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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."
 
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SNT Gatchaman said:
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."
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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
 
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
 
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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:
Four years after the UK went into lockdown due to the global COVID 19 pandemic, BBC ALBA explores the long-lasting impact of the virus experienced by people across Scotland in a brand new Trusadh documentary, Fo Sgàil Covid/Covid’s Long Shadow.
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https://www.bbc.co.uk/programmes/m00226wp
 
Covid inquiry with lots of discussion of Long Covid. I think this is the CMO of Scotland.
https://twitter.com/user/status/1838923079273107738
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25/09/24 - Mod 3
@covidinquiryuk
CMO Prof Sir Gregor Smith - Four Harms Framework.
"Do I summarise the first harm correctly as being direct harm to people's health which in this document was measured by reference to the number of hospitalisations, ICU admissions & deaths?"
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Discussion of #SARSCoV2 routes of transmission and WHO communications that #COVID19 was not airborne. "I remember seeing this when it came out and I felt at that time it was perhaps unhelpful to state so unequivocally."
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Discussion on applying the precautionary principle. Q: "Why are you looking for evidence of a significant contribution to transmission before you start considering other measures that might be sensible and in accordance with the precautionary principle?"
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On #LongCovid. "None of that should really surprise us because many viral diseases have that type of impact but there seem to be some particular nuances in the way that the people were experiencing this that may be unique to Covid itself"
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Some "particular nuances"...
Q: Was any anticipatory work done before reports of long-term symptoms in Scotland? A: I'm not aware of any anticipatory work that was done on this.
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July 2020 was the first time that #LongCovid was brought to the attention of the CMO. Was any advice given to the Scottish Government on Long Covid other than to implement the SIGN guidelines and it's implementation note? Prevention? Mitigations? #LongCovid #LongCovidKids
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"The main advice was... first of all to understand what was meant by the term Long Covid... to develop the evidence base for this which might then inform some sort of a more cohesive longer term approach."
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Q: Were Long Covid Services improved after central funding was introduced? A: I can't give you an answer to that... I've never seen data which shows whether there were material improvements from people's perspective in relation to the care that they felt with this.
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Q: Was Scotland prepared to deal with Long Covid? A: No, we weren't prepared at that early stage of the pandemic to deal with Long Covid.
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Still not prepared, or able.
Q: So having recognised as a possibility [of long-term sequalae] was anything done other than recording the recognition? A: It was really keeping alive to the fact and watching for the evidence arising.
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Sarah Hannett KC
Q: Do you accept that the variation in #LongCovid services within meant that very many patients had difficulty in accessing suitable care?
A: Yes I do accept that many patients had problems accessing the care that we would've wanted to be able to provide.
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#SARSCoV2 is a "high volume infectious disease." "We will continue to see a high volume of cases as a consequence of #Covid with all the sequalae whether that be #LongCovid or whatever, as a consequence of that."
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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.

1520166934947
 
In the spring of 2025, Social Security Scotland will take over the administration of Disability Living Allowance (DLA) for adults in Scotland from the Department for Work and Pensions (DWP). The new benefit is called Scottish Adult Disability Living Allowance or (SADLA).

Who is Eligible For Scottish Adult DLA?
Scottish Adult DLA will only be available to adults over aged 18 who are already receiving DLA payments from the DWP and live in Scotland. This benefit will be closed to new applications, only people still receiving it will be able to.

The transition to Scottish Adult DLA will come in gradually, and people will not need to claim or re-qualify. Social Security Scotland will contact every person in stages and tell them when they will be moving to the new system.
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80,000 Older DLA Claimants Moving to New Benefit System Early Next Year
 
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:
Their updated response noted that a 12-month pilot intervention to improve outcomes for people experiencing ME/CFS or long COVID (‘The Lightning Process’) had been extended to 50 patients in 2023-24.
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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
 
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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

https://twitter.com/user/status/1859673291285266673
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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).
 
CAMPAIGNERS have welcomed the end of a 22 year wait for action as the Scottish Government is set to make its first ever funding commitment for ME.

The Scottish Government’s budget for 2025-2026 has outlined an “additional £4.5m funding to deliver new specialist support across the country for new services for Long Covid, ME, Chronic Fatigue and other similar conditions”.

The revelation of the pledge – which was overshadowed by other announcements made in the Budget – has come after a long battle by the ME (myalgic encephalomyelitis) community to press for change, since the chief medical officer published a report in 2002 recommending the development of services for people with ME.

The ??campaign for support for people with ME in Scotland has gathered pace since Covid-19, with evidence suggesting that around 50% of people with Long Covid have ME.

A conservative estimate is that the number of people with ME has increased at least threefold since Covid, to an estimated 58,000 people.

#MEAction Scotland, a volunteer-led group that has been campaigning for services and support for people with ME since 2017, welcomed the news.

Janet Sylvester, spokesperson for #MEAction Scotland said: “This is a landmark day for our charity – and for the thousands of people who live with ME.

“After years of campaigning and lobbying for change, the Scottish Government has finally included funding for ME services.

“People with ME have a huge struggle to get the support they need, often facing stigma and disbelief from health professionals who hold outdated views on ME.

“There is only one specialist service in Scotland and no ME consultants or specialist nurses.”

The news comes just two weeks after the publication of an updated Health Board survey report on ME service in Scotland.

Based on findings from all 14 NHS boards, the report covers current service provision for ME and the extent to which Boards are implementing the 2021 NICE (National Institute for Health and Care Excellece) guideline on ME/CFS.

The report confirmed that there is only one specialist service for the 58,000 people with ME in Scotland.

Whilst the Boards said they were willing to develop support, they highlighted the challenges posed by “resource constraints, outdated views on ME/CFS and coping with legacy waiting lists.”

It is nearly three years since the Scottish Government committed to implementing the 2021 NICE guideline on ME/CFS.

Despite this commitment, the health board survey highlights that, although Health boards are aware of the new guideline, there are significant barriers to its implementation.

Janet said #MEAction Scotland believes it is critical that funding should only be given to services that commit to implementing the NICE guideline recommendations.

She added: “ME patients in Scotland are continuing to be treated according to an outdated model of ME.

“Until the latest NICE guideline is effectively implemented, they will continue to be offered treatments that are no longer recommended and are potentially harmful.

“We urge the Scottish Government to fulfill its commitment to implement the NICE guideline urgently in order to prevent further harm to patients.”
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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



 
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