How many people have been failed by the NHS during lockdown?

[Polnm]

My DH has cancer.

His appointment in April was by phone
His appointment in August was postponed until October

How is this acceptable? Hospitals are empty whilst patients can’t access care.

GP appointments by zoom with a 2 week wait for a basic blood pressure check in person or to take bloods

Why isn’t there more publicity and outrage about this?

We can’t be the only family going through this surely?

Once you breach, it’s better to get the next cohort seen so they don’t breach - rather than “catch-up” - when there is no give in the system. DH is seeing people with more advanced disease. They have to fight to be seen by a GP, typically several times before they can be referred, then breach TWR target...and -surprise! - cancer is no longer treatable

There are so many levels of profound dysfunction in what you describe. As you state, the targets produce perverse behaviour which is the presumably the antithesis of their intention. The NHS almost seems to want cancer patients to be delayed from effective diagnosis until the point of no return. After all, treatment is expensive and there are zero consequences to the NHS for delivering some of the lowest cancer survival rates in the developed world. The flight path from finding a lump to seeing a radiologist, biopsy and benign result was two weeks for me. You choose a doctor, pick up the phone, book an appointment at your convenience. This is what health care looks like in the rest of the developed world. It involves insurance. The UK will not change until the quasi religious mania surrounding the NHS ends. Despite the fact it basically shut up shop in March to 'protect itself' while people with serious medical conditions were told to stay at home and shut up, there is no sign of patient centric change. It's a deranged system.

The government have been too busy cocking up education and vilifying teachers to take notice of NHS care.

No school childcare impacts on work productivity which reduces money made. No cancer care has a much lower impact upon the economy, therefore the government don’t care.

People need to kick up as much of a fuss about healthcare as they have about education - though beware, I’m sure they’ll find a way to shift the blame to doctors and nurses.

@RunningAwaywiththeCircus I can tell you have little to do with general practice with the comment about pay, working 2 days a week and being able to retire at 55.

I definitely agree with a lot you say about things needing to change, streamlining and protocols. It's going to take a long time. I can't wait for my workload to ease a little in the meantime, I'd love to share it out among some of the other services available.

I am so sorry for everyone who is suffering due to lack of care and I am so very sorry for those who have lost people.

I had my initial appointment with a surgeon cancelled in May. I've been told it will be 'a very long time before I see them' because I'm not critical. I'm now using my savings to see one privately. I swore I'd never do that, it's money we had ear marked for very much needed house maintenance but I was worried that my condition was deteriorating and I could be left with avoidable permanent issues.

The gps response was to prescribe more painkillers by email.

I asked the private surgeon what would happen if I left it. He already thinks it might be too late, we will see what he thinks when the results of my scan arrive.

Im on regular immunosuppressant medication and I'm supposed to see the consultant or nurse every 3 months for review. I now describe how I'm doing over the phone. I guess that's better than nothing. I'm booked in for treatment in October, that's changed to a phone call. Am I supposed to treat myself over the phone?

I've had 'physio' over the phone. They couldn't see my movement or how I'm doing. Those phonecalls counted as treatment and so I've run out of nhs funded physio - that has to go back to the gp to see if I'm allowed anymore.

It is a broken system.

I don't think that couple are representative really. There is definite need for change. Our practice is trying to make positive change with the resources we have. We have funding to get additional services into the practice. We are desperate for a dietitian to help with weight management and diabetes. Unfortunately, we are hitting a brick wall and lots of red tape.

Some horrendous stories on here

The variation is shocking, it really is a postcode lottery. I wonder is it a regional lottery as well?

I'm not in England, and my GP has remained open throughout. My routine smear that was due in March was postponed, but with the proviso that if I was to experience any changes, worrying symptoms, etc to contact them and they would see me. Thankfully, everything has been normal and they rang me last week to advise that they're now seeing routine appointments again and when would I like to be booked in.
Similarly, my MIL (registered to a different GP) has been receiving her usual fortnightly blood tests at her GP with no issues. Whilst she was shielding, they sent a nurse to her to get them done.

However, I do agree with previous sentiments by other posters. You can be critical of the NHS and still be thankful for them, and BoJo and his band of merry bastards have done a number on us in that regard with "Protect the NHS".

I also think it's a deliberate move by the government to run it badly into the ground it has to be privatised like they wanted.

Then people like myself and millions of others will be fucked, none of these will give me a policy, I have tried. There are many health conditions that aren't covered. Of course not, we aren't cheap to treat.

My dad (90) has had four eye appointments cancelled which were marked as urgent in december.

kitten 💐

I have a 13 week old the pre natal care was ok, post natal in hospital was good and by midwives during the first week/10 days was good.

BUT we've had to pay privately for tongue tie division as this was having a severe impact on breastfeeding (I was in agony). No tongue tie clinics running during Covid and if it didn't get done before 12 weeks the NHS won't do it anyway.
Prescribed antibiotics for an infection in my C Section wound (luckily picked up by my midwife at post natal check) suffered an allergic reaction which the GP over an app told me to just stop the antibiotics didn't check how severe the reaction was. Ended up back on the labour ward to have the reaction looked at (again so grateful to midwife for that). No health visitor has seen me or baby.

Care and most importantly support is lacking 🙁

Both my DH and adult DS were unable to get even a telephone appointment with the GP. The surgery did not answer the phone to make the appointment.
In the end, my DH stopped at the surgery, where after confirming he had a mask, he was allowed inside to make a telephone appointment, the earliest being 5 days later.
At the time, the surgery was empty (no one in waiting room, and no visible doctors, who presumably are doing these telephone appointments from home?)
There were 6 receptionists there, who were presumably working, but he saw no evidence of them answering the phone, so could not understand why he failed to get an answer after trying for nearly an hour.
In desperation, my DH went to the Hospital Urgent Care the following day.
All NON-Covid related!

@thereisonlyoneofme

I feel massively let down by the NHS. Just come out of hospital after emergency admission. Tried to speak to my GP re new meds aetc. When I finally got through asked for a GP phone call (ovarian canceer terminal) Oh nothing for 2 weeks Im afraid, and surgery is closed at lunchtime today ! 2 out of the 3 Docs are sheilding, though that had ended in this part of the country. Phoned solicitors who are dealing with my end of life affairs plan etc. Solicitior who promised to visit me in Hospice etc no longer works there and they dont offer that service. Im not really in their area ( oh but I was when I was setting up this plan that the practice will be charging me thousands for ) All the safety net I set up for myself, because I have no relatives, has just got massive holes in it. Half of their staff are also shielding ! I have felt at at the summit of a huge volcano of rage today

I am so sorry. You shouldn’t be going through this with no support. Is there no-one you can think of who can help you?

@Oliversmumsarmy

For my family this isn’t about who is in government or how they have operated since lockdown

To us they have always been shit.

It might be a free service but in our experience if you need to save your life then you have to go private.

Dp (grade 4 cancer) has been waiting to see someone since last November.

Twice his appointment had been cancelled.

Then we had lockdown.

Then last month he got an appointment but he first needed to go to for a scan and a blood test.

Had the scan but they have lost his blood test 3 times.
This isn’t about government failures or shortages. This is just the usual apathetic way they treat people.

Lockdown I think has brought to the fore what we as a family have known for years.

Blood tests have been an ongoing saga across DH cancer treatment. He requested full note access from his GP and now takes his tests with him when he has appointments as despite the hospital ordering them they don’t seem able to access the results. NHS IT systems are a shambles. He once had 6 letters for 1 appointment including a cancellation as letter 3 ish but then others with the time after . Turned up to no surgery and other patients waiting-they did find someone to see him but it was a wasted day really. Apparently there had never been a clinic scheduled on that day at that hospital

This is so unfair, I agree OP.

I don't mean this as a 'rub your face in it' kind of comment but more wondering whether it's locational? Because I've had hospital appointments and GP appointments throughout lockdown and they have all been very good and seen me in person.

To be fair the hospital appointments are for pregnancy related things so they are understandably continuing but I know people have had their 16 week appointments cancelled or given over the phone whereas mine wasn't, I still went to the hospital for all of my appointments as normal and my husband was even allowed in my 12 week scan!

The GP appointments were for a reoccurring ear infection and it took me no more than 5 minutes to book a next day appointment to be seen and the waiting room was really quiet.

I don't understand how it can vary so wildly and for such important things like cancer treatment. It's awful.

'more wondering whether it's locational? Because I've had hospital appointments and GP appointments throughout lockdown and they have all been very good and seen me in person.'

Yes it must vary, which of course it shouldn't. Our local private hospital is admitting people from over an hour away for surgery on the NHS to assist with the backlog.

Also, If anyone has a terminal diagnosis I would ask for hospice referral. They provide excellent care which can be as an outpatient as well as inpatient. Imo they are far better at managing symptoms. Macmillan nurses or other specialist nurses should be able to refer rather than trying to get an appointment with a GP.

In addition husband couldn't come to the ECV or the emergency appointment prior to the ECV yes I had to "put my big girl pants on" and make decisions for me and baby alone but as a first time mum it was scary. Waited for C section alone for 5 hours again scared and nervous. But I know it's not the end of the world in the grand scheme of things

Apparently there had never been a clinic scheduled on that day at that hospital

Similar to what happened with my OH's cancer. He got referred to a nearby city (2 hours away) for stem cell transplant. Appt (Wednesday) was supposed to be for the initial consultation with the consultant to explain the procedure etc., followed by a session with the transplant co-ordinator to go through the practicalities, tour of the isolation rooms, sign the paperwork, etc. On the day, there were literally crowds in the waiting room - dozens of people. We all had the same 9.30 appt time (typical NHS). Even though we were one of the first, everyone else was going in first, and the hours started passing. After a couple of hours, went to desk to ask how long only to be told "not long now", another couple of hours passed and the waiting room was empty except for us. We asked again, same response - the receptionist couldn't even be bothered to go and ask (or ring through). Finally hit 2pm and the waiting room started filling again. Went back to desk and insisted she find out what was going on. So she huffed and puffed and shuffled off only to come back saying the consultant had gone for the day (only works mornings) and that the transplant coordinator never works Wednesdays anyway, so she just glibly said that we'd better go home and wait for someone to get back to us. No apologies, nothing. Some NHS staff just don't give a shit about the patients. We'd still be sat there now! And no, there was no follow up appt made, we had to chase and chase and chase to get it re-booked. They're a complete shambles.

I've only had one face to face midwife appointment - after my 12 week scan. My next will be at 28 weeks, though tbf I did also get the 20 week scan. I'm not too fussed about it - at that stage I feel the scan's probably more important. But yes, there's definitely a postcode lottery at work.

Yep. All of my hospital appointments have been over the phone and each time the Dr says "we need to see you in person, we'll get you in asap" now I'm chasing for appointments that haven't been made but can't speak to anyone that can help.

I feel your pain, every person my mother speaks to tells her they can't help then transfer her to someone who can, and of course they can't help either.
I've been waiting two years for a referral to the local autism service. I finally get a letter this week. Great right? Well no, because they're denying they have anything to do with it. Medical records are adamant the request came from them. What the fuck?
Two years ago they "lost my records" so i lost my place on the list. Now I'm at the top of the list but they don't know when they're doing face to face appointments. They suggested a phone appointment - even though they know i can't handle phone calls.
Two years for a bloody letter, at this rate it'll be another two years just to get an appointment. Meanwhile the welsh government is bragging about their wonderful new autism service and all the support it offers. No-one actually knows what it does though. And you only get waffling from ministers and officials.
I know it's not life threatening, like the issues many of you are dealing with. But it's just so frustrating, i haven't recieved one shred of support since being diagnosed - that was eight/nine years ago. You get close to the possibility and find out it's all a mirage. 😡😕

Dd was diagnosed with ASD in November last year after waiting for more than a year for a CAMHS appointment. She was supposed to be having tier 3 treatment for anxiety and sleep problems but we’ve heard nothing from CAMHS about any follow up and she turns 18 in two months so will fall out of the system on her birthday. The only possible option after that to see anyone on the NHS is a national clinic at a trust miles away which currently has a two year waiting list (ds is on it) and it takes more than a year to get a funding decision. She’s not coping with mainstream school and I’m not sure if she’s going to be able to finish her A-levels but apparently she doesn’t matter

@JanMeyer

Yep. All of my hospital appointments have been over the phone and each time the Dr says "we need to see you in person, we'll get you in asap" now I'm chasing for appointments that haven't been made but can't speak to anyone that can help.

I feel your pain, every person my mother speaks to tells her they can't help then transfer her to someone who can, and of course they can't help either.
I've been waiting two years for a referral to the local autism service. I finally get a letter this week. Great right? Well no, because they're denying they have anything to do with it. Medical records are adamant the request came from them. What the fuck?
Two years ago they "lost my records" so i lost my place on the list. Now I'm at the top of the list but they don't know when they're doing face to face appointments. They suggested a phone appointment - even though they know i can't handle phone calls.
Two years for a bloody letter, at this rate it'll be another two years just to get an appointment. Meanwhile the welsh government is bragging about their wonderful new autism service and all the support it offers. No-one actually knows what it does though. And you only get waffling from ministers and officials.
I know it's not life threatening, like the issues many of you are dealing with. But it's just so frustrating, i haven't recieved one shred of support since being diagnosed - that was eight/nine years ago. You get close to the possibility and find out it's all a mirage. 😡😕

It's really terrible. I completely understand why appointments had to be postponed, why they couldn't be face to face, I understand how difficult it's been for the NHS but I cannot understand why proper records aren't being kept for who needs appointments, who has had appointments pines. How many patients are now lost to follow up? I've tried everything to make contact with rheumatology - I've e mailed, I've phoned (just get an answer phone that you can't leave a message on. I'm on medication that requires regular monitoring but I've now got no appointment. Where are all of the clerical staff?

The solution to catching up on cancer patients being treated and other critical patients (ie those whose conditions will deteriorate substantially quite quickly and those in severe pain) should be for the government to provide funding to outsource to private hospitals as much as possible. I thought that was meant to be happening already in many areas? Most of the Nhs consultants I know also work privately.

It's definitely postcode lottery. I work as a HCA in a gp practice and the only things that stopped were spirometey tests and ear syringing. We also stopped loaning out BP machines.
We had 2 quiet weeks in March where noone wanted to come in but back to normal for months now.
The doors arent locked and never have been, you can see A GP or ANP for f2f appts after telephone triage which has cut the amount of dna's down.
Although I had 3 DNA blood appts this morning.
We literally codnt qork any harder, I start at 8am until 2 with no breaks, hot sweaty ppe, and 7 minutes to do call a pt, print a form after searching through the notes, do bloods and bp, pulse etc and clean down after each patient.
After a really nasty verbally aggressive patient last week who scared the crap out of me, its time to change my job.
love what I do and the majority of my patients but have had enough of the general pu lic assus.k g we all do nothing
I am.not excusing the quite obvious failures on here but we aren't all like that, some of us have worked non stop, seeing 30-40 patients per day, for bloody £9:45 per hour!
I am very sorry for Op and others who have lost loved ones.

@Nothingoriginalhere - thank you for your hard work. My GP practice (Outer London) has been just like yours. I have plenty of friends who are GPs and they all work very hard. In fact, most doctors and nurses do and others in the healthcare sector. Smart talented people who could be earning a lot more in other fields and for that, people should be grateful and I think most are. But there are some communications failings within the NHS from a patient’s perspective. Sometimes it feels like a black hole. In most other countries you have a contact person ie your doctor’s secretary who can answer, speak to your doctor and knows what is going on in your care and can get back to you quickly. We really need that here too.