Is anyone else just utterly deflated with the NHS?

[SpicyWater]

Please can someone tell me what I can do to try and fix the broken system and get the help that I need/want.

I have a chronic health condition and I find myself utterly exhausted and upset every time I try and seek help. Why do people need to jump through so many hoops and climb so many hurdles just to bloody speak with someone?

And even then, it's your luck of the draw if the hcp you speak with still cares enough to listen and take you seriously. Or if they decide you are another pain in the arse woman that's a 'burden' with our exaggerated ailments, you are kicked to the kerb and left to suffer.

I don't ask for much, I don't complain as I know how hard it is for the staff trying to navigate things on their side but I just don't think I can take much more of this 'treatment'.

What, if anything can I do to get the care that I need and deserve?

I purposely let myself suffer and let things linger much longer than they should as I just can't face the fight of trying to contact anyone or seek help. When I do seek help, I am often gaslight and treated like an idiot, because there's just so much deeply embedded misogyny in our HC system, that you have to reach critical levels before anyone will take you seriously.

It's just so bloody upsetting and I feel utterly powerless and unsupported from the people that are paid to help.

Anyway, I'd best get some rest after another long day of being failed by those that are supposed to help. Maybe my luckily finger will be the one that's selected on the chaotic hunger games GP call queue in the morning. sighs*

@MyOtherCarIsAPorsche I am so sorry to hear what your family have been through. I just wish there was something we could do to get the treatment we all deserve.

I too was treated poorly, like your daughter, for many years. The gaslighting really does make you question your own sanity at times. I am also noticing similar treatment with my own children and trying to muster up the energy to fight for them too is absolutely unbearable at times.

I hope all goes well for you from now on and your family get the care that they need and deserve. 💐

That's not true. I have phoned NHS Direct and they have arranged a call from my surgery. Try them again.

On nextdoor forum, someone was asking about nhs waiting lists as his mother had moved to the uk for cancer treatment. Now I think the mother will be charged for the treatment as she does not qualify for it free on the nhs.

However that is still one place in the queue taken by someone who hasn’t lived in the uk and plans to return home after treatment.
Surely this should not happen?

I've been sent on the same loop before so it is true.

111 will tell you they've sent a request for an appointment to the surgery. The surgery will then insist to you that they won't give you an appointment and to ring 111 again.

You can ring 111 again, but some of the services they refer to are strictly OOH.

Have you tried using an online GP service? our practice uses one and if he/she cannot help, they book the GP F2F appointment for you.

I ve used it many times and it works really well.

Absolutely no relevance to getting a GP appointment but hey let's shoehorn in anti-immigration rhetoric everywhere we can.

I wasn't talking about making an appointment. NHS Direct will contact your surgery and a GP will contact you to assess you. You can discuss your illness and the GP can take next steps.

I could (and have) said the same thing. My OH has had cancer for 7/8 years and it's been an absolute nightmare to get treatments, consultations, drugs, etc. Every single sodding month, there's a cock up. He's on a simple monthly treatment regime, should be simple "copy and paste" every four weeks re blood test appointments x days before, booking in for 2 days of infusions, picking up chemotherapy drugs, phone consultation with haematologist. Not rocket science, but they screw it up every single month. Add in GP consultations for different drugs, such as for blood pressure, vitamins/supplements, etc. Then infrequent X-rays, MRI scans, CT scans, ultrasound scans thrown into the mix, some ordered by the GP, some ordered by the Haematologist. It's a nightmare and sometimes takes OH a full day or two ringing around between departments to sort out their cock ups. The GP surgery won't communicate with Oncolofy dept - the individual hospital departments are incapable of liaising with eachother. It's all left to OH to chase them and change appointments to actually fit between different departments! There hasn't been a single month in 7/8 years where it's gone right. It really shouldn't be like that, especially for serious/chronic/life limiting conditions.

During Covid my OH's chemotherapy infusions were cancelled and they told him they'd contact him to re-arrange. They never did. He waited a few weeks, radio silence, so he phoned the oncology dept reception - straight to answerphone so he left a message. No ring back. He range again a few days later. No ring back. We went to the department in person but it was shuttered closed (separate annex to main hospital), so we assumed it was still closed due to covid. Kept ringing every week, always answerphone, no ring back.

After a couple of months of it, bearing in mind, this is life saving cancer treatment, he started panicking, and next time we went to the hospital to see it still shuttered close, we went to general reception desk (staffed by volunteers) who didn't know what was going on, and pointed us towards the general office. We went, and of course, due to covid and lockdowns, it was closed - no signs on door with alternative phone numbers, etc.

Cut a very long story short, after about 3 months of phoning and getting no response, he phoned the oncology department in a different hospital across the county border, but same hospital Trust. Only to be told his local hospital dept had closed down and they'd all relocated to this other hospital 45 minutes away. Couldn't explain why they'd not told him, couldn't explain why the answerphone was never responded to, couldn't explain why no signs on the original hospital shuttered doors, etc. It tool another couple of months to get the treatment started, after more x-rays, scans etc., because the original ones were out of date! Ended up finally re-starting the treatment six months later.

Communication is incredibly poor, whether between departments/hospitals, or between the patient and the hospital. They just don't seem to care.

I feel exactly the same way OP. Just utterly exhausted by it all. I’ve been waiting for 2 months for a response from hospital about a referral my doctor put in for me (after begging and jumping through hoops). The deadline for them to respond to me passed, so I phoned them. After back and forth between the hospital, the referral admins at the gp, complete lack of communication from both of them to each other and me - my referral has been pushed back by another 2 months. In the meantime, my symptoms are becoming physically and mentally more difficult to manage. I’m in pain all the time. Since nobody seems to have heard of the condition my doctor wants me tested for, nobody understands or cares. I feel totally defeated.

I think it must vary a lot - I also have an auto immune condition and the NHS treatment I’ve received has been good. I nearly always get an appointment within a week if I call the rheumatology department. I do find that I have to be proactive sometimes but generally no complaints at all.

They can't magic up time for a GP to call when the GP is already fully booked and then some.

Like a pp said. They have told me to contact the GP as they are responsible for my care during opening hours. The GP will tell me to contact 111 or call back the following day at 8am.

I just don't have the energy or strength to call around in endless loops without anyone taking responsibility for my care. I've tried that twice this week and I've gotten nowhere.

They can arrange for a Dr to call you back. They don't make appointments with your Dr.

I thought they were all supposed to have e-consult by now? I like ours, they usually ring you back the same day.

Well it is to do with getting a gp appointment because the son who posted stated that’s where they would get the referral from. Sorry I didn’t point out that it’s more than one appointment place taken in the queue.

I’m fed up too.

I was told to request my repeat prescription via the NHS App. Presumably this cuts out the need for GP Surgeries to actually deal with punters face to face.

I did this ten days ago. At my dispensing pharmacy, (not easy to get to when working in a different town) they still haven’t had the prescription.

i logged on again, to request the repeat ‘script again, but it was not showing or available to request - presumably because I’ve already requested it.

in despair, I arranged to leave work early to call in at my GP surgery, to request it in person, but the whole place was locked up for “staff training”.

in despair, I have tried to buy the prescription from an online pharmacy for £38, which as a taxpayer I resent. But the online pharmacy offers 48 hour delivery. This will evidently be quicker than trying to get it from the GP practice.

i haven’t the time or energy to go devote to doing this, every 56 days (which is how much medication they issue at once). It’s always the same story. Request the prescription by the app, which I do, and then Nothing Ever Happens Afterwards. I might as well set light to a piece of paper and send it up a chimney.

Who has time for this?

I havent bothered booking a smear because of the difficulty in getting an appointment and today I got a letter asking me to call them about not booking in. No. I can't as don't have time in working day to sit on the line for a hour.

Does your condition have a charity organisation? can they advocate for you in contacting your GP?

Sounds familiar. It is such a struggle to access any kind of service.

I think it totally depends on what's wrong with you. I have a long term chronic illness and have found getting the right help and support on the NHS very difficult.

Our GP surgery is actually very good and since they introduced a new online booking system getting appointments is much easier.

However I cannot fault the care my uncle received a few weeks ago for a stroke. He was take to hospital quickly, then blue lighted to a specialist hospital for treatment. All really quickly. He's suffered very few aftereffects as a result.

I also needed to go to A&E last week and even though they where busy, they did a good job of treating me.

So some things are good and something really need more funding and support.

I live in Denmark - that's not true. It's the tax ceiling, so the very richest person will pay max 48% of their income. I pay about a third of my salary, but most of that is to the local council.

That must be miserable OP.

We are very lucky because on the very few occasions I or ds have needed an appointment, we have had no issues.

A few years ago, I found a lump underneath my bra strap and was seen by my GP within 3 hours. My cancer treatment via the local hospital has been fast, supportive, effective and even covid wasn't allowed to get in the way. Surgery was within 20 days, and even now four years later, appointments are unprompted and on schedule.

For me, the NHS is brilliant and reliable, so for the NHS employees on here, my grateful thanks. You are truly appreciated.

If you ha e a regular repeat prescription you can often get your pharmacy to request them for you. This is what I do with mine, then I just go to the pharmacy to pick it up. Its way easier then.me have to request it every time.

The people who answer the phones are only pennies above NMW and so recruitment and retention are screeching nightmares

They are the Admin 'glue' that answer calls, help on Reception, process paperwork, download results and clinic letters, marking them for the attention of the appropriate people, sort prescription requests and so forth

There are so few, that many of these call handling jobs are centralised, meaning patients call their GPs and end up getting through to these call centres instead of the GP receptionists

This was meant to 'free up' the staff at the surgeries, but they are overwhelmed with an avalanche of tasks

It's the lack of an interface between the rest of the world and the GP Surgeries that they fulfill and we are so sorely lacking in staff that it's impacting patient safety

Everyone pleased about the loss of the 'useless' admin are mistaken

Many of the managers on high wages will be retained and it's the little people who hold it all together, who will not be replaced when they retire or leave for better prospects

My problems are insignificant compared to some of yours but so very frustrating too. I somehow injured my knee in March, after a week or so it hurt so much I went to the minor injuries unit. They diagnosed torn ligament and said it would get better. I saw private phisio as NHS wait was supposedly 11weeks. Got offered NHS phisio 2 days later. Both phisio say torn meniscus and to see GP for advice. I made myself very unpopular with GP practice and demanded face to face GP appointment as needed knee examining GP did very little and said probably arthritis (phisio had said not arthritis) 2 week wait for ex Ray then 2 weeks more to talk to GP on phone. I have no firm diagnosis and am in constant pain, can hardly walk. I could greet private MRI scan and radiographer’s interpretation for £345 but NHS just wants to shunt you around the system and do nothing. The surgery are also rubbish at responding to repeat prescription requests so I have to keep buying blood pressure meds privately to ensure I don’t run out. It is just so inefficient and uncaring.
I could add numerous little stories about the kindnesses shown by good GPs to my family years ago. Once I arrived at the surgery to make an appointment for my son and got there too late, GP just getting in his car to go home but he went back, opened up and saw my son then and there. I can’t see that sort of thing happening again.