Examining the impact of the COVID-19 pandemic on people with MND

[Admin_MND]

Researchers at the University of Sheffield, UCL, King’s College London, UEA and the University of Liverpool are interested in the experiences of people with motor neuron disease (MND) during the COVID-19 pandemic.

They would like to know how people with MND have been affected by the pandemic, and whether this has had any impact on their MND health and social care (such as hospital appointments and access to services and care). If you are aged 18 years and over, you have a diagnosis of MND, and you live in England, Ireland, Scotland or Wales then we would really like to hear from you.

If you decide to take part in the study, you will be invited to complete an online survey that should take approximately 30 minutes to complete. The online survey includes a series of questions about the COVID-19 pandemic and your MND health and social care. You will also be asked some questions about your MND symptoms.

To find out more and to take part, please visit: www.mndassociation.org/research/impact-of-covid-19-survey.

[Barry52]

I think the results of this survey would show yes, yes and yes or is this just the cynical view. What would they do with the data because I don’t see services improving?

Barry

[Shaun]

Barry, they will spend time reviewing the stats, tweaking the answers and responses to get the decision they want which will be everything is all okay and then issue a report that nobody will read and put a big fat cheque in their bank account, that’s my cynical view
S

[matthew55]

Truth is not cynical 😉

[Admin_MND]

Morning all,

Thank you for your feedback.

Please see a response from Dr Rebecca Gould (UCL), researcher on the study below:

"We hope that we will be able to use the data to inform MND health and social care services about how they can best meet the needs of people with MND in the current COVID-19 context. Based on anecdotal reports, we're concerned that everything is not OK with service provision at the moment - that's what has prompted us to devise this survey. We need evidence of this before we can develop recommendations and take them to the service providers.

We hope that services would read our report and act on this accordingly - of course, we can't force them to do this, but we can at least raise awareness and provide recommendations based on people's experiences. We have received no funding for this study and have developed this survey simply because we are genuinely interested in hearing about the experiences of people with MND in these highly unusual and difficult times."

Many thanks,

Forum Admin

[matthew55]

One word IGNORED

[Doug Carpenter]

"....they will spend time reviewing the stats, tweaking the answers and responses to get the decision they want which will be everything is all okay and then issue a report that nobody will read and put a big fat cheque in their bank account, that’s my cynical view"

"We have received no funding for this study and have developed this survey simply because we are genuinely interested in hearing about the experiences of people with MND in these highly unusual and difficult times."

Rebecca Gould runs the COMMEND study. She is trying to help us.

Doug

[Barry52]

Hi Doug,

I’m aware that Rebecca runs the Commend study and I fully support this but realistically, do you have any confidence that the findings of UCL and the other university hospitals supporting this new survey will result in any positive action from the health professionals who have more pressing issues to deal with? As there is no funding for this study I would rather Rebecca and her team focus on the current trials. I am generally all in favour of surveys that will result in change for the better and I have completed many over the years, however I think this one is a waste of resources.

Everyone knows how Covid is affecting health care, whether you have MND, cancer or many of the other life changing conditions. The mental wellbeing is probably of greatest issue to our community. You may sum up my view on this with one word “apathy”.

Barry

[Shaun]

Hello Doug, i think will we have to disagree on this one, when lockdown was introduced, hospitals, GP’s and other health and care facilities shut their doors to anyone who didn’t have Covid 19.
It effected everyone with a health condition from the very serious ill to routine care.
It’s only recently, last week, in fact that my GP called to see how I was, my first contact since March and to remind me that I had not had routine bloods done, it’s a bit difficult if they won’t see anyone.
So I hope you understand why we are quite cynical about this and what it will achieve as everybody knows, including the health service themselves that they have let everybody down. But they will only come back with ‘it was an unprecedented period and sacrifices had to be made to save millions of lives.’
I understand that, and accept it, but what good would it do reporting on what they already know, it’s in the past now. We should be looking forward, as Barry states there are more pressing issues, I would suggest time would be better spent pushing to get clinics open.
On a positive note our local hospice still provided help for some of the seriously effected members of our community and the pharmacies stayed open. Pity GP’s didn’t have the same attitude.
shaun