Time for a rant: Just had email to say... - Endometriosis UK

Endometriosis UK

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Time for a rant

Dillweed1 profile image
12 Replies

Just had email to say consultant hadn't dictated the letter after my private referral 7 weeks ago so instead of surgery being next week I will have to wait until July. Since the pain from my endometrioma has been ongoing since December and I've seen 3 consultants already I am feeling a bit more than peeved. So do I wait until July even though my legs keep going numb and my back is killing or do I try and see someone else privately? We're due to go to France in July and can't believe I might have to cancel.

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Dillweed1 profile image
Dillweed1
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12 Replies
jalo69 profile image
jalo69

Ring them and insist on having a first refusal on the cancellation list. If I'd paid private I'd expect my treatment to be faster it's not good enough that their mistake inflicts on your holiday. Hope you get seen sooner good luck:) j x

Brownlow profile image
Brownlow

Oh Dillweed, I'm so sorry. That's just outrageous and unprofessional. I also blame his admin team. They should have a system where they alert him if they receive no dictation following a consultation but I find the world of doctors very outdated in this respect. I have had problems with my doctor too and have ended up doing his secretary's work for her when dealing with questions from my insurance company. She left out loads of basic info they needed. My doctor also took 10 days to call me despite an urgent request...and I'm paying!! I think this sort of lazy, sloppy management is very common.

I guess it depends on how 'happy' you are with this consultant. Presumably very unhappy right now. It doesn't exactly inspire confidence. Maybe hedge your bets and contact him to loudly demand priority and then see someone else and see what you think and how quickly you can get an op.

Really feel for you. I was thinking of you earlier and the frustration you felt waiting for a date. x

That is horrendous!

In your position I would make a formal complaint. And definitely contact the PALS department.

If I had the money, I would pay privately if it meant a reduction in my pain levels.

I really feel for you. Massive hugs.

Barbara x

Dillweed1 profile image
Dillweed1

Thanks ladies. I think I shall just have to wait. Unbelievable really. I've emailed him back asking him to do it as an emergency, will have to wait and see his response next week. Work are not going to be happy. I honestly don't think I can cope with seeing another consultant. At this rate I shall be doing yoga all day to calm myself down!!

stevieflp profile image
stevieflp

That is incredibly disappointing/stressful. I really feel for you. Fingers crossed he will be able to get you in as a priority. Why should you have to suffer because of their oversight. Love to you x

Dillweed1 profile image
Dillweed1 in reply to stevieflp

Thanks for that. I still can't believe it really. Such a fiasco!

daffodil profile image
daffodil

This is really unacceptable if you are paying privately -I would immediately make a formalcomplaint to hospital.Sadly I was about to post my own,very similar rant re the Nhs.It is shocking to hear so many stories of negligence,mistakes and just plain poor communication and that that we are the ones suffering.

I have been in extreme pain since last October,was hospitalised in Dec with kidney infection,burst cysct and endo flare after stopping Depo Provera.Sent home and Gp told to refer me to a general surgeon,who at least had me scanned and put me back to Gynae.I have been awaiting an urgent appointment since end of March as scan results show abnormalities in womb,cervix and ovaries and have been expecting a phone call.Last week I called to check as had expected to hear sooner,to be told ( for a second occasion this year) that there was no note of me on the waiting list and it turns out the letter to gyna requesting urgent appointment for hysteroscopy and colcoscopy had been filed as dealt with! It has been sitting 6 weeks and I was not on the list! Thankfully. after a week trying to get through and leaving answerphone messages,which do not get answered my Gp stepped in and now I have a clinic appointment for Tuesday,but another wait for the biopsies.

I am in such agony and like you its affecting my whole life -its shocking that there is so much inefficiency.Do we not suffer enough with endo without having the frustrations of so many mistakes being made.If I was paying for private treatment( not that we should expect anything other than excellent treatment anywhere!) I would be insisting that you are squeezed in asap - with a polite suggestion that your MP would be interested in your treatment.I once compained to Alex Salmond re another health fiasco,which nearly cost my life and within 3 days had a response from Nhs.You should not have to wait due to a surgeons mistake and have a right to have your holiday as planned.

Please let us know what happens.Sending you a big hug.

Dillweed1 profile image
Dillweed1 in reply to daffodil

Thanks daffodil. It is awful how many stories we hear of incompetency. Meanwhile we're left struggling in pain. Although I saw him privately he wouldn't operate privately as he said he wanted the resources of a large hospital incase it goes wrong! Reassuring!! He has at least emailed back and said he will do it mid June now. I might be ok in France after all. Will have to sit on my decking and watch the world go by. Which is about all I've been doing since Christmas! It certainly can stop you in your tracks. I hope you get sorted soon too. Xx

daffodil profile image
daffodil in reply to Dillweed1

Heres hoping you can have op done mid June and be fit enough for your holiday.Suppose surgeon being sensible re having back up of large hospital.I have a friend who had life threatening heart problems and paid privately as couldn't get appointment on nhs soon enough ,only to have the procedure done in private hospital and have to be blue lighted to NHS hospital due to complications that private hospital unable to deal with!

I have my gynae appointment tomorrow,so at least ball rolling and am thinking only will be a wee look as procedures are done at the day clinic,but at least the ball is rolloing after such a long,anxious wait.

Endo certainly does stop us in our tracks.I am already long term ill/disabled due to ME and Meningitis so I am pretty much permanently stopped,though my new power wheelchair is giving me great sense of freedom on the days I feel able enough to get out of the house.To some extent I just take a day at a time and go with the flow and at least I don't need to worry about having to get back to work now.

Do keep us all posted on how things go for you.Sendig you a big hug.xx

Dillweed1 profile image
Dillweed1 in reply to daffodil

Thanks daffodil. You're right- one day at a time- not always so easy though. Good luck with your appt. xx

daffodil profile image
daffodil in reply to Dillweed1

Thanks -will keep you posted.Yes,one day at a time is never easy.Hope you are finding ways to cope with the pain,while you wait?xx

Brownlow profile image
Brownlow in reply to daffodil

Good luck with your appointment Daffodil. x

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