Consultation involvement

From previous threads ( particularly the paediatric NICE guidelines consultation and problems with conversation), there was interesting discussion about the ability of #pwme to participate in consultation. The existing go-to seems to be online survey, with telephone being a back up and this was discussed as having limited potential to enable people to engage.

Although consultation is also done via ME charities, these suffer from the same faults, and there does not seem to have been engagement with #pwme to properly inform how consultations and getting people on board to feed into policy/ advocacy/ campaigns can best be done to enable representation to be just that - representative.
For example, the recent Scottish Government survey re service provision for #pwme received a grand total of 420 responses ( from an estimated patient population of + 20,000)

I thought I would start a thread to let people contribute their thoughts and see if there is a combination of methods which could be taken forward as being a prototype for future usage?

if there is a better section of the website for this thread to be posted under mods feel free to relocate

thoughts?

 

Yes - my message on the

anyone-else-had-a-letter-about-a-covid-testing-study.15725/

thread seems relevant:

"I just phoned and registered, but at the end I couldn't string a sentence together or make any sense! I asked them to note my email address and also to phone after 1700 (I am going to be phoned by someone in the next 2 weeks)."

I tried to register interest via email at first, as stated in a previous message, but had to report getting the automatic response: "this email facility is specifically for the use of participants with a registered disability which may prevent them from using the telephone."

And I am fairly sure that ME isn't such a registered disability. It may be that those who have extra support do qualify.

 

I find surveys frustrating as sometimes matters are conflated or things described in a way that I can't relate to.

Telephone conversation is very tough. I have to be on the ball and that's not always predictable.

Written word is better, but I need a lot of time. Sometimes I find I just have to let stuff percolate through my mind and sleep on it for a night or two and then ideas crystallize.

I find where a meeting or telephone conversation needs to take place then exchanging notes is desirable. So they let me know what they want to discuss - specifics are good. Then I mull it over and knock up some bullet point responses. Sit on those for a day or two then send 'em. Then have the conversation - by prearranged appointment based around those bullet point responses.

As most of you can probably tell by my posts - my communication skills are not great these days. So when writing it is much easier on me to forgo the traditional format and just use bullet points. It's not stylish but it means I don't have to wrack my brains trying to figure out grammar and syntax, I can just focus on the information needed.

I appreciate that some folk are simply not able to communicate by phone at all. I think the method would still work if you had a carer who knew you well act as go between by consulting and drawing up bullet points, having the phone call & then coming back to you.

 

Trying again to post info on the survey I participated in:

https://www.s4me.info/threads/anyone-else-had-a-letter-about-a-covid-testing-study.15725/

I've had a nice reply to my email but the respondent says that I'm already registered (by phone) so she can't help, but I should be contacted in due course.

 

To me, the issue is how can we effectively represent the patient populations views when ME itself makes it difficult for many patients to take part in any consultation.

I don't believe that there is any simple solution to that - how we do things here is, in my biased opinion, a relatively good solution i.e. hold votes on anything that either isn't clear how the majority of the membership would vote or would benefit from a clear expression of support from the membership, and obviously the forum format allows for discussion on whatever the topic is. Now that works for our relatively small population, I don't think that it would scale up easily to larger numbers.

Also the issues caused by ME are going to limit the amount of engagement that is possible from the general patient population. My personal opinion is that those who are likely to be aware of the opportunity and with the time to engage will be those more seriously affected, and they will be limited in the ability to get involved. Carers might have the energy to engage, but so many will have limited time available to them if they are still working and caring at the same time.

So all this means that you get what we have at the moment - relatively few people willing AND able to engage in any representation effort. What the solution is, if there is one, I'm not sure, but at the very least we could do with a register of people who are willing and able to get involved in particular projects, it wouldn't solve the issue of getting the wider patient population engaged but it would be a step in that direction.

 

Slightly off-topic, but it might be worth saying that this is a fallacy that's been hanging around for decades in organisations that can't be bothered to check. There is no national registration scheme for disabled people. There is a register for blind people, and a few local authorities operate voluntary registers for certain conditions, but only for planning purposes.

The Equality Act 2010 states that you're disabled if you have a physical or mental condition which has a substantial and long-term negative effect on your ability to do daily activities. That's all you need to quote at anyone who tried to block access to alternative forms of communication on meaningless grounds. (Unless you're in the mood to be awkward, in which case ask them to check whether you're named on the register...I once got British Gas to waste an entire afternoon trying to find it. )

 

Yes this was what I was alluding to . There were suggestions on the other threads re how participation could be made easier for all , and why telephone etc is an issue too.

It simply seems that cognitive issues are not recognized enough , the varying types of disabilities not explored enough. There could be simple changes that would improve engagement rates and representation.

Many other conditions have share some of ME' s smorgasbord of symptoms - how do these conditions address it?

From the thread simple things like
Don't use surveys which can't be saved in part and enable completion over multiple visits.

Facilitation of more written and also recorded responses which can be done over time . Acknowledges txt to speech and speech to txt.

Recognition that telephone usage may be limited and tailoring its use ( multiple calls spaced out / format of discussion that does not involve long descriptive responses ....)

This was something I had not fully considered until involvement in the Educate ME project . Parents looked at the surveymonkey questions and we tried to make them short with simple responses . There was an expanded " explain" type of question at the end .

My daughter really struggled without help.
ETA taken my conclusion out of quote

So this thread seeks info from those more severely impacted , asking what formats, interactions etc could be made to accommodate responses.

If we have an idea of what could work then this could be factored in from the start.
Has noone asked this before ?


From previously highlighted thread on NICE guidelines consultation for paediatric input.

 

As far as I know, no, it hasn't been asked. At least not of our community.

I think this is because it is only fairly recently that there is an acknowledgement of the depth and breadth of cognitive dysfunction. For at least the first 1½ decades of my illness I had to fight against not only being described as "fatigued" but also as suffering from "concentration & memory problems". There was simply no awareness the the issue is a far more fundamental processing problem.

In the case of the ME community, any aides be it a wheelchair or adapting to take into account our cognitive difficulties, are still seen by many as doing us no favours. That it is pandering to our abnormal beliefs and reinforcing our "special" role as a patient.

I also believe that there is still a philosophy throughout medicine and social care that the "professionals " are best placed to make informed choices about provision for those with both physical and/or psych disability. This infantilization of the disabled adds a whole new layer of discrimination & disables people further.

Healthcare professionals & social care professionals need to learn that while they have a lot of knowledge their qualifications do not somehow magically convey any knowledge of the lived experience of the people they deal with.

 

Regarding written communication, surveys and the like -

Choice of font, text indentation, line spacing, use of colour can make a document easy to interpret or render it incomprehensible.

When drawing up a survey or questionnaire then allowing members of the target audience input in layout can make all the difference.

I'm put in mind of Lenny Jason's team. Their questionnaire on PEM - while very worthwhile and the best of it's kind, the layout was extremely difficult for many of us, it was difficult to go back and review questions. The very repetitive nature of it meant it was easy to get confused as to which question you were answering and so on.

Also, for online questionnaires, surveys and documents having multiple colour themes (where appropriate) might also prove more inclusive. Like the colour themes here on the forum. If you look at the bottom bar on the left side it says "Default Style", "Dark Theme", "Darker Theme" or "S4ME Theme" - some of them look very different to each other.

 

Thank you @Invisible Woman .

Given that the PSP will probably involve questionnaire(s) it would be good to get feedback to enable things to be highlighted from the onset rather than try and tweak things later .

@Simbindi had some good comments on other threads which highlighted how inaccessible much ME engagement can be compared to other conditions.