Scottish NHS waiting times

[smallcat]

Hi all, I was wondering if anyone else out there is getting treatment in Glasgow or anywhere in Scotland and what their waiting list times have been. I am really upset by our treatment level so far. We went on the Glasgow waiting list in Feb 2013, I had an initial consultation in June 2013 and then nothing else until I enquired and we were finally seen for tests in Dec 2014. We have now had three appointment for routine tests, in Jan and March 2015. So in all we have been waiting for over 2 years since referral in 2013 and still have not been given a start date for our first ICSI cycle.

At the March app finally spoke to the main doctor who told me that because I turn 40 in August they may only have time to give me one free cycle of ICSI before I turn 40. So I pointed out I have been waiting since I was 37, to which he said "not the waiting time is down to 1 year" and then assured us they would push on and get our cycle started soon. But first I was to be sent for a routine scan and my husband for the sperm extraction test, as it's ICSI. Cut to this week when we both attended my scan and asked when h would be going for the SE test, and consultant says oh there's no note of that I'll have to check but there is a 2 month wait for that procedure. Cut to many phone calls later and she told us he now has an app on 22nd April. Oh well only another month wasted then! I am so annoyed at them seeming to palm us off month to month and not be clear about the timescales. I have sent a long email to the doctor's secretary asking for them to clarify if I am eligible for 2 funded cycles or only 1. Also I am seeing my GP tomorrow to ask her advice about how to appeal etc.

You see we have always known our only route would be ICSI from day 1 due to the nature of my h's condition. So really the doctor should have had him on that wait list since day one. There is no excuse for this extra wait.

[Hopeful1982]

Hello smallcat, the wait is do frustrating isn't it!

Iwas referred to GRI in April 2014 and we had our first appointment in January 2015.

In the time between our initial referral and first appointment we went to the GCRM (a private clinic in Glasgow) and had all of our tests done there. Although we had to pay, we felt it was well worth the money as it gave me the peace of mind I needed while we waited on the NHS.

It also meant that when we had our initial NHS appointment at GRI in Jan 2015 that we didn't need to repeat the tests and, as we we had been ttc for 2 years with unexplained infertility, could progress straight to IVF/ICSI.

I was told the waiting time for treatment at the GRI was 9-12 months from that point but we could be seen quicker if we went to Edinburgh or even sooner at Dundee. So, we opted for Dundee. We were referred in January and had our consents appointment on 16 March. We're now waiting on a date to start. Whilst it's great we've had this option to me it demonstrates that Glasgow doesn't have the capacity to deal with the number of patients it has waiting for treatment. I think the west of Scotland really needs another option!

I'm not sure if any of what we did is an option for you and it sounds like you will be starting treatment soon anyway but I thought it might be helpful to share for you and others in our area. I would certainly push to have both rounds (if necessary) as I agree that you shouldn't be penalised for the length of the waiting list.

Take care and good luck. Here if you want to chat x

[smallcat in reply to Hopeful1982]

Hi Hopeful1982 and thanks for your reply. I only wish I'd been aware that we could have done the tests at a private clinic as we certainly would have gone for that option. It didn't occur to me to go to a clinic first as I thought the NHS list option was the first approach for us. I am still stunned by the doctor saying that waiting lists are now 1 year as surely that should mean that people waiting 2 years or more should be getting prioritised and back dated. It just hasn't felt joined up at all, and have seen three different people at GRI during out consultations and tests who do not seem to have the same information on our case.

Do you happen to know if it works the other way: if you have all your tests done via NHS and then go private, would they accept those or put you through them again? Sorry to moan so much on here but it is so frustrating to be in the dark. There was no general information on the NHS or private options given at the start of our process which would have helped us to know what to expect. I'll just be so happy to have a start date for the cycle. It's also so I can put in for days off at work, which are not easy to get.

[Hopeful1982 in reply to smallcat]

Hi Smallcat,

I found it difficult to find information at the start too but I had heard of a few people who went privately so I started to look into it. I know for you it must feel like it's a bit late now but it's good to know these things so you can advise others.

I believe the private clinics accept NHS results too. The only thing they like to repeat is the sperm analysis (I think because it can change). My DH has got so used to doing this that I think he's almost disappointed when we have an appointment and he's not asked to produce! Lol!

You can also arrange to transfer frozen embryos to other clinics if you run out of "go's" on the NHS or opt to change. FET will be cheaper at a clinic than a fresh cycle but there will be storage costs. They usually have price lists on their websites.

Sometimes you need a good moan. It doesn't sound like the process has been very smooth for you so I can understand your frustration. Especially since you've been in the system longer than me yet we're likely to start around the same time. That would make me want to scream so feel free to be annoyed!

Its such an emotional experience, but you are nearly there so keep plodding on!

Take care and best of luck with your cycle x

[Naaa in reply to Hopeful1982]

Hi there, thanks for the info. How did you find GCRM?

[Hopeful1982 in reply to Naaa]

Hello Naaa, I sent you a private message.

[Naaa in reply to Hopeful1982]

Thanks. Visiting open day this month. Here it begins..

xx

[debs1082]

Hi smallcat, my story is similar to hopeful1982... We were first referred to GRI in Dec 2013 and had all the tests carried out there aswell as having a laparoscopy for endometriosis excision to see if that would help us with ttc naturally. It didn't so we were recommended to go straight to IVF as fertility drugs were not suitable for my condition. We were asked if we would be willing to travel to Edinburgh or Dundee to speed things up. We said yes and signed consent forms for Dundee in November 2014 and started IVF January 2015.

You do seem to have been on the list a long time, we were told by GRI that the waiting list was around 1 year once IVF / ICSI has been recommended.

You're doing the right thing, keep asking questions and you'll hopefully get some proper answers. Wish you all the best. Xx

[Hidden]

Hi,

I started my IVF treatment at GRI in the summer last year and if there is one piece of advice that I can give, it is to keep phoning them for updates. I was under Dr Vani and felt that initially, I was being passed from one secretary to another and referrals or notes were not being passed on to my file. I had a phone appointment with my local GP for another matter and mentioned to her that I was concerned everything was taking so long and immediately she contacted GRI for an update,got one,called me back and explained that a letter was on its way to me with an appointment. I also called GRI myself immediately after and for once they knew exactly who I was and could tell me my appointment date over the phone.

You really have to keep pushing them for updates so don't be afraid to keep contacting them.

Happy to report that my first cycle worked and I am due my baby any day now!

Good luck and keep on at them!!!x

[smallcat]

Thanks so much for both your replies. Yes just feels like we have slipped through the net somehow. Still no email response to my enquiry I sent last week. Saw my GP this morn who is very nice and sympathetic but didn't offer to enquire for me. She suggested waiting for a response from them and that if that wasn't acceptable I could consider appealing by sending a formal NHS complaint.

If I don't get a reply soon I'll phone them again. Why does it feel like such a battle, if I'd known it would be this way I would have gone private a year ago.

Anyway, I'm so glad to hear positive stories and congratulations on your pregnancy, brilliant news. xxx

[Hopeful1982 in reply to smallcat]

I would keep phoning them smsllcat. We had our consents appointment on 16th March and if I've not heard anything by next week I'm going to call and ask. I did ask the consultant at our appointment when we were likely to hear but he wasn't sure as they have an office manager who deals with that side of things, which is fair enough. So, as I see it, there's nothing wrong with phoning and asking the right person for the info. It's your treatment.

You don't neerd the stress of making a complaint. It does sound like you've slipped through the cracks a bit but you are where you are and what's important is getting back on track and a rough timetable of when things are likely to happen for round 1.

Round 2 may not be necessary so I would leave the 'what ifs' and potential appeal to one side for the time being. It will only stress you and that's not what you need at the moment.

Take care x

[smallcat]

Thanks hopeful 1982, You're right. Getting back on track for cycle 1 is the priority. The person I sent the email to was away so I have now sent it to her colleague who has responded and passed it on to the doctor. I have also been emailed by the people who are doing the sperm retrieval test in April and just fired off some more questions to them on likely time scales etc. So seem to be getting somewhere now.

Going to return to my Acupuncturist next week and hopefully feel less worried by then.

Thanks for all the support, much appreciated.

xx