How do you know you are genuinely on a waiting list for the NHS?

[Shadowboy]

I’ve been waiting for surgery for about a year now and every time I speak to the consultant he confirms I’m in a waiting list. I’ve never officially had a letter to confirm this so how can I prove I’ve been waiting so long? How do I know what the wait times should be?

You can apply to the hospital for your notes. Your referral letter from the GP will be there together with documentation of when you were put on the waiting list. Or you can ask via PALS for confirmation of the date you went on the waiting list

Your GP should be able to find out?

Please don’t ask the gp to find out, they have enough to do. Phone the consultants secretary if you must and ask how far up the waiting list you are.

Unsure how you'd know but it's just been on the 6°clock news that a man has been waiting for a hernia operation for 5 years and it's tripled in size and seriously restricting the poor mans movements & left him housebound.
So he's obviously been waiting since before covid; I think it's time the NHS start explaining why people are waiting this long and where the hell the budget is going? Because it sure as hell ain't being spent on patients!

There are just too many patients and not enough staff to get through the waiting lists.

For some specialties there are spaces to operate and the infrastructure but not enough doctors ie dermatologists

I received monthly notes from the scheduling office asking if I still wanted the appointment.

Now I have an initial meeting on Monday and a date for surgery in March.

They won’t tell you where you are on the list. I’ve tried finding out for the neurologist clinic. They tell you you’re on the list but won’t give any idea of how long the list is or where you are on it. They won’t even engage in that conversation. Even the consultant said he didn’t know how long his list was which must be absolute bollocks. It’s so frustrating.

You have to work out who the secretary is and phone them. Make sure you're very polite because the secretary is the most powerful person here and seem to magically find cancellations if you're not an arsehole (understandably).

Do phone though, I've just found out after waiting 19 months that one department didn't speak to another and despite GP assuring me it was all in motion I wasn't in fact on any list.

That’s interesting! It’s beginning to affect my breathing so I could really do with knowing how long I have to feel like a 90 year old women when I’m only 40.

I’ll see if I can find out who the secretary for the consultant is. Thank you ☺️

I was told I was on a list in the November and would be operated on “by summer”. Summer came and went and I phoned, and it was clear I hadn’t been put on the list at all. They got me in the next week for a consultation with the surgeon, and then the wait was going to be another three-six months.

Can you contact the hospital PALS and ask them to find out.

PALS will ensure you get a response but equally, speaking to the secretary should give you reassurance that you're on the waiting list but unfortunately not necessarily how long you will have to wait. The pressures on the NHS currently are huge, you can't blame the system when it is hugely underfunded and all staff are just doing their best to keep going.

Have you got the nhs app? My hospital referral was shown on there - actually thinking about it one referral that took months was on there. The other one a 2week possible cancer referral didn’t show up on there

Not bollocks.

I'm a foot and ankle & trauma surgeon.

I don't know how many patients I have waiting, what they're waiting for, or what priority.

The managers are in charge, and being directed by NHS England. I asked for three specifically urgent, limb threatened patients to be put on my list next week, but I've been overruled bevause there's some bunions that are breaching the current 61 week target which has to be met at all costs because the tory fuck heads think that bodging a solution. 10 weeks before a likely election will make up for 13 years of utter neglect and a piss poor response and lack of leadership during covid....

We had almost 2 fucking years where the hospitals were doing nothing, to rebuild, expand, renovate, remodel but absolutely nothing happened, so now we have everyone who was already waiting, except worse, more complex more time consuming because their conditions have deteriorated, plus all the people added to waiting lists while no operating was happening plus all the people currently being added to waiting lists every day.

We're at least 4 years behind.

My daughter was waiting for surgery to clear a blocked tear duct. We were told it would likely be September 2021 in May 2021. October 2021 I heard nothing so rang the consultants secretary and was told that there were 6 people in from of DD on the waiting list so I should.expect to be seen before March 2022. 6 patients and a 5 month wait at that point. We had the appointment in July 2022.
Now either the secretary was lying (why on Earth would she?) Or these consultants are not spending quite as much time prioritising their NHS patients as they probably should be.

But the surgeons are not only doing tear ducts. Tear ducts might only be scheduled every other months for example. No one only operates on tear ducts

Hello, nhs manager here (please don’t shoot)

I’m so sorry that you’re struggling and you’ve been waiting so long. For context: Waiting lists really are longer than ever and as patients have been waiting longer than ever many have deteriorated and therefore operations are more complex than pre Covid which takes longer meaning less can go on a theatre list at a time which means the wait is longer. Similarly people have more complex medical needs than ever that need to be optimised prior to surgery which delays the system. Despite additional money and resources being made available it’s so tough. My department has 5500+ patients on the waiting list for surgery currently. I spend my entire day trying to ensure every list is as full as can be with patients in priority and waiting time order. I hope and like to think my colleagues are doing the same. We are also experiencing higher than ever cancellations on the day for various reasons (including coughs/colds/sicknesses/can’t get to the hospital etc) and all those patients have to be fitted back in at the top of the list too. It’s a nightmare and I feel so so sorry for all that are waiting. But please be assured (at least in my department) we are working so hard to get everyone seen in a timely manner.

to answer your question however: no, you won’t get a letter confirming you are on the waiting list, nor your estimated wait time as this changes all the time (due to people coming in ahead of you in priority (which is clinically assessed), unanticipated consultant absence, theatre staffing shortages, estates failures).
but what you can do is contact PALS and ask for the following:

• current RTT waiting time (this is calculated in weeks since you were referred from your GP. You remain on this “ticking clock” and waiting list unless you have decided with the consultant not to go for surgery, or if you are an inpatient in hospital for any reason, if you tell the team you’re unavailable for more than 90 days, if you don’t want to proceed or if you are unfit - such as on long term abx, or need a pace maker fitting first etc). there is an NHS edict that all patients who have been waiting over 65 weeks by the end of March have to have been treated by the end of March. So the teams should have a plan for you if you have been waiting that long. After March the next target is no 52 week waits by March 2025.
• ask for the date you were added to the waiting list (usually this is the date the clinic you attended where they listed you, but good to double check. This date doesn’t effect your waiting time but will confirm to you that you are in the waiting list
• ask for your P or Priority status and when it was last reviewed by the consultant or their team. P1 is urgent/emergency trauma, p2 is clinically very urgent or cancer, p3 is urgent and p4 is routine. And ask, if it’s not been reviewed in 6m that it’s reviewed again.
• ask for trajectory for your TCI (to come in) date. They might struggle to give this to be fair.
• ask if there is another consultant with a shorter waiting time within the department that you could be transferred to (if this is something you are willing to do).
• advise of any clinical changes to you or your condition since you were last seen by the surgeon or their team (as this might alter your P status)
• finally, ask for a call from a manager to feed back to you (and also for an email confirming all they tell you).

have you been sent for a pre-op yet? Preops are only valid for 3 months so can be a good indicator that they will be hoping to offer you a date soon. However sometimes the pre ops run out and you don’t get a date just because other patients have taken priority.

lastly suggest you contact pals rather than the secretary as pals will automatically include the management team (folk like me) to flag up any issues, and it gets recorded in the system that someone has called up concerned and asking questions. Themed from pals enquiries are monitored and scrutinised and action plans made to improve on them. So it’s really important for you to go the right way.

hope that helps! Happy for you to reach out to me if you get a response you don’t understand or you’re not satisfied with regarding next steps

I wish you all the luck xxxx

@Catsonskis what a thorough and detailed reply.

Thank you. It’s a passion of mine that the public understand how these things work because it does seem smoke and mirrors or manipulation of data at times.
i don’t know why we don’t send out a summary like the above to give a bit of context - but ultimately give the patient the information and openness of their journey and pathway on the waiting list.

just hope I can be of help to poor Op in getting the response they deserve and need.

plus all the nhs manager lingo included in the above might spook the team and jump her up the waiting list (I don’t agree that’s the right thing to do, but I’ve heard of it happening)

I’m on a list…I’ve been on the list since before covid!

Nothing like a list

Thanks so much for the clarity. It’s very interesting to hear that you genuinely don’t know how long your lists are. I can understand your frustration too. It feels like we’re never going to catch up from Covid or Tory incompetence.