Transitioning in South Wales.

[nikkit72]

Hi, I'm new here and looking for a bit if advice. Hopefully I've posted this in the correct section, so apologies if not.

I'm in the process of RLE (about a year) and am a bit disillusioned with the rate of progress through the NHS. I was just after a bit of an idea as to what to expect, not in terms of referral to Charing Cross GIC, but follow up appointments with the MHU in Newport. I've been down the GP>Local MHU to I guess the regional MHU in ST Cadocs, Newport, where Dr. Jamil is the gatekeeper for the next step which is, I believe, referral to CX GIC. My first appointment was in February 2013. I was expecting a follow up in June as was discussed in February so I could bring proof of name change and other items before commencing on hormones etc. Now, without phoning the hospital at the beginning of June to find out if there will be a scheduled appointment I think I would have been forgotten about. So, no appointment then, and was told that I'd make the September list. Phoned at the beginning of the month and was told that they weren't sure when the GD clinic was going to take place, but there should be one at the end of this month and I should be included. Guess what ? I've heard nothing yet. So I'm wondering if I've been omitted again. Only one way to find that out I guess..

Now, that may sound like a rant, it isn't, just a bit of background. What I'd like to know is if anyone else is experiencing or has experienced similar here in South Wales and what was done to move things on. I understand that the good Dr's hands are tied to a certain degree with the number of patients she can see in such a small available window of appointments,  and I do not want to aggravate the person who can progress me further through the NHS route.

Any help or advice would be appreciated.

Nikki.

[RosieD]

Hiya Nikki,  you must be close to me, there isn't that much of the country covered by Dr Jamil. I am in Chepstow.

You will find that you need to make the phone calls and follow up yourself to maintain a reasonable schedule. I am not sure why but by staying polite, always asking when to ring back and then ringing back when the letter doesn't arrive seems to be what's needed. The next step after Dr Jamil will be a referral to Dr Oboubi at the Royal Gwent. Referral letters and appointment slips don't tend to make it into or out of there either so you will need to make the phone calls again. Dr Jamil's secretary was really lovely and faxed tye referral letter to Dr Oboubi's secretary and Dr Oboubi's secretary is super helpful to.

On the plus side, you won't have to travel to Charing Cross to get HRT.

Rosie.

[nikkit72]

Hi Rosie,

Thanks for replying, that's really helpful. Having phoned Dr Jamil's secretary, who was really nice, at the beginning of last week to find out about September appointments, I was unsure whether to pester her again this week as it's mid month already, but I think at this stage it would be best not to get on her nerves and hope the letter does get sent out as she pretty much said that I should be included this month. I really do hate the anticipation, but hey ho....

I take it that Dr Oboubi is an endocrinologist ? It's good to know that I don't have to travel to London for HRT. Saves a whole lot of hastle and much needed money.


My Dr was right when she said that there must be something in the drinking water here when I approached her about my GD. I'm in Chepstow too.

Thanks,

Nikki.

[RosieD]

If it were me I would ring Dr Jamil's secretary and apologise for being a pain but...

Dr Oboubi is an endocrinologist. There is another delay between Dr Jamil making the referral and actually getting to see him. It was about three months for me, with the phone calls to follow up.

LOL - two in such a small town IS a bit of a statistical abnormality. Was this at the Vauxhall surgery?

Rosie.

[nikkit72]

In that case, I'll phone first thing on Monday morning and keep politely chasing from there. Seems the hoops that we have to jump through to get any where are more like tunnels..

It wasn't Vauxhall, it was Mount Pleasant. That month, the Doctor referred 3 to Dr Tyson at Hywel Dda MHU. I was the fourth. So, it's either the water or nuclear seepage from Oldbury across the Severn  We're everywhere...    (been itching to use smiley icons for a while)

After referral to Dr Oboubi, is there much of a follow up with Dr Jamil, or it it then controlled by the GIC? Sorry for all the questions, it's just that things always seem to be done differently here in Wales and it would be good to know what happens a bit further down the line.


Nikki

[RosieD]

If in doubt blame Oldbury.

I am not sure what the normal procedure is after referral. Dr Jamil gave me the referral and said see you in a year. Dr Oboubi gave me a prescription and said see you in four months. The local pharmacy said can you come back tomorrow as we haven't got the Gosrelin here at the moment and tue nurse at the surgery had to ask a doctor how to administer the Gosrelin.

I do not know for certain but I suspect this may be partially due to me being a late starter who just got on with transition and has dealt with any issues as they happened. Either way it is very different from what was last recommended by the assembly.  I would be interested to know whether things differ greatly for you.

Rosie

[nikkit72]

Well I'll possibly be in the same boat as you with the late starting and all. So, first things first, some polite pestering on Monday morning for the next appointment with Dr Jamil and see where I go from there. I will let you know how I get on and whether anything will be different.

One thing is for certain, it's a series of procedures that need severe improvement.

Nikki

[nikkit72]

Anyhoo, an update... Tomorrow,  I have my follow up appointment (after a bit of polite prompting) with Dr Jamil where she will hopefully refer me for hormones. Gotta remember to take proof of my RLE so far.

[Seras]

There is a post requirement to be able to PM people. It might even be 10 posts, I know it is on some forums, so maybe you can PM now...

As for your OP I would like to make some comment about how Wales sucks and the South East is so much better but unfortunately Charing Cross is probably worse

[nikkit72]

Nope. Still doesn't work. I'll keep looking for posts to reply to. 

As far as the pathway in Wales is concerned, it looks like I'm in for a long ride. unless I win the lottery. I hear theres better odds on the Irish one.....

[Seras]

Yea I ended up going private now. Getting messed around by the NHS for 2 years or so and them wanting to make you jump through their hoops got old pretty fast.

[nikkit72]

Unfortunately, only a lotto win, inheretance or selling a kidney would allow me to go private.

[nikkit72]

Unfortunately, only a lotto win, inheretance or selling a kidney would allow me to go private.

[nikkit72]

D'oh, reposted the previous post. That'll teach me to post on a phone !

A quick update.. I saw Dr Jamil, who was absolutely lovely, and, just as Rosie said, am now being referred to endocrinology at the Royal Gwent Hospital instead of CX in London. Yay ! I then get  follow up with Dr. Jamil in 6 months.

[RosieD]

Six months? My word that is quick. She told me to come back in a year. Mind you that was getting on for six months ago. Congrats! The post between St Cadoc's and the Royal Gwent is appalling so it is another thing that is worth following up with a phone call. I have Dr Oboubi's secretary's phone number if you want it.

Rosie.

[nikkit72]

Oooh yes please, I would like the phone number. She said she would get the referral typed up today, so it would be nice to have it on stand by if I haven't heard anything by tomorrow morning. Impatient ? Moi ? 

Anyways, I can now respond to PM. In case you haven't noticed I managed to respond to your PM from yesterday.

Nikki