The Lupus UK (healthunlocked) forum members were pivotal in developing the questions for this study and giving feedback on the emerging findings; and Im guessing many may have taken part in the surveys.
Its just been published in British Journal of Rheumatology and is open access and so can be downloaded free of charge.
"Will ‘the feeling of abandonment’ remain? Persisting impacts of the COVID-19 pandemic on rheumatology patients and clinicians"
Thank you,that’s very interesting.I’ve skimmed it,plan to read n full later.It rings loads of bells with me?
I have CTD and interstitial lung disease,I’m on oxygen ,struggling a bit at present.
I’m described as complex by consultants.
I have a GP,who has some knowledge of my conditions.however,I have not been able to speak to him for ages.
This wastes so much time.
I have to explain stuff to a GP who has no knowledge of my conditions.
The advice lines advise is ring GP!
I’m sure I’m not the only one n this position..basically I’m my own Doc at present.
I always have a rescue pack in and have extra steroids in case I need to increase the dose.
I was a bit stressed about it before Christmas,then I thought y lungs are so Scarred that an extra steroid / antibiotic here and there won’t make much difference.
So managed to have a decent Christmas with family.
I’m sorry to moan and for rambling on.
I know there are loads of others in my position.take care
Thank you for your kind reply. .I had a phone consultation with rheumatology consultant and ILD CONSULTANT.My treatment since diagnosis has been good. 3 monthly appointments .
And regular Spirometry.
They’re hoping to be able to offer me anti fibrotic drugs to help my lungs.I know they can’t cure me,but they do their best to make things easier for me.
Covid has had a negative effect on so many peoples lives. It’s made it harder to get advice between appointments.I feel guilty for moaning,it’s just frustrating at times,trying to get advice
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