News from Scotland

Good news.

D&G are looking to set up a ME/LC service. Consulting now with patients.

Sketchers on the ground, speaking and hopefully listening to people with experience, is a start.

 

Dumfries and Galloway?

 

Merged thread

Long Covid: NHS legal action launched by family of girl

https://www.bbc.com/news/uk-scotland-north-east-orkney-shetland-68017038

The mother of an 11-year-old Aberdeenshire girl with long Covid has launched a legal action against their health board, in what lawyers claim is the first case of its kind in Scotland.

The action alleges a number of failings by the health board.

These include claims that requests for Anna to be referred to the specialist paediatric services of immunology and neurology were refused.

It also claims no further help was offered after Anna was diagnosed with Chronic Fatigue Syndrome (CFS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).

And it says these failings "could have been avoided had NHS Grampian followed contemporary guidance on diagnosis and treatment".

"They have destroyed my family over the last four years. There is nothing more they can take from us."

Ms Goss added: "I don't want this to happen to other young people."

 

Brave family, and kudos to the lawyers who are working probono

 

ME services at 'rock bottom' in Scotland, say campaigners

"Services for people with ME are at "rock bottom" after the death of Scotland's only specialist nurse, campaigners have warned.

Myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), causes extreme tiredness.

The charity ME Action says Scotland now only has "pockets of provision" based on "outdated" models of care.

The Scottish government says it is committed to creating a more equitable service for those with ME/CFS.

The condition causes extreme tiredness and can leave sufferers bedbound for months, or even years, at a time."

https://www.bbc.co.uk/news/uk-scotland-68316097

 

Tiredness...

 

https://www.cso.scot.nhs.uk/toolkit-now-available-to-help-me-cfs-researchers/

Toolkit now available to help ME/CFS Researchers
Posted by:Julie Simpson - Posted on:May 23, 2024

Following the establishment of a UK Clinical Research Collaborative Research Working Group on ME/CFS, government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit.

thread here
https://www.s4me.info/threads/uk-me-cfs-researcher-toolkit.38715/#post-534982

 

There is apparently going to be a BBC Alba programme (in Gaelic, with English subtitles) about Long COVID on Monday (19th August) at 9 PM:

https://www.bbc.co.uk/programmes/m00226wp

 

Covid inquiry with lots of discussion of Long Covid. I think this is the CMO of Scotland.

Some "particular nuances"...

Still not prepared, or able.

In almost any other setting, when you have answers like this, loads of people are fired, management first, departments are reorganized and procedures change as a whole. Not here. Nope.

 

Scotland: Please can you contact your MSP to ask them to visit the information stand on ME/CFS?
November 5, 2024
https://meassociation.org.uk/2024/1...hem-to-visit-the-information-stand-on-me-cfs/

 

"Give us the ME care we were promised, campaigners plead" (The Times, 11 November 2024):

Link | Archive.ph | 12ft

 

80,000 Older DLA Claimants Moving to New Benefit System Early Next Year

 

Just to say that the transition from PIP to Adult Disability Payment was seamless, in case anyone is worried about this.

 

On 20 November the Scottish Government published the updated findings from a survey of 14 NHS boards on service provision for ME/CFS:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis

I haven't yet had a chance to look through it properly but at first glance it looks quite dire. In particular I'd note that the Greater Glasgow & Clyde region is offering the LP - this goes directly against the NICE guidance:

There does seem to be reasonable awareness of the NICE guideline requirements that GET should no longer be offered and that CBT should not be offered as a curative therapy (results section 5).

ETA: Link to the PDF version

 

ME Research UK:
Scottish Government Report - only 2 NHS Boards say they have a specialist ME/CFS services in place (NHS Greater Glasgow and Clyde, and NHS Lothian), 1 reported plans for a specialist service (NHS Dumfries and Galloway), and 1 NHS Board had suspended their specialist service temporarily (NHS Fife). Nine NHS Boards said they did not have plans to develop specialist services for ME/CFS in their area, and 1 NHS Board did not respond to the question (NHS Western Isles).

Read highlights of updated NHS survey - https://tinyurl.com/496yjmp6
#MECFS #HealthcareAccess #ScotlandHealthCare #SpecialistServices

 

On the BBC news last night John Swinney (First Minister) was filmed being jabbed and encouraging people "to look again at their eligibility for the Covid jab". He qualified as his wife has MS, they said.

Nice of him to show some awareness, but how about opening up eligibility. It may be like last year when in some areas the vaccination teams seemed to be actively looking for reasons to offer Covid jabs. My partner got his on account of me and so did his sister, who was temporarily living with their parents. I didn't but I'll ask when I go for my flu jab (which I've been offered every year from at least the 90s).

 

Scottish Government set to make first ME funding commitment

 

Via ME Association


NHS Scotland: Long COVID Research Symposium

"The Long COVID Network are excited to be hosting a Long COVID Research Symposium in collaborations with the Chief Scientist Office (CSO).

The theme of the event will be: “Research to Inform How Our Services Can Better Manage and Support People with Long COVID”, with the aim being to provide an update on some of the latest research relating to long COVID service provision in Scotland."

The symposium will take place on Tuesday 11th February, 12-2:15pm and will be recorded.

For details of joining and the full programme, please see the link:
https://www.nn.nhs.scot/longcovid/2025/01/28/long-covid-research-symposium/

#LongCovid #PostCovid #NHSScotland #Scotland #LongCovidScotland #MECFS #pwME