LISTEN research study- to all those involved, please complete your follow up questionnaires!

[Paul_Howard]

If you have been involved in the LISTEN (small email support groups or control group) research study you will have recently been sent an email with a link to a follow up questionnaire from the University of Cambridge. Please do your best to complete this questionnaire as it will also help inform policy and the NHS about wellbeing and care of people living with lupus and other similar conditions, especially during the coronavirus pandemic.

Many of you will know that LUPUS UK is working closely with researchers at Cambridge University, rheumatologists and people living with lupus and other conditions on these patient-centred studies. We really appreciate your support in completing these questionnaires. Together we can make sure patient voices are heard.

You will have been given your own link in the email you received last week and earlier this week. Please check your spam folder if it wasn't received. We understand that some of you may be flaring and/ or have joint pain and be unable to complete the questionnaire at this time. In this case, please do email or phone Melanie on: [e-mail] or 07975799052 and she will be very happy to help complete it online or on the phone with you.

[MelanieSloan]

Thanks very much Paul and to all who participated.

We have about half of the second questionnaires returned so far. These results will be very useful for the NHS and policy makers, particularly in helping to assess the impact of the coronavirus pandemic so please do complete your questionnaire link if you've been a part of this study and haven't yet done so.

Note - some people have reported theirs went into spam/junk so please check emails from end of last week in junk/spam too!

Thank you - we will share the results with this whole community as soon as possible.

[eekt in reply to MelanieSloan]

Thank you for all you do, it’s so immensely heartening we’ve not been completely forgotten! xxx

[eekt]

Thanks Paul for all the fantastic research! And to Melanie too for all her hard work.

Seems to me this questionnaire is incredibly important since it will capture changes due to the Covid situation? Or maybe even unique since the project was begun pre-Covid?

The questionnaire is really straightforward to click through, so if you’ve not done it yet, give it go! It’s all contributing to the science.......anyone know what’s happened to the government’s special advisers as they’ve disappeared from the daily briefings..? 🤪. Xxx

[happytulip in reply to eekt]

I can't say for certain but in my opinion there is a bit of a split between the thoughts and advice of the scientists and the policies that are being made by the government.

Prof J Van+Tam infamously said that "in my opinion the rules apply to everyone, and in my opinion the rules are for the benefit of everyone." This is in relation to a question about the actions of Mr Cummings.

It has also been widely reported that Chief Nurse Ruth May was ditched from a daily briefing at the last minute because she refused to toe the party line on Mr Cummings actions. It was the day that Matt Hancock looked a bit flustered and had to do the slides on his own. I think it was 1st June, I might be wrong

This is just an opinion that has been widely reported but no one has confirmed this. Although I find it a bit telling that J Van-Tam was quite a regular on the daily briefing before he said this.

Personally I prefer it when there is a representative of the scientific or medical profession there.

I suppose we all have our own thoughts and need to make our own minds up about why the scientists aren't having such a public input.

[eekt in reply to happytulip]

Thanks HT, ah, 1st June was a comedy classic...I have a clip on my phone of Matt the 'Pink Tie' at the podium saying 'the...….em……..the...…..em……..I've completely forgotten' ….it happens to the best of us!

The special advisers are fed up of the government saying decisions are 'based on' the science when the science is taken and manipulated to suit government ends, with rumours the two top advisers, Whitty and Vallance, will quit if the 2m rule is dropped xxx

[MelanieSloan in reply to eekt]

Thanks eekt! Yes definitely, the timing of this study is going to be particularly useful for policy makers, as we will have a measurement of people's wellbeing just before the pandemic, and now, and then again in about 8 months.

We know completing questionnaires can take a while to get around to, but we are really hoping as many people who are well enough can complete their questionnaire as the results could impact future decisions, and lead to improvements for everybody with lupus and these types of diseases.

Thank you

[eekt in reply to MelanieSloan]

Plus it’ll be measure of how much the NHS became the CovidHS since rheumatologists are redeployed, leaving us lupies hanging?

Wouldn’t it be good if this project made the news! 🙂

Thanks Melanie! xxx

[MelanieSloan]

LAST chance to complete your questionnaire is today (SUNDAY 28th June) please!

We have nearly 80% returned so far which is great but the higher response the more valid (and taken seriously by policy makers) the study will be, so please do complete if you are well enough. If you have not received your link from me by email yesterday, please do check your spam/junk folder as some seem to be going into spam!

We have some very interesting findings already from the coronavirus questions which we will share on the forum as soon as we can.

We will also ask the whole community their opinions on any early findings as it's important they represent as many people as possible, and we are all working together.

If anyone who didn't join the LISTEN study would like to send me any thoughts, views, feelings etc about how coronavirus, and the government's handling of it ( risk groups, lockdown etc), has impacted your medical care and/ or mental health and wellbeing (positively or negatively) then please email it to me on [e-mail]

Thank you very much and I hope everyone is as well as possible