Anyone successfully used the 18 week maxi... - Endometriosis UK

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Anyone successfully used the 18 week maximum wait guidance (NHS) to get surgery within a reasonable time?

Rockflower profile image
8 Replies

Trying to find out if anyone has successfully used this to help them get a surgery date sooner? Any tips?

Currently waiting for a laproscopy with a multi disciplinary team for endo and endometriomas to be removed (believe my bowel is involved). And been told the waiting time is exceeding 18weeks. I'm in touch with the patient liaison service at my hospital but feel I've probably got a fight on my hands...... I wouldn't mind so much if I wasn't in increasing constant pain due to cysts growing, awful flooring fatigue, and struggling to go to work and function! 

I can't afford to be off sick for months, so trying to fight my corner!

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Rockflower
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8 Replies
shazlovesevo profile image
shazlovesevo

Hiya hunni, I too was told I would have to wait about 18 weeks,  I went to see my Consultant in November and I am having my surgery in the 6th May,  23 weeks I've waited. Only way I could possibly think is if you got to see your gp and tell them that you can't handle the pain or that you cannot wait that long and they may write to the hospital to see if they can get you in sooner, good luck hunni xxxx

Rockflower profile image
Rockflower in reply toshazlovesevo

Thanks for the reply, sorry you are also waiting so long. Been to my GP and she seemed a bit clueless...told me to speak to PALS, which I'm doing. Just seems wrong they have this maximum waiting time, but that if you go over this, nothing is automatically done to get your surgery sooner! Complete farce. GP will write me a stroppy letter if needed but not sure it will help any.

dawntildusk profile image
dawntildusk

hi flowerpotts. unfortunately all u can do is keep pestering them. i waited from october for my op and mine was down as urgent. i only had by lap 8th april :-(. i think as u are also been seen by a mdt this may take longer for them to organise. u could speak to your gp to see if they can expedite it!

Rockflower profile image
Rockflower

That's awful you had to wait nearly 6 months. Again, why does the NHS have a maximum waiting time if nothing is done if you breach it? I'm pestering.... Sure PALS will be sick of me, ( been onto them today) but if they can't stick to their own rules then it deserves for us patients to fight for our rights. Ironically my clinic states on a news letter to GP 's that they once a month arrange the multidisciplinary surgeries so the patient has faster access to treatment!?! Not quite sure how this works then.....

Hollibob profile image
Hollibob

What about finding out who the secretary is and then speaking with them to go on a cancellation list or ringing every week to check?

Rockflower profile image
Rockflower in reply toHollibob

I have spoken to the secretary a couple of times. Just told there is no cancellation list as the automatically offer surgery to the next lady on the list. She can't give me any info on a surgery date, except that I'm number 6 on the multidisciplinary surgery list. Sadly in 5 weeks, none of these ladies have had their operations, so I'm still in the same position on this list! She let me know that their are still ladies waiting for surgery after 26weeks since their referrals.... Hence why I rang PALs last month to start my complaint...

Jodiex profile image
Jodiex

Your GP can chase up the referral I believe. Also are you on the cancellations list? If so I would be phoning every day to check for cancellations. Hope you get seem to soon xx

Alaine1 profile image
Alaine1

I also think though some of the surgery times have unfortunately been affected by the junior doctors strikes as I know several people in centres in London have had their surgeries cancelled at short notice who will obvious have to be priority when booking new dates for them. The all out strike next week is definitely going to have an impact on surgery cancellations and waiting times. I hope you get seen soon but I'm guessing the strike is something the trust and PALS will use alongside the fact that many endo patients are in the same boat unfortunately with struggling to work, increasing symptoms etc

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