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[Annieoj]

Hi Everyone,

I am a new member and this forum has been an absolute blessing in trying to navigate myself through figuring out that I am indeed going through menopause and that there are options to help the symptoms that I have lived with the past few years!

Sorry about the long email, but I was hoping someone might have some advice on what I can do next, as I haven't seen a similar thread on the forum.

I'm 48 and have had irregular (actually not many) periods over the past 3/4 years.  When I visited my GP in March I hadn't had a period since July 2017.   

As well as researching other sources, this forum provided me with the information and knowledge to visit my GP armed with the facts that I wanted to start HRT and as a first option I wanted to start with oestrogel and either Utrogestan (or Provera).

After much debate and being assertive (which isn't my normal state), the GP agreed to prescribe the Oestrogel.  He said he couldn't prescribe the Utrogestan, as it wasn't an option and after a long phone call with the pharmacist he prescribed the mini pill ( i.e. .35mg Norethisterone).  He did speak to me about the Mirena coil, as being the best option but I felt I only wanted to consider the coil as a last option if I did not get on well with Utrogestan. 

I then read posts on here that there may be concerns that this dose of progesterone in the mini pill, .35mg daily, will not be sufficient to ensure uterus is protected and it isn't licensed for use as HRT.  (I also thought that as i had had a period in the past year I should be on a sequential preparation and not a continuous).

I returned to GP surgery a month later to see a different GP in the hope that they would prescribe the Utrogestan, as I was a bit confused if the first GP was just cost saving? 
Further to this second consultation, as he admitted he knew little about menopause treatment, he wanted to speak to his colleague who had been a gynocologist (who was in fact the first GP I had seen).  I was then told the local CCG does not allow GP practice to prescribe Utrogestan and neither is Provera available.

So, I got a further prescription for the Oestrogel and Noriday (norethisterone) and I asked the GP to do a referral to a specialist menopause clinic, which he agreed to do. I also wrote to my CCG to ask why it wasn't available in my area.

It took the CCG a month to confirm that Utrogestan is not available for GPs to prescribe in my Local Authority (I live in Enfield, London) as it is not on the North Central London Formulary.  They explained in their email that a recent application from a consultant for Utrogestan to be included in the formulary was declined.  As such, as Utrogestan is not included on the formulary the GP is not able to prescribe it.

I have responded to the head of medicines management of my CCG that I would like to be sent the documentation and full details of the justification behind this decision, when it is available and licensed under the NHS in other areas for women who require a separate progesterone (and don't want the Mirena coil).

I wanted to find out if anyone else has had this experience and if there is any action I can take to challenge the CCG.  I have no idea where to start or what to do next but it seems inequitable that if I lived in a different area I could get this prescription.  I do understand that CCGs have to make fair cost decisions but we aren't talking about a huge cost, in this case.

In the meantime I will continue with my current prescription, as I am definitely benefiting from having started HRT and now sleeping again!!!

Thankyou in advance if anyone can help or has some advice about what to do next.

[Zara69]

Hello. Good for you being so pro-active.  I live in Cheshunt and was told much the same.  I use Evorel sequi patches and wanted to try oestrogel and utrogestan or provera and was told “No” neither were licensed for HRT!  I was going to see a different GP and try again but I'm thinking that the answer will be the same and the real reason is the same as you were told.  I have no idea how you would take it further but I really hope you get somewhere with this as it's just not right.  Following with great interest!  Good luck!

[Letmein]

Did you specify that you wanted the utrogestan alongside oestrogen for the menopause? Because many CCG have stopped GP prescribing it for women who've had IVF. It is often prescribed then to help strengthen the uterus and increase changes of pregnancy, but the CCGs are saying that in this case, it should be the hospital prescribing, and even then some CCGs say that there is no evidence that it helps women be pregnant.

If you've stipulated it was for the menopause, I'm really surprised as I thought it was the standard drug prescribed.

[Wilks]

That's very strange, since the prescribing information for utrogestan states:
“4.1 Therapeutic indications
Utrogestan is indicated for adjunctive use with estrogen in post-menopausal women with an intact uterus, as hormone replacement therapy (HRT).“

[Roadrunner]

Hello Annieoj

I have the same problem as you. Lovely GP who's done her best but a CCG who say absolutely no to utrogestan.

Im afraid I ended going privately because norethisterone gave me headaches and I didn't get on with the Mirena in the past and wasn't keen to revisit it.

I live in the south west. There is no meno clinic so I felt I didn't have much choice really.

Sorry. That's not a solution for you is it? Just thought I'd say you're not alone!

RRxx

[dangermouse]

Interesting as I live in Enfield and was prescribed Utrogestan 2 weeks ago! I asked for it on its own and they said it’s not what they usually prescribe for but knew I was on the progesterone cream under an endocrinologist so said it would be fine.

I only used one as didn’t like it but I got mine from the Green Lanes Practice in Winchmore Hill if that helps. It’s definitely London Borough of Enfield.

However, I did remember about 18 months ago trying HRT and asked for the Oestrogel and Utrogestan (as advised on here) and they struggled to get the computer to prescribe the Utrogestan and so gave me something else. So maybe it’s when they prescribe it with oestrogen rather than on its own?

[Annieoj]

Thank you so much for your responses,

Zara69, it sounds like Cheshunt might be under the same North Central London Formulary and if so that is probably the case why the GP couldn't prescribe.  it might be worth you checking though if the CCG you are under is in that group.  Roadrunner, sorry to hear you had to go private and you are right there isn't much alternative if you want the oestrogen as a separate prescription- It appears to be the mirena or nothing!

Dangermouse, thank you for that information.  My GP practice is just further up the road from the Green Lanes Practice. It would seem that it isn't approved for use as HRT in Enfield and so good to hear that you could get is prescribed. I have followed up with CCG about what the justification was for declining approval further to a recent application from a specialist (for Utrogestan to be included on the list). I have been told that it was decided at their May meeting and so have to wait for the minutes of this meeting to be published on their website (which will be July some time).  It would seem that there isn't much else one can do if it hasn't been included on the formulary list that your local CCG signs up to.  It seems that if a specialist can't get it approved for the list I am not sure what hope I will have in challenging this decision!

The CCG response was:
"In response to your question regarding licensing of Utrogestan and the availability in other areas. I am advised that although it is licensed in the UK for use, that does not constitute a recommendation for use. Enfield Clinical Commissioning Group can confirm that across the 5 CCGs and 8 Acute trusts in North Central London, a decision was made that it should not be used. We are unable to comment on Utrogestan's availability or use in other areas of the country".

The GP has done some further research and the only other option to Mirena that he seems to be able to prescribe is cyclogest pessaries.  He has prescribed 2 weeks on and 2 weeks off which sounds a high dose, so will need to do some more research and see how I get on with this?

Thanks again for your responses and thank goodness for this forum!

Annieoj

[Annieoj]

Yes, it seems that there are indeed further layers of NHS politics to contend with, then just trying to convince a GP that you want this option of HRT.  It might be interesting to find out which CCGs do not approve this prescription due to their local Formulary.  However, as dangermouse noted, who is in the same CCG, the GP did prescribe.

That's for the advice, Stellajane. I will start a new thread to ask advice if anyone is on this regime of Oestrogel/ Cyclogest and how they take it as it isn't licensed for HRT ( unlike Utrogestan!)

[Letmein]

This is interesting considering their website state that they don't currently operate under a formulary, so clearly it is something very new.

[Hurdity]

Hi Annieoj

I've only just seen this thread but answered your question on Cyclogest yesterday.

I was interested in the whole issue of the local CCG and local Formularies so had a quick look at my area for example (somewhere in SW England  ).

THis particular formulary says that is is "providing guidance [my italics] on locally recommended drug choices". It also says elsewhere that there will be instances where prescribing outside the formulary will be both necessary and appropriate, and that it is not a restrictive list but a recommended  list.

In other words they are allowed to prescribed products not on the list if they so choose.

In fact none of the HRT products that I use are on it and it has never been questioned by my GPs, and also was recently prescribed testosterone off licence to boot! I think my GP has to make a note somewhere of why it has been chosen (maybe) well she did for testosterone anyway - but that's probably because it is off licence. As long as they can justify their choice then it seems possible to by-pass the formulary recommendations

I would recommend having a look at the wording on your formulary website and see if it says the same.

I also looked up the NHS website about our rights to a specific treatment and it is a bit vague - here is the link:
https://www.nhs.uk/chq/Pages/1317.aspx?CategoryID=68&SubCategoryID=154

Here is the relevant extract:

Your GP doesn't have to prescribe a particular medication or treatment for you if they think it's not the right option. You're entitled to ask for their reasons for the decision.

You're also entitled to make a suggestion and explain to your GP why you believe a certain medication or treatment is a good option.

Remember that:

    some types of treatment aren't available on the NHS
    you need a referral from your GP to have some types of treatment on the NHS, such as cosmetic surgery

Second opinion

If you're not satisfied with your GP's advice, you may want to consider getting a second opinion. Although you're not legally entitled to a second opinion, a healthcare professional will rarely refuse to refer you.

You may feel happier with a different GP, but be aware they may give you the same advice.

It also says this:

NICE and NHS medicines and treatments

The National Institute for Health and Care Excellence (NICE) regularly looks at new medication and treatments to assess whether they:

    are safe
    are more or less effective than other medication or treatments
    represent value for money by assessing how well a medication or treatment works in relation to its cost

NICE will not automatically reject a medication or treatment because it's expensive. NICE recognises that something can be both expensive and represent good value for money.

The NHS in England and Wales is legally obliged to fund medicines and treatments NICE recommends.

This means that when NICE recommends a medicine or treatment, the NHS must ensure it's available to those people it could help, normally within three months of the guidance being issued.

So, if your doctor thinks a medicine or treatment recommended by NICE is right for you, you should be able to get it on the NHS.

It does not mention formularies - as presumably these are as seen above, local recommendations.

A few years ago there was a press article quoting the then Chairman of NICE and saying we should be more pushy re medication. This was in 2014 and I'm not sure how things have changed since then but might be worth having a read:
https://menopausematters.co.uk/forum/index.php/topic,24333.msg371939.html#msg371939

I'll just re-post the relevant bit from the above thread 9 from 2014):

Here is a recent article by the Chairman of NICE ( National Institute of Health and Care Excellence) who says patients (sadly) need to be more pushy with their doctors (difficult when you are feeling hormonal)!
http://www.telegraph.co.uk/health/nhs/10595806/NHS-patients-should-be-pushy-with-GPs-about-treatment-and-drugs-says-health-chief.html

In it he says this:

Patients should adopt “American” attitudes and be more pushy with their doctors about drugs to which they are entitled, the head of the NHS rationing body has said.

Professor David Haslam, chairman of the National Institute of Health and Care Excellence (NICE), said British patients should become more assertive and see themselves as “equal partners” with their doctors, with legal rights.

He said patients in this country needed to learn from the Americans, who are far more confident about entering into dialogue with family doctors about their health, and taking an active role in managing their health.

Prof Haslam said too many patients were not being offered medications approved by NICE – and should learn more about their conditions and ask for drugs which should be prescribed for them.

In an interview with The Telegraph, he said: “When products have been approved for use by the NHS by Nice, patients have a legal right to those drugs - as long as they are clinically appropriate. The take-up should be much higher than it currently is." ......

This is a bit long but I really hope this small amount of information is helpful to you and others and gives you the impetus to research the treatment you need for yourself so that you can ask for it and justify your choice.

For example: Utrogestan is the only body-identical progesterone licensed for HRT - and I would suggest you have a right only to use body-identical products should you so wish - rather than only being able to get these via expensive and unregulated compounding pharmacies.

Hurdity x

[Annieoj]

Not long at all, thankyou Hurdity.  After my last correspondence with the CCG I was going to wait and read the minutes they referred to and then write to them again.  This information definitely arms me with content to write to them again, complaining! I feel like being very annoying now and might even come up with a a few FOI requests just to get them focusing on the fact this is an "issue".

 Also, as Letmein noted ( thankyou Letmein for picking this up) this particular CCG still has written on their own website, which they haven't updated, that they don't subscribe to a Formulary (looks like it was formed July 2017). It's totally inequitable for women to be caught up in what is actually NHS funding politics. This is not a focus on health and the best treatment, as NICE has already approved it.  Would be interesting to see the gender/age profile of the commissioning/Formulary group but of course, highly educated medical professionals would never be influenced by bias!

Thankyou again for the support and information.

[Binks]

Yes, it seems that there are indeed further layers of NHS politics to contend with, then just trying to convince a GP that you want this option of HRT.  It might be interesting to find out which CCGs do not approve this prescription due to their local Formulary.  However, as dangermouse noted, who is in the same CCG, the GP did prescribe.

That's for the advice, Stellajane. I will start a new thread to ask advice if anyone is on this regime of Oestrogel/ Cyclogest and how they take it as it isn't licensed for HRT ( unlike Utrogestan!)

I asked for Cyclogest as if used it for unsuccessful ivf and didn't want to take oral meds and was refused on grounds that it's not licenced for hrt - therefore surprised to see some drs prescribing ... after 6 months on various forms inc patches and Provera and about to start three month cycling if utrogestan with oestragel

[Hurdity]

Hi Binks

 

Yes the inconsistencies are staggering. I know my own gynae GP would prescribe it because as I said on the other thread ( about Cyclogest) she has been prescribing it for years - before utrogestan was available) but many docs don't know enough about it I suppose, so don't feel confident in deciding on a dose. I hope your trial of estrogel and utrogestan goes well.

Maybe introduce yourself on a new thread either here on in the New members section so that more members can welcome you - otherwise your post might get lost in here!

Hurdity x

[NinaH]

I had to ask for micronised progesterone - another name for utrogestan

[julieh]

In case other women in Scotland see this,  I know this conversation is an old one now....but: the NHS Scotland has its own sets of guidelines, given by Scottish Medicines Consortium (SMC), rather than NICE. SMC guidelines currently do not recommend Utrogestan for HRT, and my GP has told me they will not prescribe for that reason.