Long COVID inquiry - your views

Public … very few people I have met know anything about long covid

Medical professionals… most just say to me ‘I don’t know anything about long covid’ . My GP actually asked me where they should refer me to get a diagnosis and when I told him the Scottish government thought he should be able to do it he just changed the subject. Medical professionals who have heard of it are ill informed suggesting things like GET.

I’m not working but my daughters school (including school nurse) were totally unaware about the condition or what the impact would be.

Government adverts about the extent and risk of long covid and the mitigations that can be taken to reduce risk. Actually tell the public the truth that covid isn’t just about the deaths but the long term illness. Also to raise awareness that children get long covid too and can be severely affected.

If long covid assessment clinics are appropriately staffed and able to be accessed in a timely manner with access to further appropriate referrals (eg for POTS, MCAS, lung function etc).

It’s taken neatly 3 yrs to get my wheelchair bound daughter an occupational therapy assessment! So absolutely diabolical mix of services.
My daughter was referred to a CFS clinic out of Grampian trust area, was accepted by the CFS clinic as an appropriate referral, but Grampian refused funding as ‘it would open the floodgates for other long covid sufferers who wanted referring out of area. Grampian had no service so just left my daughter without any provision.

Wheelchairs for those sufferers who are unable to mobilise outside the house without. We have had to buy one ourselves or my daughter would never have left the house in nearly 3 years. Think of the impact that has on mental health. Not everyone can afford this.

Respite care. My daughter was unsafe to be left alone due to her poor balance and dizziness for a long time. Which was a huge strain on me as her mother and also disabled.

An ongoing point of contact who can advise when symptoms change or develop, fast-tracking to appropriate services rather than having to start again with the GP and get re-referred within the system again.

Diagnosis criteria.

Bio-medical markers to identify the condition and potential treatments.

Why certain individuals get it and others don’t. Is there a pre-disposal to getting long covid.

The utilisation of current medications that will alleviate symptoms eg Ritalin has been used in the US for chronic fatigue with some success. Looking out with the U.K. to see what is working.

No. There are no numbers on the number of children with it. Though they would also be tainted by a lack of diagnosis as GP’s and secondary care doctors are often incapable of making an informed diagnosis of long covid.
Coding is not being appropriately utilised despite there being a coding option for long covid. My daughter was incorrectly coded despite me informing the correct code.
So whilst there is not the information being gathered, there is a general lack of knowledge amongst the doctors to actually be able to inform information gathering.

Almost 3 years in of my daughter having long covid. I now have it too. And still there isn’t appropriate care. I have had to take her overseas for a lung function test and this showed reduced function by (and other testing). Her oxygen saturations drop to dangerous levels frequently and literally nothing is done because it didn’t happen when she was sat in the hospital bed (it happens when she walks up the stairs). I have no idea how much damage this is doing to her already cognitively impaired brain.