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 .

[needanewusernameplz]

Any update from anyone? Hoping for some positive news. I have a newborn and wanted to get a rash she has looked at, and the receptionist said "well you aren't coming in here" so off to AE we go.

[YourVagesty]

Bit of an update:

I phoned the hospital yesterday because my condition is playing up and they've given me an outpatient appointment for next week. So a bit of positivity. Things might be opening up a bit (for those of who haven't been able to access your treatment).

[user1497207191]

My OH was half way through cancer treatment and it was just cancelled via a curt phone call from a receptionist on the morning he was due to go for day treatment. He's tried phoning twice a week for the last 6 weeks to get info/support but is just being fobbed off by the receptionists. His requests for the consultant or nurse specialist to phone him have been ignored. The GP surgery are also refusing to do the normal blood tests he has every 3 months. The NHS around here has definitely put the shutters up. Blaming patients is a disgrace.

[Butterflywings1]

Yes - my husband was under close monitoring for a heart issue and was due an MRI to check if he was at the threshold and needed surgery - MRI cancelled so now we just hope he doesn't have an aortic aneurysm before they schedule him him!

My daughter waited ages on a waiting list for hospital physio after spinal surgery - we received a letter to say they'd cancelled & cleared their list not paused it, cleared it and had to get referred again!

[Miljea]

I'm front line NHS, in imaging.

We never cancelled 2WW; and we're now opening up more and more services.

But patients are refusing to come in, to the extent that we have had to introduce a cancellation code to reflect that group, so we don't get hammered down the line for 'failing' to image them.

[Becca19962014]

Many people, and I include Robert Jenrick who clearly thinks the same thing, have this stupid idea that those sheilding are so ill they're on disability benefits so can live off them indefinitely. Reality is many had those benefits taken away, many more in the coming weeks will have them stopped because their treatment has ceased, there's no such thing as indefinite disability benefits anymore.

They'll get nothing.

Their jobs will go to people who can do them without risk unless they're willing to risk their lives leaving them with literally nothing as sheilding "just" advice so I expect the dwp will use that as an excuse to refuse universal credit, which given everyone claiming must be working towards work they won't be eligible for anyway.

[JamieLeeCurtains]

Robert Jenrick in Parliament said a little earlier that shielding people should Carry On Shielding.

I'd also like to know what they're supposed to live on in the medium to longer term.

[Becca19962014]

A lot of people expected to sheild are in work. I think that's a large part of it. They assumed something would happen to make things safer for them, as employers aren't going pay for people to sheild indefinitely, and benefits the way they now work won't either. Very few will be able to continue sheilding anyway as work places reopen and the volunteers they relied upon go back to work.

I'm supposed to sheild but can't.

[hollyhopscotch]

a lot of people didn't realise the sheilding could be extended

But why wouldn’t it be? The virus doesn’t have a calendar. It’s not going to take a holiday just because of an arbitrary cut off date.

[user1497207191]

a lot of people didn't realise the sheilding could be extended.

Well what did they think would happen? People have been told a vaccine would take many months, maybe by end of year or even next year. Wasn't it obvious the most vulnerable being shielded will have to continue shielding until a vaccine? Why did they think it would be safe without??????

[MaxNormal]

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.

You mean apart from Spanish Flu, the Black Death and so on?

[Flapjak]

MSK services in my area have been recalled back to normal duties, which suggests that some outpatient services which are non urgent will commence very soon. Lets hope so anyway. Lots of empty beds in hospitals!

[FishOnPillows]

Some clinics in some places are starting to rebook now. I’ve just received a letter for a telephone appointment with gynaecology next month, and my mum’s received one for an ultrasound next month. I’m still awaiting GI and neuro outpatient appts.

Of course, booking doesn’t necessarily mean happening though, we’ll have to wait and see. My original gynae one was March, which was cancelled and rebooked for early May, which was cancelled...

[Becca19962014]

If you don't hit the target to find work you'll find that stopped too.

All because treatment has been stopped.

It's not a national thing so can't be considered at assessment.

[Becca19962014]

Sadly yes, and many already have. I read somewhere this evening deaths are up by over 50,000. 32,692 are due to covid-19.

Another knock on of this is the withdraw of disability benefits because many are dependant on treatment being done which has now been stopped. The dwp aren't interested in covid-19 stopping the treatment just it's been stopped. And yes they are still doing assessments just down the telephone. And yes from withheld numbers. And yes people are to claim if Jobseeker's equivilent whilst waiting for an appeal which in some areas already can take a year, if you fon

[justasking111]

So many are going to die aren`t they

[Becca19962014]

Four months, intention is for clinics to reopen July at earliest here and that will still be when the most ill here will be sheilding can be devastating for a lot of serious illnesses.

I've heard from my specialist that to stay save and avoid the second wave to sheild for another 16 weeks when these are up - a lot of people didn't realise the sheilding could be extended.

It's being used as an excuse, well to me in complaint responses from pals anyway for departments not to open. IF that becomes general policy - doubling the sheilding that's November and most clinics aren't open here over the winter due to flu shortages which close the hospitals. There are still people waiting here for cancer treatment they were supposed to begin last autumn which got cancelled due to flu, then got appointments for spring and found they were cancelled due to covid-19. That'll be almost a year since the cancer was found with no removal or treatment for it for those people.

I don't know the answer, just that there's an ever increasing time bomb of ill people desperately needing treatment being put back more and more who will need more treatment when it reopens.

[Becca19962014]

magg our PALs confirmed to me everything except life threatening emergencies are stopped. All staff have been redeployed elsewhere. Deterioation in condition unless to life threatening level isn't deemed a problem.

The NHS will collapse when it reopens with people who have gone months without treatment and support suddenly needing it, and with a second wave of covid-19 that's a disaster waiting to happen.

[Becca19962014]

toomany think about going.

All of ours have been indefinitely cancelled, even those for women who have found lumps since March being told to wait indefinitely as oncology clinics are closed so there's no point anyway.

There's a lot of very frightened women in my area now. Obviously do what's right for you, but a lot of areas are refusing to do any screening at all now. If they've made contact that tells me they can do it with social distancing and there won't be loads of nurses.

Here it's done in a mobile unit and social distancing is impossible.

[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.

[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.

[YourVagesty]

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

[TinRoofRusty]

I agree with Becca.

[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.

[Becca19962014]

Ffs withheld not with told! Bloody autocorrect!!