It pays to chat

[nanmc]

Following my last post re shingles vaccine and that I had not had a face to face consultation since pre covid I have had a telephone consultation and I thought I would update you.

The telephone consultation was with another unknown nurse within the haematology dept.

My blood results were stable and I was to carry one as before.

I expressed my concerns re no face to face consultations and that every time it was a different person on the phone. Firstly I was told it was a successful system but when I pointed that I could have been anyone although they had checked by asking date of birth.

I was told a face to face could be scheduled for the next 12 week appointment if I wished. This has now come through. 👍 I also pointed out I had other issues re mobility which could or could not be related with drugs etc. and that I had regularly requested a copy of blood results but they were not always forthcoming. ( find being able to look back at my stats is most useful)

A very positive conversation followed and I since have had a letter with details of Macmillan nurses and contacts within the department which I should have been given and updated with over the years.

I have had a phone call from one of them and a meeting followed. Also phone calls from the local support net work re therapy available and also the local councils help and support dept. re help and assistance .

A win win result 😀

and I have also booked in for a shingles vaccine.

[hunter5582]

Glad to hear that you successfully advocated for yourself. While the phone-only appointments made sense during COVID, there is no reason to continue to do them. Cycling through an endless series of provider who do not know you as an individual precludes forming a provider-patient relationship. This reduces quality of care and is ultimately dehumanizing. The best systems ensure that you see the provider of your choice for every appointment and that you have choice in whether the contact is in-person or remote.

Sorry to hear that you have encountered difficulty accessing your records. That really should not be an issue now that patient portals are so readily available. I can see all of my labs, reports, and appointment notes in my patient portals. This access is a vital part of managing my medical care.

It sounds like the system of care responded to your self-advocacy. It is great that you are able to access additional resources. You demonstrate that assertive patients receive higher quality care.

Wishing you all the best.

[Micky1956 in reply to hunter5582]

I totally agree with this post as I have done exactly the same and arranged a face to face appointment. We are all in danger of dehumanising ourselves by only talking over the phone and its right that your face to face personality gives a better picture of continued treatment. Wishing you all well and hoping that a some point in time they will be able to completely deal with this rare condition.

[Ebot]

Hi. Thanks for the update. Excellent news. Well done! Please keep us posted.

[Spanelmad]

Well done for pointing out to the NHS that blood work ok does not necessarily mean that your not experiencing symptoms.I like you see a different Hea m at all but one appointment thank God for a second .

[Scaredy_cat]

It helps to have a face to face appointment occasionally because you nay get an enlarged spleen which you can't diagnose remotely!

[Hidden in reply to Scaredy_cat]

Yes, I have had telephone appointments every three months along with blood tests for 3 years. My appointment at beginning of July is face to face, as she hasn't met me face to face as my consultant changed. She said she can examine my tummy so I presume this is to check spleen. Always anxious at the appointments so fingers crossed