Grumpy with cardiology 🫀😡

[Pigleywigley]

Just a bit of a rant about NHS & I feel I can having worked for NHS for 30 years!

Cardio consultation a couple of weeks ago. I had to tell him that the EP had written to my GP that I couldn’t have an ablation. Recommending Dronederone- he knew nothing about it 😡 couldn’t even see it in my record. I read him the letter 🤷🏼‍♀️

He also told me I didn’t need magnesium - I said well I’m taking it I feel better.

I said I didn’t want to decide about dronederone yet until I knew all options eg low dose flec instead of as a PIP (as AF every 2 weeks now).

He said they will have MDT & write to me.

Today I get a call from pharmacy to ‘collect my drugs from hospital pharmacy’. No letter, no explanation, no call!

So emailed cardio secretaries saying I won’t be collecting any drugs until I know my plan & what they are! . Flurry of calls this afternoon & now a letter which I insisted was emailed to me.

Potential for ‘surgical ablation in future & flec for now. Having a specialist MDT to discuss. So at least that’s progress.

But honestly. I know the system, I know what should be happening. I am well informed but god forbid those poor people who don’t 😢 rubbish.

[CDreamer]

Feel your frustration! I have heard the word irretrievably broken as a description for NHS so many times this last week - from staff. I do think communication is their worst failing!

[Desanthony in reply to CDreamer]

Communication always has been difficult I am afraid and this situation has made things worse. Thankfully if I am very ill I have my wife with me who can tell them everything. I also have copies of most of the reports, test results and xrays and scans. I went through treatment for Prostate Cancer about 6 months before being diagnosed with AF and because there was no cardiologist in our local hospital was put on Apixaban and told as soon as there was a cardiologist I would see him. At that time I didn't know there was a brilliant cardio team at a hospital about 50 miles away within the same NHS Trust. So went to see a private cardio. He asked for the GP to send him history before my appointment - usually you can get a private appointment within a week but I have noticed Cardios and EPs have about a month waiting list even for private consultations here. Great Cardiologist and I gave him the history having collected it from my GP surgery on the way. Luckily I had read it whilst in the waiting room and it didn't mention my prostate cancer at all! Why on earth had that not got onto my records? It was signed by the GP who had prescribed me my Hormone tablets and injections - oh and she did that incorrectly as well so maybe I should have guessed things may not go correctly. Now I also carry a history written by myself and typed up by my wife. As you say when you are well and have your wits about you or someone with you you can manage but in other circumstances it scares me. My wife had some very scary moments when caring for her Aunt who may have had to lose a leg had it not been for my wife going to one of hernurses appointment and pointing out that the problem with her Aunts leg was getting worse as it was "spreading out" to the edge of the dressing every time the dressing was changed and the dressing got larger so maybe it was an allergy to the dressing. - It was dressings were changed and everything cleared up. My sister had lots of operations on her bowel years ago and found she was allergic to some part of a particular dressing so she told them at the next op and a note was made and she was given a bracelet with that on and lo and behold she woke up with that dressing on.

Sorry about long post but it seems to be something that hasn't been addressed for a while and Covid can only make things harder. Obviously a lot of medical professionals are methodical, meticulous and do things correctly and do notice these things but it only takes one person to not read something to not file it correctly or file a letter before actioning what is said in a consultants letter and so on.

[Hidden in reply to Desanthony]

Keeping your own history on file is an excellent suggestion. Thank you. As a Word document, it could be expanded over time, sent to the GP and made available by email ahead of an OP visit.

A chronological medical history, a family history of illness and a list of regular medication are all useful information and can be presented in a much more user friendly way than NHS digitalising of records currently provides.

The management/audit requirement for the primary focus being on digital record keeping may have the potential to improve organisational and financial efficiency, but it often appears to have been at the cost of good patient care.

[Pigleywigley in reply to Hidden]

Bill the IT structures of the NHS are shameful & I started in nhs 30 years ago & the digitisation of records & systems between hospital, GP & different cities is shameful.

[Pigleywigley in reply to Desanthony]

I too have started collecting everything hence I knew what EP had said about ablation!

[Pigleywigley in reply to CDreamer]

I know CD! Was so frustrated & upset yesterday. I know the NHS have done us proud this last year & I feel truly honoured to be part of it....BUT being a patient & being on the ‘other side’ boy!

[Peacockmumma in reply to Pigleywigley]

There doesn’t seem to be anything ‘joined up’.. I’ve had an X-ray then a ct for a lung issue..no one seemed to know who instructed the ct scan…think X-ray did…being sent to respiratory clinic…dr doesn’t know why as ct is clear and normal. Can’t cancel it as needs to come from gp altho gp told me to phone hospital. Mad…and also cakking myself waiting for ct results..no one phoned me,,,found all the results on the nhs app!

Currently waiting 20 weeks for 7 day heart holter so I can be referred back into cardiology for a bout of AFIB episodes. Went to dr end of Nov..still waiting…going away in 2 weeks. For 10 weeks..so they can stick their holter elsewhere! Last time I had the 7 day thing I got it thru in 2 weeks and that was during covid! So why so long now…?

[Frodo]

Personally I always try to be understanding about the unbelievable pressures NHS staff must be facing, but when it means you or a relative are getting the wrong or no treatment that becomes much harder to deal with - when it can result in disablement or be life-threatening.

It's also difficult and time consuming to try and research and manage and follow up your health issues, when you actually have a health condition that may be causing you impairment, and when you should be able to trust that the professionals and their support staff are able and willing to do their jobs properly. Thank goodness we now have the internet with all the information that's now available to us, and support groups and forums like this.

The cost of private care is generally astronomic and beyond the reach of most. I had a (cheap, quick) ultrasound scan requested by two NHS consultants from different disciplines yet the hospital department refused to allow it. But I could have paid over £200 to have it privately at the same hospital.

[EngMac in reply to Frodo]

My sister -in- law, who is a trained nurse in Canada and the UK, and lives in France, gets every medical report and is expected to keep her own Health records. This is the French way apparently. In Canada, where I live we get nothing and to get a record is a “shit” show. When I was first diagnosed with AF and had a thorough going over, my file was lost and so I guess no complete record on me. Pretty much been a “shit” show since. I don’t think one can only rely on others. Credible information on health can be found. Everyone should do at least some research, if time permits beforehand, before taking the advice of a health care worker. AF is not usually a get diagnosed today, die tomorrow affliction; so there is time. Don’t expect a warm and fuzzy response when you ask credible questions. If you get one, consider yourself fortunate.

[Auriculaire in reply to EngMac]

Yes this is a left over I suspect from the days where you could go and see any number of doctors ( GP and consultants) and the Secu would reimburse you. Shortly after we moved here 20 years ago the system was changed so you had to have a named GP and to see a specialist you had to have a letter from the GP for the first consultation. But it is a good system. For instance if I wished to change cardiologists or go to a different radiology clinic for my mammograms then I have all my reports and x rays and can take them along. You also see the same person for consultations. After my hysterectomy in England I never saw my surgeon apart from 2 min after the op when she said all had gone well. My post op consultation y weeks later was with a doctor who I had never seen before. Here you see your surgeon - who seems to be interested in the outcome of his work!

[Peacockmumma in reply to Auriculaire]

I agree..we live in France half the year and have witnessed a friend who had a prompt and excellent health care experience and yes she had to hold all her own records. She had an X-ray and sat and waited for the results…I mean…imagine that here in the Uk. Why they take so long I have no idea as they are on the nhs app the next day generally just that no one calls you anymore with results!

My daughter had open surgery for huge ovarian cyst.. no follow up..no advice..I think every woman knows to rest up for 6-12 weeks but I mean..no post op care..no appts to check..dreadful. It’s not as bad if you have someone around you but dam scary if not

[belindalore]

Yes I get same subpar care here in the USA. Not everything here is as wonderful with our healthcare system as some want to believe. It's a very unfair system for many people here. Drs want the easy way. Pills and procedures. Sad. And sad for patients.Take care.

[Pigleywigley in reply to belindalore]

Rubbish isn’t it Belinda. It truly is a lottery playing with your heslth 🥲

[belindalore in reply to Pigleywigley]

Yes. And we shouldn't have to play with our health like a lottery. Someday those Drs will have to pay for doing harm. The Hippocratic oath apparently means nothing anymore. Take care and be safe.

[momist]

Ohh, yessss. With you all the way.

As in all things, I suppose it depends on who you get. Some people are just good at doing things, while others are good at getting qualified to do things, without the necessary world view to be good at it.

[Padayn01]

Good for you I would go for the abalation if it’s offered to you what you think?

[Pigleywigley in reply to Padayn01]

Scared about surgical procedure as clearly much more invasive. Think the letter states that will be considered dependent on meds toleration. I can’t bear thought of vile drugs all my life at 47, well for as long as I can tolerate them 😢