Maeve Boothby O'Neill - articles about her life, death and inquest

[Nightsong]

Letter in the Times.

https://www.thetimes.com/article/times-letters-atheist-age-ushers-in-era-of-anything-goes-vhfj3wq97

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Sir, I strongly support Sean O’Neill’s Thunderer on the tragic loss of his daughter, Maeve, to myalgic encephalomyelitis (ME) and the systemic neglect of this debilitating illness (“Streeting must act to give ME patients the care they need ”, Oct 9). For too long people with ME have been left behind. Two years ago I launched the first cross-government strategy on ME but the final version remains unpublished by the government.

The coroner’s report highlights a lack of research, medical training and care provision. The government must act urgently. There are hundreds of thousands of people affected by ME, many of whom are left without proper treatment and support. Wes Streeting and Andrew Gwynne now have the power to introduce the strategy and give this neglected community hope. Maeve’s death must not be in vain. It is time for decisive action to ensure that no more lives are lost.

Sir Sajid Javid
Former health secretary

 

[Jonathan Edwards]

Sajid Javid is on message but I am unclear what this strategy is going to achieve.
The Working Groups included nothing about care for the very severe as far as I remember.

 

[MEMarge]

Sajid Javid is on message but I am unclear what this strategy is going to achieve.
The Working Groups included nothing about care for the very severe as far as I remember.

People who know about s/vs ME (such as 25%) were involved in the working group and workshops for the Living with ME stream, and submitted very relevant material.
Have no idea what the final plan will include.

 

[Jonathan Edwards]

Have no idea what the final plan will include.

Thanks.
If we on the working groups have no idea, things don't seem to look too promising.

I feel as if a huge team of people with all sorts of skills has been brought together to dig for buried treasure but since nobody had a map they may have dug a hole in the wrong place.

 

[Kitty]

I feel as if a huge team of people with all sorts of skills has been brought together to dig for buried treasure but since nobody had a map they may have dug a hole in the wrong place.

I think that basically is the map for government-driven initiatives.

They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.

 

[Haveyoutriedyoga]

I think that basically is the map for government-driven initiatives.

They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.

And it will actually last, and spread

 

[Haveyoutriedyoga]

I think that basically is the map for government-driven initiatives.

They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.

Perhaps the NHSE ‘nudge’ unit (whatever it’s called) should focus on nudging their staff more than the public. Or maybe they do and we just don’t hear about it! It’s a mysterious entity.

 

[MrMagoo]

Dear god at the end of the Sky interview Sarah looked like she might cry, I hope she’s doing ok with all this media work.

 

[Ash]

Dear god at the end of the Sky interview Sarah looked like she might cry, I hope she’s doing ok with all this media work.

How Sarah has not broken down weeping multiple times over is……

The frustration that even now after a public inquiry into all the awful details of fatal harm there is no movement towards prevention of harm across NHS services is adding trauma on to trauma.

 

[MrMagoo]

How Sarah has not broken down weeping multiple times over is……

The frustration that even now after a public inquiry into all the awful details of fatal harm there is no movement towards prevention of harm across NHS services is adding trauma on to trauma.

I’m sure she has, just not on camera.

 

[Ash]

I’m sure she has, just not on camera.

Yes for sure. I was thinking of this time on camera where she has repeatedly spoken about horrific and heartbreaking events. Somehow got the words that must be said out.

 

[Suffolkres]

Thanks.
If we on the working groups have no idea, things don't seem to look too promising.

I feel as if a huge team of people with all sorts of skills has been brought together to dig for buried treasure but since nobody had a map they may have dug a hole in the wrong place.

Love this analogy Jonathan!

Also, gardening and plant therapy recovery, seem order of day in the media.

I would suggest the lead DoH civil servant was unwittingly made to lead us involved in the Delivery initiative....

up the garden path, without a paddle..... thus us winding up on Shit Creek....?
She in turn was 'caste off' after the events elsewhere........

She was too well meaning and empathetic to survive the journey to Delivery...

As for the actual process, and those wretched Miro Boards.......

The whole exercise was a severe testing of patience and resolve.

The plan won't tell us anything new or offer anything meaningful as the key to the coffers is NHS England, who didn't want to play ball...

 

[Maat]

I've just popped in from a six month absence due to severe PEM to let you all know that I have written to my MP. Wasn't sure where to post it, as it covers the missing report summarising the responses from the My Reality consultation a year ago, the Coroner's Regulation 28 Prevention of future deaths report and questions to be raised on my behalf to the Secretary of State for Health in the House of Commons. So I decided to post it in this thread out of respect for Maeve Boothby-O'Neill.

Here is the content of my letter to my MP mailed this evening:

For an update on this please go to UK: Official Complaint Lodged with the DHSC re: Discrimination in the ME/CFS Delivery Plan Process | Science for ME (s4me.info)

 

[Nightsong]

Pretty good article in the Herald, & a letter in the Independent:

 

[Binkie4]

I thought I read somewhere that Karen Gordon's story is to be covered in the Times today but I've looked through the print copy and cannot find it.
Anyone seen it?

 

[Lou B Lou]

I thought I read somewhere that Karen Gordon's story is to be covered in the Times today but I've looked through the print copy and cannot find it.
Anyone seen it?

Apparently it will be in the Times on Monday the 14th

 

[rvallee]

Pretty good article in the Herald, & a letter in the Independent:

View attachment 23738 View attachment 23739

Actually, less hoping and more doing. Hope becomes poisonous with time. There's been more than enough time for it to become completely toxic.

 

[Hutan]

Posts on the UK Delivery Plan have been moved to
UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

 

[Nightsong]

"I'm too tired to chew food but still can't get care for my ME" (BBC):

https://www.bbc.com/news/articles/cn03pxk1g4xo

 

[Hutan]

That's a helpful article, I think.
BBC health reporters: Philippa Roxby and Smitha Mundasad

Some useful comments from Baroness Finlay; DecodeME was mentioned, with a comment from Chris Ponting. Thanks to the people with ME/CFS who fronted up.