CMDU working much better than last time.

[Snellybob]

10 months ago when I last tested positive for Covid the CMDU rang within 24 hours but due to misinterpretation (I think) of the medication that I said I was on, I was assessed as needing a transfusion. For various administrative mistakes this never happened within the 5 day window so I didn’t get the treatment.

This time however, the process has been much more efficient. Day 1 symptoms, Day 2 positive LFT reported online to NHS, Day 3 - a bit over 24 hrs but they are under pressure - CMDU ring me. Much easier process than before; they have access to my GP record permitting a rapid review of my existing medication and a look at my my most recent blood test results.

Antivirals prescribed with temporary suspension of some of my existing medication. Day 4 antivirals arrive by courier with telephone call in advance to warn me of their arrival. Excellent!

As a member of useMydata (usemydata.org) I’m delighted to encounter a clinician in another part of the NHS who has access to my records to help my care and speed up their own job.

[EmilyLondon]

Best of luck with the antivirals. They made me feel a bit rough.

[richardp]

That's great to hear as my last experience with the local CMDU ( June 22) was not good. They took 24 hours to contact me and said they had tried to ring earlier but couldn't get through ( no missed calls) then rang at 5.00 pm on Friday after I contacted them and agreed I needed Paxlovid but unfortunately their dispensary was now closed but it would be dispensed the following morning. Offered to come and pick up medicine but they couldn't do that and it would be sent by a local taxi firm. Gave them very clear instructions as our house is down a "concealed " private driveway. Still not arrived by 5.00 pm Saturday day and was told the taxi driver could not find the house despite my telephone number being on the delivery note. Apparently they were not able to make a note of the exact location. Then told that it would be delivered the following Monday! Advised that would be a waste of time as outside the recommended timescale and said I could be at the hospital within 10 minutes . At least this time someone more helpful who promised to get hold of the " courier" and deliver it that evening and they were asked to ring me when they were close to my address and then had to stand by the roadside for the driver to practically throw the package at me. Various suggestions to the CMDU about improving the experience were totally ignored.

[Snellybob in reply to richardp]

Sorry to hear the CMDU were unresponsive to 'lessons learned'. For what its worth my local CMDU was happy to enter an email correspondence on how to improve after my previous experience. Obviously very dependent on individual staff and their approach.

[JEEA]

Good to hear how well things went for you Snellybob and sorry to hear how difficult your experience has been Richardp. Mine, way back in June with Watford General, was very good.

What I am really messaging about is your reference to being a member of useMydata. I've not heard of it before and was wondering not only what is about, but how it was useful to you in this instance. Can you say more about it. I am wondering if I should join? Eleanor

[Snellybob in reply to JEEA]

Eleanor, I would recommend joining useMydata if you have an interest in the use of your data for your own care and for research.

Its free to join and you get a weekly email about things going on in the health data world. Its a patient movement which developed from a group of cancer patients who felt their data was not being used as much as it should be.

Some of the members volunteer to act as patient reps at various conferences or on NHS panels. Funding for the very small permanent staff comes from a number of research grants.

But do have a look at the website and see what you think. usemydata.org/about.php

Regards

David

[JEEA in reply to Snellybob]

Thanks David. I will join. Sounds most useful .

Did you ever read the book "The Immortal Life of Henrietta Lacks" ? "It tells the story of an African-American woman who died in 1951, aged just 31, of an aggressive cervical cancer. It also tells the story of her legacy: the HeLa cell line, taken from Henrietta's tumour while she was still alive, cultured in a lab, and discovered to be immortal." It also tells how the research on her cells "changed modern medicine. It also considers the ethical dilemmas of using patient cells without knowledge or consent, the way race played a part in how Lacks was treated, and the impact on her family decades later."

Worth a read if you don't know it. Eleanor

[Snellybob in reply to JEEA]

Thanks for that - will have a look at it. D