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[Jenna]

To contact NICE:

https://www.nice.org.uk/get-involved/contact-us

[pepperminty]

Ok Ladies  - just found out that MYLAN BGP makes  Femosten /Dydrogesterone, sold under the brand name Duphaston among others.  I called the reception and she gave me the email address :[email protected] and said to email her and she will pass it on.

So do we need a clear, positive, point by point email asking how we go about getting dydrogesterone in to the uk? And whhether they would be willing to do so? I suspect that they will throw it back to NICE? But persistence is the key here maybe?

NICE are here to help us, the drug is already used so what is the issue? With HRT etc in the press at the moment the time may be right? Such a small thing could have the potential to help so many women. If we are a small percentage on here then multiply that with all the other women in th UK who give up silently .


So if there are any suggestions to be included we can formulate a generic email , which relates to economic issues as well as the above .

PMX

[Maryjane]

I was at a Menopause talk on Saturday & there are new HRTs being produced hopefully for 3/5 years time.

Not for us maybe, but generations behind us.

[pepperminty]

That's great MaryJane- Hopefully for us as it is never too late to start! If everyone takes a brick form the wall eventually it may fall down. One's own small brick or chip may not seem like much , but it all makes a difference.  I always feel better when I am doing something positive, even though, soemtimes it is a monumental struggle.

PMX

[Perinowpost]

That's amazing what we can do when we put our heads together 😀 . Good news Maryjane let's hope they include a kinder progesterone x

[pepperminty]

Hear hear, agree with everything that's been said. Currently on day 7 of Utrogestan and keep having a little weep, and wondering how much longer I can go on with this.

Can't we form a group and lobby someone/somewhere? Or how about contacting the makers of dydrogesterone and seeing what their response is as a starting point? What do others think?x

Hi Perinopost, as per your posts here, when you are feeling better, let me know your thoughts on what should be included? I also think that we should come from a thank you for what we have already, and how do we go about getting what we want standpoint? And also perhaps what is the likely hood that we will get it ? - If nothing else it opens a thought or perhaps a discussion.

PMX

[Perinowpost]

Definitely, I'm just going through the prog withdrawal phase (foggy thinking) so wouldn't write my best email right now. But should feel better in a couple of days. Will draft it up for re-edit x

[pepperminty]

Definitely, I'm just going through the prog withdrawal phase (foggy thinking) so wouldn't write my best email right now. But should feel better in a couple of days. Will draft it up for re-edit x

Great , awful that we have to go through all this crap, I get that too! I do hope you feel fabulous very soon!

PMX

[Perinowpost]

Hi all

As promised I wrote to Mylan (the makers of Dydrogesterone) and NICE re the subject of dydrogersterone being removed especially with it being a kinder progersterone.  I have yet to hear from NICE (apart from an acknowlegement that they will be in touch within the next 18 days), but thought you would like to read Mylan's response which I received today below:

'I refer to your recent correspondence in which you requested information on the withdrawal
of Dydrogesterone by NICE
NICE is an independent body that governs certain aspects of healthcare in the UK. As such
we would not be able to comment on the reasoning behind their withdrawal of
Dydrogesterone as a treatment option for HRT. For this information we would suggest
contacting NICE themselves.[/b]
If patients require any further information regarding suitable treatment options, we would
advise them to contact their doctor or pharmacist as they are best placed to provide them
with this information.
The personal data you give us will be used to answer your query and the information needed
to answer your query will be recorded. Your query and the personal information relevant to it
will be retained for a defined period to enable Mylan to meet its Data Processing policy
obligations. Further information is available in the Medical Information Fair Processing
Notice available by contacting us by e-mail at [email protected]
I hope you find this information helpful. Please do not hesitate to contact me'.

Disappointing I know but worth a try.  Once I've heard from NICE I will share it with the forum x

[pepperminty]

Thanks Perinowin,   hopefully NICE will come up with a viable reason. Cost I suspect.

PMX

[Perinowpost]

Hi all

We've now had a reply from NICE, please see below:

'Thank you for contacting the National Institute for Health and Care Excellence (NICE). I understand that this is an important issue for you and hope that you find the following information helpful.
 
NICE is an independent organisation responsible for providing national guidance in the areas of healthcare, public health, and social care in England for the purpose of promoting good health and preventing and treating ill health. While we have published a clinical guideline on menopause: diagnosis and management (NG23), which makes recommendations relating to hormone replacement therapy, we have not made recommendations on the prescribing of dydrogesterone.
 
In your email you said that dydrogesterone ‘has been withdrawn by NICE as a separate option when used with hrt'. I can confirm that we have not published technology appraisals guidance on dydrogesterone or progesterone and therefore it is up to the relevant commissioner, in this case individual clinical commissioning groups (CCGs), to make decisions about the funding of this treatment on the NHS.
 
When we recommend a treatment 'as an option' in our technology appraisals guidance, the NHS must make sure it is available within 3 months (unless otherwise specified) of its date of publication. This means that, if a patient has a disease or condition and the doctor responsible for their care thinks that the technology is the right treatment, it should be available for use, in line with NICE's recommendations. However, as explained above we have not published technology appraisals guidance on dydrogesterone or progesterone.
 
Clinical commissioning groups (CCGs) are responsible for the commissioning and procurement of most treatments and services in the local areas for which they are responsible so you may wish to contact them to see if they have a local policy in place on prescribing dydrogesterone. You can search for your local CCG, and find their contact details, on the NHS website.
 
I hope that you find this information helpful. Please tell us how we did by completing our short survey. It will only take you a couple of minutes.'


What does everybody think?  It will be interesting to get feedback as to where we go from here x

[pepperminty]

Thank you soo much for doing this Perinwpost. It looks like the CCG is where to go. But what does NICE need to do a recomendation for a drug then such as Dygesterone?

PMX

[CLKD]

Passing the buck?

Well done on persevering!

[Perinowpost]

Hi Pepperminty

Yes it looks like contacting the  CCG is the next step.  Unfortunately, when I looked at my local one (as per the link) it said ‘requires improvement'!

I'm not sure about NICE. Hopefully we'll get some more suggestions. Especially given that progesterone intolerance is one of the most common problems on the forum x

[CLKD]

Does that mean that they haven't sanctioned 'progesterone' .......