Thread 18: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film?

[DisappointedReader]

Hello all. I've simplified the opening post as I don't think we need to keep reposting all the links, timelines and so on at this stage of proceedings.

The Observer's original exposé: The real Salt Path: how a blockbuster book and film were ...
First thread: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film? | Mumsnet
Links to threads 2-16, the other 20 Observer articles and videos to date, Raynor Winn/Sally Walker's statement, our timeline and sources can all be accessed in the OP and first few posts of Thread 17: https://www.mumsnet.com/talk/am_i_being_unreasonable/5403285-thread-17-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?

New posters joining us in the genuine spirit of our civil discourse are welcome. It would be helpful to get the background from at least some of the Observer exposé items before posting.
To all - Please be extremely cautious when it comes to naming or implicating people and addresses not in the public eye or with no direct connection to the story, and around the understandable health speculations, especially where details are unclear or still emerging. Remember, even Hollywood rabbits attract the odd flea. Please do not engage with drive-by scolders who seem to have their own agenda and seek to derail. Avoid @'ing and quoting them as - from experience - this will only encourage them back to the threads. We have done amazingly well together for 17 very interesting, very serious and very silly threads so far. I can't be here as much as I'd like so all help with keeping our discussion walking along in our usual reasonable and respectful fashion is very welcome.

Now three months in, if these threads could wear slogan t-shirts they would be Mark Twain's often misquoted 'The report of my death was an exaggeration'. Applications in writing from correspondents seeking supply parcels of fudge and cider will be tolerated.

Here we are again
Disappointed as can be
All good pals and jolly good company
Strolling round the path
Happy on a spree
All good pals and jolly good company

Never mind the weather, never mind the rain
Now that we're together, whoops we go again!
Whoops, we go again
La-di-da-di-da, la-di-da-di-dee
All good pals and jolly good company

Keep to the path. No saltiness. May the fudge and cider be with you.

Thanks for that @Innermagnolia and you are very welcome on the path!

@Innermagnolia Presumably, however, it was because the letters demonstrated that they didn’t make up mention of CBS/CBD themselves, which SW and TW see as getting themselves out of trouble. Possibly though, from Tim’s consultant’s point of view, he/she may have been happy to show that they definitely did not advise them that Tim only had two years to live!

Yes, I think they are good suggestions for why these letters were released.

The consultant's letter shows that he was lied to - the mother's death in her fifties, when she was still alive. TSP proves that the author lies about when the consultant spoke to them. (see below)

Extracts from TSP:

Scene : near beginning of walk. Cast-iron bladder. CBD was supposed to cause incontinence, but certainly didn’t seem to have affected him so far.

Scene : where Exmoor meets the sea. Moth was tiring and finding every step a struggle. I was leaden and achy. It could have been our lack of fitness, the emotional exhaustion, the CBD, or maybe it was just the chips.

Scene : looking out to Mount's Bay. We should add ‘don’t get cold’ to the already extensive list of things to do to counteract CBD. What had the consultant said just three months ago?

Scene: Golden Cap, Dorset. ‘I don’t know. It’s obviously got something to do with heavy endurance exercise. It must cause some sort of reaction that we don’t understand. I don’t know how it works, I just feel great.’ We jumped and danced in the fog of Golden Cap.

I do not understand how these casual references to a progressive condition were acceptable. Not to the ordinary reader, of course, but to any specialist in neurological conditions - a book by a woman, with no medical or scientific knowledge, writing of how miraculously improved her husband's health was through walking and communing with nature?

It doesn't matter that SW has written about TW's illness in the books. The consultant cannot discuss his patient without the permission of the patient. He cannot even discuss TW with SW unless he gets TW's permission.

I am a retired NHS consultant & like the neurologist I wouldn't be talking about my patient at all. The neurologist is behaving correctly.

I also think there is some possibility that there may have been some benefit fraud in there as well. We know from the TSP they were claiming weekly (working) tax credit and also that they were forwarding their mail so they didn't have to inform the DWP of the change of address or that neither of them were available for work during their jaunt on the SWCP.

Also worth noting that in the TSP and also in the 2015 "diagnosis" letter that TW had been seeing doctors with his ailment for the past 6 years and hadn't been working for the past 2 years - my guess is that may well have triggered the claim for benefits.

I suspect the judge in the case involving the Walker's may also not have been over the moon about the account of his behaviour given by SW in TSP - which may have bordered on the contemptuous if the facts of the case are different from those presented by SW.

According to CH's original Observer article, there are a significant number of neurologists specialists who are extremely sceptical that Moth has CBD/CBS. This scepticism seems to have been shared by the PSPA who dropped Moth and Raynor as ambassadors for the charity like a hot brick in the days following CH's explosive revelations.

I'm not a medical specialist, but doesn't there come a point in time when the neurologist who examined Moth has to conclude that his condition is so indolent and the symptoms are so atypical that in all probability Moth does not have CBS/CBD? If not, shouldn't he refer Moth to another neurologist for a 2nd opinion?

Some 20 years after first symptoms were observed by Moth, he completes the 120 mile Thames Path in 10 days in April 2024 looking, to all intents and purposes, as fresh as a daisy!

@izzywizzyletsgetbizzywynthomas Yes and following straight after:

They then have two days' rest before taking part in the London Marathon.

Mr Winn was diagnosed with CBD while the pair were walking the South West Coastal Path in 2013.

In TSP SW says they go to Liverpool to see the 'top dog' in his field. Is there any evidence that the suspected neurologist in question, is indeed the top dog in this field?

No, he is a specialist in dementia certainly, and Huntington's, but not the specific condition she has written and spoken so extensively about.

Exactly! He is thus not infallible, as tacitly implied by the reference to him being the top dog in his field. So why hasn't Moth been subsequently referred to the bona fide top dog in the field of CBD ( whoever he is and wherever in the UK he may be) if Moth is such a medical marvel and defying the typical progression of CBD through arduous ( but somewhat occasional) long distance walks?

"I was keen to acknowledge in our discussion that his clinical story has been unique"

That is a classic cop out imo. In the world of science, unique more often equates to faked/misdiagnosed/misrepresented..

Unless you believe in miracles ( which are in themselves things which defy current scientific understanding and thus don't really count unless you believe in divinely ordained miracles)

It took investigative journalists to expose Belle Gibson's story. Her sister to reveal Margaret Seltzer. Their real names given to an investigative journalist to shine a light on the Walkers.

It is stunning how many were happy to help them along the way ....

Thank you @PrettyDamnCosmic, I really do understand what you are saying, it is evident that the consultant does have permission to discuss TW with SW, he has allowed his letters to be used by SW. You keep saying that patient confidentiality is paramount, I get that, and no one is expecting the consultant to contact a journalist and out his patient. But let's look at this scenario again, so everyone is pretty darn sure it's Dr Davies who is the consultant neurologist responsible for the 2015 diagnosis, he reviewed the book, he must have read the account of himself giving this diagnosis at a point in time that he did not.

Very interesting thoughts @Innermagnolia I also wondered if the neurologist had hoped that the published letters would cast some doubt, but going by his review of TSP, I get the feeling that he might have got carried away with it all, he might have thought it was fiction. I don't think I see the situation the same as you @PrettyDamnCosmic I realise that you have been a consultant, as you have said, in your opinion Dr Davies has behaved correctly, you would be doing the same, that is your perogative.

You don't have to answer @PrettyDamnCosmic but what would you have done, if placed in a similar situation, one of your patients wife has written a book retrofitting a diagnosis you have given to enhance the sales of their book, then given countless interviews repeating the falsehood, what would you have done, talked to your supervisor or regulatory body. Or review the book and give it a positive write up?

Surely ONE doctor, somewhere along the line, must have read the three books and thought 'hang on a minute...' I mean, there's 'atypical' and there's 'actually, maybe it's not this after all and it's something else entirely'?

Does anyone know exactly when Dr Davies reviewed the book? his review was removed a while ago, you can no longer link to it. I think @BeguiledBrandy that Dr Davies also has a specialism in epilepsy as well as dementia.

13 April 2020
Advances in Clinical Neuroscience and Rehabilitation Volume 19 Number 3. p. 23

One of the reasons this thread continues to run and run (much to the probable annoyance of 'damp squid' and her ilk) is that it raises so many questions about so many wider issues besides the guilt and culpability of Raymoth:

• the authenticity and veracity of travelogues
• the role of agents and publishing houses in fact checking memoirs marketed aa 'unflinchingly honest'
• the conflict between moral values (truth etc) and the pressure to achieve commercial success faced by publishing houses beholden to their shareholders
• the gullibility of the great reading public and the hunger for feel good redemptive memoirs
• the responsibility of the medical profession to question initial diagnoses if the disease doesn't progress as expected
• the responsibility of journalists to ask more questions rather than blindly succumbing to hagiography
• the question of whether autofaction is a valid literary form and, if that's what the credulous reading public want is that what they will get?
• finally, and perhaps most importantly, what safeguards are required to prevent a repeat of Raynor Winn's skulduggery?

April 2020

Would they have put their head above the parapet publically though? I just don't know, it's such a morass of disinformation and misinformation.

The consultant opthalmologist I've seen several times is very eminent. I've had all sorts of sight issues and when I later presented with something very odd (perpetual flashing in one eye) he said after a thorough examination, "I'm not a neurologist but I believe it's not your eyes, it's persistent migrainous aura. I only see a couple of cases every 10 years and I get sent all the weird stuff".

There will be someone in this field who gets sent "all the weird stuff" and even if they're not speaking out, because they've never seen Timoth, I would put money on them wondering.

ETA still got it years later, nothing else happened so think his diagnosis was on the nose.

Thank you @BeguiledBrandy and @izzywizzyletsgetbizzywynthomas he must have known then and let this go on, surely he should have sat them down and told them to stop what they were doing, not reviewed the book, SW was with TW for his consultations, she was as known to him as TW. Did he not ask them about the walk, why it wasn't mentioned to him in 2015? (I know we are not convinced they did walk 2013 :) A good point @Uricon2 these specialists are often known to one another, I'm sure there has been talk about this in the field of neurology @Vroomfondleswaistcoat.

So mostly I'm thinking - when the books came out, or even just the first one and the 'conclusions' that Sal was drawing about walking having cured Tim... did no neurologist think that it might be a good idea to have Tim in again for some more tests? By then it must have been obvious to anyone with any medical knowledge that he couldn't possibly have CBD, which meant he was still undiagnosed. Surely at that point a letter calling him in for more tests should have been in order?

@Innermagnolia

"Possibly though, from Tim’s consultant’s point of view, he/she may have been happy to show that they definitely did not advise them that Tim only had two years to live! Maybe this is why they were given consent to publish? It represented an opportunity for him/her to set the record straight without breaking Tim’s confidentiality."

I assume you're referring to the letters that Salray made public. Patients do not need consent to publish their NHS letters. Once the patient has them, they can publish or talk about them anywhere. In this case, the WWs redacted the doctor's names anyway.

She says in her rebuttal that the letters were published with TWs permission, on the advice of the neurologist.

There is no evidence of a 2013 diagnosis. The redacted letter from a neurologist that SW has published is dated 2015.

Yes, you are correct - I apologise, I was sharing a series of quick exchanges and do usually quote my sources. But only the Walkers and their neurologist knew that until the letters were released.

Not even the BBC:

Thames Path walk for couple raising awareness of rare condition - BBC News