Hi ladies just wondering if anyone knows the answer to a question I have?? Does the 18 week treatment guidelines start when you're told you need treatment/operation or does it start when you get put on the waiting list for surgery??? I've tried contacting pals at my hospital but they can't/won't answer the question!!
Does anyone know the answer to my question?? - Endometriosis UK
Does anyone know the answer to my question??
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i was told on the 31st march i need a hysterectomy ,went for my pre-op so the 18 weeks start for me from the 31st march.
sending hugs
x
Thank you ladies that's what I thought....I'm now at 22 weeks and counting since being told I need a posterior and anterior prolapse repair and clear up!! The waiting times manager keeps fobbing me off and pals are ignoring me and I've just about had enough!! I had my pre op on the 23rd February after being told on the 18th November 2014 that I needed surgery....at the pre op she told me that the surgery would be very soon but still nothing x
I don't think that they are allowed to do that. I very recently had my first laparoscopy. It got to 18 weeks and that week they called and said that they wouldn't fit me I'm stated time so they had to pass me to a private hospital where I had my Laparoscopy 4 days after the call. I would call them and tell them you are over your 18 weeks and they promised to see you with that time and see what they say x
Thank you, I emailed the waiting times woman at the end of march and she said she was fully aware of how long I'd been waiting and that she would aim for early may but I would need to be patient!!! I got a letter yesterday telling me I need another pre op assessment.....it all seems such a mess and this op is to repair some of the mess they caused when they removed my womb and cervix!!! I shall call them tomorrow and find out what's going on!!!
Thanks x
Wow I didn't even know about the 18 weeks. That's very interesting.
I waited 7 months from first hospital appointment (I was just reading about when it starts). I was never given any other option except to wait - no private hospital or even acknowledgment that I'd waited so long.
As there is this time scale, the NHS website I read said if you go beyond that time they 'must' investigate!
Yes they do that's a timescale given to them by the government that they have to meet or refer you tom somewhere that can fit you in. I think they try and keep it quiet because as a patient you feel all you can do is wait, it's wrong x
Thanks Mummy1982 - that is how I felt... As if I should wait and be grateful. I never made a fuss because I felt I should just wait my turn, if you know what I mean. The wheels definitely turn slowly!
I am grateful, but from seeing my GP to op date was 11 months and I was housebound for the last 3 months of that. It feels like a terribly long time when you're in such bad pain.
I hope the OP gets her date very soon!
Oh poor you . I had a similar experience have been in chronic pain for a year then when had a wait to get my refer and then obviously the 18 weeks for the laparoscopy. Did you get treatment in the end?x
Yes I did. I had a lap with excision in Nov and had the mirena put in. Period and ovulation is a lot better. I'm still in back/hip pain and was told I'd need another op to remove a fibroid that's growing on the outside of my womb... So I'm not sure if that could be causing that pain or not. I have a follow up at the beginning of July (was meant to be in May... They are very backed up).
Date of referral....and in Wales it's 26. Although, I got referred by GP, op 6 months later, referred to more specialist, op 8 months later, screwed up, 4 months on and waiting for recall....so I think it depends on the area and resources. Phone the secretaries, they'll tell you roughly where you are on the list.
p.s. I was left on someone's desk for 4 months and only seen as I chased it - nice way to keep waiting list stats down!
Thanks ladies....I've tried the secretaries and was tol only that I was marked as 'soon' on the list and that I must chase the waiting times manager and all she keeps saying is it'll be in the next couple of weeks....then that time passes and I don't hear anything and when I contact her again I'm told the same thing again and again!!
I don't want to be seen as a moaning whining patient but I've been struggling on with this for years and everytime they fix one thing something else seems to go wrong....in her last email almost a month a go she said ' I appreciate that you're in pain but you need to be patient'!!
Thanks ladies for your replies
Xx
What exactly did/does PALS say? What reason do the give for not answering?
Seeing as PALS and the waiting list manager are useless. I think if you want to pursue it you'll have to go over all these people's heads to the chief exec or head of the Clinical Commissioning Group for that hospital. Also whoever is the head honcho for that hospital itself (like who manages the day to day running of it).
Tell them tgat you've tried PALS and the WL manager without success. You can quote the NHS website at them - the 18 weeks and how they are meant to investigate it blah blah.
Hi Mabes
I actually heard back from pals today who are basically saying that because there was a hold up in putting me on the waiting list due to my pain consultant not replying to my gynae surgeon for ten weeks (the letter sat on her desk for 8 weeks before she did anything) that I wasn't actually put on the waiting list until 29th January! So as far as they are concerned I'm under the 18 week waiting time and that I shouldn't have been told by the consultants secretary that I had been bumped up the list due to my long wait!!! They've said today that I will get a letter in the next week or so with a date but it will probably not be until June!!!!
If I'm honest I'm feeling really fed up and messed about through no fault of my own!!!
Thank you for your advice
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