Unhelpful doctors

[dcbinky2019]

Since I have been on this forum I have noticed how common it is that people are unhappy with their doctors care. I think it is disgraceful that cardiiologists are not giving enough explanation and follow up care . Are the BHF able to escalate this issue to the GMC?

[chubby2x22]

I'm lying here heart thumping, feeling lousy., I wish somebody somewhere would sort out cardiology appts. I would love one. Jane

[Rose54 in reply to chubby2x22]

Waiting 1 year for emergency appointment for Cardiologist in my area .

Hope you get one soon

[tunybgur]

My personal experience : Blue light arrival at hospital, cannot fault the care I personally received, stent fitted 4 hours after heart attack started, brilliant!

Chronic heart problems: Could be much better. I went into permanent AFIB shortly after HA, but it was 6 months before I had Cardioversion which only worked for a few months before AFIB returned.

Eventually due to my own persistance I was tried on various drugs, one of which has controlled it for the last few years.

It is well accepted that AFIB begets AFIB, the longer it goes untreated, structural changes happen in the heart and it becomes permanent and intractable, but this doesn't seem to be reflected in the urgency of the treatment process.

AFIB doesn't kill you but robs you of energy and shortens your life expectancy. My quality of life is vastly diminished when I'm in AFIB.

The point is, the system seems inflexible, you have to jump through certain hoops before progressing to some form of treatment, unfortunately these hoops can be several months apart during which time your condition deteriorates and becomes more acute. I sometimes wonder whether the system is designed to either wait for the condition to resolve itself or the patient dies of old age, especially if you are already elderly.

[dickielex]

There is a real risk of generalising from a handful of bad experiences. Having had a CABG 20 years ago and a SCA six years ago, I have spent a good deal of time with cardiologists, cardiac nurses, physios, paramedics and the rest of those people who have saved my life and kept me alive. Almost without exception I have found them to be professional, caring and helpful. What does need resolving in the NHS is the relationship between GPs and consultants, a relationship which isn't always clear to patients. How many of us ask for copies of consultants' letters to our GPs (we have right to see this) and then make appointments to discuss them with the GP? How many of us take the burning questions that worry us to meetings with consultants? How many of us take notes at those consultations so there is no confusion? While bad practice happens of course, I do think that we tend to be passive rather than pro-active, questioning and involved in the multi-agency treatments we get.

[dcbinky2019 in reply to dickielex]

Hi, Good points. But some patients are too ill or not educated enough to become part of the clinical team!

[dickielex in reply to dcbinky2019]

I re-read my post and don't see any suggestion that patients who "are too ill or not educated enough " should become "part of the clinical team". Clinicians are, on an everyday basis, challenged by how to involve such patients- and children of course- in possible therapies and procedures. Sometimes they will fail but their training now emphasises communication and good communication is not "one side fits all" but rather takes account of a patient's ability to understand what is or isn't the matter with them- and what is needed to make them better. We all sign consent forms and surely it is good practise to ensure that consent is the result of informed reflection.

.

[dcbinky2019 in reply to dickielex]

I think there are areas where good practice is standard. And sadly others the opposite. The GP is a lifeline for the patient. The patient dependant on the GP to order appropriate investigations, treatment and referral. Sadly this is not always done and the patient suffers unessecarily and their condition deteriorates. The patient does not always know what to request from their doctor.

Waiting times for cardiology referral are too long. Patients do die as a consequence.

[Bagrat]

Sadly this is often a case of "shoot the messenger" . Gone are the days when each hospital had a management committee which included doctors with clout.

The creaking NHS remains 5 star in emergencies but unfortunately budgets are not sufficient to respond proactively elsewhere.

Everyone seems to be driven by targets.

One advance is that you can usually search on line and discover local waiting times.

The most discontent usually occurs when expectations are unreal. " I will refer you urgently" does not for most patients give a picture of a 12 week wait for cardiology consult.

Yes there is a lot of discontent on forums but a large number come here because they are needing more help so the picture is skewed.

[dcbinky2019 in reply to Bagrat]

Patients wait so long to be seen and when they are seen they deserve good advice and instruction. If this was done they might not need the forum.

[Bagrat in reply to dcbinky2019]

I think you are right but still feel most doctors are doing their very best under huge external pressures. People on this and other forums are often the ones who have had issues. Thousands, maybe more are content at best or unaware of options at worst

[MRSLADP]

I am very lucky to live in a part of the country where I can honestly say that I can't fault my care. I can also honestly say that I advocate for myself. I used to feel bad about being a pita, but today I am 12 weeks post op after only 2 weeks wait (and that was because I needed to sort out a dental issue) and couldn't be happier. No, I did not go private.

[Driver11]

Hi I think there is a disconnect between GPs and hospitals in general. 2 yrs ago my wife broke her wrist in US but when we came home our GP could not send us to hospital we had to go to A&E. I had cardiac arrest last year and my treatment at Harefield was out of this world, everyone inc follow care has been fantastic

When compared to other world services our NHS is pretty good and we should be proud

[Hidden]

I think GP’s are really struggling with the demand of their services and worst of all the 10 minute appointment is just ridiculous. Like Milkfairy said, it’s like speed dating. Maybe the way forward is similar to the NHS business model of super hospitals, concentrating resources. It seems to happening already with GP’s merging practices. However, neither of these measures address how unfunded and understaffed cardiology services seem to be these days.

[Qualipop in reply to Hidden]

I saw my GP last week but had to make another appointment for tomorrow because he didn't have time to discuss everything

[Qualipop]

That's exactly what I have just written to our Trust about. After HA and stents I have never seen a cardiologist at all. Blue light, stuck on corridor alone for 5 hours behind locked doors even unable to get to a loo or call for help> When night shift changed , finally able to grab a passing nurse to get trolley pushed outside toilet. Another hour's wait before finally getting blood test and admitted 2 hours later. Once admitted treatment was wonderful but only saw cardiologist for 2 minutes before stenting and then I was heavily sedated. plumbing unblocked and chucked out. Then refused rehab as I'm disabled.

[Gladwyn in reply to Qualipop]

OMG ! How on earth could that happen or have I misunderstood? You were taken to hospital by ambulance having a heart attack then left alone on a trolley locked in a corridor for 5 hours with no access to a toilet or anything? I must have misunderstood ....

[Qualipop in reply to Gladwyn]

NO, it happened. Trolleys were 4 deep. I was pushed to the end of the row which was behind swing doors that locked as they closed. I was the last in the row. I didn't have my watch but the timing was about right. I was taken in around midnight, the paramedics left after an hour when a nurse took my BP and vanished and it was 7.30 am before the blood test results came back ; they'd taken about 2 hours. I know my husband arrived at 10.30 am so they must have phoned him about 10 and I got onto the ward at about 3pm. The ward sister said it was because I wasn't grey and clammy or sweating or clutching my chest. I just had terrible indigestion and pain down my arm and in my back. Luckily I'd taken my painkiller with me that I have to take every 3 hours or I would have been having withdrawal. The paramedics had just told me there was something odd on my ECG but it wasn't enough to say definitely a heart attack.

[Whatamug1]

I managed to 'miss' the middle man (dr).

Had a heart attack on a SUNDAY last month - called 999 (I live alone). Paramedics very good (troponin showing I was having a cardiac event).

Hospital was a nightmare. Just lay around in pain with difficulty breathing - (was told I had copd).

My Troponin levels were 450ng/ml following my blood test on SUNDAY - so they were well aware I was having an MI.

THURSDAY (4 1/2 days later)…….Down for angio where they found 100% blockage LAD....stented, BUT my heart has been severely damaged. My O2 shot up to 98% as soon as I was stented. It was 'significantly' blocked a few years ago - they decided to treat it with meds after 3 'failed' attempts to stent due to 'Emergency Admissions' - (I was just sent home each time - and after an angio and Flow wire test was told I would be on meds).

What was I but an 'Emergency Admission' ?

How come 'Electives' continued to be seen before me ?

Also 2/3 years without routine blood tests, whereas they should have been done 3 monthly after starting their new meds as there's risk to other organs.

Was also left without my statins for two years + telling drs/nurses that they weren't prescribing and that I needed them. The lucky break came when I was given a 'retiring' Doctor within the practice. The one I had elected to see from the start. He said hello, looked at the screen, then asked why I wasn't on statins ? I said perhaps you can tell me Doctor. Surely, any dr should have been able to do the same?

I have Familial Hypercholesterolemia for goodness sake.

Oh, my 4 month old was having the incorrect Kidney removed and the other wasn't very good either (marked and gross Hydronephrosis). They wouldn't listen to me -so I went private. They LISTENED and £2,500 later, using their own data, my son had the correct Kidney removed and survived. He's now 31.

Believe me my relationship with the medical fraternity has NOT been good

and this is only a couple of things which have happened to me and mine. Any wonder I have no trust left.

[Qualipop]

That's disgusting but I'm honestly not surprised after what happened to me but to NOT get stents for 4 1/2 days or some years ago is malpractice. Like you I have two other blockages they won't stent; not quite bad enough for NICE guidelines. Pressure test said blood flow was ok- so why am I breathless when I try to do anything and why do I have to wait until they get worse? They reckoned the blockages were just under 70%.

[Florenceamelia in reply to Qualipop]

So glad I had my stent in France,after which I was sent to William Harvey clinic for 10 days cycling,walking, and general care. that was 20 years ago but excellent care.

[Ecki]

I was taken into A&E as an emergency, troponin 880 so everyone said I was having a severe heart attack, significant damage to heart, etc. Angio 6 days later, no Cad, they decided it was all due to Afib, sent me home. I was very debilitated, could only walk a few yards without getting chest pain, breathless, etc, told by cardiologist there was no treatment and I'd have to live with it! Asked GP if that was correct and her comment was 'How do you expect me to know, I'm just a GP'. Got a private cardiology appt, now cardioverted and in NSR, waiting for ablation. I feel I was treated very badly by the hospital and the GP.

[Milkfairy Heart Star in reply to Ecki]

Hi Ecki

I am sorry to hear about your experiences.

Did you consider contacting the Patients Advisory and Liaison services (PALS) at you local hospital to raise your concerns?

As patients we also have a role to bring poor care to the attention of the Trust responsible or in the case of your GP the Practice manager or Clinical Commissioning Group ( CCG).

Contact your local Healthwatch or Citizens Advice Bureau for support if necessary.

[Ecki in reply to Milkfairy]

Hi, yes, working on my complaint. My first email to them has been completely ignored!

[Milkfairy Heart Star in reply to Ecki]

Ask the Trust for a copy of their complaints procedure

It will say that you should have received a written response within 3 working days of your original email followed by a written response to your complaint with 40 working days.

It is really hard work and very stressful making a complaint.

However for me it did lead to a written apology from the Trust, a change in practice and an Admission plan to guide the staff how to care for me when I am admitted.

Good luck !

[Rocketstorm]

I'm 19 and experienced a blackout and lost consciousness just over a year ago. Was referred to opthalmology who referred me for an MRI. Waited 4+ months for the scan and then 6+ months for results (I spent over an hour on the phone chasing up results being out through to four different hospitals to be told they couldn't tell me results over the phone). Had another major blackout where I lost consciousness and went to Dr the next day because a&e didn't do anything the first time. Meanwhile between those two big episodes I'd have mini episodes where I couldn't see or hear. Was told it was probably seizures and they pushed me further up the neurology waiting list. Had so many tests thatve all come back clear. Was told if I had any episodes I'd to go to a&e immediately. I had an episode and went to a&e. Explained that I'd been told it was a medical emergency and I needed checked immediately - waited 4 hours before I was seen by which time it'd stopped. Had an ECG because the Dr who saw me (was amazing) had a gut feeling it wasn't neurological. Even though it came back clear and I had to be discharged, he took it upon himself to call my GP surgery (we don't have a set Dr right now, it's a bit of a mess too) and I got a call saying it was regarding my request for a letter to give to my uni. Turned out the a&e Dr called saying he was concerned they're missing a heart condition. Now the Dr who called to see me had already placed me on the cardiology waitlist and ordered me an ambulatory ECG monitor before he'd even met me.

The NHS is struggling but they do have some genuinely really caring and good staff. I'm not happy with how long I had to wait for them to decide to check my heart but hopefully we'll figure out what's going on with me now all thanks to one a&e Dr going on a gut feeling and calling out with procedures that he's supposed to follow.