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

Yes, it is refreshing to have the press listen to reality as provided by the people we know, without interference from unwanted voices. I guess the unwanted voices realise they have nothing to say, nothing to contribute to care.

I have been talking with Sonya and Charles over the last few days about the ways we are all talking about this, including with Ilora and others, and trying to work out what we really need to say we want in order to get something to happen. I wouldn't criticise the journalism here but I worry that unless advocates are more specific in their sound bites everything will slide back under the carpet.

The article quotes the DHSC Delivery Plan:
The Department of Health and Social Care says it is committed to improving the care and support for all those affected, and intends to publish a plan this winter to boost research funding and improve attitudes and the lives of people with ME.

Each time I read the interim report I reach the same conclusion. What is going to be done to improve care? Nothing. There is no 'plan' to boost research funding as far as I know. What may happen is that as people move around obstacles are removed. I do think things will improve, but only because current provision may be used more sensibly. How do you improve attitudes? Not with half-baked educational material for sure. How are lives actually going to be improved. No idea. Nothing specific is being proposed, at least that I have seen mentioned so far.

If the DHSC have no idea what to do they need telling in specifics. In that vein, what are the missed opportunities in what is being asked for?
/Break to another post.

 

Going through the article, these things worry me:

Someone has told the journalist: It's a complex, long-term condition which can impact every part of the body and is difficult to diagnose. ME affects everyone differently and its causes are still being investigated.

Why try to give an account without any real basis if you are just trying to persuade sceptical doctors that ME/CFS is a disabling state that we need an answer to. Attitudes will not change. The doctors will nod: 'yeah, heard that one before'. As I keep banging on about, the word ME doesn't exist in current medical language. ME/CFS does. It is a different concept. There is some chance sceptical doctors will take it seriously. I know because I was one of them.

Interestingly, I listened to Alastair Miller's 2015 YouTube presentation on ME/CFS yesterday and I thought his analysis of what ME/CFS means was exactly right - a syndrome unlike other fatigue. He goes wrong on causes and management but he had listened to what people say.

The ME Association is calling for an audit to see how much of the NHS is providing the recommended care, as set out in guidance from the National Institute for Care and Healthcare Excellence (NICE).

I think this is a good initiative but what does the NICE Guideline actually recommend? It is all very woolly. Sure, you can show that a region has no service provision but what about the regions providing 'specialist teams' that are no more than pockets of therapists with a GP somewhere on the phone? NICE moved in the right direction but if you are wanting a bulldog with teeth to defend standards, NG206 is not it.

Their guidelines say that adults with ME should be referred to a specialist team so that a care and support plan can be developed.

That is more specific, but is it specific enough?

It could mean refer to specialists who develop and administer long term support and care or it could mean a few quick sessions to write a care plan and back to the GP, who files it away.

Again, I noted Miller talking of specialist Secondary care specifically implying a physician in a hospital setting seeing people with ME/CFS and taking their long term care seriously. We had this. It worked. We need it back. The care needs updating but the system was valid.

More later.

 

Ilora Finlay is quoted:
there is some support for people but it's "very patchy".

"And the difficulty is that GPs may well not know what's available - they are also inundated with work and need to know about all conditions."

She said it's a challenge to cater for all the health needs of a local population.

Some people find it difficult to travel, making it hard to have a specialist centre in a central location.

Baroness Finlay acknowledged it is difficult for people with severe ME to spend time on hospital wards because they are "not calm, peaceful places".

"It is complex - you've got clinicians who are on their knees already. And the NHS estate is in a poor condition.

"You have to make the best of what you've got."

This is all very fair - except the last bit surely. Making the best of what you've got is not a brand new Delivery Plan for ME/CFS. She lays out all the difficulties that we face in devising a solution but at some point we need to decide what solution best solves these. As far as I can see we need a hospital based physician plus nurse/OT service that has major domiciliary resources - which is exactly what I had in the 1980s. I could go and see patients as a consultant anywhere in my area. The OT would routinely do the same.

 

Some areas now have community geriatricians which is maybe why Helmsley suggested geriatric specialty.

 

Charities say doctors' minds are slowly being changed to recognise that ME is a genuine medical condition, but there's still a long way to go.

Again, I see this as off key. Doctors' minds aren't being changed much and you will never change them to think 'ME is a genuine medical condition' because that isn't the way to look at it. What you can make them realise is that there are 150,000+ people with a particular sort of disabling state who desperately need a solution, in some cases to keep them alive. That is the realisation that led to me being here.

"Medical training is lacking," says Sonya Chowdhury"

Yes, but the training needs to focus on facts and realities. These people need help... That's all.

During the course of the inquest into Maeve's death the coroner said it became clear that there was extremely limited training for doctors on ME.

And there never will be because we are now talking about ME/CFS. ME was something else.

There's no cure for ME, though some treatments can help manage some aspects of the condition. There is no single test that can diagnose ME either.

True, but another fluffing. There is no cure for diabetes or RA but we keep people well. It is a silly thing to say. And treatments don't help manage ME/CFS much - which slippery slope is that meant to be going down? And there is no single test for RA or MS or anything else much - these are all irrelevances surely.

NHS England says improvements are needed within the health service and across society ...
The Department of Health and Social Care says it is committed to improving...

For goodness sake, why do we have a system where there are two different lots of people talking past each other like this. NHSE - we need more. DHSC - yup we are doing more. How crazy is that.

And nothing whatever is going to happen until physicians as a whole see the practical need for them to provide help, just as I did ten years ago when I realised that there really is something called ME/CFS. That means talking with the Royal College, not with bureaucrats.

 

And there are also community psychiatrists. But you then get the crazy situation that if you at home you are under one consultant and if you in hospital you are under another and they have to write letters to each other than take two weeks to arrive. If you are in and out of hospital every couple of weeks, as my wife was, the whole thing is a nonsense. I ended up taking her to casualty at a different hospital where I found a consultant who saw sense.

 

This part bothered me. All I ever hear about from the NHS is that they can’t cope, are on their knees and don’t have what they need to help me. I’m a fan of the NHS, I have close friends and family working in it and absolutely understand that it’s been underfunded and ruined over recent decades.

I also feel that as a patient with a long term illness which the NHS effectively does not treat, nor make adjustments for when treating my other problems, that hearing the excuses about overwrought staff and crumbling buildings - before we even get into what they “could” do for me - is the absolute limit.

Aside from that, excellent points Jonathan Edwards. I’ve made this point before elsewhere , but one “disconnect” I feel in the current coverage is the “whataboutery”. We hear that Drs didn’t believe ME/CFS was real, but now Drs believe it, the missing piece of the puzzle is our lived experiences of being in front of a nurse, GP, Dr, Consultant as a pwME, with X symptom or Y problem and then having to endure them going through a thousand “it’s this, it’s that, have you tried counselling, have you tried yoga” because they don’t know what to attribute to ME. Then they start attributing the issue to what they do know (shit life syndrome, pain in the arse patient disease, frequent flyer, psychological, go for tests/test results are normal etc)

Not sure how you communicate it succinctly. Yes we may have health problems which do need to be assessed via various checks and tests, but no HCP ever starts off looking through the lens of “patient has ME so I’ll need to adapt my approach from the start, make this process as easy as possible but also be aware the issue could have a different cause”. They can’t and won’t and don’t start there because they don’t know what ME does to a person.

 

now everybody has to do a shot.


I agree, it’s one thing hearing that there is nothing they can do to treat the MECFS, but another level of horrible hearing they can’t make minor accommodations to avoid making it worse.

 

And another level again when there is a side issue (with me it’s often my voice or my reverse sleeping) which has to be explored and explained, and feeds into the “suspicion” that you’re “just lazy/depressed” and then your session is spent discussing that, when in fact you’ve got a broken finger and you just asked for an afternoon appointment.

(When I explained I wouldn’t be able to wake and come in at 9am, and asked for some reasonable adjustment “the doctor says sleep deprivation isn’t a disability so there’s no duty for a reasonable adjustment, you need to get up and here at 9 and wait like everyone else”)

 

Actually doctor it’s one issue one appointment so I’ll telephone another day to arrange that!

 

It’s not when the Dr decides there’s an Urgent Medical Issue they need to explore. See also “well this appointment has overrun so I’ll have to go” ok thanks, so you’ve wasted my time because I’ve had to bring you up to speed on something which isn’t currently an issue, and now it’s somehow my fault I’m not getting the appointment I needed.
If only the GP could access my medical history somehow. To see what the ENT has said or the ME/CFS clinic has said.

 

That's dreadful and wrong!

 

How vile, and exhausting.

 

This is the point. It’s exhausting.
ME/CFS causes reverse sleeping and sleep problems, basic fact which few medical professional knows or accepts as a status quo.
I know Maeve faced this in hospital, I read it somewhere “maybe if you weren’t up all night then asleep all day…” like it’s a choice. Like it’s a failing.

 

I think this is an area where we somehow need to work out how to get the stats and surveillance on it so we know the real numbers of pwme who get killed via a route that manages to relabel them so they get no peace or justice in death either


This is the most egregious part of the brutal hostile environment deliberately built fir pwme

and probably because it’s hard for those people to communicate and even be believed by the community once they have that labelling and capture they are disappeared into hell and not counted even in the numbers

I also note those who’ve been through adolescent services are made to feel threatened (with removal and worse treatment I suspect) fir speaking out and how many end up so destroyed they then turn up having had to have full time carers in a hospital and are then treated by those new staff as if ‘people don’t get this ill’ whilst prior treaters whistle as if their bs treatment like sleep hygiene isn’t responsible

it’s that continual refusal to accept responsibility leaving even patients who give it a go just abandoned to worse bullying from the next person when the last person has no integrity to say it was their treatment that left them there so not to put them through that same bullying sgain.

and yet I think the ones we hear about are the tip of the iceberg - because of these threats and because unless you’ve someone close to you who will go against the grain every single person these people meet are in deluded land so once you lose your voice, which will be early because it’s constructed so you never get a break from the environment to be out of PEM at any point , well then you’ve been disappeared snd no one is stopping those now in charge of you from saying what they want about you

and no one you could contact believes because of your voice and because the story is so endless you have to tell

 

It might be the Miranda Hart article - time-sensitive because there's a book out.

Edit: snap @Lou B Lou !

 

Does anyone have access to the Times article. I can't get through to it.

 

Archive for Times article on MH
https://archive.ph/jlOMO

 

Too stupid at the moment to post the link, but there is an absolutely beautiful piece on #ThereforME by Maeve's best friend.