To think this GP policy is backfiring?

[ConfusedYetAgain]

I’ve had eczema pretty much my whole life. After years of dermatology appointments and lots of trial and error with different emollients and steroid creams me and my GP (sadly now retired) finally found a combination of stuff that keeps it generally under control.

Until a couple of months ago I requested my prescription as usual and when I went to collect it I was told my usual emollient cream and bath emollient are no longer available for cost reasons. Instead I’ve been given a different emollient cream and no bath emollient. I asked the receptionist how I could request this is reconsidered given my history and she said to make a GP appointment.

So, GP appointment 1 I explain my concerns, GP says I need to try the alternative cream, even though I’ve used it before and it wasn’t suitable. Also told me that if I had my heart set on the original emollient I could buy it myself. Not sure who has their heart set on a product they use to treat a medical problem (!) but I asked at the pharmacy how much it would cost and for the amount I need to use the emollient cream alone would cost me around £40 a month which is just impossible. I took GPs advice and tried the new emollient and went without the bath emollient as per her advice.

I was hoping it’d be okay but within a short time my eczema had really flared up and the mild steroid cream I normally use wasn’t helping. Cue GP appointment 2 GP is sympathetic but says there’s nothing they can do. Prescribes potent steroid cream, alternative emollient cream and aqueous cream to use instead of bath emollient. Advises me to come back if no improvement in 10-14 days.

Eczema continues to be worse so I make GP appointment number 3 GP again very sympathetic. Says that he’d prefer to just prescribe the emollient that has helped for years but he’s not allowed to. Instead prescribes potent steroid and antibiotic cream. Advises to return if no improvement in 7 days.

A week later, GP appointment 4 Same GP says he’s going to refer me to dermatology again as eczema not responding to usual treatment. I say this seems ridiculous when it was well controlled with my original emollient cream and bath emollient. GP agrees and says it’s possible dermatology will just recommend the original emollient and that the GP can then prescribe it as it’ll be on specialist advice.

So, the original cost cutting exercise has now led to this extra cost:
4 GP appointments
1 dermatology appointment
2 potent steroid prescriptions, 1 antibiotic prescription, several prescriptions for emollients that were only half used due to my skin reacting badly

I can’t help thinking that all of this must dwarf the saving they’d make by switching me to a cheaper emollient cream and banning prescriptions for bath emollients. AIBU to think it all seems massively counterproductive?

I'm sorry to hear this.

I've suffered from eczema my whole life.

Some people genuinely don't realise quite how debilitating it can be, nor how much impact it can have on your life.

I have to keep to a strict regimen to keep it under control. Keeping my skin moisturised is a daily battle. One I still lose occasionally.

A flare up can leave me in extreme pain with open sores, cracked skin, bleeding over clothes and bedding.

Apart from the physical pain, it's hugely debilitating in terms of mental health. I end up sleep deprived and frankly aghast at my own appearance. In that case it ends up being socially isolating.

When I got married I didn't design my wedding dress based on what I "wanted" to wear. I based it on fabrics that wouldn't irritate my skin and designs that would hide the areas that were most prone to flare ups.

I choose all clothing on this basis.

Changes in the formula of deodorants, washing powder, make up, creams can have massive impacts.

I have to "patch test" everything that my skin comes in contact with. I wash bedding every 3 days on an allergy cycle. Hoover daily.

Then I see a post about a "posh" moisturiser and frankly I'm damn cross.

There is not a single aspect of my life that isn't impacted by eczema, even the sports I participate in (love to swim but the chorine in public pools is a one way ticket to weeks of itching, bleeding and pain).

It all sounds so easy that one cream is as good as another, but that's simply not true.

Its taken over 10 years to get to a place where I know what works to keep my skin as healthy as is can possibly be in my condition.

Yet eczema as a condition is so generic its seen as an area to cost save.

Yes - it probably makes little difference for people suffering a mild form of one cream over another. However for those of us who are at the more extreme end of the condition, just one change makes a huge impact.

There needs to be more understanding that the experiences of people who suffer from periodic episodes of eczema and those with chronic and severe eczema are not the same and thus the prescription offerings should not be placed in the same category.

Sorry - that was longer than anticipated, but as you can maybe guess I'm mid-flare and fed up, grumpy and cross.

I feel for you OP, I suspected it's about Aveeno as the same happened with my daughter last autumn. So it looks like national tendency. I had some in stock (bought on Boots sale) so used it up. Now we are finishing the last bottle so don't know what to do.
It was dermatologist who advised it on the first place but it took me ages to get appointment!

Sorry to read all these experiences. Have had similar experience with local CCG refusing to allow injectable methotrexate rather than the oral which made me puke. My consultant had advised the switch. Me being cynical I wondered if it was cost that prompted CCG decision (injection is about 10x cost of tabs). The pharmacist at our semi-rural practise interceded on my behalf & permission was given.
I was on the point of going to see my MP.
I understand that CCG’s need to minimise wasteful practise but I do think that the patient is being lost sight of in favour of bureaucratic processes & that the GP’s/ specislists who have the patients in front of them & know their history should be allowed some discretion. It saddens me.

Semi-rural practice (no s!)

OP, advice to prescribe alternatives to Aveeno will be a CCG decision rather than one made by your surgery. It’s been implemented nationwide by virtually every CCG over the past year or two, so you’d be hard pressed to find a GP who will be allowed to prescribe it.

It’s based on the NHS PrescQIPP guidance on ‘cost effective prescribing of emollients’ which has been adopted by NICE and therefore used by CCGs everywhere to make prescribing decisions. Essentially this document states

a) that there’s no trial evidence to demonstrate the superiority of aveeno over other emollients
b) that therefore as Aveeno is almost twice the cost of virtually every other emollient out there, it should be replaced with a more ‘cost effective’ alternative

In short, they don’t think the medical benefit justifies the increased prescribing cost. They think it’s one way of significantly reducing NHS spend. It’s unfortunate, but part and parcel of the way NHS prescribing decisions are currently being made.

OP same happened with my sister getting Aveeno prescribed from the GP, they said they could no longer prescribe for her DD.

I buy aveeno myself as it helps with my dry skin, boots and superdrug usually have it on offer with a 1/3 off the price or some other deal and that is when i buy it.

If you shop at boots and use your boots card the points will soon add up and you can use to pay for the next few bottles.

Sorry you have to go through this,

darth, that all sounds so familiar. I’m sorry you’re having to deal with all of that. You’re absolutely right about how different it is to have severe and persistent eczema, compared to people who have only occasional eczema flare ups. It seems that the reason NHS guideline don’t really take this difference into account.

So your treatment is still available, but no longer available on prescription as it’s nit seen as necessary- is that it? Has it been taken off, like paracetamol etc in order to free up money for treatements that are more expensive? The referral to dermatology- I’m assuming you still won’t have what you want prescribed if it can no longer be prescribed. Is there any way you can try to rebudget to include it? If this is all that’s worked in years of trying other things, then surely the dermatology appt is going to be a waste of time for you? If the stuff you need is juts not available, it’s frustrating, but I don’t aee what else the GP can do.

It's not 'cost effective' tomprescribe something that doesn't work. And all the trial data in the world won't enable the bean counters to prescribe medicines that work for everybody. Human beings just don't work like that.

jean, thanks for all that information, it’s interesting to hear about these decisions.

Is this the report you mentioned? www.prescqipp.info/resources/send/174-emollients/1951-bulletin-76-cost-effective-and-appropriate-prescribing-of-emollients

If so then I’m even more confused now! It says Aveeno cream is £1.44 per 100g but the alternatives they’ve given me so far are Epaderm (£1.39 per 100g), Diprobase (£1.26 per 100g) and E45 (£1.12 per 100g).

The Epaderm is literally 25p cheaper per bottle. And even the E45 is only £1.60 cheaper).

Last time I had a hospital appointment I got one of those reminder texts saying not attending would cost the NHS £185. They’d need to change my prescription to Epaderm for 15 years before they’d save £185 on it. And that’s even taking into account the big quantities of emollient I use. Just ridiculous!

Has it been taken off, like paracetamol etc in order to free up money for treatements that are more expensive?

Paracetamol remains available for prescription if indicated so I’m not sure what you mean.

The referral to dermatology- I’m assuming you still won’t have what you want prescribed if it can no longer be prescribed.

The GP has referred me as they will be able to prescribe the usual treatment if it’s initiated by a specialist. The GP actually said that his expectation is that they’ll look at my history, grumble about the referral and write to my GP saying they recommend restarting my original treatment.

Is there any way you can try to rebudget to include it?

It’s over £700 a year. I don’t have £700 a year of luxury spending to cut back on.

I have heard it said that the NHS would spend 1000 pounds to save a fiver. It sounds like the bean-counters that make these decisions don't trust the doctors to be able to make sensible decisions regarding medicines, costs and their patients' needs. But considering the cuts that have been made to the NHS, I am surprised that people are surprised. Lack of joined up thinking and false economies in order to save money are the hall mark of the government and the services they supply.

YADNBU! Hope things get better soon

OP yanbu at all, it’s ridiculous.

I had to fight to get a prescription today because it was expensive. I would have paid but they made a rule that the medication is not available to be sold only prescribed.

It’s such a stupid, frustrating system & not cost effective at all.

Yanbu, but the NHS suits certainly are.

Dd had something similar although we were lucky in the end. We always controlled her eczema with otc, or Lush baby bath bath bombs. But when we moved we couldn't get any of the usual products, and we're nowhere near a lush. Then I stupidly used a kids shampoo, one with some character on it, cue giant flare up. Her hair was coming out in patches. Her whole back was covered in it, and bleeding. It was in her ears. She was pretty miserable, and about four or five at the time.

We went through six different strengths of steroid creams and saw two dermatologists.

Our local pharmacy started researching and ordering in bath products that had worked for other kids, like halo and horns, and our GP was happy to prescribe it. The pharmacy never questioned any of her prescriptions. He said he'd write a prescription for anything that worked.

I realise how lucky we are with our GP. And that DDS eczema can be controlled so far by avoiding thing we know would cause a flare up. Especially as management is so important with eczema, not messing about with what works.

I’m in Scotland and Aveeno has also been taken off the prescribable list too.
I buy it now for DD but can’t afford too much so I just struggle along with the poor quality alternatives

I use epaderm cream to moisturise my skin. I also have a PPC. I go through a 500ml bottle every 3 days. But of COURSE I could get that over the counter, wouldn't make me bankrupt at all...

Oh OP, I really sympathise. I've suffered migraines since childhood and received almost no help. When they started affecting my job in 2013 I managed to get a referral to neurology. Neurologist was great and prescribed a regime of stronger triptsns than the GP was prescribing, plus beta blockers.

I went back to the GP who agreed to trial it, but even though things improved, after a few months in 2014 my repeat prescription was reverted back to the old one and none of the neurologist's recommendations were continued. When queried I was told it was because they were too expensive to prescribe.

I continued to make do, but struggled. Last Summer I had a severe migraine attack that lasted over a week. I went to the GP in desperation and saw a different one as an emergency. He gave me medication to break the cycle, but the migraine kept coming back. After a week more I went back. He wanted to refer me to neurology as he said I needed stronger meds. I said I'd been in 2013 but was told his suggestions were too expensive. GP went into my record, found the letter and said times had changed, so if I was happy to skip a new referral he could implement the neurologist's suggestions there and then. I agreed and left with a prescription.

My meds are special order so I have to be organised with prescriptions, but 9 months on I can count on my hands the number of migraines I have had - before I was having at least 2 per week and nearly lost my job.

Sometimes you find GPs who have some common sense, and I'm kicking myself that I left it so long to try again and let it get to crisis point. CCGs don't have many clinical staff involved, they just look at what is prescribed mist and what it costs and honestly just cut whatever isn't lifesaving. Quality of life is rarely a concern and patients who need specislist involvement usually endbup costing far more in referrals and failed treatments.

DD was moved from Movicol to a cheaper alternative a while ago, but she just wouldn't drink it (didn't like the taste, even disguised in drinks) - luckily my GP just moved her back to Movicol. Sorry for your pain!

@ConfusedYetAgain I got a 223ml bottle of the baby Aveena emollient as a sample, which you’d be more than welcome to, but I imagine it’s not the same as the proper eczema one.

For those who have to buy aveeno it is often on offer in costco if you have membership or know someone who has. My mum always stocks up that way.

It is frustrating when medicines which are working are changed with no discussion or clinical reason to do so. We have had issue with the Gp trying to change ds inhalers to a much weaker and cheaper one (seretide 250 to clenil 100) with no reasoning or consultation with his consultant. They have currently decided he can have 30 sachets of movicol a month even though he needs 2-4 per day to keep things moving...

sounds awful op my dad suffers terribly and it never gets fully under control. I work in a surgery only admin though but just though I would mention where i work we have a practice pharmacist he's not always at surgery but does work there some days. The doctors often go to him with quests ECT and I know that sometimes they do send letters out changing medications( I don't know anything about this we only get told so we are aware patients might be calling to discuss) The patients at our surgery speak to him I honestly don't know if this changes anything for them but just thought it might be worth seeing if your surgery has a pharmacist it might be worth discussing it with them

Where we are Costco only have the lotion and not the cream, it's the cream we need as lotion not moisturising enough.

We've just been hit by the same cut and now trialling everything that can still be prescribed to find a suitable alternative for DS. It's so frustrating.

You may be in a minority of people who react badly to the other creams. I think the NHS is right to trial cheaper alternatives. We're very lucky to have an NHS and free/subsidised prescriptions, without it we'd all be paying for private health care/ insurance.

Eczema is painful and affects quality of life, but it isn't life threatening, so handing out creams and bath oils that cost £40 a month doesn't make sense if another might work equally well.

The thing is Aveeno is different because it’s oat-based. So if that works for your eczema, switching to a cream that has a different base won’t work. Eczema is so individual and there are so many varied and different triggers. It is torture and can be hugely debilitating. My son suffers excruciatingly but the depth of his torment wouldn’t make it easier to magic up £60 a month if suddenly asked so I understand why you can’t just pay for it yourself - if you don’t have the money then you don’t.