8 MONTH waiting times…: I saw a pain... - Fibromyalgia Acti...

Fibromyalgia Action UK

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8 MONTH waiting times…

PenelopeClearwater profile image

I saw a pain clinic consultant two months ago and he referred me for nerve block injections in my abdominal wall and groin… after speaking with pain management yesterday, they advised me to follow up on the appointment as I haven’t had anything yet. I’ve just been advised that the MINIMUM waiting time is 8 MONTHS!!! So the soonest I can expect to have some relief from my constant pelvic pain is mid-October!!!

I am absolutely appalled and upset… bloody ridiculous. I feel like all I do is battle with the NHS. What with being perpetually exhausted anyway, this is just shattering - I’ve got no more fight left!

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32 Replies
KimiJay profile image
KimiJay

My D in law had a similar big op after giving birth by csection. She also had fibroids/endo and knew that the muscles would be affected as she gets older. - Do you need to go back to the hospital to who did that op and demand a further investigation with a new specialist. The muscles might need rebuilding???? The pain may not just be due to Fibro. Contact your MP if no joy. Good luck.

Arymretep profile image
Arymretep in reply to KimiJay

Not much point they blame everything on Covid these days 😳

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Arymretep

as someone that has just benefited from an operation that has been delayed by the impacts of covid I can really sympathise with them. I got myself escalated due to clinical need, spoke to team and made myself available to have the operation at any hospital in the area and at any time and managed to progress up the waiting list.

Covid has limited theatre times i.e running one rather than 2 so 50% cut, surgeons being dragged to other roles so again less slots, and a massive backlog to add to it. Procedures in Scotland which still has stricter covid practices in place mean that in a waiting area that could potentially accommodate 30 there were two patients sitting and a well defined process to see me that was very much limited in how it allowed contact and potential risk to staff / patients.

I waited 8 or 9 months for a 15 minute op and felt at times really desperate and worried about going blind. I have never considered myself disabled by fibro but I was definitely disabled for the last couple of months and have a new found perspective.

I really appreciate the NHS and while the waiting was intolerable and will be different for every one, lets not be getting in the default position of disbelieving people just out of hand. I had interactions with about 12 - 15 people over about 3 hours and am so very grateful for their help and the change it has made to my life.

did not mean to type so much ....... PenelopeClearwater Keep in touch with the medical secretary and explore options but it may not make much difference but if they do not know how it will impact your situation they will not be able to adjust their assessment. On my way to Specsavers to get a further assessment so they could see what had changed I nearly got knocked down by a bus that I did not see .... that I really should have. This may heave helped in the supplementary notes that the optician supplied.

PenelopeClearwater profile image
PenelopeClearwater in reply to desquinn

Thanks, Des

I’ve let them know I’m not happy about it and that it’s impacting my well-being. We shall see…

I don’t disbelieve them - I’m just so upset that I have to wait so long. I have great respect for the NHS - many of their staff are amazing, but I think far too much money is put into lining the pockets of the management structure - having seen several NHS workplaces, I know that there are a lot of overpaid “managers” who take away from the productivity of what should be a wonderful institution. I found that way before covid, it was the lower band staff who wanted to do the best by the patient - the higher up you went, the more inept the staff became.

That said, I do feel very let down by the NHS, what with the sexual harassment, the handling of the harassment, and now this… it’s been a very negative experience thus far. My new GP practice is wonderful, though - everyone is friendly and helpful and the place is very inclusive of people with different abilities, different backgrounds, religions, language, LGBTQ+… etc, so I’m not just here to NHS bash 😁

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

Hi Kimi

I definitely don’t think it’s was just fibro - I think there’s nerve damage (or more) from the years of endometriosis… I’m still going through arbitrary examinations etc, but they don’t want to cut me open and look at the mess 😅

KimiJay profile image
KimiJay in reply to PenelopeClearwater

That's another invisible disease too. If men got it, well it might be sorted by now. I think I cannot imagine what it would be like to suffer with this. Just the normal monthly was enough of problem. Hope you get sorted soon.

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

I had a full hysterectomy 3 years ago, when I was 33. I really hoped it would stop the pains and to a certain extent it did, but the nerves were already damaged from having endometriosis for about 17 years and just being told to “get on with it - all women get this”, or “just get pregnant - that will sort it out”… the response you get to female-only conditions is laughable 🙄

KimiJay profile image
KimiJay in reply to PenelopeClearwater

It's cruelty!

jackiesj profile image
jackiesj in reply to KimiJay

sadly the wheel that squacks gets fixed... most of the time, im a suspicious if documented were they already paid?Here in the states i know that there are less health care workers also.Maybe ask the doc if there is something else they can do NOW.

KimiJay profile image
KimiJay in reply to jackiesj

So right! A direct approach might be more effective for all women especially - 'now', interestingly, being an extension to the word 'no' which we should all use more. We certainly do need to squeak like a broken record and keep on squeaking. - UK is probably going to lose its NHS if the present regime remains in power because their kind can all afford to go private and they would want to make a profit out of it (and us). We could be on the same footing soon as USA as a lot of American companies want to buy a stake in it.

Arymretep profile image
Arymretep

Glad you eventually had your op Des, my OH had to wait for months too until he went to a different hospital than usual when there was a cancellation, the staff when he actually had the op were wonderful , it's not the staff is the problem.Hope you are well now.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Arymretep

OP was on Monday and getting better each day thank you.

PenelopeClearwater profile image
PenelopeClearwater in reply to desquinn

I hope you’re resting up!☺️

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to PenelopeClearwater

You do not know me then :) I very nearly came into the office less than 2 hours after the op but was in next day at a relatively late 8.30am. Meant not to do anything strenuous...... lawn bowls and washing dishes were mentioned ..... I am younger than their normal age range on the bowls side of things :)

However, fate played a trick and was involved in changing a car tyre but still standing and much better than I was pre op :)

PenelopeClearwater profile image
PenelopeClearwater in reply to desquinn

😆 maybe that’s the reason we all have fibro - we all work too hard and push ourselves too our limits!🤣

I hope you at least treat yourself to your favourite food and get *some* rest 😉

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to PenelopeClearwater

there have been a number of observations about the frequency of type A / overachievers that occur in our community but not sure if that is some sort community self appreciation bias :)

PenelopeClearwater profile image
PenelopeClearwater in reply to desquinn

Also, I have heard that lawn bowls is no longer just for the elderly, I believe it’s the new popular pastime 🙂

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to PenelopeClearwater

I used to play it as a kid and watch the Scot with the moustache winning everything. Keep on meaning to consider it once more. It is almost age appropriate for me :(

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to desquinn

Well there is a bowling club just over the back from the office 🤣😂🤣

PenelopeClearwater profile image
PenelopeClearwater in reply to Hazel_Angelstar

Office team!! 😁

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to PenelopeClearwater

Don't give him ideas lol

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Hazel_Angelstar

Will get Lynda on it and we can havea sponsored nearest to the Jack 🙄

Flowerinbloom profile image
Flowerinbloom

I actually called my consultants secretary yesterday and got an appointment in 2weeks time.I have been waiting also for months

I am sure if you call them direct and explain that you simply cannot wait they will giv you an appointment ASAP.

It’s certainly worth the call!

When I last saw my own consultant she gave me the direct number to her secretary if I needed to see/speak to her so it’s 💯 an option.

Good luck getting seen sooner rather than later x

onebigvoice profile image
onebigvoice

This seems to be the "new norm" which I hate the use of that term, but, instead of the NHS complaining about the cuts to save money because of the cost of the pandemic, we are again being left on the brunt end of every thing. Just before the pandemic I was being prepared for an operation to my spine, and they were deciding whether to do that and the liver operation , an open up once do two op's or do the other spine operation first, to get to that stage took 2 1/2 years, the last appointment which was to discuss the plan I was assessed and had all my benefits removed, including my mobility car, I have since after another battle of two years got my benefits back only to have me bumped down the waiting list only another 2 years went by. and 6 months ago been told that the doctor has put me back on his waiting list, yes you guessed I have to start all over again with diets, and exercises, " to build me up" what did they think I was doing in the last 3 years while I have been waiting for another appointment? Like you I understand the list is getting longer but the only way to fix the system is to add to the list but also long waiting sufferers should be seen as well. So you are working from both ends of the list. In your case how long would it take to have an injection, if it can't be done at your surgery then either other surgery's that have similar people, you could be sent their or your A & E near you as a walk in appointment and get a nurse to give you the relief you so obviously need now. I'm not desperate for surgery and have learnt to cope as best I can, but the system is never going to catch up when you think of the cost of assembling these Nightingale hospitals around the country, how were they going to man them and why when built half were never used and just taken down again? People have short memory's when it comes to the amount of money SQUANDERED on PPE bought by the government and condemned by HSE as unsuitable? MILLIONS OF POUNDS FOUND FOR THAT, then there was the purchase of masks which going to your local shop costs pence each or per box yet purchased at pounds a box. More money squandered? How did we respond to the NHS who risked their lives to look after our loved ones some times at end of days? Give them a pay cut, increase their hours without an increase in anything. Time off with pay? No they are still paying catchup? Complain to your MP, and keep complaining till something get done to inject resources back into the NHS not remove them unless you take out a private insurance policy. BY THE WAY, THESE POLICIES DO NOT TAKE PREIXISTING CONDITIONS.

Arymretep profile image
Arymretep in reply to onebigvoice

According to the papers yesterday, private operations soared during the pandemic, when Surgeons had time on their hands

PenelopeClearwater profile image
PenelopeClearwater in reply to Arymretep

If I could afford it, I would go private. I love the NHS and don’t mean to have a downer on them, but I know they could be so much more effective - having seen the business side of things, I just wanted to get in there and fix things, but could only make changes to my own department at the time 😅

So many, in fact the majority, of the staff are incredible, but the odd bad egg gives the whole place a bad name.

Lakehouse5830 profile image
Lakehouse5830

They no not what they do. At the end of the day you made a start by phoning and being on a list. I know it’s not what you want but as I have said before someone in front of you may cancel and you will go up the list but it is worth once a week to ring ask if there is a cancellation it will not annoy the person that is going to treat you only the admin 😂 keep your name in there minds I know it feels like a battle right now but sometimes calls can jog folk along and do what I always do start by sounding sorry you have rang by saying something like. (Hello I don’t know if you can help me. ) (Oh I am sorry to ring I was hoping for an update on case)

The first sentence puts them sometimes into a yes I good at my job attitude and then the ownership of the situation. Have a few tiers ready to flow and let them hear you are not copping with the pain.

No one likes to hear people upset and if it’s another woman the compassion sets in a the need to help becomes greater.

It sounds silly but you are making the person on the other end of the phone hearing you as a real person and putting responsibility in their mind I find that over time if I open up on the phone when I need I get closer each time. I do hope you find you self with your golden ticket just reading your words and hearing your feeling of giving up has made me want to give you that appointment now don’t let it get you down and if you are feeling like giving up ring and tell them how you feel and remember you are going through hell so let your self know you are a strong person and you will get closer xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Remember that the discussion of politics is not some thing that is allowed on the group and this sort of discussion topic will always sail close to it. May have to lock replies if it continues to move towards politics.

Elizahl profile image
Elizahl

I do sympathise I am in ireland and was referred 2 years ago or more and all I have got is a letter to confirm I still want my appointment twice but no actual appointment. I've a few referrals gone in and nothing seems to come to fruition. If you want to be seen here you have to pay and it's a lot of money so I suffer on. I hope you get called sooner. The only thing I can think of is maybe contacting the secretary and pleading to be put on a cancellation list if they have one as you are suffering may work.

KimiJay profile image
KimiJay in reply to Elizahl

That's appalling! Is your MP any good?

Elizahl profile image
Elizahl in reply to KimiJay

Not unless you are in a seriously bad way will they intervene even cancer patients are being treated appallingly here they are blaming covid but.it was bad long before then and that just made it implode and become more visible an issue

Thank you everyone for letting me rant - I know it’s not the end of the world, but it’s so frustrating! 😅

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