To think that alternative medicine practitioners and websites need urgent regulation? *trigger warning - cancer*

[SinkGirl]

Saw this story this morning and it broke my heart
metro.co.uk/2019/06/03/mum-went-vegan-shunned-nhs-treatment-dies-cancer-9777871/

I do not blame or judge this woman. I blame and judge the people making an absolute fortune from exploiting the fears of people like her. I blame the websites that tell outright lies in order to flog ineffective supplements and regimens to sick people.

I dread to think how much money the family must have spent on these alternative treatments and scans - my own mother spent more than £40k in her final 18 months on everything from (illegal) cannabis oil made in some blokes kitchen to distance energy healing sessions (exactly what it sounds like). She even went to a European country for a private session with the creator of some absolutely nonsensical therapy.

She had all this alongside nhs treatment, so when she got sicker they blamed that.

When she was dying in a hospice, they blamed her being in a hospice.

They were still calling trying to get a bit more cash out of her in the hours before she died.

These people and websites absolutely pray on vulnerable people. How is this allowed to go on unchecked? What can be done about it?

I’m heartbroken that today there’s a little girl who’s lost her mum, when free treatment readily available to her could have saved her life.

These charlatans disgust me, and I can’t believe that people can’t see that they are in it for the money just as much as any drug company.

For those who are genuine and don’t lie about the evidence for their treatments, there shouldn’t be a problem as they wouldn’t make unsubstantiated claims, right?

AIBU?

YANBU.

'complementary therapies' can have a positive impact on the individual but they are not medical treatments. My mum loved getting her nails done in the hospice,it gave her a personal boost but didn't stop her cancer, and we didn't expect it to.

Oh of course - complementary therapies can have a wonderful impact, things like mistletoe therapy are said to be really effective for working alongside chemotherapy to reduce side effects etc.

Sorry, attempting clicky link

metro.co.uk/2019/06/03/mum-went-vegan-shunned-nhs-treatment-dies-cancer-9777871/

I wholeheartedly agree OP.

I work as a complimentary therapist and absolutely agree. Every few months I have a request from a cancer patient to treat their cancer. as my therapy can help alleviate side effects of chemo and post surgery pain it can be useful. But I make it very very clear that it won't treat the cancer. Some people refuse chemo for a variety of reasons but I try and make sure it is never because they believe my therapy will help. But some of the bollocks they are fed is awful about what might help. If you see anyone advertising or making such claims please tell the advertising standards authority and hopefully they will follow up.

They prey on the most vulnerable.

My grandfather hoped an alternative therapy could help him, and it wasn’t just the money, but the false hope they give people who are ill and their families.

Despicable.

I find it impossible to understand the choice she made, based on no scientific evidence whatsoever - especially as she had a young child. I'm amazed that none of her relatives and friends persuaded her to accept conventional medical treatment for such a serious illness.

I could not agree with this more.

Do many Charlatans with no scientific or medical training or knowledge spouting about therapies and energy lines and the feet being a mirror of the body and all that nonsense. And that's without the homeopathy nonsense.

YADNBU

My friend uses homeopathy on her toddler (also not vaccinated, of course) instead of taking him to the drs. I have had to distance myself from her because I cannot hold my tongue any longer.

Mitchell and Webb do a very funny, but very accurate sketch about a guy who works in a "Homeopathic A&E Department".

Sadly I think they are so close to reality that it's hardly satire.

"What have got nurse"

"Adult male, been run over by a Blue Ford Mondeo"

"Right, get me a bit of Blue Ford Mondeo, put it in water, shake it, dilute it, shake it, dilute it some more, and put three drops on his tongue, if that doesn't cure him nothing will".

A member of my family used some type of this treatment - an injection of something that came from Europe. He did it alongside chemotherapy etc. For a while the lack of progression of his terminal cancer could not be explained by his cancer team. Of course he and most of those around him put it down to the snake oil he was using.

Shortly before his death the lack of progression was explained - a miss diagnosis between his primary and secondary cancers. Absolutely nothing to do with the injections.

Everything about these treatments and ‘cures’ needs consigned to the bin 😡

She knew the risks though and chose the path she chose. Her doctors would have made it very clear that nothing but chemo would work,they don't fanny about ,they are very clear.

I hardly think you can blame the alternative treatments she chose to use.

Phew. I was expecting some angry responses here.

I work as a complimentary therapist and absolutely agree. Every few months I have a request from a cancer patient to treat their cancer. as my therapy can help alleviate side effects of chemo and post surgery pain it can be useful. But I make it very very clear that it won't treat the cancer. Some people refuse chemo for a variety of reasons but I try and make sure it is never because they believe my therapy will help. But some of the bollocks they are fed is awful about what might help. If you see anyone advertising or making such claims please tell the advertising standards authority and hopefully they will follow up.

Thank you YinYen. You are exactly the sort of practitioner that vulnerable patients need.

My grandfather hoped an alternative therapy could help him, and it wasn’t just the money, but the false hope they give people who are ill and their families.

I’m so sorry. It was exactly the same for us. The money was the least of my concerns. She truly believed she was being cured and refused to accept she was going to die even when she could no longer eat and was starving to death. Then one of them told her that she was dying because she was in a hospice and needed to leave. After caring for her for 18 months, the last conversation we ever had was her begging me to take her home and me saying I couldn’t, and her screaming at me that I was killing her. It still haunts me every day. I hate that fucker beyond words.

I can understanding not wanting chemo in some circumstances, especially if you have incurable / terminal cancer or you just don’t want it. That’s everyone’s individual choice. But to think someone threw away curative treatment because they’d been convinced that expensive ineffective alternatives would be just as effective makes me absolutely furious. Not with her, i know how these people operate and how desperate people are to believe them. This is why they need to be regulated.

I’ve seen other types of companies state they can’t make medical claims (eg people who make and sell creams that may help with eczema) and yet there are people out there claiming they can cure cancer. It’s repulsive.

As Tim Minchin says,
“what do you call alternative medicine that’s been proven to work?
Medicine”

I hardly think you can blame the alternative treatments she chose to use

Have you seen how many of these people operate?

‘I have always been into alternative health. I started researching and decided there was no way I was having chemotherapy and radiotherapy

It's very clear she wasn't having treatmtment, any complimentary treatments she sought out would've been because she wanted them not because she was tricked into thinking they'd work.

You can't force someone to have treatment and actually after watching the horrific way chemo affected a friend and 3 family members,I don't blame her.

I'm with you all the way on this.

YANBU. Completely agree OP. I’d also chuck in counselling to that as well ( May be controversial). You need mental health help then see a psychotherapist or psychologist- any bugger can call themselves a counsellor as it’s an unprotected term. I know some are very good but how do you tell when it’s so badly regulated. And yes I know people will say only go with BACP registered ones but I’ve worked with many bacp registered ones who were not just useless but bloody dangerous. Disclaimer: I work in mental health.

LoafOfSellotape have you actually read what I’ve written? I don’t blame her either.

I do blame the websites where she did her “research” and the practitioners who took her money (for treatments that have never cured and could never cure cancer) that convinced her this was a viable option. She didn’t just want to ease her suffering, she was convinced that these things would treat her cancer and, having seen how the alternative medicine industry achieves this conviction, I absolutely blame that industry.

its a mixture of desperation, fear & denial. People hope for a miracle cure without the side effects that treatment can & does cause - in these circumstances people are vulnerable to conmen who peddle hope of cure - often giving scientific sounding terms & using terms like de toxifying etc & pointing out the medical treatment is poisoning their system. The most important thing in medical treatment is to explain how the treatment works in terms that lay people can understand

But the point is that the therapies are 'complementary' ie they complement the other treatments. You do the whole lot to heal body and soul. You aren't meant to rely entirely on crystals or diluted juice or whatever this drivel might be. A nice aromatherapy massage could lift you and improve your comfort after a chemo session though, but homeopathy is dangerous as it's utter rubbish. So many seem to prey on vulnerable individuals. It's very sad.

have you actually read what I’ve written?

Of course I have.

My point is that she held great faith in her vegan diet too,she wasn't going to have treatment full stop.

No Bobbin, complementary therapies and alternative medicine are two very, very different things.

Loaf I disagree. If she had known the truth - that medical treatment was her only chance of surviving - you don’t know what choices she would have made.

The amount of outright lies about alternative medicine online is absolutely insane. I was shocked when I was unfortunately exposed to it via my mum. I couldn’t believe the claims made and the number of people that believe them with no evidence whatsoever.

She was obviously very motivated to treat the cancer, even travelling abroad for some of these things - had she not been fed a load of nonsense, who knows.

And even if it’s true that she would never have had treatment, regulating the claims that alternative practitioners and websites can make is still crucial since many are not so certain.

My DH believes in some of this, and so I really hope he never gets cancer. He follows some quacky people on Facebook who think that vegan diets and sucking on apricot pits cure cancer. He thinks that the pharmaceutical business don't want people to know because they would lose money. We already follow a vegan diet so I've said if he gets cancer he must have one of the types that can't be cured by veganism so he should taste the bloody medicine I'm hoping that now we have DS that might knock some sense into him.

It's the MHRA rather than ASA who regulate this, although I imagine they'd have a hard time removing every bit of quackery that people post online.

*take the bloody medicine