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 .

[Bertoldbrecht]

@cookingmywaythroughlockdown I can’t imagine the stress that all the planning etc has caused for you and your team ! It’s so complicated and I work in a district general not a massive city hospital ! We’ve had staff redeployed from all over to help us as well as moving part of our unit to 3 different wards to accommodate the huge increase in numbers of patients. Just glad I wasn’t in charge of it !

[notangelinajolie]

@Twilbury

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
My injections were stopped too. I did a bit of googling and discovered that the guidelines for B12 have changed again. I spoke to my GP and she asked me to send her a link to the info I had found. I received a text a couple of hours later with an appointment for my jab.

Please read this and tell your GP about it. Mine didn't know and said that guidance for everything is changing all the time and they can't keep up with it all atm.

pernicious-anaemia-society.org/pernicious-anaemia/bsh-guidance-on-b12-changed/

[ProfessorPootle]

My ds has ongoing appointments in various clinics at UCLH, so I think pp who said teaching hospitals appear to still be operating to some degree is correct. Short waiting times at the moment too (e.g. 3-4weeks for referral to different clinic).

If op lives in an area with a teaching hospital might be worth trying to get a referral there?

I’m wondering why all the nightingale hospitals are sitting empty, could future Covid patients be primarily treated at them, together, so they effectively form a quarantine area away from mainstream hospital services?

Then hospitals are able to start tackling the backlog of cancellations? Also people in need of urgent treatment for life threatening things like heart attack and stroke will be more likely to go to their local A&E if they know all Covid 19 is being treated at the nightingales. I’m sure this is very simplistic and there’s lots of reasons why this isn’t happening, just seems odd we’ve got these extra resources specifically for Covid 19 that aren’t being used while NHS services have ground to a halt to allow them treat Covid patients at every hospital??

[lesbihonest]

cooking I’m so sorry , it’s just frustration and fear , my best friends and lots of relatives are GPs, midwives, dieticians, consultant surgeons, other friends are senior charge nurses, A&E band 6s, ITU specialist nurses ... honest to God I do understand the pressure to some extent . I know how awful it was to work in critical neurosurgery without having the added shit of knowing there’s a virus on the go too . Did it for three years and we had no beds on a normal day - I can’t imagine how horrendous it is now .

It’s just fear - terrified of corona killing me or my family .... but equally I’ve been told any more delays are pushing me towards having a urostomy one day - all this was delayed for years already ... and that terrifies me too

It’s very complex anyway. I’ve been told I’m bloody unlucky - very rare to have bladder problems under 30 and female .... it wouldn’t be sorted easily or quickly no matter what happens .

I’m probably venting my frustrations in the wrong way, I’m really sorry.

[cookingmywaythroughlockdown]

No it’s ok, I’m sorry too. Just tired.

[cookingmywaythroughlockdown]

What’s quite funny really is I’ve done the managing no beds thing for years and the worst day of that wasn’t as hard as a day of this when we had beds! It’s weird really.

[ToffeeYoghurt]

I was wondering why the private hospitals aren't sticking to private considering Covid patients are being turned away. So it's not as if they're using the extra space

Then I realised. Most private consultants also do NHS work. I assume they're focusing on that.

I'm sorry things are so bad for you OP. This pandemic is causing so much damage all round.

They should at least be offering you a virtual GP appointment - regularly if it helps you. There's no reason why they shouldn't and many areas are doing just that.

Can you ask your GP if you can get some support that way? I know it's not the same as getting things moved forwards with the hospital.

[Porseb]

And while we're now trying to put services back, the NHS still needs to be flexible enough to move back to pandemic footing for second surge / spike.

We can't keep nightingales running as Covid only as the staff required to staff them are redeployed from other areas and they're needed back in their original roles to re-start services.

[selfisolatingsince2007]

My GP not taking any appointments at all in advance. You have to call up to be triaged to get an appointment on the day.

I'm pregnant and they were suggesting that my antenatal care would need to be by phone. I have a higher risk pregnancy which needs extra monitoring, so basically had to ask my midwife nicely to do all the GP appts instead.

[ypestis]

I’ve had gastroscopy cancelled. Not been given a new date. It wasn’t a review appointment so not a pre existing condition. I keep telling myself it’s probably nothing too serious but it is a worry.

[PurBal]

Gynaecologist appointments. Which isn't too bad but I need my coil removed soon and an ultrasound. My gynaecologist is private (I chose to go this route as she is a local specialist in my condition) and the hospital she works at has (rightly) given their building to the NHS. But it means she has no premises to see anyone. Fortunately, unlike others, it's no biggy right now. I can wait a few months.

[cookingmywaythroughlockdown]

Toffee we've moved lots of services out to private facilities so the nursing staff there can support and also, bluntly, to get people out of harms way so that essential appointments are on 'colder' sites. And yes the doctors that normally practiced there are at the main hospital sites.

[Purplewithred]

Please please please everyone who has had this kind of disappearance of care report it to the CQC www.cqc.org.uk/give-feedback-on-care NHS England www.england.nhs.uk/contact-us/complaint/ and your local Healthwatch www.healthwatch.co.uk/have-your-say. The NHS were pretty damn quick in switching out of these services, let’s see if they can reinstate them as quickly and efficiently.

[Nonotthatdr]

Nhs GP trainee here. You should be able to contact your GP by phone. They can then phone or video call you back (and if you can’t video call then should phone) and then see you in person if needed.

We are minimising our face to face to the very essential because we are a risk to our patients on the whole rather than patients being a risk to us. However urgent and essential stuff like warfarin blood checks, baby imms, dressings, smears on one year recall (people with previous abnormalities not standard screen) and seeing those that need a physical assessment (after phone triage) should all still be taking place.

If this isn’t happening please contact the CCG (clinical commissioning group) that your surgery is part of and explain the issues.

[QueenQuinn]

I had an ultrasound scan for gynaecology yesterday - my original appointment had been cancelled due to covid and then I got a phone call on Monday asking if I could come in. So perhaps things are starting up again.

[MrsBungle]

@cookingmywaythroughlockdown she doesn’t have an increase in symptoms thankfully and her consultant has said to ring if anything does seem to change. The waiting list for her op was 10 months (from January) so it’s not urgent anyway (at the moment anyway).

[skippythebushkangarootoo]

I've had a good experience with my GP tbf- I never usually access them but my BP has been consistently 220/110 for a couple of weeks so I rang my practice- answered on first ring! Nurse rang me back within half an hour and agreed Dr needed to speak to me. Dr rang at 3:15pm and after I told her what was happening she got me in one hour later. Saw GP, he redid BP (124/120) and spoke with consultant at hospital. Plan agreed and my prescription was sent directly to the pharmacy and appointment made for me first thing next morning for bloods and ECG. Prescription collected within ten minutes, tests completed and we will see what happens! I've got to say they were all fantastic and extremely quick! If people do have another issue that is of concern I would definitely say access your GP if needed- they are still there!!

[skippythebushkangarootoo]

BP 224/120 sorry

[cookingmywaythroughlockdown]

@Purplewithred I'll see you Monday then, you can come and work a 12 hour day with me picking up the pieces. I'll even let you fill in some of the CQC paperwork seeing as you're such a fan.

[Babbas]

Cooking - we're allowed to have a thread to discuss how the STOP in critical nhs services has affected us. You're not the only one on the frontline, or the only doing a 12 hour day. The nhs is in freefall, the government are a disaster and those within the nhs who stopped services should now be working hard to reinstate them as quickly as possible. Surely you of all people must understand that the nhs exists to save lives and Purple is right to say services must be reinstated.

[PJPanther]

The chap from ONS on Andrew Marr at the weekend said current figures show the highest number of deaths since weekly records began (12000) and reckons of those there are something like 3000-4000 "indirect" deaths a week meaning not covid related but those who may normally have gone to hospital but can't currently. That's a quarter of deaths, it's a big number and I do not envy the task of unravelling the solution to this tangle.

This is on iplayer and worth a watch. It was a really good interview, I cried all the way through it. There is so much at stake here.

[tillyteatowel]

My GP surgery is open and I’ve had several phone appointments. I’ve had virtual appointments with my hospital consultant and a referral going ahead. Not everything is shut:

[EnthusiasmIsDisturbed]

I really do feel for those who have had appointments cancelled and the not knowing when the next appointment shall be is causing huge anxiety for some that in turn has an impact of their physical health

We are going through a time like no other time in history there has never been a pandemic on a world scale that compares to this. The priority in many cases has to be stopping the spread of covid. It’s impossible for hospitals and many other services to run a full service due to this.

I do completely empathise with people’s frustrations and feeling angry and let down and the fear about missed appointments. I would feel the same.

I do get pissed off though when it’s obviously political and playing into people very real fears the comments are along the lines of the whole of the NHS has come to a stand still apart from covid wards. This isn’t true.

Many of us are still working, and for many it’s stressful (or more so) due the the current situation and many staff are trying to work in a way we can to keep us all as safe as possible.

Services are being reinstated but it will be slow, numbers coming in for appointments will have to be very very carefully managed. It’s a logistical nightmare but how to we run hospitals/clinics/community services etc like we always have - it can’t be done at the moment it’s not safe to do so

[Rebelwithallthecause]

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

[JamieLeeCurtains]

I've now been told that Physio and the Chronic & Persistent Pain Service won't reopen till at least September. Very sad.