Discharged from cardiologist

Call them

by Gotrhythm - 2021-11-17 14:02:07

I have not dealt with a CRTD myself, but it seems to me that a phone call to the office would be a good idea just to make sure you understand what your next steps should be.

Call them and ask if this was an error and if not, what it means. Which doctor is supposed to follow you now?

Yes call them

by Gemita - 2021-11-17 14:12:13

Sandoval, no that in my opinion is unacceptable.  As a defibrillator patient with heart failure you should expect a care plan and not a discharge notice as though you are suddenly a perfectly healthy individual.  You will need follow up, not just pacemaker checks and you will need to know who to contact in the event of getting into difficulty.  

Do you have home monitoring and are you able to send transmissions into your clinic if you get into trouble?  Of course what you are saying is potentially good news but in view of your early discharge following your need for an urgent defibrillator, I would question whether they have made a mistake either with the need for a defibrillator, with the diagnosis of heart failure, or with the discharge?  I would also consider finding a new EP/Cardiologist.

I would contact your present cardiologist asking why you have been discharged when you have heart failure and a defibrillator?   As a heart failure patient with a defibrillator, I believe you should be under the care of a cardiologist/EP for occasional follow up, not discharged back to the care of your GP which presumably has happened?

I am afraid Sandoval from what I have been hearing and experiencing, there are a lot of patients out there who are slipping through the net now and not getting the treatment or care they need.  Our health system is failing many patients and it is not altogether due to Covid.  We need to start fighting back to get the care we need.  

Discharged from cardiologist

by sandoval - 2021-11-17 15:14:40

Will keep you posted. What I also find strange is that the cardiologist didn't say a word about discharging me when I was in his office but I didn't see the chief , just one of his assistants. Also worrying they had no record/results of Holter monitor I had in June. 

I was given a card when I had the implant saying Hammersmith hospital and the device etc so I thought I was a lifetime member of Hammersmith hospital but apparently not !

Extremely poor care

by Gemita - 2021-11-17 15:59:28

Unfortunately I can believe all what you are telling me sandoval.   Was Hammersmith always your “first” hospital or were you transferred from a local hospital to Hammersmith for your ICD implant/heart failure and Hammersmith have discharged your care back to the local hospital?  

They do sometimes circle the wrong box following consultations.  It has happened to me, so I always check before handing in any after consultation form to the receptionist, so I don’t get any nasty surprises.  

I presume you are still under the care of Hammersmith for pacemaker/ICD checks, device and battery changes, so you are a lifetime member in that respect, just without a cardiologist/EP, but there will be a contact number on your card in the event of an emergency and if during your checks or any transmissions they see any serious events, they should hopefully refer you back to a cardiologist/EP and/or get emergency help for you?  As a matter of fact my husband who has recently been diagnosed with right sided heart failure and pulmonary hypertension hasn’t seen a cardiologist for over two years, so I am pushing for an early appointment.  We have had a few telephone consultations though but they were far from ideal and his cardiologist admitted he needs to be seen.

Very worrying about the Holter monitor results. I would be writing one of my long letters confirming the catalogue of events and your disappointment in the care you have received.

Sounds Like an Error To Me

by Marybird - 2021-11-17 17:51:14

Someone on their staff pushed a wrong button, made the wrong choice on a dropdown menu? 

I don't know the ins and outs of how your NHS system works, but it doesn't seem to me that any patient anywhere with heart failure and a CRTD would be set loose to fend for themselves in regards to their medical care. 

I'd have thought possibly in the event the cardiologist you are referring to was the surgeon who implanted your ICD, and your ongoing followup care would be provided by another cardiologist, or clinic, they'd have informed you of that, and you would have received contact information and instructions about the followup. So I'd agree with the others here, call the cardiologist's office and get clarification about your future ongoing care.

Best of luck! 

Discharged from Cardiologist

by sandoval - 2021-11-18 08:04:15

No Mistake. Spoke to secretary today who said the CRTD will save me !

So much for ongoing care although I have the pacing clinic still.

If I need to see cardiologist I have to get a referral via my GP.

Last time I spoke to my GP he didn't even know what an EP was!

I did ask about going private if I felt the need to see the cardilogist and apparently I wouldn't need a referral for that.

What hope is there for any of us ?

by Gemita - 2021-11-18 08:53:24

I can understand your frustration and concern for the future.  We have lost the human touch all of a sudden.  I am afraid I would be putting all this into writing and asking how heart failure patients can possibly be managed by a GP in isolation who may need to keep referring back to the patient's cardiologist, at short notice, for advice on things like urgent medication changes to manage any new symptoms better.  This is what our GP is doing at the moment and is pushing us to keep up the pressure for my husband to be seen by his cardiologist as soon as possible.

All you can do in the meantime is to keep in touch with your pacemaker clinic and report any troublesome symptoms, so that these can be investigated by data downloads or additional holter monitoring and to tell them not to lose the results next time.  If anything serious is seen, surely this should trigger an immediate referral back to the cardiologist/EP,  otherwise you will need to call emergency services and keep doing this until a better package of care is provided.

Just had a frustrating morning as well.  Respiratory nurse set up a video link with us this morning to start a course of breathing exercises.  According to her, our GP referral stated "no previous history of heart disease" on my husband's referral.  She was shocked when we told her he has three stents, ischaemic heart disease, valve disease and a pacemaker.  I am losing confidence fast too 

Decide what you need and then push for it

by crustyg - 2021-11-18 09:26:51

*IF* I understand your history correctly, Jan 2021 was when you were implanted with the CRT to try and improve %LVEF?  If I've got this correct then the most important things are a) how you actually feel - exercise tolerance, breathlessness, and b) some measure of %LVEF - usually assessed by echo or MRI (if you're MRI compatible).

The trouble is, echo is impossible to do without getting up close and personal and in the UK DHSC still hasn't relaxed distancing in care settings (supposedly the Sec of State got DHSC to reduce the 2m separation to 1m in Primary Care just after he'd had a major go at GPs for not seeing enough patients face-to-face).  Ironic then, when less than 50% of MPs offer face-to-face meetings for their constituents.  And there simply aren't enough MRI machines (and folk to interpret the output) in the UK.  There was a backlog of echos in the NHS even before the pandemic and it's now spiralled out of control.

*IF* your %LVEF has been shown to have improved post CRT implantation then I wouldn't sweat this too much.  If you haven't had this reassurance then I would start writing (recorded delivery) letters of complaint, starting with your erstwhile EP-doc and the Complaints dept at his/her hospital and keep going until you're writing to the GMC.

There's a collection of reasons why UK-trained docs and nurses leave the NHS - and Jeremy Hunt helped tip this into near-free-fall (first Sec of State to be in charge when <50% of completed F1 signed up for F2 training).  We can train them, but until someone really shows interest in *why* they leave it will only get worse.

Discharged from cardiologist

by sandoval - 2021-11-18 12:26:49

I had an MRI before my CRTD (Jan 2021)and my EF was 15 which was due to several episodes of arrythmias and being blue lighted to hospital only to get a magnesium drip and be sent home. Before the CRTD  I had an ablation(Mar 2020)  but my EF didn't improve. Before any arrythmias my EF was 25-30. 

The CRTD  seems to have improved my EF back to where it was before the arrythmias 25-30. So after an ablation and a CRTD  I am back where I started minus a Cardiologist.

NICE Guidelines for monitoring and review of heart failure patients

by Gemita - 2021-11-18 14:26:30

https://pathways.nice.org.uk/pathways/chronic-heart-failure/managing-chronic-heart-failure#content=view-node%3Anodes-monitoring-and-review

Sandoval, if you do decide to write a letter asking the cardiologist who has discharged you for a proper future Care Plan, you could quote from the NICE guidelines above.

You should ideally have been given a Care Plan, showing contact details of a named healthcare coordinator (usually a specialist heart failure nurse) who could direct you to urgent care for review if necessary in the future, or back to the specialist heart failure multidisciplinary team.  The Care Plan should include plans for managing your heart failure, including follow-up care, cardiac rehabilitation and access to social care.

All patients with chronic heart failure require monitoring at least six monthly for stable patients with proven heart failure according to NICE guidelines, since heart failure is an unpredictable condition.  Use of optimal medication requires surveillance, especially of kidney function and fluid status, so you clearly need a Care Plan for you, your family and those treating you.

I hope your CRT improves your ejection fraction and you won't need to depend on our health system.  Good luck

Discharged from Cardiologist

by Aberdeen - 2021-11-18 16:08:11

Very helpful comments from other pacemaker club members.As a CRT-D patient you should have a home monitor. I received a phone call recently because the ep had received an unusual reading from my pacemaker. I had a pacemaker check up due so they checked up on me then. I have a CRT -P pacemaker. I also receive an annual echocardiogram.