PM service

Home Monitoring

by Penguin - 2023-11-29 06:18:23

Piglet, 

I'm really sorry to hear that this is happening with your local service, and I know that you're having a really rough time,  but these measures are not happening everywhere.  I have never received that level of service from the NHS and cardiology services.

Could you join one of the NHS patient groups which provide feedback?  It's not necessarily going to have an immediate effect on policy, but you strike me as someone who would be listened to.  

You are in an area with quite a high % of older people (South Coast). Perhaps this is why the Cardiology service is so stretched and resorting to these measures, which I agree come with risks. 

Home monitoring is great in some regards and I'm sure it picks up a lot of problems, but it also has a fair 'miss' rate too and is highly dependent on programming of alerts and programming in general.  The device generated ECGs are not as good as a 6 or 12 lead ECG's. 

Can you speak to your GP again to follow up your test results? 

Pacemaker Monitoring Service

by Gemita - 2023-11-29 09:34:30

Hello Piglet,

As you know I have been following your difficulties closely and I want to try to help you in any way I can.  In view of your rhythm disturbances and continuing symptoms, I believe your best course of action would be to get yourself seen regularly at your device clinic where they could follow up on any dates/times when you report symptoms that have caused falls, loss of consciousness or required a visit to A&E.  Until they relieve your symptoms, there is, in my opinion, a real need for you to attend clinic in person more frequently and not to get lost in the system which I feel will otherwise happen.  

Perhaps when you see your EP/consultant in February 2024, you could discuss the possibility of a regular in person appointment, say every six months, until you are stable and better able to manage your symptoms?  I see no harm in asking and any good consultant would agree that might be a reasonable plan of action.  You could either work with your EP or a technician to try to achieve this?

There are clearly regional differences between GP surgeries and hospitals in the UK.  Both my care and my husband’s care couldn’t be better.  We are seen in our Pacemaker Clinics every 6 months and the attention we receive is excellent. I am in touch with many of my husband's consultants regularly by phone or email and we see them regularly too.  They listen to us and are guided by what we have to say, since we keep detailed records, particularly of any significant symptoms we experience between appointments.

Piglet what have you got to lose by asking whether you could be seen in person for 6 monthly pacemaker checks until you achieve a degree of symptom relief or arrhythmia control?  In fact, I am surprised they haven't recommended it. Just to go back to ask questions, listen to answers, have your stored data/ECGs checked will be so valuable. I recall a recent check up of mine led to settings changes, changes that would not have been possible during routine remote monitoring.  Also as we know, not everything is stored on our pacemakers, depending on the parameters set by our doctors, so it is even more important that we keep records of when symptomatic events occur and share these during in clinic appointments.

Finally don’t forget occasionally to tell NHS staff that you appreciate them.  It can make all the difference.

Thanks Gemita and Penguin

by piglet22 - 2023-11-30 06:29:11

Thanks for taking but time to reply.

There was an interesting BBC news item today that described the neurology department of my health trust as having a toxic culture leading to botched surgery.

I believe it goes further and years ago I described the reception at cardiology outpatients as being like Guantanamo Bay.

What is really regrettable is that they had first class clinics at the local cottage hospital five minutes walk away.

Even months ago when I went there, I chatted with the receptionist who had worked there for 20 years and said how lucky we were to have the local facility.

I think there is a management led drive to see just how far they can go in cutting back until something goes wrong.

I can tolerate a lot of things, but this new way of working makes you feel isolated and remote.

Primary care isn't much better and the decision of four surgeries to combine into one super surgery just before before Covid has been catastrophic.

The neurology report doesn't surprise me at all and it's probably the tip of the iceberg..

Reports of failures in healthcare crop up regularly now and I can imagine that if you are in the thick of it, it must sap the will to work.

Next week's "virtual device clinic" will be interesting but I'm not holding my breath and not expecting much.

So much for UK's promised Big Society and levelling up.

I'll be re-reading all your advice later on.

Hi

by Lavender - 2023-11-30 20:32:48

I wrote a response but it was lost in the website move. I'm sorry you're having such frustrating care. 
 

You said no one followed up on your tests. Can you be more persistent in getting answers? Will any one respond to your calls for an explanation?

Hoping things improve somehow!