BBC online: Dorset woman with severe ME 'left to rot by the NHS'

[maryb]

At least they have the nursing home fees paid now, its amazing what happens when the media get involved isn't it?

 

[IamME]

Well most people who go into a nursing home are expected to pay for it themselves or lose their property etc. 50K a year is certainly more than the vast majority of severely affected ME sufferers get spent on them. Her daughter claims 98% aren't as severely affected as her, well, maybe 80-90%, but being bedbound is hardly unheard of.

What I don't get is that she has a husband, why isn't he looking after her at home? That's what spouses usually do when their partner's bedbound, they give up work if necessary and become carers (if they stick around at all), maybe with some help from social services. He'd rather stick her in a care home - nice.

And "left to rot" meaning receiving 50K of care, what, that's unlike people with MS or other very severe illnesses is it?

I'm rapidly losing sympathy with this disjointed family and their strange expectations. On top of the damaging advert for Romford/NHS "treatment" they'e painting a poor portrait of pwME and you can see the backlash in some of the comments. If they want to talk about how terrible the ME situation is there's more than enough legitimate arguments -- NICE, cbt/GET torture therapy, scientific fraud, disregarding biomedical treatments, wasting of taxpayers money on PACE, social services inability to accomodate needs in the community (they touched on this one), disability benefits, NHS collusion with LP quackery, etc. But no, they whinged about not getting psychotherapy/exercise and only having 50K of care a year.

 

[Tia]

Oh man, I wept when I watched this. If they only KNEW how we suffer! It's inhuman to be sick with this.. Some days, like today I just wish I'd die in it and get it overwith but I don't and the fight goes on.. And I never get anywhere.. It's just.. Poor POOR woman! :tear::tear:

 

[Tia]

:Retro mad: For the love of God that's nothing but Emotional and Mental Support focused on lifestyle management. That might help their depression but not their ME/CFS.

The sadistic side of me sometimes wishes that all the universal blood donors with this disorder could give blood to all those who deny or cover up this disorder saying that it's psychiatric in nature. Force them to get at least three blood donations from three different people spread out over three years. Then give those folks about two years and see what develops.

Bet you that several of those disbelievers and deniers would be going crazy completely wiped out barely able to physically function and yet feeling like their brain and insides are crawling the walls. Does this make me a bad person that every once in a blue moon if think about this? Truthful I wouldn't wish this on anyone. But sometimes well...

Sometimes i think in the same terms; give those who doesn't take this seriously, ME for 6 months, and then see what they have to say. :Retro mad:

 

[Wildcat]

.


The family have probably heard somewhere about the Prof Findlay’s Essex Clinic, and don't realise its a sham that just does CBT/GET/NLP but has been relentlessly hyped up by - Prof Findlay himself.

Groan. The BBC uses Professor Findlay as their 'ME expert' and now there’s more publicity for his blinkin' rubbish clinic on BBC South and in the Dorset Echo.

.

 

[Wildcat]

.


Prof Findlay (who runs the Essex Clinic) also promoted Lightning Process on a 2007 BBC Radio 4 ‘You and Yours’ series on ME:

Response from editor, You and Yours: ME: 30 July 2007
August 3, 2007 — meagenda
http://meagenda.wordpress.com/2007/08/03/response-from-editor-you-and-yours-me-30-july-2007/



Findlay did do a Lighting Process pilot back in 2007 (with Phil Parker in the background), along with Gerri de Vries who was senior OT at the Essex clinic and who had trained as a Lightning Trainer. Findlay and Gerri de Vries gave a talk on Lightning at the 2007 Melvin Ramsay Society Conference.




But Professor Findlay (who runs the Essex Clinic mentioned in the BBC South report), now appears to have jumped on the NLP/Life Coaching bandwagon with his very own version of Lightning Process (see below).




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




Professor Findlay is now advocating his own version of Lightning Training – a 3 day training called Neuro Behavioural Training (NeBeT).


And If Professor Findlay’s NeBeT sounds suspiciously like it is based on CBT and Lightning Process – thats because it is!:


http://www.nebet.co.uk/

Occupational Therapy promotes independent living, both physically and psychologically. It aims to reduce disability and maintain or enhance functional skill levels in everyday activities, including self care, work, education and leisure.

Clinical Hypnotherapy works by using an altered state of consciousness to elicit deeply relaxed responses from the nervous system. It also uses techniques to heighten awareness and enable you to make positive changes.

Neuro Linguistic Programming studies the structure of our subjective experience and offers techniques help increase awareness and change thinking and behaviour.

Cognitive Behavioural Therapy works on the premise that the way you think affects the way you behave. Being able to look at things from a different perspective, rationalising your thoughts and practising doing things a different way can alter the way you feel and act.

Life Coaching is a form of counselling for a person who has reached a point in their life when they need to reflect on where they are at the moment and where they want to be in the future. It helps plan a path from the present state to the desired state.



HOW IS THE TRAINING STRUCTURED?
The training takes place over three consecutive days and lasts for approximately 4 hours per day but does vary depending on the size of the group. In addition, there are 2 follow up sessions.



WHO ARE THE TRAINERS?
Susan Codd and Audrey Norman are the Trainers. Both have both worked with Professor L J Findley, Consultant Neurologist in the field of CFS/ME for over 15 years.

Susan has trained in Occupational Therapy, Clinical Hypnotherapy and Cognitive Behaviour Therapy.

Audrey has trained in NLP, Clinical Hypnotherapy, Life Coaching and Counselling.



NeBeT:
It is influenced by many different therapies, treatments and theories including occupational therapy, clinical hypnotherapy, cognitive behaviour therapy, neurolinguistic programming and life coaching .

It has been developed by Susan Codd, Occupational Therapist and Clinical Hypnotherapist, together with Audrey Norman, NLP Practitioner, Clinical Hypnotherapist, Life Coach and Relate Counsellor.

Professor Leslie Findley, Consultant Neurologist and Clinical Director of the National ME Centre and Centre for Fatigue Syndromes in Essex has contributed to its development and Ged Codd, Chartered Physiotherapist and Judith Harding, Dietician and Nutritionist, both specialists in the management of CFS/ME have also contributed their expertise to aspects of the training.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




What an NLP bandwaggon jumper Prof Findlay is!

 

[Wildcat]

.



IANME wrote: "On top of the damaging advert for Romford/NHS "treatment" they'e painting a poor portrait of pwME and you can see the backlash in some of the comments.....If they want to talk about how terrible the ME situation is there's more than enough legitimate arguments -- NICE, cbt/GET torture therapy, scientific fraud, disregarding biomedical treatments, wasting of taxpayers money on PACE, social services inability to accomodate needs in the community (they touched on this one), disability benefits, NHS collusion with LP quackery, etc."



I agree with you Ian. If anyone is up to it please expose some of the ME policy frauds in the comments section of the Dorset Echo -but no point expecting sympathy - go for in the waste of taxpayers money going to rubbish CBT research etc. What some respondents are saying is that everyone is being deprived of NHS treatment - they don't realise that ME patients were the mine canaries for the NHS neglect of the future!


http://www.dorsetecho.co.uk/news/loc...n_s_ME_ordeal/

 

[Wildcat]

.

Sorry, IamME, I misread your name. Many apologies.

 

[Angela Kennedy]

.


Prof Findlay (who runs the Essex Clinic) also promoted Lightning Process on a 2007 BBC Radio 4 ‘You and Yours’ series on ME:

Response from editor, You and Yours: ME: 30 July 2007
August 3, 2007 — meagenda
http://meagenda.wordpress.com/2007/08/03/response-from-editor-you-and-yours-me-30-july-2007/



Findlay did do a Lighting Process pilot back in 2007 (with Phil Parker in the background), along with Gerri de Vries who was senior OT at the Essex clinic and who had trained as a Lightning Trainer. Findlay and Gerri de Vries gave a talk on Lightning at the 2007 Melvin Ramsay Society Conference.




But Professor Findlay (who runs the Essex Clinic mentioned in the BBC South report), now appears to have jumped on the NLP/Life Coaching bandwagon with his very own version of Lightning Process (see below).




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




Professor Findlay is now advocating his own version of Lightning Training – a 3 day training called Neuro Behavioural Training (NeBeT).


And If Professor Findlay’s NeBeT sounds suspiciously like it is based on CBT and Lightning Process – thats because it is!:


http://www.nebet.co.uk/

Occupational Therapy promotes independent living, both physically and psychologically. It aims to reduce disability and maintain or enhance functional skill levels in everyday activities, including self care, work, education and leisure.

Clinical Hypnotherapy works by using an altered state of consciousness to elicit deeply relaxed responses from the nervous system. It also uses techniques to heighten awareness and enable you to make positive changes.

Neuro Linguistic Programming studies the structure of our subjective experience and offers techniques help increase awareness and change thinking and behaviour.

Cognitive Behavioural Therapy works on the premise that the way you think affects the way you behave. Being able to look at things from a different perspective, rationalising your thoughts and practising doing things a different way can alter the way you feel and act.

Life Coaching is a form of counselling for a person who has reached a point in their life when they need to reflect on where they are at the moment and where they want to be in the future. It helps plan a path from the present state to the desired state.



HOW IS THE TRAINING STRUCTURED?
The training takes place over three consecutive days and lasts for approximately 4 hours per day but does vary depending on the size of the group. In addition, there are 2 follow up sessions.



WHO ARE THE TRAINERS?
Susan Codd and Audrey Norman are the Trainers. Both have both worked with Professor L J Findley, Consultant Neurologist in the field of CFS/ME for over 15 years.

Susan has trained in Occupational Therapy, Clinical Hypnotherapy and Cognitive Behaviour Therapy.

Audrey has trained in NLP, Clinical Hypnotherapy, Life Coaching and Counselling.



NeBeT:
It is influenced by many different therapies, treatments and theories including occupational therapy, clinical hypnotherapy, cognitive behaviour therapy, neurolinguistic programming and life coaching .

It has been developed by Susan Codd, Occupational Therapist and Clinical Hypnotherapist, together with Audrey Norman, NLP Practitioner, Clinical Hypnotherapist, Life Coach and Relate Counsellor.

Professor Leslie Findley, Consultant Neurologist and Clinical Director of the National ME Centre and Centre for Fatigue Syndromes in Essex has contributed to its development and Ged Codd, Chartered Physiotherapist and Judith Harding, Dietician and Nutritionist, both specialists in the management of CFS/ME have also contributed their expertise to aspects of the training.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




What an NLP bandwaggon jumper Prof Findlay is!

That link is absolutely astounding!