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 Post Posted: Mon Oct 26, 2020 8:32 pm 
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It saddens me to write this but i can't help think that the Welsh Government is not understanding what Long Covid is... Maybe Joan can shed some light on where the thinking of the Welsh Government is coming from?

For example:
In May, the long covid i know was not even thought of as a possiblilty, let alone in the mindset for setting up a 'National Framework for Rehabilitation'.

The "Long COVID" the Welsh Parliament refer to is not the same for someone who was never hospitalised, in May there was almost certainly likely a need for a 'rehabilitaion framework' to be set up for people recovering from Covid after hospital admisssion, but to put people who were never admitted to hospital into the same category is simply wrong.

Rehabilitation after hospital admission to Covid in May is simply not the same as the long covid for those who were never hospitalised... that said, i have no doubt that many down the line will be experiencing the same.

I feel i'm struggling to explain myself so let me quote this from the article:
Quote:
This Framework identified four population groups: those who are recovering from COVID-19; those whose usual care for a health condition has been paused, those who have delayed approaching health services during the pandemic period for whatever reason and those whose health may have been affected by reduced activity, or contact with others as a result of restrictions, shielding and self-isolating.

...And add a fifth group:
Those who never knew, or were never tested for Covid, yet who to this day are struggling with symptoms that all point to having had Covid, aka 'real' Long Covid.

I'm quoting the Welsh Govt article in full below because it's subject to change, at time of writing it's dated 23rd Oct...

Written Statement: ‘Long COVID' Longer Term Impacts of COVID-19
Quote:
The Welsh Government took prompt action as the evidence began to emerge in the spring identifying the likely need for rehabilitation for people recovering from COVID-19, which is now popularly referred to as ‘Long COVID’, and for those people indirectly affected by the lockdown measures. Long COVID is especially but not exclusively used as a term for people with long standing health impacts from COVID-19 that may not have required hospital treatment. Working with stakeholders, we published a National Framework for Rehabilitation in May.

This Framework identified four population groups: those who are recovering from COVID-19; those whose usual care for a health condition has been paused, those who have delayed approaching health services during the pandemic period for whatever reason and those whose health may have been affected by reduced activity, or contact with others as a result of restrictions, shielding and self-isolating.

Over the summer, we published a suite of guidance and resources to support health boards and their partners to model their population needs and to plan and develop their local rehabilitation services.

We have emphasised the importance of developing rehabilitation services in our Winter Protection Plan and planning guidance to the NHS.

Our approach to people recovering from COVID-19 is focused on providing care and support as close to home as possible, tailored to meet an individual’s specific needs.

We believe this can be best achieved by providing integrated rehabilitation services for the range of longer term effects of COVID-19, such as fatigue, breathlessness, heart, physical or psychological impacts, whether as a result of COVID-19 or other pre-existing conditions. The majority of people can access the rehabilitation support they need from the multi professional health and care services in the community and, only where necessary, from inpatient rehabilitation services.

We are continuing to learn about COVID-19. Wales is working in a number of areas to ensure our response is based on the latest evidence and research. We are participating in the development by NICE of a clinical definition of Long COVID and subsequent guidance on diagnosis and care.

Wales is participating in the UK Post-Hospitalisation COVID-19 Study (PHOSP-COVID), funded by the National Institute for Health Research (NIHR) and MRC UK Research and Innovation. This world leading study has been established to assess the long-term effects of COVID-19 on patient health and recovery in 10,000 participants with the aim of informing the development of care pathways to help patients recover as fully as possible after having experienced the disease.

The Welsh Government has and will continue to take action to support people with Long COVID. I will issue further updates as more information is available.

This statement is being issued during recess in order to keep members informed. Should members wish me to make a further statement or to answer questions on this when the Senedd returns I would be happy to do so.
Source: https://gov.wales/written-statement-long-covid-longer-term-impacts-covid-19


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 Post Posted: Mon Oct 26, 2020 10:14 pm 
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I'm sure that you are correct that you are not alone.
Although they don't say it directly in the communication you quoted, it appears that they could include your situation in the same study based on the wording of this part of the statement: "We believe this can be best achieved by providing integrated rehabilitation services for the range of longer term effects of COVID-19, such as fatigue, breathlessness, heart, physical or psychological impacts, whether as a result of COVID-19 or other pre-existing conditions."

Perhaps I'm being optimistic, but I do think that health officials are aware that many people contracted COVID and were never tested, therefore there will be sufferers of Long COVID who were never tested. Here in my state, the Health department lists the number of deaths attributed to COVID per the official death certificate *and* they also report the number of additional suspected deaths -- those who died with clinical symptoms of COVID, but were never tested. And I continue to see statements related to statistical reporting that strongly suggest that the official statistics grossly undercount the number of infections due to lack of testing.

-steve

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 Post Posted: Mon Oct 26, 2020 10:44 pm 
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welcoming committee
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You may be right Steve but the wording of the article leads me to believe that the Welsh definition of "Long Covid" is not the same "Long Covid" that myself and many others are suffering from today.

The article above is not about deaths, it is about how the Welsh Government (a devolved parliament within the UK) plans to cater for people suffering from "Long Covid", their definition appears to predate what is now understood to be "Long Covid" today.

i.e. What was known in May cannot be related to what is known in October... yet the Welsh parliament appears to be doing just that.
Quote:
The Welsh Government took prompt action as the evidence began to emerge in the spring identifying the likely need for rehabilitation for people recovering from COVID-19, which is now popularly referred to as ‘Long COVID’, and for those people indirectly affected by the lockdown measures. Long COVID is especially but not exclusively used as a term for people with long standing health impacts from COVID-19 that may not have required hospital treatment. Working with stakeholders, we published a National Framework for Rehabilitation in May.

In May the term "Long Covid" simply didn't exist so i'm not sure how any government can claim "prompt action" unless they don't understand the illness, which of course they didn't.


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 Post Posted: Mon Oct 26, 2020 10:58 pm 
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welcoming committee
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Location: Dunedin, Alba.
Let me put that another way, rehabilitation for Covid in May was rehab from hospital after release for Covid, something the above appears to be focused on.

Long Covid (as i/we know it) is another beast altogether that may or may not involve hospitisation that only came to light after June/July, i'm not sure of the exact timimg for when the term "Long Covid" was born but i'd be amazed if it was in May!


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