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[NeetaK]

I had my follow up appointment on Monday with the nurse in Nick Panays team. I was referred on the NHS and the appointment was already delayed by over a year because of covid.
The nurse thought it was my first appointment. It was clear she didn’t even read my notes from my first appointment 2 months ago. She didn’t even have my test results (bone dexa and ultrasound that she asked my GP to refer me for after our first appointment) that my GP emailed her. I had to remind her about them. I was very disappointed. I thought they were meant to be the best POF team on the NHS. She said sorry, but I felt like it was a bit of a waste of time.
She’s told me I have to wait another 3 months now to have a follow up appointment with the consultant. I assume this will be with Nick Panay, right?
One of the things we discussed in the first appointment is that I can’t take utrogestan (on 100mg) because it causes acne, oily skin etc, but because she thought it was my first appointment she forgot about this. I’m not having periods on Sandrena gel, and she told me I had to start taking utrogestan 200mg immediately for 2 weeks because my womb lining is too thick. No mention of what to do about the side effects. Just wait to speak to the consultant in 3 months!
We also discussed other things in the first appointment that weren’t followed up in this one.
I’m now thinking I’ll have to come off Sandrena gel if I have to take utrogestan! Which will make life unpleasant to say the least.
Fed up.

[CLKD]

I would ring Nick's Secretary 2 explain what happened and ask to see him sooner rather than later.  C-19 should not be used as an excuse but I fear this will continue for many years.   

Do make sure that your GP is aware that this Nurse had appeared not to read your notes prior to your appt., copy to Nick Panay?  A sorry ain't good enough!!

[NeetaK]

Thanks for your reply.

I can’t ring Nick Panay’s secretary. I had the same problem when my appointment was cancelled in April 2020 because of Covid. I kept ringing asking when my appointment would be, and why they couldn’t give me a telephone appointment. I was told I just had to wait by the admin team. Every time I have to speak to the admin team, they don’t ever put me through to his secretary.

[CLKD]

That's not good enough!  Could you find another clinic or would that B 2 far to travel?  One needs to feel supported and listened to.  They are supposed to be 'in the know' but certainly, if the Nurse hasn't bothered to read your notes, isn't that wasting everyone's time?

[Kathleen]

Hello NeetaK

I am sorry that you are having this trouble and I completely understand your frustration.
I have been in a similar situation as have other ladies I am sure.

These days I try to lead the discussion from the outset and always arrive with my notes etc.  The last medical appointment I had the Consultant began with a general question but I didn't want to risk being sidetracked so I said that before I answered I just wanted to ask about X.  I felt that I was able to get to the point straight away and not have my time wasted by talking around the subject.

I realise that this doesn't really help you at the moment so perhaps you can email the hospital with your concerns and continue contacting them until you get a satisfactory response. In the meantime perhaps email Dr Currie for advice on your HRT.  Her reply may help you and also give you some leverage with the hospital.

I hope you get the help you need as soon as possible, these medical professionals are employed to provide a service to us patients and we shouldn't have to fight so hard to be heard.

Take care.

K.

[CLKD]

I wonder whether, had you been paying directly, if the response would have been supportive  ........ ? cynic ? Moi?

[linz57]

CLKD, I once saw the same ENT consultant both privately and then through the NHS. I couldn’t believe it was the same man as his manner and demeanour were so different at each appointment.
When I went privately he listened, discussed and then carried out a small procedure very gently. Fast forward to the NHS appointment and he didn’t want to know me, he also carried out the procedure without the same care so yes, I’d say you’re right to be cynical, I certainly am now.

[CLKD]

I worked with a Consultant of similar vein ............ treated PPs with kid gloves  I could write a book 

[Nas]

Hi NeetaK,
Mmmm, interesting.
I am also under Chelsea and Westminster clinic. Did you get discharged by any chance last summer during lockdown?
I did and it has taken me until a month ago, to get re referred. Then I was referrred to general gynae (who had to do a fast track internal referrral to the meno clinic!) I am thinking that they discharged many women a year ago and are now having to play catch up, hence not having your notes from your initial appointment etc and feeling unlistened to.

In truth, you are going to be hard pushed to see the man himself . I have had one face to face with a member of his team and thereafter, it has been phone appointments.

You have two choices. Either bear with C&W and see where you get to. Or pay private.
C&W are meant to be one of the best, but I don't believe they are right now.

The nurse could of suggested an alternative progesterone maybe? Can you cope with the utrogestan side effects? Could you have a coil fitted for the progesterone element? Or opt for a hysterectomy?

It is all terribly frustrating and I feel for you. I am stumbling round in the dark too, trying to strike a balance, under the vague guidance of C&W!

[kateJ]

H Neetak,

I have been under the C & W for a coiuple of years, but now discharged. I saw a 'fellow' on my first appointment and then the nurse thereafter, mostly via the telephone.  She never appeared to have read my notes, and I actually pointed this out to her; did not send me the relevant paperwork or organise blood tests meaning I had to go backwards and forwards to different departments. She changed my ptrogesterone to LUBITON' without any discussion with me, and i had to email her about it as I can find nothing on the internet about this. . Also I have had to email 3 times to get her to correct my updated prescription and have never received reassurance that the new progesterone is bioidentical.

Have yo complained to Panays' secretary? She used to be available.

[CLKD]

It is not good enough!   

[NeetaK]

That's not good enough!  Could you find another clinic or would that B 2 far to travel?  One needs to feel supported and listened to.  They are supposed to be 'in the know' but certainly, if the Nurse hasn't bothered to read your notes, isn't that wasting everyone's time?

I’m actually in the north and they are in London. They have been telephone appointments. I thought Nick Panay’s team were the best POF team? I don’t know what number gynaecologist this is now on the NHS....no. 3/4?! I’m going to email them.

[NeetaK]

Hello NeetaK

I am sorry that you are having this trouble and I completely understand your frustration.
I have been in a similar situation as have other ladies I am sure.

These days I try to lead the discussion from the outset and always arrive with my notes etc.  The last medical appointment I had the Consultant began with a general question but I didn't want to risk being sidetracked so I said that before I answered I just wanted to ask about X.  I felt that I was able to get to the point straight away and not have my time wasted by talking around the subject.

I realise that this doesn't really help you at the moment so perhaps you can email the hospital with your concerns and continue contacting them until you get a satisfactory response. In the meantime perhaps email Dr Currie for advice on your HRT.  Her reply may help you and also give you some leverage with the hospital.

I hope you get the help you need as soon as possible, these medical professionals are employed to provide a service to us patients and we shouldn't have to fight so hard to be heard.

Take care.

K.

Hi Kathleen

I will try and do that next time.

I will email them with my concerns this week.

Who is Dr Currie? I’m new to all this.

Thanks

[NeetaK]

CLKD, I once saw the same ENT consultant both privately and then through the NHS. I couldn’t believe it was the same man as his manner and demeanour were so different at each appointment.
When I went privately he listened, discussed and then carried out a small procedure very gently. Fast forward to the NHS appointment and he didn’t want to know me, he also carried out the procedure without the same care so yes, I’d say you’re right to be cynical, I certainly am now.

Yes! I have had similar experiences going private and NHS! It’s very unfair.

[NeetaK]

Hi NeetaK,
Mmmm, interesting.
I am also under Chelsea and Westminster clinic. Did you get discharged by any chance last summer during lockdown?
I did and it has taken me until a month ago, to get re referred. Then I was referrred to general gynae (who had to do a fast track internal referrral to the meno clinic!) I am thinking that they discharged many women a year ago and are now having to play catch up, hence not having your notes from your initial appointment etc and feeling unlistened to.

In truth, you are going to be hard pushed to see the man himself . I have had one face to face with a member of his team and thereafter, it has been phone appointments.

You have two choices. Either bear with C&W and see where you get to. Or pay private.
C&W are meant to be one of the best, but I don't believe they are right now.

The nurse could of suggested an alternative progesterone maybe? Can you cope with the utrogestan side effects? Could you have a coil fitted for the progesterone element? Or opt for a hysterectomy?

It is all terribly frustrating and I feel for you. I am stumbling round in the dark too, trying to strike a balance, under the vague guidance of C&W!

Hi Nas

Sorry you’ve not had a good experience either. No I was never discharged. My first appointment was meant to be April 2020 and it got cancelled because of Covid and I was just left waiting.

I don’t want a hysterectomy, I can’t have the coil (I have pain down there). I’m looking into alternatives to HRT, so that I don’t have to take the utrogestan, or maybe I’ll just take the utrogestan to bring on a bleed in the meantime and hope I find a longer term solution.