody furious and really, really upset I can't get it on the NHS anymore.

Thanks for any help anyone can give.

You need a private GP or consultant to prescribe it and then you take it to a chemist and pay for the full cost of the item.

Is there an alternative available?

It might help if you could tell us what the item is?

The gp should be able to write you a private prescription but s/he may charge you for this. The pharmacy can dispense the private prescription, but they will have their own charge scales, so it’s worth shopping around.

There are some online doctors but I don’t know which ones are reputable.

Alternatively, find a private doctor in your area. Some are attached to private hospitals.

Regarding not being to prescribe it on the NHS, is it ‘blacklisted’, ie. Removed from the approved list, or has the local CCG (or whatever it’s called. Nowadays) stopped supporting it. If the latter, contact them directly to ask for their approval to continue prescribing it.

What's the item op maybe there are others here which take it and can advise

Yes, GPs will often try to prescribe the cheapest thing, so the first step is to push back and make sure that they are actually forbidden to prescribe, rather than being advised not to.

This also happened to my mum, she phoned the surgery to challenge and they reinstated her prescription.

Not all NHS GPs will do private work, so you may need to find your nearest private GP.

Whether it's your regular GP acting privately or one from a private practice, you will still need to pay a charge for consultation and the issuing of the prescription. And then when it's filled, you will need to pay a dispensing charge and the full price of the item.

You could go and see a private GP or an online one and then they may give you one.

If it's diazepan though, GPs are no longer allowed to prescribe under most circumstances and you will probably need to find a way to wean yourself off it.

No it’s not diazepam! I don’t even know what that is! It’s not a drug.

God it sounds expensive! What sort of price for all this am I looking at, excluding the cost of the item itself? With consultation charge and prescription charge and dispensing charge?! It’s going to be hard enough to find the cost now, let alone when I retire and I’m going to need this for life!

Looks like I need to go back to GP to ask some more questions too.

I’m not sure what the difference is between removed from the approved list and local CCG? Does removed from the approved list mean no NHS will prescribe it? Because that can’t be the case as the manufacturer’s website for customers says you need to get a script to obtain it.

Does the CCG mean just my local health board has decided to stop supplying it?

If it’s not a drug, why would it need prescribing? Most things that are not on the nhs list of meds are available over the counter or via the internet, have you looked there?

What is it? I've had a private prescription for medicines. I just found a pharmacy that had them available and I completed an online form with health history and they were dispensed and posted to me.

If you say what it is, someone may be able to find where to easily get it.

I don’t want to say what it is as it’s embarrassing! It’s also quite unlikely anyone on here would know what it is or what alternatives are. It’s quite specific. Like I say, I’ve checked with the manufacturer and I do need a prescription.

I work in a pharmacy
Message me and I can investigate price etc for you if you want

Isn't that the point of posting in an anonymous forum? So no need to be embarrassed!

My DD had a private Psych and they charged £25 to write out the prescription. Then I had to pay for the items £70 until the GP agreed a shared case with the Psych and then it transferred to the NHS.
As others have said if you were prescribed the item previously you should be able to get an alternative? If it's the exact make you want then you will have to pay privately. Some items are not too expensive.

You have an anonymous username on an anonymous forum!

Plus I don't think there has been a question on Mumsnet where someone didn't have the niche knowledge to answer it.

But you're on an anonymous forum with what looks like a NC for this thread. What's to be embarrassed about

I'm a doctor and I do both private and NHS work. We would write a private prescription if it was appropriate and safe. If it was for a controlled drug, we would only issue it if you consented to us informing your NHS GP, and some private GPs won't issue controlled drugs at all. We would charge for the consultation, plus a prescription fee, then your pharmacist would charge you the cost of the drug (and possibly a dispensing fee as well? I'm not sure what happens once prescriptions leave my surgery!). Even excluding the cost of the drug, it would cost you £100-150 to have a consultation with me and get the prescription.

PM me if you want advice - I may be able to signpost you to a reputable private GP in your area (not me, I don't want to out myself 😂).

I should say that if it's a fairly safe/harmless prescription, the private GP may be happy to keep issuing it without seeing you every time. In my workplace we'd charge a modest flat fee to keep issuing a private repeat prescription for a year, and if you didn't need to speak to a doctor again, we wouldn't charge you a consultation fee again.

Is it Vaniqa or something like that? You can buy it online from an offshore pharmacy.

Just spoken to the manufacturer for advice and they say it must be that my actual surgery has decided to stop prescribing it and I will need to move surgery. She said she has never heard of a surgery stopping prescribing this before. FFS. My surgery is good in other ways - you can get a same day emergency appt. and its always easy to get through to them. I am probably the only patient on this item! It feels like a deliberate targeting of me!

I think I am going to have to speak to the GP practice about this and find out why and what is going on. I'm really angry and upset by this.

There’s a national formulary of drugs, which includes a list of items (blacklist) not allowed to be prescribed. Eg Calpol, but can be prescribed as paracetamol suspension.

Every area has an Integrated Care Board (replaced CCGs). These oversee local policies, and may restrict the use of certain medicines, or encourage better drug regimes. Eg. Stopped allowing gluten free products on prescription as they’re widely available in shops now.

https://herefordshireandworcestershireccg.nhs.uk/policies/clinical-medicines-commissioning/herefordshire-worcestershire-medicines-and-prescribing-committee-mpc/460-h-w-netformulary-and-guidelines-information-for-users/file

Herefordshire and Worcester prescribing guidelines