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 .

[FishOnPillows]

I had gastro and gynae appointments cancelled/postponed. Had an ultrasound beginning of March which showed a lesion on my liver, but the follow-up gastro appointment to discuss further testing/where to go from here was point blank cancelled. Also had a gynae appt in March ‘postponed indefinitely’. So now I’m stuck taking bowel prep laxatives every few days because it’s the only way I can ‘go’ (before I started taking them I couldn’t go and ended up in hospital with sepsis due to a bowel infection). I’ve you’ve had a colonoscopy before you know awful the bowel prep stuff is. And between my bowel, failed endometrial ablation and prolapses, I’m in pain so bad I sometimes give up and just lie in bed crying. And I’m still working full-time.

It took months to get these appointments anyway, I’m now trying to prepare myself for not being seen until next year. And hoping the liver lesion isn’t anything sinister.

[user1635482648]

I got shit news without warning in a letter instead of face to face. Pretty much everything is either cancelled or inaccessible.

But yeh, sure, the "NHS is still there for you".

[527040minutes]

@Lifeisabeach09 private isn't always an option atm even if you can afford it. I looked I to it for the suspicious mole that's been pushed from 2 weeks to 2 months due to corona and private clinics aren't currently running either. It's had a knock on across more than "just" NHS services as so much of it interlinks and private facilities here are being used by the NHS to ease some of the issues there.

[MarrowWang]

GP receptionist have discovered a whole new level of arsehole now they can refuse appointments to everyone due any reason.

Seems true enough

I sometimes wonder why GP reception seems to attract so many powertrippers. At all 3 surgeries I have used (going back to living with my mother and father) there has been at least one of them who seems to just be a dick for the sake of it. The wya MIL has been treat the past few weeks though takes it to a totally new level, she says shes been ringng every other day trying desperately to speak to someone, even crying on the phone sometimes and told the same each time. No videophone, no 'appointment', which is just..ridiculous. I am so angry this has happened. I mean, I guess its possible that the GPs did say only videocalls and are now trying to cover their own arses but...I'd say thats incredibly unlikely. It can't even really be put down to 'advice given was misinterpreted' either as surely common sense would say that it sounds wrong and would be queried, and if not, then once you have some old woman on the phone literally crying as she does not have a phone capable of taking videocalls (nor does she have the internet, which is required for videocalls as far as I know) and is in pain and confused..you would bring it up. Its just such a ridiculous avoidable situation.

[lesbihonest]

I think that’s what upset me most this afternoon; when I did ring the surgery they said I can’t talk to anyone now - they aren’t doing appointments unless a doctor decides it’s absolutely essential, and apparently I can cope until July or August now .

I’m hanging on by a thread, and was managing OK with having that support there and knowing I could check in with GP 4-6 weekly - to be suddenly told no, you’re on your own now, is awful .

Dsis is having a similar issue - she has multiple LDs and autism though . She’s lost her swallow - told she’s at v high risk of choking and aspirating - but no one knows why . Can’t help her until SLT can see her face to face . So she’s now eating soft and mashed diet - which has upset her hugely, all she talks about is choking and she’s scared to eat . Carers can’t help as they’ve been told they can’t spend as much time with her now - she can only eat when carers can sit with her ... it’s so bloody frustrating .

Yes I feel the same re clapping ...

We can’t access private healthcare up here as far as I know, it’s being used by NHS I think .

I would understand but we only have something in the region of 50 confirmed patients . Well over 1000 beds in adult acute alone ... you wonder how much is just lying empty !

[Maxandezra]

I'm an NHS clinician in a non covid specialty. To be honest it is a bloody disaster. Save the NHS my arse. The NHS has totally and abosolutely collapsed. Maybe not if you happen to presnt with COVID symptoms, but god forbid you should need treatment for almost anything else at all. It makes me so, so angry.

[Tulipstulips]

I had a smear in April, it came up with abnormal cells and now I’m booked for a colposcopy in early June. I have a private consultation by phone tomorrow to see if I can get a private colposcopy faster. I’m saying this because while some areas seem to have shut down, others aren’t so it is worth calling a private healthcare provider is you have insurance or can afford it.

[Nat6999]

I had a private neurologist appointment booked for end of March, it was cancelled. I have peripheral neuropathy most likely caused by some antibiotics I was prescribed last year. I am virtually unable to walk & worried sick that the longer I am left, the less chance I have of getting the feeling in my feet, legs & hands back & the more damage will be done.

[Miljea]

I've read the OP and skipped to the end, my apology if what I'm about to say has been covered; but first, my genuine sympathies about what you've been through and are going through.

Secondly, as we all know, there had been no coordinated response to 'all this' thus all health care Trusts are doing different things, but ours (in Hants) is as if now, opening up to less urgent stuff. It will take a bit of time, but I really hope we're able, sooner rather than later, to offer the diagnostics and treatment you need.

FTR, I speak as a coalface worker, not a manager who tells you what you want to hear!

[Powergower]

It's incredibly frustrating. I've tried calling some private facilities but they've all been taken on by the nhs, yet are all empty. Our hospital said that most of the wards are empty and a&e is very quiet. They've told us we must still attend hospital in an emergency. Yet no services are running.

My niece is a gp and is wfh doing tel consultations only but said in the first instance the calls always go to a clinical practitioner so she has nothing to do all day. She's astounded, as am I, that all screening and treatment us currently on hold.

My tiny city has 2 big hospitals, why can't they keep one for covid (less than 100 cases to date and falling) and open the other one hour routine emergency appointments. If pharmacies are open why can't gp surgeries? As for the vanity projects that were the nightingale hospitals. What a waste of time, effort and money. Why not move all covid patients there and start to reopen hospitals for normal admissions.

[JustSew]

@JamieLeeCurtains without a doubt health care is a post code lottery and was long before covid. I've just finished breast cancer treatment and was on a national forum. The difference in care between those living in large cities, mainly London and where I live was astonishing. I was envious of those who had weekly appointments with oncologist during chemotherapy. I saw my onc once during the entire treatment.

[justasking111]

OH has a torn rotor cuff, consultant said he would operate within two weeks, time sensitive op, it was cancelled. He was in so much pain booked privately with same surgeon at a spire hospital. It was cancelled the night before. The NHS had taken over the hospital.

I feel sorry for him it is causing him so much pain and healing in such a way he will permanently lose movement in his arm.

I have read so many sad stories of people missing out on urgent treatment. I fear it will be in a years time we will have counted the people we have lost to something other than covid.

[Fluffymule]

Yes. Breast cancer reconstruction surgery.

Thankfully not a life threatening situation but still adds to the mental burden of living with Cancer when things become unclear and uncertain around my treatment plan. It feels like the light at the end of the tunnel has dimmed completely.

[cookingmywaythroughlockdown]

Well look I've spent the last ten weeks organising this shit show with my team in the hospital I work in and if any of you think you could have done better in taking services on to a war footing with no resources, not enough staff, everybody scared to hell and a critical lack of PPE and kit then come along, have my not especially well paid job right now.

Yes everything has been cancelled. Partly that's because we needed the staff, all of them on the wards. Covid Wards need a better staff ratio, not least because when somebody crashes the poor sods working there need to get in to level 3 PPE before starting resus. My colleague had to help an icu doctor out of the gown she was trapped in, she'd stuck her head in the arm trying to pull the thing on quickly. And then there was the fact that if you come to hospital for any reason we knew perfectly well you would come in to contact with an unknown number of staff and patients who are incubating it and don't know it. So anything that wasn't immediately life threatening got canned because Covid could kill you quicker. And then there's the fact that we don't actually want to catch the Covid you're desperate to breathe over us.

So yes it's crap. It's horrible accumulating an huge waiting list to go with the one we had. It's awful letting patients down. But honestly and truly we've been trying to keep you alive. It would be nice if you could give us a break instead of accusing the whole service of incompetence, neglect and failure.

[Bertoldbrecht]

I had a ct angiogram cancelled for the 30/3. It had only been booked a few days earlier. Got a phone call on Monday asking me if I’m free for it next week so presumably things are starting to move.
On the other hand I’ve developed sciatica (have long history of back issues but never formally investigated, just presumed normal wear and tear). I’ve had 2 telephone consultations about it with a gp from my practice who I’ve never met. Obviously it’s only a guess that it’s sciatica - they can’t examine me, check reflexes etc they are purely going off my description of symptoms. First he prescribed a drug that on reading the leaflet I realised I couldn’t take (interaction with something else) now he’s prescribed one that’s fairly heavy duty... said I might need an mri at some point. I can’t see why face to face gp appointments can’t be staggered somehow, I appreciate I’m not an emergency but I’ve been prescribed medication that may or may not be appropriate, meanwhile I’m off work worried that I’ve seriously damaged my spine

[MilkNoSugars]

It is so upsetting to hear about all these cancellations and how people are suffering as a result.

I had a routine check up booked in at the hospital this week to see how I'm getting on with a new piece of diabetic kit. I was fully expecting it to be cancelled as there's no issues and it's just a check up but they emailed me and did an online appointment instead.

Utter waste of time IMHO when more urgent stuff is being cancelled.

[GrumpyHoonMain]

Generally the areas with teaching hospitals (particularly those linked with Oxford and Buckingham Universities which includes Milton Keynes Hospital and John Radcliffe and most of the hospitals in-between) haven’t stopped everything. You could ask for a referral if they can get one faster.

[Bertoldbrecht]

@cookingmywaythroughlockdown
Hope you didn’t think I’m criticising you ! I’m frontline nhs (ICU) too but more worried about gp contact rather than attending hospital.

[ToffeeYoghurt]

It must be decisions made at local level.

The government has been quite clear urgent appointments are still going ahead.

I suspect the HCPs are doing as best they can with a pandemic going on.

Some of the staff are dead. Others are off sick for weeks. A lot of the doctors and nurses and other HCP who've died are those from outside ICU. It's believed this is because they're not given the same level of PPE due to the shortage.

I know opthalmologists have had a disproportionate death rate worldwide. The nature of that job puts them at very high risk. The close up face to face roles are incredibly vulnerable.

Hopefully the government will finally get hold of enough PPE for all our frontline workers (non HCP included).

And let's hope they don't lift lockdown before they've done this and before the infection rate has lowered. HCP are bearing the brunt.

Nobody's getting treatment for anything if the staff are ill or dead.

Of course even in areas not currently suffering staff shortages, we need to postpone routine appointments. It only takes one infected patient or staff member to spread Covid throughout the department. To vulnerable patients and staff alike.

The above is the reason why a musician, one of the stranglers, died the other day. He caught Covid whilst staying in hospital.

[cookingmywaythroughlockdown]

No @Bertoldbrecht I know you weren't. Just some other posts touched a nerve. We're trying to work out how to restart stuff now but Covid is so much an issue. It's working its way through the staff. The paranoia that you're next makes you a bit short tempered - I know you will recognise that!

[MrsBungle]

My 10 year olds cardiology out patient appointments have all been cancelled. She’s awaiting a heart operation. It’s scary that she’s not being seen and checked

[cookingmywaythroughlockdown]

@MrsBungle the surgery has almost certainly been cancelled wholesale till icu is back on its feet a bit I'm afraid. Paeds services should get going a bit quicker though. Is she suffering an increase in symptoms? I would suggest trying to get through to her consultant to report that if so.

[MiniMum97]

I hope you are all speaking to PALS and writing to your MPs. I have done the lack of access the healthcare is terrifying.

@cooking.... (sorry MN app won't let me tag again). No one is criticising the frontline staff. But the appointments being cancelled and postponed on this thread could result in life changing problems or death so I don't think anyone should say that people shouldn't be complaining or frightened. It's bloody disgusting and this could have been handled very differently to allow more "routine" (I bloody hate that word as it's not just routine appts being cancelled) appts and treatment to go ahead. And if the NHS wasn't in such a poor state before the crisis maybe it wouldn't have collapsed under the pressure.

People should be up in fucking arms. At the very least, please write to your MPs.