NHS : Any advice gratefully received

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Grumpy

Joined
Dec 1, 2015
Messages
33
Hi,

I'm in a bit a pickle and would welcome any advise...mainly in dealing with the NHS and trying to find a way forward.

In Dec 2014 (!), I went to A&E with a bowel stricture meaning eating anything solid was..errr...painful. Now I've had a few bouts of Crohns before always ending in surgery but that means nothing...it's medical treatment first. So 9-10 months of medical treatment (still no solids, only liquids that pass through as you might expect for someone missing alot of colon), Guess what, didn't work - fibrotic stricturing.

So early Nov 2015, we all decided surgery was the only option...but that given my previous history I needed a specialist and not my local hospital. So I was referred...6 weeks 'til an appointment with surgeon (no rush obvs), wanted tests which amazingly took another 5 weeks (no rush obvs) with word that surgery would be early Feb...

But it's mid-Feb and no call. Not eaten solids for 15 months - even liquids give me a fair bit of pain and I can feel my stricture all the time (back pain so probably the bowel is attached to my back muscles) - I'm sure that the amount of bowel that I'm going to lose isn't going down. My local hospital medical team have dropped me because they say they can't do anything for me...the distant surgical team isn't doing anything and regards my treatment as elective because a couple of paracetamol might sort it out so surgery isn't necessary (had my pre-admission thing but no date for surgery), and I've effectively been barred from treatment at my local hospital. No one is reviewing or assessing me and I'm losing weight like billy-oh.

I have just lost faith in the whole system and in anything that is said to me and I am in total disbelief at the whole state of affairs. Any advice / suggestions would really be gratefully received because I'm completely at the end of my list. It worries me a little that when I get to the end of this farce, I then have to try and summon up the energy to cope with the surgery.

The only thought I have left is to eat something solid; then it'll all kick off for sure but it is starting to look like my only chance.
 
Sorry to hear your having such a rough time. If you haven't heard anything and was expecting surgery by now I would phone your consultants secretary and ask what is going on. Good luck.
 
Hi Grumpy, and I think agree with plittler, try ringing them. I was due my last surgery in Sept /Oct 2014 I eventually got it Mar 2015. Nightmare NHS at times. Keep mithering it's the only way to get anything done these days. I hope you can get this sorted out soon. Best wishes 💕
 
Thanks for the replies both.:thumright:

I could ring the 'Waiting List Manager' ( :facepalm: - might be nice if they employed some surgeons instead) but I guess they won't know any better and it's down to my surgeon. I understand he doesn't want to commit because he can only do it when he's on call and he doesn't know what emergencies he's going to have. I have a contact for him but don't want to abuse it, besides I think they give these things out as a security blanket saying 'If you get any worse, blah blah blah'. I've done that quite a bit over the last year with my GI and nothing happens, so I'm thinking something a bit more direct.

It always seems that I get stuck in this thing where the surgery is urgent not emergency. If it is non-urgent you get a date, if it's an emergency it gets done. If it is 'urgent' you can't wait for a date so you don't get one but then there is no indication when / if the surgery will actually happen. I reckon I'm losing 1-2 kg a week now so I don't really see I can wait that long...but then no one is actually reviewing me so how would they know what state I'm in ?

I'm thinking that I'll just go down to my local hospital A&E and get reviewed on a weekly basis or something...and they can taxi me the 50 miles up the road whenever they figure that I'm in a suitably poor condition for emergency surgery. :cool:
 
I'd say "Good old NHS" but my surgery was done privately and to be honest it was kind of the same. As you said "urgent" means they won't tell you anything; I think I got the date about a week beforehand.

Sounds pretty crap overall. You could try a different country. I hear France has much better healthcare.:(
 
Where are you being seen for your surgery? They should have an IBD nurse if they are a tertiary referral centre. I would start by ringing the IBD nurse- explain your pain is getting worse and make sure you make it clear how much weight you are losing. Weight loss is a red flag which increases the urgency of surgery.
The other thing is to ask to see a dietician at the surgical place, they can advise you on a regime to help reduce further weight loss but also may liaise with your surgeon.

I am surprised your local place isn't seeing you still. I am seen regularly by my local team but also seen at 2 tertiary centres less often. My local team have the overall picture and the tertiary centres deal with their specialist bit.
 
Grumpy said:
@DEmberton - interesting. If I may be so indelicate, how much was it ? I frankly have no idea and I undoubtedly don't have the means but I might stand on a street corner with a cap...
Click to expand...

It was mostly paid for by insurance, but I know the surgeon got £1100. The great thing was I had to pay £400 of it because he found and fixed a fistula; something the insurance company hadn't approved in advance. Apparently they're meant to wake you up in the middle of surgery so you can phone your insurance company.

Anaesthetist, nurses, 5 days in hospital, drugs, I imagine it was something like £8K-£10K.

http://www.netdoctor.co.uk/health-s...what-does-private-surgery-and-treatment-cost/

I was so frustrated by it all by then I would have paid for it by myself. As it was I don't think it made much difference. I was in the NHS hospital with the same surgeon anyway; being private just meant I got a private room.
 
^^^
Thanks for that and the links...very useful and it gives me some idea.

If I didn't have 2 kids who are just about to need putting through uni then I might be looking at that more seriously. It is a bit uncomfortable to be thinking that the future is having to pay for major surgery.

I'm currently slated for 7 days in hospital but I think my minimum has been 8 in the past so maybe £4-5k there plus surgeon plus anaesthetist. I'm not quite how the night in ICU that you usually get works if you're going private. So in my mind, I'm thinking £10k. Having said that, if it is so important to have this one surgeon because of my 'past history' of surgeries then is the guy going to want a premium, if he does private work at all that is.

So it's all a bit complicated. I'm trying to play with the figures in my head probably for the future...if I'm going to be paying that in a few years maybe I'll (do as you say) and move somewhere else with a better health system.
 
While my situation is not as bad as yours, I was being given the brush off for months when I was having major problems with urgency and pain. No one ever wanted to do anything about it. I rang the IBD advice line they have and was always just told to get a blood test and nothing ever happened. I was so fed up so I complained through my hospitals patient advice and liason service (PALS). They were on it right away and within a few days I was given an appointment with someone new. Things have moved on since then, albeit slowly, but I couldn't go on with being sent away when things were going wrong. I got told I shouldn't go to my doctor I should ring the hospital but I live directly opposite my doctors and they will always try and help me.

It's awful when people seem to just get passed over. It's like they want you to be at deaths door and screaming in pain before they will even contemplate taking a look at you. I really hope things get sorted out for you soon xxx
 
Thanks for the reply Evie.

I do get the feeling* that given the slow nature of treatments for Crohns, I can't help but look back and think that I've been groomed into having low expectations of treatment or service within the health system at times. Sometimes I feel myself getting confused between incurable and unmanageable. Crohns is manageable but it requires management.

Anyway, Evie, your post prompted me to look at my rights which has opened up whole new avenues to explore and try to precipitate treatment, so I thank you.

In fact, I thank everyone who has replied, it has truly been a great help and I feel more of an urge to go out trying to shake some fruit from the tree than I did last week.

:ysmile:





* (and I don't know how general this is for all conditions)
 
Go shake that tree. Hope it proves fruitful n you get the treatment you need and deserve. Keep us updated how u get on . :hug:
 
OK, so here's an update.

As advised by my medical team if my symptoms got worse, went down to A&E. They told me sod off. Medical team didn't want to see me because they can't do anything. Gave me the very practical advice that I should travel 40 miles to the hospital where I am allegedly having surgery on the off chance they let me in. Remember, can't take the car for if they do as there won't be anywhere to park it for a week or two if I have surgery. Not offered any transport. Since mostly I get pain at night, I (or my partner) would be doing this in the middle of the night. After so much time, I don't have the energy to play that stupid game.

I became aware that I am beyond my guaranteed treatment time. I put in a 'complaint' and requested that all possible measures be taken to procure the surgical services I need. Not heard anything after 8 days.

The NHS, like me, should be put out of its misery. If it is so under-resourced perhaps there should be an honest discussion of what it will cover and what it won't so that we can all make the necessary financial provision (in addition to paying for our kid's education and our old age - although to be fair, I'll be lucky to have an old age). It would be nice if personal costs were capped (which happens in some civilised countries) if we are forced to go private...and the whole NHS management of Crohns should be changed to reflect its impecunious circumstances.

Bit ironic that there has been alot of talk of increased provision for mental health on the NHS when it is the NHS that is the biggest threat to my mental health.

After 15 months of no relief from symptoms of intestinal blockage and not eating food, I have lost all faith. Anger is the only energy I have left. In the unlikely event that I ever get near surgery, I no longer know how I am going to answer a single civil question without exploding into expletives. :(

[/spleen vented]
 
I really do feel for you grumpy. I cant imagine not eating solids for so long. I know nhs horror stories from people I know and it does seem like something major needs to be done. Just a thought, when you complained was it through 'pals'? Im not sure if there the right place for everywhere but they did help a family member whos cancer was being ignored and left to spread at my local hospital.
I really do hope you have a better time of it.
 
Well Grumps. That stinks hun ,thats all i can say as im so piggin annoyed at how you have been treated, or should say not treated 😠😠😠
Big hugs 💕💕💕
 
I'm not surprised you are pissed off. It is a ridiculous situation. I agree there should be an honest discussion about how underfunded the NHS is and what/ how people are prepared to pay for.
It will never happen though as its too much of a political football and no one is prepared to lose votes to do the right thing.
I agree with complaint through pals. Could your husband take you to the surgical centre next time you need A&E??, or have a friend on standby??
 
Hi
Your experience doesn't sound dissimilar to one I had a few years ago between my local surgeon and Prof. Nichols at St. Marks. To cut a long story short i'd had the creation of an ileo-anal pouch that had failed and was constantly inflamed with pouchitus. The only cure for this was removal of the pouch and creation of an end ileostomy. Unfortunately neither surgeon wanted to take responsibility for the difficult operation and extendid stay in hospital. The local surgeon claimed it was St. Marks responsibility whilst St. Marks said they had discharged me from their care and I was their patient. Their followed a testy exchange of letters between the two surgeon s and a prolonged period of silence between them both. During this period I was intense pain and my bag kept leaking because of a loop ileostomy.This went on for more than a year ruining my life and extending the period that I needed to recover from my failed ileo-anal pouch.

The only way I managed to get the surgery scheduled was by making a nuisance of myself at my local DGH. My repeated admissions through A&E and letters from my GP and contact with my stoma nurse finally forced them to do something about it.

I'm glad to say the operation was a success and has greatly improved my quality of life. It's sad to say that in the NHS it's necessary to have some sharp elbows and make a nuisance of yourself. It does eventually work.

As to the longer term debate around the future of the NHS i'm lucky to have been referred to a private outpatients service that is paid for by the NHS. I think they use up any private capacity that your surgeon/GI has and pay a reduced rate. In addition, any tests that are requied are done through our local BUPA hospital. It's a great experience far better than the NHS one.

I hope you get the help that you need soon and you make a good recovery from any operation. Good luck

Tom
 
Tommy21bn said:
Hi
Your experience doesn't sound dissimilar to one I had a few years ago between my local surgeon and Prof. Nichols at St. Marks. To cut a long story short i'd had the creation of an ileo-anal pouch that had failed and was constantly inflamed with pouchitus. The only cure for this was removal of the pouch and creation of an end ileostomy. Unfortunately neither surgeon wanted to take responsibility for the difficult operation and extendid stay in hospital. The local surgeon claimed it was St. Marks responsibility whilst St. Marks said they had discharged me from their care and I was their patient. Their followed a testy exchange of letters between the two surgeon s and a prolonged period of silence between them both. During this period I was intense pain and my bag kept leaking because of a loop ileostomy.This went on for more than a year ruining my life and extending the period that I needed to recover from my failed ileo-anal pouch.

The only way I managed to get the surgery scheduled was by making a nuisance of myself at my local DGH. My repeated admissions through A&E and letters from my GP and contact with my stoma nurse finally forced them to do something about it.

I'm glad to say the operation was a success and has greatly improved my quality of life. It's sad to say that in the NHS it's necessary to have some sharp elbows and make a nuisance of yourself. It does eventually work.

As to the longer term debate around the future of the NHS i'm lucky to have been referred to a private outpatients service that is paid for by the NHS. I think they use up any private capacity that your surgeon/GI has and pay a reduced rate. In addition, any tests that are requied are done through our local BUPA hospital. It's a great experience far better than the NHS one.

I hope you get the help that you need soon and you make a good recovery from any operation. Good luck

Tom
Click to expand...

Just a thought, but what kind of analgesics are you on?
 
Oh Grumpy I really feel for you! I couldn't eat solids for about 3 months until I could get agreement that surgery was the only option and I thought that was bad!
Lucky for me I had insurance so could go private and the surgeon had a spot the week after but I was already really really grumpy by then. No idea what I would have been like if it had taken as long as it has for you! Certainly a civil conversation would be out of the question, as it was I had to bite my tongue quite a few times.

I really hope things get sorted quickly or that your complaint at least sets things in motion. If not I think having your partner drive you to the other hospital and leaving you there may be your only alternative....
 
Thanks for the support all, it really means alot. :)

There comes a time when you write things down and it's hard to believe them yourself...so it's nice to know that there are a few people who still don't think my story is too far fetched. I recall that there were some psychological experiments (I think by Skinner) in which pigeons were taught to peck at a button to get food and, after some time, the 'scientists' started giving the pigeon an electric shock when it pecked the button. The pigeon came to associate eating with pain and so stopped eating...I fear that I have become that pigeon and don't know if/when/how I'll start eating again.

I'm using this opportunity to upskill and so I'm tending to focus on that as much as I can so that, should this sorry episode ever be over, I can put it behind me and try and earn enough to go private. I've lost all faith in the NHS to provide treatment and I'm sick of the lack of honesty and shunting of responsibility. I am trying to cope with a crohnic (sic) illness. I don't really have the energy or patients (sic) for clever games of illusion by physicians in which you have to grab the treatment before it magically disappears before your eyes. I'm sure in the future it'll be worse not better. I'd get better treatment if I went to the local vet. Ho hum. What doesn't kill us makes us stronger etc...

@Tom. What are analgesics ?
The only time I asked about pain relief my consultant said :
'If you're getting pain, then the treatment isn't working'
This has gone into the list of stock Zen phrases that I have had from my consultant such as when he turned to me 4 months ago and said
'Make sure you keep your weight up for surgery'
and
'Good nutrition is the key to fast recovery after surgery'
when he knew I couldn't eat and every day was a painful struggle.

About 30 years ago, I spent about 4 weeks straight dosed up on morphine before surgery and had absolutely no withdrawal symptoms after (it isn't actually as addictive as you would be led to believe...but just say no to drugs, people). The last time I was ill, I had surgery without a single dose. I think the NHS knows how crap it is and know that if they start prescribing any kind of effective pain relief then you will be addicted by the time you're treated (i.e. they don't want tabloids knocking at the door)....and as a society, we're not even mature enough to have a discussion about cannabis. In my experience, pain relief outside palliative care is a complete joke (it's probably a complete joke inside palliative care too but I don't know about that).
 

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