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

(120 Posts)
lesbihonest Wed 06-May-20 15:28:11

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 .

OP’s posts: |
JustSew Wed 06-May-20 15:36:31

Yes.
Cancer treatment stopped early.
Eye appointments postponed indefinitely.
Cardiologist appointments postponed indefinitely.
Dermatology appointment done by phone (yes really) but treatment arranged.
The big one though is Rheumatology. I have had a major flare of autoimmune disease since January, they agree that I need a new drug but are not allowed to start me on it as there is an embargo on new drug regimes until restrictions are lifted. So permanent damage is occurring and I'm in constant pain.

JamieLeeCurtains Wed 06-May-20 15:39:46

Bloody hell that's awful, OP flowers

I'd ask PALS what to do, and if you can be referred to another hospital that IS doing urgent bladder work.

I'm with Rheumatology and the Rheumatology nurses talk to me frequently over the phone, and I had a domiciliary visit today.

lesbihonest Wed 06-May-20 15:41:56

justsew it’s so bloody frustrating isn’t it . I get the pressures everyone is under - I worked for HDU, critical cate for three years and most of my friends work for the nhs in some capacity but I can’t understand the logic in stopping absolutely every service . Even MH community OT was saying she was told she might be asked to take on a nursing role in ITU . We are fortunate to have an absolutely massive hospital, hundreds of beds - but friends have said majority of beds are empty.

OP’s posts: |
JamieLeeCurtains Wed 06-May-20 15:43:03

@JustSew I wonder if it's a postcode thing? I was started on a new drug by Rheumatology two weeks ago (that needs regular blood tests) as I'm in a flare-up. All done via letter / phone / hospital courier.

MarrowWang Wed 06-May-20 15:49:47

MIL has had loads of tests and stuff cancelled, dietician appointment, cannot get a GP appointment even to talk about stuff..its awful.

I have had pain clinic appointments cancelled, and now have apparently been switched to a different one and will get consultation over the phone..quite how that will work (bearing in mind my last consultation which involved much pressing on areas and a lot of pain) I don't really know. Had a checkup for a previous op cancelled outright, no phonecall no nothing too.

MarrowWang Wed 06-May-20 15:50:59

Twice weekly physio and 'talking therapy' cancelled also. Thinking about it. Wrote those off ages ago so don't really count them anymore when thinking of cancelled stuff!

Lifeisabeach09 Wed 06-May-20 16:00:17

I don't understand why some services are going and some aren't--does seem area dependent.
OP, it's not ideal but can you access (afford) private consultant services (it they are running)? As I'm sure you know, private consultants are also NHS as well and can push for relevant diagnostics on NHS pathway.

Google private treatment consultants (relevant specialty) in your area and phone around.

Lifeisabeach09 Wed 06-May-20 16:02:22

*Just to add I had a private ENT consult (it cost £220 which I put on my CC) and was worth it but had scans on NHS.
I do feel you need a second opinion.

Laniakea Wed 06-May-20 16:07:43

Yes - our family with various ongoing issues have had the loads cancelled or ‘postponed’ to some undetermined time in the future: me (gynae, haematology & physio), dh (ENT), dd1 (endocrinology), ds1 (paeds, OT, SALT, psychology assessment). It’s disastrous for ds, young people with learning disabilities are at the top of nobody’s pile so I doubt anyone will care much.

Obviously no dentistry either. I don’t expect our glorious NHS will ever clear the backlog & there will be formal & widespread rationing of treatments within the year.

RunningAwaywiththeCircus Wed 06-May-20 16:19:50

All postponed here - including cancer treatment. Cannot see a GP. It’s as big a scandal as the gov mismanagement imo.

527040minutes Wed 06-May-20 16:45:20

I've had a suspicious mole being looked at delayed by dermatology. Rheumatology did an appointment over the phone and "diagnosed" me without ever having seen my joints, future appointments expected to be in 6 months to confirm but they've said to expect that to be delayed. Mental health team worked over the phone too for an initial appointment. Cancellation from endocrinologist. And we're working symptomatically for medication which should require blood tests but they're not doing those atm. Also delay in the referral to see a dietician.

My son's had cancellations from physio, CAMHS, podiatry, paediatrician, rheumatology, genetics. He's awaiting an ECG which has been cancelled until this has blown over.

---

Despite being understandable as to why it's happening it's still rubbish when you're in the middle of it, and seems to somewhat be a postcode thing as it varies hospital to hospital. This is a side to everything atm that a lot aren't realising is happening. We don't seem to have a healthcare system in place atm unless for emergencies/life or death type stuff or coronavirus. Most other things seem to be on hold for now.

I hope you find answers and some relief soon OP thanks

redtickreturn Wed 06-May-20 17:00:53

NHS worked here - we've just started getting instruction from NHS England etc about entering the recovery phase of the NHS which will be over the next 6 weeks. In theory everyone needs to move back to where they came from in order to get back to normal so all the redeployment, all the ward moves, all the clinic room take up by other areas, bring back all the home workers.....logistically impossible and will take months and months to sort.

I would go to PALS and discuss with them your concerns. The NHS is there for emergency's and you are definitely heading that way.

JamieLeeCurtains Wed 06-May-20 17:19:36

Deputy chief NHS bod: your primary care services are still there for you, your NHS is still there for you, so contact us if you need support ...

^^ Live govt briefing now

I think this thread shows the opposite tbh

JamieLeeCurtains Wed 06-May-20 17:35:13

Sorry I misheard Jenrick and his introduction - the pledge about the availability of health care was just made by Nikki Kanani, director of Primary Care for NHS England. Worth mentioning to PALS maybe.

BBCONEANDTWO Wed 06-May-20 17:46:17

OMG my heart goes out to you all - it's a bloody disgrace.

MarrowWang Wed 06-May-20 18:21:08

Deputy chief NHS bod: your primary care services are still there for you, your NHS is still there for you, so contact us if you need support

Certainly not that where we are. GPs are doing only video calls, so MIL hadn't even spoke to anyone in 7 weeks. All her appointments cancelled. She was being investigated for bowel cancer. No further forward. Her fortisip drink things had been randomly stopped and noone at doctors would tell her why (were a specialist recommendation and apparently its very important she drinks them..). GP wouldn't even entertain talking to her as she has an 'old' phone so no videocalling, and apparently they could not do normal calls hmm

So we broke lockdown rules and told her to come up here. Could have gone there which was original plan but..she said if we breaking it anyway she might aswell see the kids and I couldn't argue against it tbh. Very angry it got to this stage.

Long story short, she got her video call, fortisips back to normal, painkillers increased for now too, been given tranquilizers so can sleep through pain too. GP said he didn't understand why receptionists wouldn't put her down for a phonecall, as yeah videocalls preferred BUT a lot of people haven't got phones that allow it. So seems its..as usual (at our surgery anyway..not ALL of course)..receptionists being dicks. Told scans and such unlikely to be for a few months now though still.

MarrowWang Wed 06-May-20 18:22:37

Before anyone says why let it get to 7 weeks, we were only told of her troubles with contacting them a few days back. Otherwise it would have been quicker. Yes a complaint is in too, but will get nowhere..especially given they seem to investigate themselves. When I had issues with an operation it was investigated by the people I was complaining about, plus their word was taken over mine for most stuff too!

Powergower Wed 06-May-20 18:23:15

I'm waiting for an urgent cervical cancer health screening appointment. I was told over the phone by the nurse that usually there's a 2 week pathway for sometime with my symptoms but at the moment it could take months to even get a phonecall from the gynae team. It makes me really sad that so many people will die due to lack of screening/ treatment/ diagnosis. It's so depressing and so worrying to not know.

MarrowWang Wed 06-May-20 18:33:12

It makes me really sad that so many people will die due to lack of screening/ treatment/ diagnosis.

I am starting to wonder if this lockdown has killed more than the virus would. Especially long term. Theres got to be a LOT of people have already died in the past 7 weeks through lack of care/urgent investigations and such. So many cancers are only realisticaly treatable if caught early..2 months would make a big difference to so many I would think..

MarrowWang Wed 06-May-20 18:34:11

Wow, sorry for what looks on reading back a very insensitive post blush I hope you get my gist, I wasn't trying to worry you..I worded that very wrong given the whole post I was replying to. Sorry.

FirTree31 Wed 06-May-20 18:35:06

GP surgery closed but you can call, and wait for an appointment for three weeks. No cervical smears (I belive all routine cancer screening has been stopped), lack of accessible contraception which very very low on my priority list (single pringle), but will be higher for some. My brother is a Paramedic, he says its very very quiet, to the point of boredom.

I can't imagine the fallout from stopping so much. I'm so sorry you're going through this, I really hope a solution is found for you (and all affected) ASAP, after all, that is the role of the NHS. flowers

Lifeisabeach09 Wed 06-May-20 18:41:27

I'm waiting for an urgent cervical cancer health screening appointment. I was told over the phone by the nurse that usually there's a 2 week pathway for sometime with my symptoms.

It's your health. Don't let it get too late. Either push, push and push or see what's available privately. Don't wait for the NHS.

Twilbury Wed 06-May-20 18:46:16

My B12 injections have been stopped which really worries me and I had a letter for a routine smear 2 months ago but I obviously haven't been able to make an appointment.

I understand that things have to change but seeing doctors on tv most days telling me that surgeries are open for business is slightly annoying.

Sarah Jarvis in particular seems to be everywhere !

Ginfilledcats Wed 06-May-20 18:48:20

Sorry for the troubles you are experiencing both with your condition and with the hospital. We have been seeing urgent patients in cardiology etc for about 2 weeks and from next week we have be told to "get back as close to normal as possible" whilst also doing all the extra stuff for covid.

However every single patient cancelled or on any type of waiting list has been reviewed by a consultant (well their referral and or notes/results) and has been given a time frame of when to be seen so we have a list in order to get patients back in. I presumed every hospital was doing this to assess risk.

I'd advise ringing Pals and asking as to the current plans re out patient provision, and ask to see a copy of the consultants risk stratification of your case and condition that justifies you being cancelled/postponed for however long.

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