Scottish Health Council:Gathering public experience of Myalgic Encephalomyelitis (ME) survey: Feb 2020

I just came across this survey but I can't see when it's from or how it came about.

see tweet in Andys post below

https://www.smartsurvey.co.uk/s/myalgicencephalomyelitissurvey

anyone know anything about it?

@chicaguapa

eta: who's the rep for #MEaction Scotland here?

 

Live in Scotland but this is the first time I've heard of it.

There was a Public Petitions Committee meeting just before Christmas. The MSP chair told the Chief Medical Officer that the current situation was untenable and that she wanted answers. Particularly about NICE/PACE. CMO seemed in agreement. This might be the motive for this survey.

On the negative side I saw that a clinic is being planned for Edinburgh Borders area. Based with Neurology, it is run by psychologists and physios!

http://www.sense.moonfruit.com/me-cfs/4585077142

There is a video of the committee meeting at Holyrood. Catherine Calderwood v's Joanne Lamont.

A submission from NHS Lothian.

http://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2019/PE1690_LL.pdf

 

Code:

https://twitter.com/NAHSCP/status/1227204935844016129

https://twitter.com/user/status/1227204935844016129

 

Here are the questions:

The survey seems a bit naive about the current situation, seems to assume that there is currently health care and support available rather than systemic discrimination and widespread rejection that this is medically relevant at all. Hopefully there are enough answers to dispell that.

(Side note: the survey appears to support saving and returning later, might want to test it first, though, in case of bugs)

 

It is a bit of a joke. There is literally no provision .

There is a separate query related to children transitioning which is a huge issue as you are pushed to find an adult discipline who wants to take on responsibility.

We suggested 3 disciplines, 2 of which didn't want to know. The third is willing to refer on but knows little and is not prepared to learn.

 

ETA my understanding that Tymes are not participating in this. They usually suss out con flicts of interest at an early stage.

Action for ME are submitting responses .

 

I have messaged a contact from MEAction Scotland. Will report back if I hear anything.
(I believe EMsho is on a few months break)

ETA Cross posted with Amw66 above

 

I started the survey but couldn't finish. Most answers require 'none'. Why ask who should be involved in my care and support. They should be telling me. I have repeatedly asked for a referral to a nutritionalist.
Carbohydrates really cause me problems. GP flatly refuses.

Relationship with my GP totally dysfunctional. Someone made a cryptic remark to me last week. He suggested that my GP is embarrassed that he can't do anything for me.

 

Questions are probably a pro forma from other conditions cut and pasted for ME.

It would be interesting to compare results from other neurological conditions.
Perhaps a penny drop moment to come ( but not holding my breath)

 

I filled it out. I think when they asked about "What health care and support (for ME) has made a difference to the quality of your life?" that they were meaning in the positive sense, but to be honest, other than my current gp who is fantastic, most of the other health care workers have made a huge difference to the quality of my life, only in a negative way. So i used it to tell them of the negative difference to the quality of my life as well as the good. Probably not what they were looking for but it felt good to type it out and to be heard in a way.

 

I think this refers to the same one:

Source: Action for ME

Date: February 14, 2020

URL:
https://www.actionforme.org.uk/news/scottish-health-council-survey-of-me-in-scotland/

Scottish Health Council survey of M.E. in Scotland
---------------------------------------------------

The Scottish Health Council (SHC) has launched a survey to gather the views and lived experience of people with M.E./CFS in Scotland.

https://www.smartsurvey.co.uk/s/myalgicencephalomyelitissurvey

The survey was commissioned in response to questions raised by a petition to the Scottish Government and the feedback from the M.E. community about the draft neurological framework.

https://www.parliament.scot/GettingInvolved/Petitions/PE01690

https://www.actionforme.org.uk/news/scottish-government-launches-national-action-plan/

The focus on this survey is what good care and support should look like.

While the SHC will not make recommendations, they will summarise their findings which will then be reviewed by a working group to consider the next steps. Download the SHC's information sheet to find out more.

https://www.actionforme.org.uk/uploads/images/2020/02/SHC-information-sheet-mecfs-survey-2020.docx

To take part in the survey you must be over 18, live in Scotland and have personal experience of M.E./CFS. Questions cover:

* health and social care support that makes, or would make, a difference to your life
* health and social care professionals that are, or you would like to see, involved in your care

* how health and social care for other conditions or illness you live meets, or could meet, your needs relating to M.E.

This is a survey for individuals so, while we are not submitting an organisational response, we encourage people with M.E./CFS across Scotland to take part. Our team in Scotland are attending SHC events in a supportive capacity, and helping to promote the survey among our networks. Theresa Burns, our Project Co-ordinator in Scotland, says:

'It is so important that the Scottish Government hear from as many people with M.E. as possible to ensure they understand the range and details of the issues they are facing.

We will be assisting local officers to reach people in different areas, so please get in touch if you want to know what is happening in your local area or if you need any assistance to engage.'

Beverley Collins, Local Officer, Healthcare Improvement Scotland, told us: 'Surveys can also be sent out by post, telephone or face to face interviews can be made available too upon request.' For further information, please contact the local office, Scottish Health Council Fife, fife@scottishhealthcouncil.org

The survey closes at 5pm, Tuesday 24 March.

 

This from the ME Association:

Source: ME Association

Date: February 14, 2020

Author: Ewan Dale

URL:
https://www.meassociation.org.uk/20...hould-look-like-in-scotland-14-february-2020/

What do you think good healthcare for M.E. should look like in Scotland?
----------------------------------------------------------

The Scottish Health Council (SHC), which is part of Healthcare Improvement Scotland, has been commissioned by the Scottish Government to conduct a lived experience survey of people living with Myalgic Encephalomyelitis (ME). All adults living with ME in Scotland are invited to take part in this survey.

NB

*The survey is aimed at adults but SHC does note that if you are a young person transitioning from children's services to adult services, you can take part. Unfortunately, children with ME are not included at this stage.

 

just completed this and made it clear the current situation is abysmal. Also suggested they stop referring to Jon Stone for advice when he only has one agenda and a very closed mind!

 

Whilst asking for our input into the care, or lack of, in Scotland, this is under construction!

http://www.sense.moonfruit.com/me-cfs/4585077142

 

You couldn't make this up

 

The link above ME-CFS, Functional symptoms.

However, very few people are familiar with functional symptoms and these symptoms can be difficult for many patient's and clinicians to understand. One way of explaining functional symptoms is to think of the body as a computer, with functional systems being like a software problem - the way the system is operating, as opposed to a hardware problem.

then the link from there explaining Functional symptoms

https://www.neurosymptoms.org/

Disgusting, during a consultation into the very issues we face, they're full steam ahead with their plans for the next five years.

 

This is the Jon Stone explanation.

 

I see he's featuring on TV tonight. Hospital at 9, BBC2.

FND - 1 hour documentary ‘Hospital’ on
@BBCTwo
Tomorrow 9pm!Hospital features three of my courageous patients sharing their experience of living with Functional Neurological Disorder. #fNDHope