UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Are they using the FUNCAP questionnaires? Because they’re quite good, validated and already exist

 

I just did mine that’s what made me think. The options for reply are really”ME/CFS”.

 

I cannot see that an apology has been received, or have I missed it?

If a public apology has not been received, I'm adding the comments of Sarah Tyson @Robert 1973 refers to, and this thread, as additional evidence in the part of the cause of action referencing historical and ongoing 'reputational damage' to the patient group with ME, CFS, CFS/ME and ME/CFS - Article 10 Human Rights Act 1998. This is only one element of the causes of action in the accumulated evidence upon which I'm taking specialist legal advice. Every time, I have to re-read it, it has the same impact on me.

ETA:

 

The following extracts from the FAQ re a mental health PROM are not at all reassuring. Too many concerning statements to highlight.

"How I feel and my heath changes all the time, how can I complete the questionnaire?
We know how you feel can change on a day-to-day basis. How you feel now may be very different from how you felt yesterday or how you will feel in a few hours’ time, especially if you take medications to support your health and wellbeing.

The questionnaires are meant to give us a snapshot of your health. We know they give us a very limited view of how you have been feeling recently, but it’s important that you complete them thinking about how you feel at the time."

How will the results be reported back to me and my healthcare worker?
Once you submit your questionnaire you won’t be able to save it or print it, however your responses will be immediately available to your healthcare worker.

You can ask for feedback during your appointment; although feedback will be dependent on staff accessing the information, and this may not always be possible depending on where your appointment is.

If your appointment is at a clinic, your healthcare worker will probably be able to share your answers with you and compare this with previous answers you may have given. They will also be able to talk to you about what this means.

How are the questionnaires going to be used?
Your responses will be used to help us understand the problems you are having, find out more about your health and wellbeing and quality of life, and to monitor changes in these.
The responses can help you and your healthcare team make an informed decision about what treatment is most suitable for your condition, needs and circumstances.

By filling in your answers at the beginning of your care you can get a really good idea of where you are starting from. Filling in your answers again at a later date, either during or at the end of your treatment, can be a useful record of where you are making progress and how well your treatment is working for you. Any positive change is an achievement and can give you confidence in managing your health and wellbeing. We don’t always expect to see constant improvements, as we know there are many things that can impact on a person’s health and wellbeing e.g. life events. If there isn’t a lot of change, or your ratings get lower, we might use this as a starting point to discuss making some changes to your treatment.

Whatever happens, completing PROMs over a period of time helps to build up a picture of your care. This can highlight areas that are meaningful and important to you and can be a very useful tool to help you understand the parts of your life where you need the most help, and how well the help you are getting is working.

there are many things that can impact on a person’s health and wellbeing e.g. life events. If there isn’t a lot of change, or your ratings get lower, we might use this as a starting point to discuss making some changes to your treatment.

Whatever happens, completing PROMs over a period of time helps to build up a picture of your care. This can highlight areas that are meaningful and important to you and can be a very useful tool to help you understand the parts of your life where you need the most help, and how well the help you are getting is working.

https://www.southwestyorkshire.nhs....sures-proms/proms-frequently-asked-questions/

ETA to bold the heading so people know where it's from

 

why would it not be possible to download a .pdf? That is how I would expect this to work; it is widely used elsewhere.

Why can't patients have a copy for their own reference and monitoring?

so patients are expected to complete these epic questionnaires as the basis for an appointment and the discussions therein, but staff might not have access to the questionnaires

I could be catastrophising here, but I see a serious discrepancy in this proposal.

 

I did the HOPE for Long Covid course, on an app on my phone and they had a couple of weeks or so on figuring out what matters most to you, with fun videos and helpful prompts. I now have a list on an index card, super helpful. Surely, given this already exists and is a self paced, easily accessible NHS supported course this would be more helpful here?

Surely this is a tick list? Pain, fatigue, sleep, PoTS, social care, mental health support, brain fog, breathlessness etc.

As a person very prone to overthinking and over analysing everything and passionate about spreadsheets and lists, this feels overcomplicated and unnecessarily opaque and fails to see the wood for the trees.

Am I missing something? Are they planning to use some sort of statistical analysis on the data that it needs such a standardised format for answers? I think this is in danger of trying to fit square pegs in round holes and missing valuable and very relevant details - measuring ME in this standardised way feels too much like trying to knit fog.

 

I said I wanted to do some reading and I have not done it (yet!) but one theme I wanted to revisit is that of the “PROMS creates a data set which can be used in research” I feel like that it was said it wouldn’t/was silent, then it has been said. Over the course of the MEA announcements and Sarah Tyson’s posts here, it’s been inconsistent.

Further to that, how and why the HECK you’d use the rubbish out of this debacle as a data set (rubbish in=rubbish out)

and why aren’t they using FUNCAP
And why are they trying to create their own less useful version of FUNCAP

This has all the preparation, training and forethought of a task on “The Apprentice” - none. Like someone trying to do an approximation of creating a toolkit.

 

Thanks @Trish and noted.

 

I just saw the profile for Sarah Tyson on the BACME conference thread. A bit surprised she’s involved with Physios For ME as a “lay representative” as well as DoHSC plan for ME
(See just above bullet points)

 

Ditto to the comments regarding the inability to print off any completed questionnaires. No guarantee that clinic HCP will be able to access them - what's the point?

These form part of your healthcare records and must be accessible to the patient.

I've just completed the FUNCAP for the first time. Prior to completing it, with a total of 16 years experience of this illness at all levels, with the last 12 at the severe end of this illness, I would asseess my level of ME/CFS as severe bordering on very severe.

It took me over an hour to complete the 55 questions. The results confirmed what my experience as an expert patient in this illness already told me, that I'm severe/very severe. I've saved it as a pdf and will be emailing it to my carer, and printing off a copy for my medical file for her to reference for others. All in all, a very useful and more importantly, accurate questionnaire tool for the patient's benefit.

 

Yes South Yorks mental health has earned a place on my DNA (do NOT attend).

FUNCAP is lovely to fill in, 0-5 answer levels stay displayed at the top of the page. Other NHS PROMS use an app, it’s 2024! Instead I fear PROMS will be printed out and filled in by hand…everything about it feels outdated.

Today, or this week but I didn’t read it until today, Visible launched the option of guided breathing. I tried it out and my heart rate slowed down nicely. I went into the “resting” HR zone which always eludes me.
It’s got a built-in daily reminder to do it, which I will. Apps. The future.

 

I'm not supporting these PROMS, but just to say FWIW that i loathe filling in questionnaires online, i find it much more difficult and taxing than doing it on paper.
I detest my smart phone, and apps and the modern obsession to do everything through a f'ing APP!
AGGHH!! its all a lot harder for me, i'd much sooner a print out and that includes the FUNCAP. I also cant get on with white text on black background which everyone seems to think is sooo much easier, it isnt easier for all of us it hurts my eyes so much.

 

I believe its called networking you know making contacts that look really good on a cv to benefit ones career . to many people are promoted to positions based on who they know .

 

I agree- white text on dark kills my eyes!
Anything on an app should of course also be easily available in other formats like paper. Bit harder to print out an app version of a paper only questionnaire.