Virtual vs Real

how true

by new to pace.... - 2024-07-20 08:29:04

Piglet22 you are quite right in all your above comments.  In the US we have shortage of healthcare workers. 

My pacemaker clinic  is now only open only 4 days a week. Closed on Fridays which i learned when i called to ask for a summary and log events for the past quarter.

new to pace

(((Piglet22)))

by Lavender - 2024-07-20 08:37:56

That's a hug in the subject line. Piglet, you are such an intelligent and interesting person with lots of insight. You had a good, what? 18 years with a pacemaker. The progressive decline in medical attention is appalling in your area. I know that many others in the UK report better luck at being seen inperson when warranted. If I recall, you live in an area poorly served by healthcare. 

My own pcp office has a daily walk-in clinic where you can be seen quickly without an appointment by a physician assistant. I also have access to virtual telemed appointments. It's about a three month wait though to see my pcp. For specialist appointments it's longer. My bf had a rash on his back. We called the dermatologist but it was a four month wait to be seen. So, he went to the walk in clinic at the pcp and was given an RX for a steroid. 

The rash continued on. He tried seeing the pcp but they said they didn't know anything else to do. He called the dermatologist and after much wrangling got an appointment in a month. He was seen, given the proper RX and the rash was gone in days. 

Seeing the right specialist in a timely manner would have saved him months of dealing with a rash. 

The heart is much more difficult to oversee than a rash. Seeing a cardiologist or EP in a timely manner is so important. It's difficult to move to an area closer to good care, I am sure. Your vent was a good one. Where are we headed?

Virtual vs Real

by Gemita - 2024-07-20 11:07:48

What a thoughtful post Piglet.  I have struggled with all of those departments over the last few months even with the Inland Revenue who used to do the work themselves.

The way forward:

I could accompany you to all your appointments and apply maximum charm as one UK member always reminds us.

We could send a copy of your post or an edited version to PALS (Patient Advisory Liaison Service) who could ensure that your letter is received by an appropriate department in the hospital.  You could copy your consultant/pacing clinic and even member of parliament now that we have a new government.

You could change the way you behave with your health care team, emphasizing the need and desire as you get older with complex health conditions and electrical disturbances to receive F2F follow up more frequently, especially in the coming months when you will be needing a battery change and may experience an increase in heart rhythm disturbances before and after any upgrade.

Some of the reasons why we are doing better this end is that we have complex health problems and have had referrals to London teaching hospitals.  Local hospitals were not as good.  For example my arrhythmia clinic at St. Thomas is excellent as is my husband’s clinic at King’s College Hospital.  They spend a lot of time with us during appointments explaining our condition and some possible fixes.  We always come away feeling well cared for and it makes such a difference to our well being.  Locally we had to fight for my husband to receive a heart monitor when he has ischaemic heart disease/heart failure.  As soon as we transferred to his London Hospital, they sent us home with a smart hospital bag and a new monitor which is interrogated quarterly.   He has an annual in person check. They spent an hour with us during the last appointment.

If a pacemaker patient is stable with no significant arrhythmias or decline in heart function, doctors are not too concerned and just tend to watch.  If nothing is seen they may be reassured and monitor us remotely.  This is likely what has been happening to you Piglet.  They didn’t expect anything to go wrong.  It is important that we report (as you did with your PVCs) when symptoms cause concern.  Unless we tell them how much we are suffering, they won’t know.   It is for the patient to be proactive and to report any early changes in their condition quickly before things really deteriorate.

In my opinion everything deteriorated during/after Covid and services haven’t returned to normal.  Blood tests have to be booked online or by phone and there can be long waits.  It was so much nicer when we had walk in clinics.   How elderly folks without access to a computer are supposed to manage booking appointments, ordering prescriptions, checking MyChart and other online health record systems, I will never know.  They are clearly at a disadvantage.

Your statement is very true, “Someone had made the deliberate decision that certain patients didn’t need the physical patient-clinician interaction”.  I am afraid with electrophysiology, if we are not having or needing help with arrhythmias, we may be discharged back to the care of our general doctors or cardiologists.  Having a pacemaker is for life but because pacemakers are so reliable today, if we have no special need to visit an EP, we may at best only get an annual in person check and at worse only an annual virtual check for years until something goes wrong.  It is therefore for the patient to push to be seen whenever symptoms are troublesome.

I will let you have the last word:  “what has quietly been happening, dressed up as exciting online digital, is the workload has shifted from provider to customer. If something goes wrong, you fix it. That’s where your time goes”.

My time is certainly taken up studying test results, clinic letters, booking appointments, ordering prescriptions, collecting prescriptions, attending hospital appointments and procedures, speaking to doctors, specialist nurses, dieticians, self monitoring of glucose, blood pressure and heart rate, liaising with health professionals for myself and for my husband and having to make healthcare decisions sometimes without speaking to a doctor.  I have precious little time to do little else these days.  Are we better off?  I am not so sure but I like being an equal partner in our care and receiving immediate reports/diagnoses following appointments rather than having to wait for months . . .

Thanks all

by piglet22 - 2024-07-21 06:29:46

No doubt, virtual clinics are here to stay.

Home monitoring is a useful adjunct, but not a substitute.

When I got my monitor, it was like an afterthought at the final face to face as I was leaving. No explanation why they were doing it, what the monitor would do.

I had to find all that out. There are still buttons on it that are not described anywhere. Perhaps they think these are details that we don't need to know or wouldn't understand.

It lights up now and again of its own accord.

One thing to be clear on, is that not all monitors are equal. Older pacemakers and older monitors (Medtronic MyCareLink), do not monitor you. You could suffer a cardiac arrest and no-one would be the wiser. Without the wireless capability of Bluetooth or similar, you have to initiate all the communications.

It would be nice if it had a panic button.

The point of writing about this is that services are generally being degraded. It's being done to suit others, not you. You have no say in it.

new to pace

It seems to me that you are doing well and have a healthy interest in your condition and the high tech solution your device provides. Best wishes.

Lavender

You flatter me, but it is appreciated.

I'm not clever, just a doer. I like a challenge. At work, I was the Dirty Harry character. I got all the jobs no-one else wanted to do.

I was lucky throughout my life to have many interests and hobbies, My work was always interesting. I've been under glaciers and worked in the deepest oceans on a Canadian weathership in the middle of the North Pacific. Just as well I didn't have the pacemaker then.

Gemita

Well, what can I say? A full and thoughtful reply.

Of course, this is a changing world and digital isn't going to go away. It's as important as electricity. If you don't keep up to speed with those skills or are terrified to use them in the first place, life is going to get harder.

Using a smart phone isn't just for entertainment, it is literally the key to many services. As we get older, it can be a lifeline. Ordering medication, managing your finances.

I'll drop you a PM in the next few days.