Should sickness/disability benefits be conditional on adhering to treatment (UK) ?

[charles shepherd]

Isn't Lightening Process in the process of being trialed? When (not "if") they spin that in positive manner, anyone taking a 3-day course will be qualified to treat us.

Lightning Process 'SMILE' trial:

http://www.trialsjournal.com/content/14/1/444

and:

http://www.ncbi.nlm.nih.gov/pubmed/24304689

and:

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile.html

Results due to be published in late 2015

 

[jimells]

This is yet more evidence that we really have only two rights:

1. The Right to Obey
2. The Right to Starve

 

[Esther12]

A psychiatrist well know to be interested in ME pointed out to me his concerns that there are virtually no trained therapists in the UK who are capable of delivering proper CBT for ME! So I think it would probably be pretty impossible to argue that the government could require patients to have CBT unless they were seeing Dr Trudi Chalder.

Hmmm... bit of a convenient way of explaining the poor results from CBT. "Oh, that's not 'proper CBT' like the special sort Chalder provides."

If doctors and pharmaceutical companies were being paid to provide a dug to treat patients, but were not providing the 'proper' drug, then action would be taken against them. Until action starts being taken against those providing the 'wrong sort' of CBT/GET this sort of talk just sounds like a limp excuse to me.

 

[Seanko]

Various points

*The proposed reduction of Employment & Support Allowance (ESA) for the Work related activity group in the UK will affect many people in Britain. Not entirely picked up the the ME/CFS charities. This will have a more immediate impact than proposed forced treatment plans...

>>>possibly somebody from the MEA or Action for ME could write a comment piece for the press? Maybe in conjunction with other sickness & disability groups.

*Re: Simon Wessely whatever you think about his views on ME/CFS, he is a good advocate for health provision for mental health the UK.

 

[A.B.]

*Re: Simon Wessely whatever you think about his views on ME/CFS, he is a good advocate for health provision for mental health the UK.

In my opinion we don't need more placebo therapies (such as CBT) or antidepressants (works only in about 10% patients). If I understand, this is the treatments Wessely wants to make more available. He also wants psychiatry to get more involved in other diseases, citing some presumed mind-body effects (quackery). These things are not in the interest of patients but in the interest of psychiatrists and pharma industry.

What would be in the interest of patients is more research to elucidate the biological basis of these poorly understood diseases, as well as more thinking out of the box (since the current approaches are a huge failure). There are also big problems with the quality of studies. There needs to be more of a culture of critical thinking and questioning.

 

[MeSci]

Hmmm... bit of a convenient way of explaining the poor results from CBT. "Oh, that's not 'proper CBT' like the special sort Chalder provides."

If doctors and pharmaceutical companies were being paid to provide a dug to treat patients, but were not providing the 'proper' drug, then action would be taken against them. Until action starts being taken against those providing the 'wrong sort' of CBT/GET this sort of talk just sounds like a limp excuse to me.

The 'right' sort of CBT for ME is indeed a special kind. Unlike normal CBT, the ME variety is in fact brainwashing.

 

[user9876]

Lightning Process 'SMILE' trial:

http://www.trialsjournal.com/content/14/1/444

and:

http://www.ncbi.nlm.nih.gov/pubmed/24304689

and:

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile.html

Results due to be published in late 2015

We already have coerion of treatment for children via the child protection system or doctors threatening it if parents ask them too many questions. So the thought of this LP trial aimed at children is concerning. The GMC don't seem to have any interest in doctors enforcing treatments though child protection.

What is also worrying is the state guardian proposals in Scotland where the government appoints someone to make all these decisions. When this happens in the medical realm this again is coercion but there has largely been silence.

We should be particularly worried about the SMILE trial as its protocol is designed to give positive results and was further optimised after a small trial.

 

[user9876]

*Re: Simon Wessely whatever you think about his views on ME/CFS, he is a good advocate for health provision for mental health the UK.

I would disagree. He does promote mental health but very much on a treatment as normal basis where treatments are increadibly ineffective. I think to get good health provision for mental health there needs to be massive advances.

Things like the movement towards CBT for many mental health conditions is very worrying especially where it is ineffective and some are suggesting its use for say psychosis is a replacement for drugs. The drugs are pretty bad but CBT has no effect.

I tend to think that Wessely as the head of the psychiatrists union should be showing leadership to stop the promotion of ineffective therapies and push for novel research. But he (along with the rest of the establishment) seems happy with the status quo just asking for more money for crap treatrments.

 

[user9876]

One question in my mind is at what point does coercion start.
What is the difference between a doctor persuading a patient to have a particular therapy and for the patient to be coerced into it. The phrase 'you do want to get better' comes to mind, What if the positive outcomes are over spun and dangers underplayed so that someone accepts a treatment they wouldn't normally choose. Is that coercion.

Dispite this debate I've not seen anyone talking about the ethics of medical practice and when persuasion or advertising becomes coercion. Just a debate saying government shouldn't coerce.

 

[alex3619]

could behavioural compliance be linked to benefits as well?

My understanding is this is already happening in the UK.

 

[charles shepherd]

My understanding is this is already happening in the UK.

This type of (obvious or subtle) coercion to take part in either CBT or GET is sometimes used by insurance companies here in the UK in relation to the type of sickness and disability policies (i.e. PHI/Income Protection) that they provide and has been going on for many years

We receive a vast number of enquiries and feedback at the MEA regarding DWP benefits and I haven't had to deal with anything similar here for quite some time in relation to state sector welfare benefits

 

[worldbackwards]

My understanding is this is already happening in the UK.

As in "increase activity or you lose everything"? Bloody hell.

 

[MeSci]

One question in my mind is at what point does coercion start.
What is the difference between a doctor persuading a patient to have a particular therapy and for the patient to be coerced into it. The phrase 'you do want to get better' comes to mind, What if the positive outcomes are over spun and dangers underplayed so that someone accepts a treatment they wouldn't normally choose. Is that coercion.

Dispite this debate I've not seen anyone talking about the ethics of medical practice and when persuasion or advertising becomes coercion. Just a debate saying government shouldn't coerce.

and, slightly O-T, is it right for a doctor to refuse to order a test on the grounds that a patient has stated that they are not prepared to use a particular type of drug? This has happened to me when I asked for a bone density scan, having suffered an unexpected (my first) fracture a few years previously and wanting to know whether I needed to continue supplementing bone minerals. Foolishly I had told the doc that I wasn't willing to take bisphosphonates, following which he refused to order the scan, saying that there was no point if I wouldn't take those drugs.

I'd also be interested in what treatments would be insisted upon for obese patients. Physicians' First Watch recently reported that no recommended diets produced lasting weight loss. It seems to me that the only clinically-approved treatment that works is bariatric surgery. So are they going to insist on that, or deny benefits? It makes no sense, as many obese people are in work, including some MPs and government ministers!

BTW I achieved my own weight loss (from near-obese to sustained normal weight) by cutting out gluten and reducing sugar and grains, but I somehow doubt whether any NHS doctor would recommend that.

 

[Dolphin]

One can read about Peter White coercing a patient at this link.

Extract:
"The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White who also heads the ME/CFS clinic at Barts. This clinic only 'treats' mild/moderate cases with - you've guessed it - CBT/GET. Even NICE doesn't recommend CBT/GET for the severely affected, yet that didn't stop PW advising my insurer that my claim should be refused until I undertook CBT/GET again."

http://forums.moneysavingexpert.com...9d2967a8256c4b1cfdd971d1f&t=2356683#topofpage

 

[Seanko]

Patients claiming benefits in the Work Related Activity Group (WRAG) for Employment & Support have to "make attempts to find work related activity"

The current welfare bill going through parliament will mean new claimants will receive 30% money. It is not clear what will happen to existing claimants.

The ME/CFS charities have not made any major statements on the harm such changes would cause to individuals as sick & disabled people incur greater costs than the general population.

 

[charles shepherd]

Patients claiming benefits in the Work Related Activity Group (WRAG) for Employment & Support have to "make attempts to find work related activity"

The current welfare bill going through parliament will mean new claimants will receive 30% money. It is not clear what will happen to existing claimants.

The ME/CFS charities have not made any major statements on the issue.

The MEA deals with DWP civil servants and DWP senior medical advisers through our membership of the Fluctuating Conditions Group

Have you read our report, along with all the work we have been doing, and we are continuing to do, in relation to all aspects of ESA?

Report:

http://www.meassociation.org.uk/wp-content/uploads/Fluctuating_conditions_report_FINAL.pdf

I am just about to go on holiday but two days ago I was discussing a range of DWP issues that have followed the general election, as well as a new training module on fluctuating medical conditions for health assessors, and the need to try and have a meeting in mid August when I am back again

 

[Seanko]

@charles shepherd

Thanks for that, the report is from 2011. The reductions in money & the attempts to nudge sick and disabled people into work who are not capable is deeply troubling.

Look forward to the MEA working together with AfME & other stakeholders on the issue.

Enjoy your holiday!

 

[worldbackwards]

The psychologists are revolting! (they aren't keen on these proposals either)

http://www.theguardian.com/society/...se-claimants-of-benefits-flawed-and-unethical

 

[alex3619]

As in "increase activity or you lose everything"? Bloody hell.

As in attend psychotherapy/behavioural programs, and do what they say, and show and improvement in attitude. Its starting to be field trialed. This is not ME specific, but would apply to us as well.

 

[alex3619]

This type of (obvious or subtle) coercion to take part in either CBT or GET is sometimes used by insurance companies here in the UK in relation to the type of sickness and disability policies (

My understanding is that this has been reported for insurance companies over much of the world.