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sarahfh

Joined
Sep 24, 2015
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Hi, this is really for those in the UK, but if anyone has any advice feel free to chime in!

How long did it take for you to get an appointment with gastroenterology? My referral was sent two months ago and I still don't have an appointment, I've chased it up three times already and twice I've been promised a call for an appointment within a week. Of course both times so far nothing has come of it (I'm only half way through the week for the second promise) and I'm just starting to get really fed up.

I totally get that I'm not considered an urgent case and that's fine, I've only had a small amount of blood and I'm young, and that's fine, but even with not being considered urgent two months without even getting an appointment date seems a bit of a crazy amount of time to wait, right? I've had one "red flag" symptom which is weight loss or around 8-10lbs, I've always been slim but my BMI now is like 15.3 and at the time of the referral being made it was 14.9, which I know is so dangerously low. I know the NHS is busy and overstretched, but I'm getting fed up of feeling like nobody cares or wants to help me. I guess I just wondered if anyone has had a similar experience or has any advice for me? Thanks in advance.
 
I am from the US and not acquainted with your system. Is there any way to call them and ask if there is a cancellation if they can fit you in?
 
The way the NHS works is basically GP has to refer you to a specialist, there are two routes, fast track for suspected cancer (2 week turnaround for an appointment) or the normal route. If I remember rightly normal route you have the right to have treatment started within 18 weeks of referral.

I've called three times chasing an appointment already and so far nothing, no appointments available. I can't afford to go private or I would.
 
I am in a similar situation - was told 18 weeks (3 weeks ago) for an appointment but that most hospitals have waiting times that are longer.

Fortunately I am on pred so I am symptom free at the moment so can afford to wait.

Did you find out how much a private appointment was? I am curious.
 
I was diagnosed 9yrs ago,and it took approx. 4mnths from GP./Hosp.Apt./Sigmoid test/apt with IBD nurse/meds.
In Aug 2014 blood detected in stool sample.....colonoscopy,MRE,ultrasound,ended eventually in Sep.this year.It's just a waiting game unfortunately.
If you feel really unwell a trip to A & E will hasten your treatment.
 
Hi, we got a letter next day after visiting the gp. newly diagnosed with no therapy coming from EU, The letter came with a user name and a password to book an appointment to the hospital on line , we choose from the list. The GP prescribed OCTASA and a pain killer while waiting, We booked from 21th of October for 07 January.
 
A trip to a&e will not get you a sooner appt if your symptoms have not worsened. They will investigate and treat any emergency and tell you to await an appointment. And you may get a flea in your ear.
If you got significantly worse and became an urgent referral, you should contact the gastroenterology secretaries who will inform the consultant of your symptom changes and they will expedite any appointment.
The guidance is you are seen within 18 weeks of referral, or if surgery needed seen and operated on within 18 weeks.
The problem is the NHS is more cash strapped over the last couple of years, and there often are too many patients to meet that guidance. The guidance almost always used to be met, but less so nowadays.

The problem is that so much money and resource is poured into the suspected cancer 2 week wait targets (and the referral criteria are so broad that most don't actually have cancer) that everything else has had money taken away and waiting lists become much longer, much to most hospital consultants annoyance.
 
I went to see my gp mid September and have got a date for 24 December. I ended up going private as getting too stressed out waiting 😑
 
I was referred as suspected cancer and got to see a consultant within a week, so they can move fast if they want. I got lucky with a cancellation for a colonoscopy and gastroscopy too having that about 2 weeks later. After that it took about 4 months for the next appointment, another couple of months to get a CT Scan, and another couple of months for the next appointment and get the result. By this time I was really quite ill and somewhat pissed off and I had relatives telling me they'd pay for me to go private if I wanted (I would have paid for it by myself).

So yes, pretty normal.
 
Thank you for the replies everyone, I'm somewhat relieved I'm not the only one having to wait so long. I looked back and it is now 10 weeks since I received my choose and book paperwork.

In the last week or so my symptoms have been flaring up again and today I'm feeling particularly ill. I have also noticed a lump/swelling in my abdomen where one of my pain sites is, so I will mention it on Monday when I see the GP about my haemorrhoid.

Interestingly I went on the NHS Choices site and looked up services near me which said the average waiting time for an outpatient appointment at my local hospital is 16.67 days from referral to appointment. So now I am a combination of confused and incredibly annoyed! I plan to ask the secretary about that tomorrow when I call and chase my referral yet again.

Like I said, I understand that the NHS is so overstretched and struggling with budget cuts, I'm not going to waste their time or my time by constantly going to the GP or making an unnecessary trip to A&E, I just wish that either my GP would do something to help in the meantime or I could at least get an appointment date (I know it will be January at the earliest now).

Also I haven't even looked at prices for private appointments to be honest, because of the way my health is I can only work 3 days a week so unless an appointment was like £50 privately it's more than I can afford, I know it's nearer the £200 mark to just get a consultation sadly.
 
sarahfh said:
In the last week or so my symptoms have been flaring up again and today I'm feeling particularly ill. I have also noticed a lump/swelling in my abdomen where one of my pain sites is, so I will mention it on Monday when I see the GP about my haemorrhoid.
Click to expand...

Is it swelling up for a few seconds and then going down with a gurgle?

When I was misdiagnosed with IBS 20 odd years ago it was still a 3 month wait to see a consultant. So this seems to be business as usual for the NHS.

The £200 for a consultation isn't terrible, and I'm sure a lot of people would pay that but if they want tests and even surgery it could cost you thousands privately.
 
I agree that they could at least give you an idea of when your appointment will be. I would imagine the low average wait for an appt is skewed by the number of 2 week wait appointments.

I don't think that until you have experienced ill health and having to wait for an appointment, let alone treatment, that you realise how frustrating waiting is. It wouldn't take much to tell you when you will be seen approximately so you can mentally prepare yourself.

I hope you get somewhere. Make sure you let them know how your symptoms are worse…particularly if you have lost weight as gastroenterologists don't like people to lose weight unintentionally.
 
DEmberton said:
Is it swelling up for a few seconds and then going down with a gurgle?

When I was misdiagnosed with IBS 20 odd years ago it was still a 3 month wait to see a consultant. So this seems to be business as usual for the NHS.

The £200 for a consultation isn't terrible, and I'm sure a lot of people would pay that but if they want tests and even surgery it could cost you thousands privately.
Click to expand...

The swelling is more noticable in the morning to be honest, once my general bloating picks up after eating and drinking it blends in to the rest. It's right over my most tender spot though.

I've had to book an urgent appointment with the GP for later today, between everything I'm not coping and with the nausea I've been struggling to drink enough never mind eat. I spent an hour curled up on my bathroom floor crying yesterday afternoon. I ended up doubled over in pain last night after eating a couple of crackers, literally before I even swallowed the last one, which has never happened before, my pain is usually lower and starts a couple hours after eating. The lower right pain is ever present though! I just can't keep going like this :(
 
Well, I had my urgent GP appointment and it was with a GP I've never seen before, but she was lovely and I actually nearly cried with relief when I walked out of there!

So, she seemed certain it's IBD over IBS despite all my tests including fecal calprotectin coming back clear. She has prescribed some fortisips for me to try as I have lost another kilo since I was last weighed, I pick them up tomorrow as the pharmacy have to order me them. She was also keen to prescribe some steroids to see if they help, but decided that she would rather not in case they clear things up too much for gastroenterology to make a diagnosis, which I can understand.

Best of all, she is going to chase up my referral and request an urgent appointment for me, she was shocked that I've still not heard anything! So fingers crossed its the start of things actually getting sorted for me! I still feel awful but at least there might finally be some positive steps being made. Or at least that's what I'm hoping for!
 
I'm glad you've seen a GP who will hopefully be able to get things moving now.

For future reference, or for others in this situation, you are entitled to be referred to any NHS hospital anywhere in the UK. If you are able to travel, this could give you the chance of an earlier appointment if another trust is less busy than your own local one.

There is information about this on the 'NHS Choices' website. http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

(Sorry, forgot how to make it a link!)
 
Hi, I'm very late coming into this but just wanted to reassure you that this isn't uncommon. When I was first referred it was under peads so it was a much faster system but my IBD nurse told me the other week that some patients are waiting up to 12 months to get an appointment with her or my GI.

I personally have been waiting at least 6 months now for a gynea appointment which was supposed to take 3. Unfortunately the time of year won't be helping things, its always harder to get in through the winter months as that when people are usually at their most poorly.

When you eventually get to gastro, make sure you ask them if they have an IBD nurse service and if they do get the number. This will then mean if you get any problems between appointments you will have someone to call for help.
 
Hi, we have our son , was waiting for the appointment with the hospital in January. booked beginning of October Going to GP many times for joints pain, erythema nodosum, finally last Saturday we went again, as he was very poorly, the GP spoke to the hospital and he gave us a letter to go go A&E. They kept him in the hospital, and he finely was seen by the gastroenterology that suppose to see him on January. They put him on strong steroids, and as i understand after that will take some proper treatment, I dont know yet what but I will update if you want. We live in Nuneaton, Warwickshire
 
Hi sorry your son had to go a&e to get help. Hope the steriods do help till they sort out more perminant meds. Please do keep us posted. Best wishes n hugs to you all 💞
 
Just thought I would post a quick update as it were. I spoke to the GP's secretary and they have chased them up, the hospital asked them to fax my referral over (already been sent three times!) but that they don't have any appointments available until February...
I actually cried when I came off the phone to them. I know it can't be helped, the NHS is overstretched, under staffed and under funded. I know it's winter pressure and there are no hospital beds anywhere and consultants are even busier as a result but I really don't know how I'm going to hold off until February just to see someone never mind the wait after that for testing and treatment.
I guess part of me worries that if it is IBD then it will just get worse and there will be nothing I can do, I'm already on such thin ice at work as it is because of my other health problems and the time I've had to have off with the pain and diarrhoea. Then the other part of me worries that it will turn out as "just IBS" and I will be sent off with no treatment/symptom management and will have to just stay existing like this. It probably sounds daft but part of the worry I have with that is then I will feel like an idiot for pushing to see someone and having to have time off work and even for coming on here and moaning like this when you're all fighting bigger demons/battles than I am.
Sorry for rambling, it's all just getting on top of me and I don't feel I really have anywhere else to turn to. This weekend I'm visiting my dad who knows nothing of the tummy troubles and I get anxious enough about seeing him as it is, never mind adding in that stress/nerves kill my intestines and food is a real struggle right now but we are meant to be going for dinner.
I really am going now! Again sorry for the moan and thank you all for the replies, I'm just glad I'm not alone in this never ending wait! Michellepatrik I would be interested to see how your son gets on :)
 
Hey sarahfn. We are here to listen and hopefuly help. Never feel bad about feeling others are worse off. Its an awful thing to go thro n we understand that, we have been there and still are.. hope you can cope till appointment. If not go to a&e if need be. Hugs 💕
 
Hello, an update from us too.
He was released from the hospital yesterday (George Eliot- Nuneaton),
He is much better than last week. Was seen by a specialist in Crohn's disease, actually the one he had booked the appointment for January.
His nurse also gave him advice and some info to read,
They prescribed him following tablets

PENTASA 500 MG
METRONIDAZOLE 400 MG
ADCAL-D3 CHEWABLE TABLETS
PREDNISOLONE 5 MG
FOLIC ACID TABLETS
OMEPRAZOLE 20MG

I am still trying to figure out what are those tablets and side effects but for the moment he has to take them all
One of them is cortisone type steroid and he will take it for 8 weeks.

Also said that will have to go ones a month for blood test and monitoring by the IBD team , they are wonderful people very nice and helpful.
We will go to our appointment on 7th of January to see how it goes.
He is eating a lot better and very good appetite , hopefully no more complications.
The erethyma nodosum is gone already , and the joint pain too.
Any questions just ask.

This disease actually change everything to our life, we never been in the hospitals before other than birth and we struggle to understand why this happened to us.
I was surprised to hear from the doctor that only in Nuneaton are 400 cases, I asked if this had anything to to do with moving from abroad to UK . We came 3 years a go from Greece so in my mind i do have this question all the time. He said that a percentage of this disease is the DNA factors and the rest is the environment that including food and life style. I also read about a recent research and they claim responsible for this disease the E , emulsifiers, and preservatives that are in the food we eat.
I cook every day trying to eat healthy most possible but to be honest everything we get from the supermarket shelf is got some of those emulsifiers( bread, milk, cheese, etc) After that I can say that people react different to all those factors, some are stronger and some are not( here is the DNA factor) The doctor mentioned also ( is not our case ) that in UK people doesn't rinse their dishes after the soap and this is a big mistake as very harmful for the health and mostly for the digestive system.
Over all here we are trying to fight this terrible disease and I hope the the scientists will find a permanent cure and understand it completely.

Wish you all MERRY CHRISTMAS and A HAPPY HEALTHY NEW YEAR!
 
Glad your boy is feeling better. Hoping it continues ☺ strange about the rinsing dishes we always have as a family, thought most people did... well i cant blame the dishes then...
Merry Christmas to you n your family 💕
 
Thank you, I am trying to find that answer to the stupid question, why ?
I think every one would do the same . Just sharing what the doctors told us.
I wonder if with all these tablets i could give him some turmeric or CBD OIL. He already had the first gram of cbd oil before the hospital. I dont know what to do now. will call the nurse to ask, any one knows about ? Thank you
 
Why?? Is the million dollar question.. sadly we may never know. All we can hope for is better meds or a cure come a long. And pray for those things. Hugs 💕
 
mandyk said:
strange about the rinsing dishes we always have as a family, thought most people did...
Click to expand...

I had a flat mate who was shocked to see me not rinsing the dishes as he said the soap was "poisonous". That was the first I'd ever heard of it. I did what he wanted to keep the peace, but when I was living on my own again went back to not bothering. If there was any truth in it it would surely have been bigger news.

Hang in there Sarah. It's so frustrating waiting for them, but hopefully the end result will be worth it.
 
I am stuck in the same boat. I did get some tests done in the US when I was first told I had Crohns. I had a CT and Promethius blood test done in the same week.

Couldn't believe how long the waiting lists are in the UK just to get a first appointment. Once you've had that are the waiting lists just as long to get follow ups too?
 
I can totally understand asking why, I have done it multiple times with all three of my current conditions! I think sometimes sadly we will never know why us!

I don't know if it's quicker or not for follow up appointments to be honest but hopefully someone else will be able to answer that for you.
 
ImDan said:
I am stuck in the same boat. I did get some tests done in the US when I was first told I had Crohns. I had a CT and Promethius blood test done in the same week.

Couldn't believe how long the waiting lists are in the UK just to get a first appointment. Once you've had that are the waiting lists just as long to get follow ups too?
Click to expand...

This will obviously differ depending on the hospital and your individual team but for me follow ups with my gastro/ibd have been regular. At times I have seen my ibd nurse or gastro once a week if they felt it was necessary.

When the gaps get bigger sometimes appointments do get moved back by the booking department but ive been able to get that corrected by calling the secretary in the past.
 
My last appointment was 6 weeks after the previous. That's what the consultant had asked for, but the receptionist said "that might be difficult". Initially it came through at about 10 weeks, but then they moved it forward so it was 6 weeks to the day.

When it comes to treatment some things are time sensitive, so they do need to make it happen. It was the diagnosis stage that sucked. I found out from the letters that they discussed my case in a meeting, decided it was Crohns and that I needed surgery as soon as possible but nobody thought to tell me this or do anything about it until my follow up appointment 2 months later.
 
Experience tells me that dealing with the NHS is just as bad as dealing with IBD (with just a little exaggeration for dramatic effect). :)

There is no sense or logic to it.

To be honest, hard as it is, I try switch off and occupy my mind with other, more interesting, things than the vaguaries of the NHS. I concentrate on keeping my weight up and eating what I can. I try to control the things I can control and not think about the things I can't and that way, I do my best to stay in a good mental state (which, tbh, I'm going to need when the surgeon gets round to me) and as good a physical state as I can manage.

Now I'm in the system, if things get bad, I contact my gastro nurse. If I wasn't in the system, the one thing that I would tell the young me is to get down to A&E, at least they aren't going to discharge you if things are perilous...wouldn't look good on their statistics.
 
Well, I finally have an appointment date. My appointment is the 17th of February, so still quite a wait to go sadly, but I suppose at least it is a date to work towards.

In the meantime though I think I am going to work on the principle that if it gets to the point where I'm not coping and am dehydrated etc again I will go to A&E. I've always been one of those people in the mindset that A&E is only for life or death stuff but when I've reached that point before and got an urgent GP appointment they haven't done anything other than tell me to wait for the hospital appointment.

Here's hoping I can manage to enjoy Christmas without too many consequences! Hope everyone is as well as can be.
 
Well done, happy you got your appointment date.

I actually just received a letter with acknowledgement of my referral and that I should receive a date within 12 weeks.
 
Us Brits are good at waiting in queues and being polite.I can't think of any other nationality that would do that.
Nothing to do with IBD,but yesterday people had to sit in their cars for 6 hours to exit a shopping mall car park.....Merry Christmas All.Keep well.
 
sarahfh said:
Well, I finally have an appointment date. My appointment is the 17th of February, so still quite a wait to go sadly, but I suppose at least it is a date to work towards.

In the meantime though I think I am going to work on the principle that if it gets to the point where I'm not coping and am dehydrated etc again I will go to A&E. I've always been one of those people in the mindset that A&E is only for life or death stuff but when I've reached that point before and got an urgent GP appointment they haven't done anything other than tell me to wait for the hospital appointment.

Here's hoping I can manage to enjoy Christmas without too many consequences! Hope everyone is as well as can be.
Click to expand...

Absolutely go to A+E if the pain is out of control or if you're vomitting and can't keep fluids down. Go in and tell them you have suspected IBD and your symptoms are out of control. I used to be the same, would refuse to go even though i was doubled over, I'd just go to the gp. Thankfully most of the doctors there are more useful than yours sounds and the majority of the time have sent me off to the hospital. Every time that has happened I have been admitted, the shortest being 4 days, so they obviously thought I needed to be there.

The thing is, there are a lot of organs and stuctures in your abdomen and therefore a lot that can go wrong, especially for us ibders. Even those with a chronic condition can need urgent care at times. One of the risks with IBD is a blockage, which can cause an increase in pain etc, so these symptoms should always be checked out. I'm not saying this to scare you, but a blockage can turn into a rupture, which is an emergency. Of course you may never get one, but there are so many other things that could be happening, so you are absolutely validated going to A+E if your symptoms get too much.

A good rule to go by is if you're thinking "should I go " the answer is always yes, you wouldnt be wondering that if things weren't bad, so if you start thinking it then just go.
 

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