Frustration & Endoscopy wait

[Kyle3]

Hello everyone. I've been waiting a while for my intrinsic factor test result. Decided to chase up the doctors to see what was happening. Phoned them up this morning and found they already had the test result back- returned negative result. Not too surprised. (but wondering if they were actually planning on telling me the result at any point?, doesn't seem like it...)

I've got a routine doctors appointment booked for a couple of weeks time.

Had the doctors appointment resulting in referral for endoscopy on the 11/06. Apparently there is such a long waiting list (5 months) that the hospital have stopped sending appointment letters out, so heard nothing from them at any point. The plan for my appointment is to ask the doctor about getting the endoscopy done at a hospital other than my local one.

I'm a bit confused how this all works- the NHS choices web sites suggest waiting times for procedures can be compared- I think the site is broken as it says no data available when looking at endoscopy wait times at all local hospitals so I'm none the wiser on that front.

Hopefully its not a foolish idea to pitch up and ask my doctor their opinion with regards to hospital choice/waiting times? Not really bother about a bit of travel provided I can get the procedure done in reasonable time.

[Gambit62 Administrator]

Hope the meeting goes well.

I'm a bit out of touch with what current rights are in relation to choice but certainly was the case a year or two ago that you were entitled to chose treatment from different hospitals. May be citizens advice bureau might be able to clarify - or a local patient liaison group. There's probably something on one of the NHS sites ... hidden away in all the small print

[Kyle3 in reply to Gambit62]

Thanks, For what its worth there seems to be a great focus on the '18 weeks from referral' maximum waiting time as per here nhs.uk/choiceintheNHS/Right...

Although I'm assuming that means diddly squat in practical terms. At that point suppose I'd get a letter saying sorry for the wait. Anyhow figure I have nothing to lose by asking

[Foggyme Administrator]

Hi Kyle3. I went through something similar recently!

In my experience, choose and book is a nonsense system...it should be called availability and book...or not! When I got the choose and book forms, I was simply allocated to an endoscopy unit and when I tried to book (both electronically and then by phone), I was simply told that no appointments were available!

So...this is what I did...

Whoever books these appointment at your GP's surgery will have electronic access to hospitals in the whole of the CCG's area and will be able to see appointment availability across all endoscopy units in your area. I rang the secretary responsible for booking at our surgery and she searched the database for availability...and there was none. However, this could be your first action....you might get lucky.

I then rang the unit to which I had been allocated and explained the situation...and was told that they had no availability. However, the very nice person I spoke to rang me back the next day and said they had a cancellation and did I want it. And of course I did.

So...you might get lucky if you try those two things...if the secretary at the surgery can't find an appointment and you can get her to allocate you to an endoscopy unit, you could then contact them direct once the paperwork has been passed to them. You could then ask them to put you on the cancellation list....it works sometimes.

I'm left wondering about the nonsense that is choose and book...patients are allocated to consultants by surgery admin staff, with it appears, little consideration about whether the allocated consultant has experience in (or at least an interest in) whatever condition the patient has! So more wondering....how much time and money must be wasted by patients being sent to the 'wrong' consultant and then either not getting appropriate treatment or having to be re-referred....more, time money and waiting....sorry for the digressive rant!

Hope you manage to get through this awful system and get your appointment soon.

As a last thought...urgent referral are supposed to be done within two weeks....was you referral urgent or routine....worth thinking about if you are suffering / desperate!.

Good luck...would be interested to hear the outcome.

Take care xx

[Kyle3]

Will let you know how things go. Appointment in about a week and a half. I was planning on mentioning also that even though the loading jabs were otherwise fantastic, for me they didn't do anything for my total lack of energy. I'd kind of naively assumed gradual improvement on that front would be expected.

However things got 'interesting' in the last couple of days. Started to feel more fatigue, got out of breath very easily, feel my pulse racing. Itchy and tingly, irritable, occasional cramping, extreme difficulty getting to sleep and hot flushes. Had a same day appointment today, have a prescription for iron tablets (turns out available to buy OTC at the pharmacy and cheaper that way).

My endoscopy referral is not down as urgent. I'm of the belief that in a case of proper diagnosed iron deficiency anemia that it would be. Of course there's no blood test to prove that or indeed my lack of B12. My B12 deficiency and (apparent) lack of iron has been treated due to me presenting with obvious symptoms.

Also have an ECG the day before the appointment now. I shall propose to the doctor that I have no wish to continue to play this game of 'deficiency whack-a-mole', B12 has been whacked, hopefully I'm in the process of sorting iron out. With my lack of digestion the next mole could be on its way. (magnesium,zinc,calcium, vitamin D,something else?). This seems obvious to me but hopefully also to the doctor

Thanks for the suggestions- cancellation list in particular is something that had never crossed my mind before. Fingers crossed the doc sees my point of view.

[fbirder]

Endoscopy is one of those things where demand can be unpredictable. I got a call yesterday telling me that my appointment has been put back two weeks because they've had more urgent cases than expected.

And I can understand that. My gastroscopy is to have a look at my Neuroendocrine Tumours - and make sure they are behaving themselves. So I've no problem making room for people with a good chance of stomach or bowel cancer.

I had my first endoscopy after something like a 12 hour wait. But that's because I presented with severe iron deficiency anaemia and a gastric bleed. So I probably shoved some other person off the end of the queue. I hope they didn't mind too much.

Which iron tablets have you got? If it's ferrous sulfate then you'll find they work a lot better if you take them with a source of ascorbic acid (Vit. C) and citric acid. Tesco do an effervescent Vit C tablet that has both.

If you have PA then you've probably got Autoimmune Metaplastic Gastric Atrophy (which they should be able to determine in the endoscopy). Not only does this ruin B12 absorption, it also stops acid production. And iron needs acid to dissolve properly in the stomach - and only iron that is dissolved can be absorbed.

Another way of getting iron to dissolve is to take it with chemicals that bind to it and make it soluble. Ascorbic and citric acids are two such chemicals. You can also buy iron bound to things like glycine and fumaric acid (as bisglycinate and fumarate) to make them soluble.

The iron sulfate can cause problems with constipation. Once you've got your levels back up you can switch to another form. I like Solgar's Gentle Iron (iron bisglycinate) just as a daily top-up.

[Kyle3]

Hi Fbirder, they are ferrous fumarate tablets. I've been taking them with a glass of orange juice.

Took my first one 5 hours ago. Not felt anything yet but may take a while for it to get anywhere. In the days before my troubles started my digestion was quick, these days there's always a considerable traffic jam in progress. That sensation of feeling bloated after a large meal is always with me- like each meal eaten is just sitting on top of the last- many layers of that (ugh)

Food doesn't seem to have any affect on my stomach. Stopped taking Omeprazole and two weeks or so later stomach feels exactly the same as when taking it. Very slight heartburn occasionally as per when taking the tablets, otherwise absolutely nothing going on. Suppose it might be what an atrophied stomach feels like- not doing an awful lot.

Have to see on the endoscopy front. Waiting quite some time may be enviable- if so fair enough. Thinking about asking for a blood test to check for deficiencies in other areas- at least if an extended wait is expected. Would be nice to see a problem ahead of time rather than getting struck with yet another set of deficiency symptoms.