NHS outpatients - has anyone else had *everything* stopped?

[lesbihonest]

I am on a v long waiting list for investigation and treatment for lifelong bladder problems . Already been delayed about four years as NHS forgot to treat me (in their words) - ended up having emergency cystoscopy in October after seven weeks of frank haematuria/retention . Told the morning after that bladder is irreparably damaged , it’s about 50ml capacity so very small, probably born with a congenital issue affecting urinary tract, they can stretch it out but it will likely get worse again after a few months .

Symptoms are gradually coming back as they warned - I’m starting to lose all sensation of needing to pee again .

No treatment plan post op as they wanted to do outpatient tests first . No consultant review til after those tests done . Told a 9 month wait just for tests .

GP asked me to ring secretary a fortnight ago as she said she has no idea how to help me at all - given there’s no real treatment plan . I’m managing to pee through straining to go, double voiding and I’m trained to catheterise if needed - although I’m not good at it (dyspraxic) and usually get an infection after, so told a catheter is last resort .

Hospital have said they aren’t doing any outpatient clinics at all, they aren’t providing routine care to anyone . No outpatient nursing teams anymore as they’re all doing coronavirus - Secretary said same applies to all staff and clinics and wards - Corona or acutely seriously ill only .

I’ve no idea what to do . Surgery are saying they can’t help until I talk to a specialist nurse or consultant . But hospital said that won’t happen for a long time - said even if it was 36 weeks there’s now a backlog of several months added to that .

Should I just try and manage as I am, I don’t want to make things worse ... I have been told in clinic before that being under 30 and having all this is rare, serious and likely to mean eg stoma surgery one day so I’m aware of that ... but just worried that the more it’s all left the more chance I have of landing up needing that surgery .

[GairlochHoliday]

My mother is receiving good care from her local surgery.
But I can’t help but think that our government wants the NHS to collapse. I’d love for somebody to please tell me I’m being paranoid. Thanks in advance.

[selfisolatingsince2007]

‪Needed urgent script for an issue with my
Pregnancy.

Call GP as I can’t go in, fine, who tells me it’s a two working day wait and then they’ll post it to me, not the pharmacy directly. Nope, that would actually be helpful. Wait your turn peasant!

Alternative is the hospital, so go there, its sorted in 20 mins, but the catch is you need to wait in a room with three people people who have absolutely barking coughs and no masks. It gets better, they give me 7 pills and tell me to go see my GP for any extras.

What exactly are we protecting the NHS from? Presumably working.

[UnmightyBoosh]

They’re posting your prescription? That’s utter nonsense on their part - ask them to send it electronically to your pharmacy of choice.

[JamieLeeCurtains]

That's ridiculous, @selfisolatingsince2007.

My GP sends everything electronically to the pharmacy. My hospital (Rheumatologist Dept) had some new drug brought to me from the pharmacy on one of the blood courier motorbikes. Such a good department (unlike others I could name).

Are you registered with your GP for electronic prescriptions? You have to nominate a pharmacy, and you can normally change that online if needed.

[Grufallosfriends]

My outpatient appointments and subsequent surgery were cancelled back in March but I had call a week ago rebooking my pre op for mid June

That's great. Do you mind me asking whether it was an urgent (time critical) surgery or a routine one? My DD's ENT surgery was also cancelled in March and she's keen to have it rescheduled, although we weren't expecting it to happen soon.

[JamieLeeCurtains]

@Grufallosfriends I've had a endoscopy procedure re-booked for June, and a NHS dental appointment re-booked for June. I have an existing ENT appointment in July yes, I'm falling apart that hasn't been cancelled yet.

[Grufallosfriends]

That's great! That your appointments are all taking place soon (not that you're falling apart ). Fingers crossed our surgery appointment comes through soon too.

[selfisolatingsince2007]

@JamieLeeCurtains @UnmightyBoosh

I did ask them to send it electronically. I didn't have a pharmacy the last time so I asked them to add one. Which they failed to do. The office manager has to do it, why she couldn't do it before is still a mystery. In the absence of that, they MUST post it in 2 working days. Its only heart medication, so nothing f-ing urgent!

Long story short I went to the hospital the very place I'm supposed to be avoiding. But they only gave me seven tablets and said to "go see my GP". I feel like I'm reading a new adaptation of catch 22.

So will try again with the old bag at the GP reception, see if they feel like working tomorrow.

[selfisolatingsince2007]

Also the NHS now have 7 million people waiting for non covid appointments. Sure hope none of you plan on getting some other illness any time soon. 🤦‍♀️🤦‍♀️🤦‍♀️

[JamieLeeCurtains]

@selfisolatingsince2007 does your GP surgery have an admin email or contact details for the practice manager? I'd use them, under the circumstances. Or I'd put a letter through the letterbox for my GP. Possibly all three.

I had a 'hiccup' once at Reception involving a serious medical condition* and the practice manager sorted it out within five minutes. But I had to ask to speak to them.

*involved a thromosis & Clexane / Heparin - so like with you, pretty serious stuff

[selfisolatingsince2007]

@JamieLeeCurtains honestly the old receptionist was so difficult I just took the path of least resistance and went to a maternity consultant. Got it sorted and figured then I can deal with them later. Will call them and work out what maze they need me to go through to keep my baby and me alive and well. Presumably begging will be involved 😂

[DreamingofSunshine]

I'm in a flare of my autoimmune disease. Can't get hold of my Rheumatology department- they don't answer phone or emails, and I've been in hideous pain unable to sleep or look after 2yo DS.

Managed to get a private Rheumatologist on a phone consultation but it's £230 so not exactly cheap.

I know how hard it is for the NHS but it's hard to be in significant pain and not be able to get hold of anyone.

However, I needed a blood test and my GP surgery have been great at facilitating it. Also had a phone consultation for DS which was good and much easier than face to face.

[Becca19962014]

Everything has been stopped here.

Even emergency care is now triaged. Ambulances are extremely thin on the ground here best of times (think four hour wait average) so people are told to get themselves to hospital but that means you must ring and get permission over the phone to go in.

I'm supposed to be being seen every week to monitor serious medical conditions and deterioation in mental health.

I turned up for my appointment, booked by GP the week before because I'm having mini strokes several times a week after demanding I was to be seen (I've very severe medical phobia, missing apppointments is really bad for my mental health, and will not go to hospital ever voluntarily), the GP spent the appointment, they demanded I needed, tearing strips off me for putting them and everyone else at needless risk. I was devastated, already struggling with severe depression. I'd things I needed treating and all they wanted to do was to talk about themselves, showing just how worthless they viewed me. Yes they were scared but the appointment was literally just them having a go at me. No checks were done because of risk to them.

I'm having mini strokes. I can't be assessed via telephone for that. It's not use telling me to phone for an ambulance if I cannot move or speak. Yes I'm serious, that's the advice I was given.

I get medications daily due to risk. The pharmacist has rung, repeatedly to raise concerns about my welfare. All ignored.

I complained about lack of care and got told those with serious conditions are still being seen. They aren't. The triage system is rediculously badly managed - phone between certain times only morning and afternoon for a possible call back and must be available the whole time, the phone will only ring twice and if you miss it it's a black mark against your name. And they refuse to unblock their number for those who have Unknown numbers blocked - supposedly for confidentiality, which was fine when those people at risk with unknown calls blocked could go in but now they can access nothing at all.

The system they're using for e-consultations has security holes you could drive a double decker bus through but apparently that's not the point. Nor is the fact that most people here don't have any access to broadband to run the system.

The hospital and GP surgeries that are still open are dead. I know a receptionist who is genuinely worried they'll be closed once this is all over as they don't see enough patients to justify staying open and they've seen a massive increase in patient deaths from other conditions because all clinics have been indefinitely closed.

[Becca19962014]

GP demanded I was to be seen, not me!! That part wasn't clear, sorry.

[user1497207191]

My OH was in the middle of cancer treatment which the hospital stopped and he's not been able to get anyone from the oncology dept to call him back with their plan, despite phoning twice a week since the end of March. GP surgery won't even discuss it - they just say he needs to contact oncology. In the meantime, he's getting progressively more unwell, anaemic, etc., but no one in the NHS is remotely interested in helping him. Presumably we just have to wait until he collapses and then call an ambulance.

[Clemmieandareallybigbunfight]

Looks like June to get clinics up and running now and even then it will be minimal now. Combination of social distancing and reducing PPE use. Don't really know what's going to happen tbh.

[ToffeeYoghurt]

Have other countries stopped essential things like cancer treatment? I wonder if they're managing things better (like they have in other areas).

The infection rate is still high in hospitals so I presume that's why things are postponed? The risk of infection for vulnerable patients.

Perhaps if we'd got hold of more PPE (amongst other things) we'd be able to continue with the urgent treatments. And potentially more routine ones too. Why hasn't this issue been sorted out yet? We've had months now.

Also why do some medical providers use withheld numbers? Quite a lot of people don't answer those. And what about abuse survivors. They won't feel safe answering an unknown call.

[Becca19962014]

toffee I'm in Wales and it's all been stopped here - I don't know if you mean non uk countries given the uk countries are doing different things!

[Becca19962014]

toffee I was told that numbers are always with told to protect confidentiality. I withhold them, for the reason you mention, and was told to unblock them so I could access treatment as it'll be fine, so I either put myself at risk to have NHS treatment or can have none.

Trying to get the block lifted resulted in gems like "it's your problem, not ours" and "it's got nothing to do with the NHS we don't run telephone systems that's private companies so contact them" the latter when I contacted those companies told me the blocking of unknown numbers is not their responsibility but that of the "companies" they installed the phones for. So basically, not the NHS problem or the companies who installed the phones so piss off and stop bothering us. I've contacted the ombudsman who is apparently due to no staff taking much much longer to do anything so there's no chance of resolution from them either - they refuse to do anything other than via email which requires me to be able to down load and run an expensive program which I cannot do, or, unblock Unknown numbers on my phone because all their staff are working from home..

So no treatment, under any circumstances for me. Indefinitely.

It seems a lot of people have left their common sense back in mid march.

Access to buildings and shops has now become almost impossible if physically disabled as well. Say anything and you get told you shouldn't be out.

[Becca19962014]

Ffs withheld not with told! Bloody autocorrect!!

[justasking111]

My friend is a nurse in urology, so prostate, bladder problems etc. she is so bored as are colleagues, no end in sight to cancellations, very few covid patients, no-one has a definitive answer in her health board. Some are saying maybe September.

[TinRoofRusty]

I agree with Becca.

[YourVagesty]

Yup, was supposed to go for a kidney scan for ongoing kidney problems but everything has gone really quiet.

[maggiso]

Some hospital specialties are doing telephone consultations and planning to get urgent technical tests back up and running over the next few weeks. It depends on the department and the risks involved to both staff and patient.
It’s worth contacting PALs or the specialists secretary, saying your condition is deteriorating and see what can be suggested.

[toomanyplants]

I have a yearly mammogram, due to be going this week, they actually called me to schedule it in.
Really in a muddle over this as I know if I don't go I'll be worried, (have had a few recalls for biopsies, all benign) but at the same time I'm worried about going into a hospital and the close proximity of the nurses.