The ME Association has been part of a NHS England (NHSE) collaboration – with the British Lung Foundation, Asthma UK, Macmillan Cancer Support, Diabetes UK, other charities and Long Covid support groups – to develop a new website portal that will help identify the needs of people with Long Covid and direct them to relevant resources. We are now asking for people with Long Covid to test the website and let us have their feedback before it is launched. The Beta assessment only takes 5-10 minutes to complete and is anonymous. https://meassociation.org.uk/2021/11/nhse-long-covid-collaboration-assessment-tool-testing/
It looks pretty ghastly to me. Masses of questions that would be impossible to know how to answer. One to one human communication is more subtle and powerful.
I had a quick look at the start of this. It's bizarre. It goes through a list of symptoms like breathlessness, cough and headache and you are asked to rate each one by answering the question How worried are you about ... (symptom), with 4 options for each from very worried to not worried. That's ambiguous. Is it aiming to gauge how the symptoms affect the person's anxiety level, or is it a stupid way of trying to find out how severe and disabling the symptom is?
I have been trying to come up with sensible explanations as to why the MEA are part of this and sharing it - are we supposed to complain while it's in "beta"?
It honestly reads like a parody website I did not complete it but have read it to the end. What is going on?
CS FB comments about these issues from this morning after several people (including myself) complained [name removed]: "Please note that we have been asked to join this group - which is being led by the British Lung Foundation - who have been asked by NHS England to produce a website source of links to useful sources of information for people who have Long Covid Our involvement obviously relates to the overlaps with ME/CFS The MEA did not design this questionnaire It is work in progress and is being placed on websites of the all organisations involved to provide feedback I fully agree with the point that people are making about the use of the word ‘worried’ in the questions about symptoms The wording is not right here - it should be asking about the severity these symptoms and the effect they are having - and not implying that people are anxious about their symptoms We will be making this clear in our own response. Dr CS MEA" "Thanks [name]. I fully agree with the point you are making and I don’t think the wording is right here in relation to use of the word worried. It should be asking about the severity and effect of these symptoms. We will be making this clear in our own response. Dr CS MEA"
I went all the way to the end of this questionnaire and clicked submit. Basically for all the questions I clicked “very worried” about, like shortness of breath and chest pain, it told me to contact 111 urgently. Then all the things I said I was “moderately worried” about, eg tiredness it had a line or two about how this may be a symptom I’m struggling with, but that it can sometimes be indicative of a serious condition so I should also see my GP to get things ruled out. Similar for the answers to questions like, I’m worried about looking after family etc. just very basic answers. there wasn’t really anything that could actually help - not really any further signposting to proper services either - and I ticked that I had long covid symptoms but no diagnosis, and no help from the NHS so far. It seems shockingly bad. I really do feel very sad for long covid people if this is the kind of “help” they are going to get. (I agree the whole “worried about” wording is ridiculous and very BPS. So similar to questionnaires I’ve done before).
I suspect the questionnaire is designed for the treatments on offer in the Long Covid clinics, which are going to be mainly CBT and GET! Hence the use of the term 'worried' as all that they will be offering to treat is a person's 'anxiety and depression', plus any 'deconditioning'. The directing of patients who are 'extremely worried' about potentially dangerous symptoms to NHS 111 and 'moderately worried' to their GP, is to cover themselves against any liability arising from patients who may have an undiagnosed illness other than Long Covid.
I tested it (bit naughty as I don't have long covid, but I don't respect the survey so don't feel guilty about it). Agree with the above comments, on fact having to report how worried I am about symptoms just feels like I'm being patronised. Poor wording. I think the value add is supposed to be the fact that it spits out a shorter list of the symptoms and the self-help advice, links to more info,and highlights red flags. I can see why somebody with brain fog might benefit from that, the information is quite simple and not overwhelming. It is probably also useful to have something to print and take to your GP, and might feel validating for some people, but for that function I think the questionnaire could be designed better.
