To be utterly tired of having to deal with the NHS in ‘combat mode’?

[ChequerToRed]

Some background- Unfortunately my adult life has been plagued by serious health issues, and I’ve been failed time and time again. To begin with it was a major eye condition and I got swept up in the Bristol Eye Hospital appointments scandal, which was so bad it made mainstream headline news at the time as some people went blind as a result. Next up I was diagnosed with cancer just over six years ago, not long after my diagnosis one of the oncology team was so rude and dismissive I had to make a formal complaint and didn’t see them again during my treatment, treatment that was nearly screwed up by them forgetting to send my sample to genetics, the results of which made a difference to the second half of my chemo regimen. If it hadn’t been for my DH stepping in (he actually had to take time out of work to collect and transport the sample to genetics himself when we found out what had happened) I wouldn’t have received the correct chemo type for three rounds. I was put into medical menopause, and only after complaining about the side effects of this was I referred to the menopause clinic, who turned out to be as useful as a hole in the head.
Now I’ve been referred to gynaecology, I thought for just an ultrasound but the cheery woman booking the appointment said I ‘should bring a couple of paracetamol in case you need a hysteroscopy’.
No.
Bad news for them is that I’m already quite well informed about the long and ongoing controversy over the glib and dismissive way clinics deal with pain management around this procedure, and that one third of women find it extremely painful and even traumatising. Because of this, if they say they require one that day I will be refusing and insist they book me in to do it under sedation ( I have a tilted uterus, I found childbirth so horrendous I only did it once, and I’ve been in surgical menopause since the cancer treatment). I haven’t even been to the appointment yet and I’m already having the added stress of being in potential combat mode.
I’m so, so tired of having to approach my every interaction with the NHS in a wary and defensive position, to be constantly having to brace myself, in already stressful situations, for the endless need to adequately advocate for myself, to have to inform myself well over and above the information I receive. Every Single Time.
AIBU to think that I shouldn’t have to feel this extra layer of stress and fear over and above the medical issue I’m seeking treatment for? How do those who are less resilient, who don’t have a supportive partner for backup, who don’t have the same communication skills, the same ability to approach in a truly informed way, supposed to deal with this?
😩

Our NHS is broken.
We need people to start recognising this, because successive governments are refusing to deal with the problems whilst they believe the British public (their voters) adore and worship it and would fight any sensible reforms.

Well if you're like me and after years and years of this you start questioning everything a dr says or does which hurts the drs ego you then get it written in your notes how difficult you are then they get even more horrible and defensive to you so you can't manage an appointment without crying then you get diagnosed with eupd then they gas light you even more.

I've been on an antenatal ward for 10 days. It's there third time telling me I am having a baby today. A very premature baby. They've actually got me on nil by mouth this time. I am now waiting, starving for the consultant to tell them I am not. There is another helpful doctor that tells me I might get to go home today ever time I see them.

People who aren't resilient and don't advocate for them selves are likely the ones that make it in to the news.

Without an advocating family - Dad would have died much sooner and had even worse treatment - and at times it was pretty bad.

If you do complain as I did in last pg which was upheld- Dsis did in first and when she tried to as DN treatment was two years of waste becasue someone didn't check an x-ray - they make it very hard and if they can punish you with poorer treatment and notes in you medical files - whcih then make it harder going foward.

I think people avoid and avoid till pain or fear drives them to seek treatment then you hope like hell you in a good area for that illness and often seek information and support from illness groups which worrying are often mor euptodat then the professionals.

It's so many systems that are set up poorly cobbled together or just not working correctly and it's pure luck what you encounter.

I'm always fascinated that the notes on the file are a one way street. Surely it would be more helpful and transparent if formal patient complaints were also included?

@ChequerToRed - so sorry you are dealing with all this pain and stress.

I'm so sorry OP.

I empathise and understand.

Doctors never listened to me when i told them that the drugs they gave me off label had harmed me permanently. I was gaslighted by my GP and four different neurologists.

I had a head injury and post concussion syndrome a decade ago before being injured permanently by an off label antipsychotic that gave me a neurological involuntary movement disorder called tardive dyskinesia. This is is a bit like Tourette's and Parkinson's disease combined. It's totally ruined my life, physically and mentally in many ways. Others will say I look ok as my involuntary movements are mild, but it's not just that. It's the mental anguish caused by being gaslighted, the doctors never acknowledge properly that these things cause permanent harm.

Every part of me is in panic mode when I take a medication in case it exacerbates my symptoms. I'm now sensitive to medication side effects and other seemingly innocuous substances like antifungal creams, artificial sweeteners, and even paracetamol with aspartame in it - all of the things that I didn't hsve reactions to ever before.

It becomes so wearing after a decade of this shit. I'm tired of my body and life at times, and dread menopause and HRT as I have no idea how it will affect me. Perimenopause has been awful for 6 years already without HRT.

Sending hugs and solidarity. I understand ❤️😢

now been told there is no plan for a c section today. Still on nil by mouth. Had to send lunch away. Baby monitoring now overdue by 1/2 hour.

So sorry you are struggling, it must be so frustrating. I hope you can eat soon and more importantly, meet your baby soon safely. Is it your first?

I'm so sorry. That sounds awful. I have tried to look up the Bristol eye hospital appointment scandal without much luck.

I did used to know someone who worked there about 12 years ago. I doubt they were very competent but I can't say for sure as only knew them in a non professional capacity.

Would you or anyone be so kind as to link to the stories about it?

Yes.
This “It's the mental anguish caused by being gaslighted, the doctors never acknowledge properly that these things cause permanent harm.”

The way I have been treated is beyond disgusting - I was denied access to secondary mental heath care as - they told me it didn’t exist as “this is the NHS” which caused me real harm as I was already suicidal.

The doctor who ignored my concerns for a physical condition and shouted at me in A and E. I had to go to another hospital where I was given immediate treatment.

The doctor who implied I had an eating disorder when it was actually traction to medication caused by what I now know is FND.

The harm caused by these bastards has made my condition worse - the utterly disgusting way I was treated pre diagnosis has made me fear for my life if I ever need treatment for anything at all with this diagnosis on file.

I've previously been told that I have "insufficient quality of life to be worth treating", so no you're not at all unreasonable to be tired of it. I am too

Oh I'm so sorry. Your post resonates so much with me. I've had very similar issues and feel like it's been a never ending saga of asking for help, getting something to help, but it causes more hsrm on top.

Funnily enough, I was misdiagnosed with FND by the first neurologist, and even asked if I'd had too much trauma by another!😫😳 They all look good on paper, but in person, they just say condescending things and decide you are an anxious person who's a pain to treat.

I truly hope you get better care in future. It’s a travesty they have done this to us.

My 2nd and last. I just can't get past the feeling some of these people like delivering very premature babies!

I hear you; I fully believe unless you have someone who can vocally advocate for you or you can do advocate for yourself, its shit

Re your gynae apt, it's infuriating. Last year I was seeing a private gynae and ended up with a coil (amongst other things) she said she never does them without local anaesthesia, unless someone says otherwise as it can be painful / traumatic (I also have a retroverted uterus) My NHS GP who were pushing me for over a year to get a coil wont give you anything and tell you to take a paracetamol

Weirdly, I’m having trouble finding much considering it was a pretty big deal at the time, but I did find this-
Bristol Eye Hospital
It was actually a far more widespread issue than is in this article, at the time they failed to send me an outpatient appointment for over a year as well (I was supposed to be seen every 3 months), and I wasn’t a glaucoma patient.

Hey. There’s been a lot of hiding of this by using specific trust names instead of hospitals so you can find more information using “University Hospitals Bristol NHS Foundation Trust” as that’s who controls Bristol Eye Hospital. Here’s an article about them being one of 11 trusts where people lost their sight (the link is an archive.ph because the original is behind a paywall).
https://archive.ph/k6LOj

This article discusses a 16 year old whose delayed treatment caused blindness and her lawsuit - it doesn’t mention Bristol Eye Hospital directly but it does mention one of the groups she’s suing is University Hospitals Bristol NHS Foundation Trust.
https://www.fieldfisher.com/en/injury-claims/case-studies/settlement-for-young-woman-left-blind-following-de

It’s just a tiny view of what’s happening on the NHS. If anything ANYTHING you expect is ever delayed, or they told you “if you don’t hear anything, assume it’s fine” - please chase it and double-check your results yourself. Unfortunately, it can be a matter of life and death, as it was for OP, or just serious disability, as it was for these people.

As to the question of what happens when sick people have no one to advocate… they sometimes get incorrect treatment that could have been caught by an advocate, and sometimes they suffer for that, to varying degrees.

EDIT: Crossposted with you @ChequerToRed . They “hid” it under the trust name.

My family by profession and politics have been involved in the NHS for generations. Putting aside the financials, what strikes me hard is the quality of the human in the job. No compassion and totally disorganised.

Agreed. Im sick of having to do the work, it’s like l have 2 jobs: my real job l actually get paid for and managing my health stuff. No one can talk to each other, appointments are constantly cancelled and my GP’s don’t seem to be able to do referrals. Referrals are submitted 25% or 50% done, they get declined (shocker!), no one tells me and then when l chase it up my GP’s get hostile and irritable

Hard no about the paracetamol, l would be stating its heavy sedation or GA

Its always been like that. I've had to interact with various parts of the NHS over the past 5 decades enough to realise that if you don't have a voice, can't articulate your needs physically let alone verbally you're absolutely stuffed.

It's absolutely appalling but it's individuals not just the culture that has the NHS where it is in this regard.

Sorry OP - you are correct, dealing with the NHS is awful in any capacity. My DM has terminal cancer and was left in a literal storage cupboard for 19 hours after I complained about infection control. (The waiting room was so full, the only seat was next to a lady with a severe respiratory infection, coughing everywhere, whose GP refused to see her). DM's chemo had battered her immune system so she was sent to A&E. The sister I complained to actually said - without any apparent irony - "I wish the helpline wouldn't send emergency cancer cases to A&E". Now DM refuses to set foot in hospital and intends to die at home without pain relief. We might as well live in some dirt poor backwater with no healthcare for all the actual bloody use the NHS is.

On the hysteroscopy front, I was one of the unlucky 1 in 3 and I would urge you to insist on GA. Better to have it and not need it than the other way around. I was forced to go private while waiting for the NHS to agree that I could have it under GA. The female consultant I saw privately visibly shuddered at the idea of having it without GA and said that she absolutely would not consider it. (I have since been told that no GA is exactly what her NHS patients are offered!) It's cheap, that's all. And it's not good enough.

Wishing you all the best with these investigations.

I am often surprised at how complaining about the NHS is considered, basically, blasphemy in the UK. Firstly, for most people it is NOT a free service. We all pay for it through our tax and NI. Many pay much more than they will ever use. We deserve, as a country, to see a decent provision of service in return.

And even if it was actually free, people should still be entitled to a decent level of care - to be treated well, by competent people, and with respect and dignity.

@adlitem - amen to that!

I completely understand. Xxx

Thank you very much. I'll take a look. And yeah I can see that's just the tip of the iceberg.

Apparently they forgot to tell me my body is giving up and now I am having a c section today! On the plus side they've agreed to my tubal ligation to be done at the same time. Advocacy in action.