Just discovered I’ve been taken off a year long NHS waiting list

[Daffodilsonthewindowsill]

What would you do in this circumstance?

I have had long standing gut health issues which have become much worse over the last few years. I have tried literally everything to ease these symptoms with little to no relief.

I am under my local NHS gastroenterology department but only get to see my gastro for around 5-10 mins, once a year.

End of 2021 he referred me for a SeHcat scan to test for Bile Acid Malabsorption.
After a little wait I received an appointment for April 2022 but had to cancel due to it clashing with a gynae op that I’d had booked. So I rang the scan department and they said that was fine (I had given lots of notice) and they would send me another appointment.
3 months later I’d heard nothing so chased only to be told there was now a shortage of some nuclear medicine they use but I would get an appointment some time. Chased again September 2022 then January of this year, to be told the same thing.
I have patiently waited and waited yet still no appointment so a few weeks ago I chased again only for the scan department to inform me that my gastroenterologist has withdrawn my referral! No notification, nothing. I am so upset.
I have left 3 voicemails to the secretary but no one has returned my calls.
I last saw my gastro in September ‘22 and we even talked about the SeHcat waiting list and he assured me I would get an appointment.

I don’t know what to do know. I hate complaining especially as the NHS is in a bad way but I feel left out in the cold, no communication at all and still have daily digestive issues which are unresolved and causing me great distress.
I do have a follow up appointment with the gastro but it’s not until July and it will be a quick telephone consult.

What would you do in the situation? I’m so upset that even if I do get re-referred, it will be another year long wait.

I would complain via PALS and copy in the NHS trust’s chief exec.

It’s not your fault the NHS is in a bad way, it’s not fair you should be screwed over even more because there are failures at various levels of the system. Complain away.

If you don’t get a satisfactory response (i.e. being put back on the list at your previous place) then respond and copy in your MP; follow up separately with your MP and specifically request their assistance.

Sorry you have to deal with this now, on top of living with what I guess must be be pretty distressing long-term symptoms. Good luck.

The NHS is in a bad way because no one dares complain about it.

Write to PALS as suggested above

July isn't that far away and realistically it isn't as though the scan will be happening between now and then even if you raised a complaint. I would discuss it with your consultant on your July call and ask why he removed the request, ask him to make the referral again, make clear your symptoms remain problematic and ask for next steps. I find these calls are what you make of them unfortunately and if you don't advocate for what you need you may not get it.

Alternatively make contact with PALS at the hospital and see if they can assist you.

How awful for you :(

PALS and leave an anonymous review on Care Opinion.

The other thing is, mistakes happen and when it is brought to peoples attention they can apologise and put you back on the list! No need to assume the worst (yet). People need to be given a chance to put things right.

This is what PALS is for.

I'd join Bendenden and after 6 months use this

Benenden health

Thanks all. I do hate to complain but it’s a shitty way to treat a patient imo. I wouldn’t have minded so much if I’d received a letter or phone call to explain the situation but to discover this only because I’ve chased it up (yet again) and to received no reply from the secretary even though I’ve left 3 voicemails is upsetting.
I have left one more voicemail this morning and if I have no reply from that by next Monday I will have to contact PALS.
dontgobaconmyheart it will be top of my list of things to discuss with him in July but that’s not until the 28th which is an almost 2 month wait and in all honesty I do have little faith in him at the best of times, he is very dismissive. On my first ever consultation with him, he tried to cancel my appointment whilst I was in the waiting room! I had sat there and had waited an hour and a half, all because he was running very late he informed his secretary to ring patients and cancel. That was my first ever consultation appointment with him!

I'm surprised if the issue is having such an impact on you day to day life that you cancelled the appointment that was originally given to you in April 2022, rather than trying to rearrange the other appointment. Was that not an option?

Irrespective, you obviously are where you are now. If you receive no reply to your latest voicemail then I'd contact PALS to complain.

GiltEdges if you read my op you will see that the scan clashed with an operation. I had been losing a lot of blood and had to have a gynae op and iron transfusions, at the time that took priority, my ferritin levels had dropped to 2. Believe you me, the digestive issues have ruined my life and I don’t say that lightly. Pretty inconsiderate of you make any assumptions about me when you no nothing about my health struggles.

know

Yup.

I wonder if the reason it has been cancelled is due to an auto response in the system. I know a lot of departments have patients on their lists for a year and then if you haven't used their services you get removed. I know you have contacted them but I wonder if that is under a different system. I echo other comments of going through PALS and I hope you get some answers, and some help, soon💐

It’ll most likely be an automated system cancellation not the consultant cancelling. I’m also waiting for a scan under gastroenterology and on my online portal it has a year expiry date. Luckily mines next month.

longtompot CharlotteRose90 the woman from the scanning department said it was my gastroenterologist who had cancelled my referral but she may have been wrong. Hopefully I will hear back from the department this week, if not I shall contact PALS on Monday.
CharlotteRose90 good luck with your scan.

Honestly I wopuld just join Benenden then you can choose who you want to see and get tests / scans done quickly to put your mind at rest. Sounds like the one you have is not very helpful and it is worth the small amount of money for people of mind

I’m the same awaiting surgery and going to be contacting PALS on Monday as they have had 18 week breach time and I am coming up to 18 weeks very soon

Can you ask your GP to contact your consultant and see if a referral can be redone as urgent due to the error? The secretary might be in holiday which is why you haven’t heard back yet