MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

[Sean]

Option 13: None of the above.

 

[slysaint]

“If you had a physical symptom such as fatigue
or pain that persisted and was found by doctors not to be caused by a particular
disease,

?? so CFS/ME is not a disease anymore (ie ignore your diagnosis)............this whole survey is so loaded it beggars belief.

Reminds me of the tv show where a Doctor pointed out that the NHS online test survey for depression was created by a pharma company who produce anti-depressants. The questions are all negative so when he did the test it said he was suffering from depression.
This is worse.

 

[Dx Revision Watch]

?? so CFS/ME is not a disease anymore (ie ignore your diagnosis)............this whole survey is so loaded it beggars belief.

Reminds me of the tv show where a Doctor pointed out that the NHS online test survey for depression was created by a pharma company who produce anti-depressants. The questions are all negative so when he did the test it said he was suffering from depression.
This is worse.

CFS has been considered an FSS for many years by many psychs.

The "lumping or splitting" thing in journal papers since around 1999. Also what KOLs like Peter Denton White, Moss Morris, Wearden and Creed believe.

 

[Dx Revision Watch]

@DrCharlesShepherd


Countess of Mar (Forward-ME) written Q that evokes written A that patients with ME/CFS will not be pressured into accepting IAPT MUS or CFS services if this is not their choice of management approach.

That where dedicated CFS services already exist, patients will not be diverted to IAPT run MUS or IAPT run CFS services if this is not their choice of management approach.

Forward-ME set up meeting with NHS rep to discuss concerns over "early implementers" and forthcoming roll out of IAPT services for LTCs, MUS and CFS in some areas during 2017/18/19.

 

[trishrhymes]

And the good news is:

http://forums.phoenixrising.me/inde...trial-data-cbt-and-get-are-ineffective.48764/

 

[Molly98]

And the good news is:

http://forums.phoenixrising.me/inde...trial-data-cbt-and-get-are-ineffective.48764/

I have just read this too Trish, great news. I guess the big question is how do we get this information out to GP and health care trust etc in a way that is organised, effective and is going to be taken on board, rather than each individual patient having to fight a dead end battle which gets us nowhere fast.
We need a cunning plan.

 

[Invisible Woman]

how do we get this information out to GP and health care trust etc in a way that is organised, effective and is going to be taken on board, rather than each individual patient having to fight a dead end battle which gets us nowhere fast.
We need a cunning plan.

Exactly! The problem is that each of us has to individually fight battles with GPs, Specialists, DWP, Benefits Agency. If one of us is successful in our endeavours (after superhuman effort), it only helps ourselves and doesn't contribute to the overall state of play.

Meanwhile, this crowd are paid to do this kind of thing and they can group together, hold meetings, and generally influence things. Not to mention having health on their side. Each of their actions, unlike ours, have a cumulative effect.

How can we change this?

 

[Molly98]

How can we change this?

I don't know but we need to think of something, maybe a joint effort to write a letter and compile and information pack that is given to all health care professionals or authorities we come across. In my personal opinion, giving out information on ME, the latest research etc does not have any effect on the vast majority of health practitioner, it would imagine in mist cases it gets cast aside and seen as just another patient who has been looking up stuff on the internet.

Personally I feel we have to go much further than that and be much clear. The focus of the letter should be to remind the practitioners of their duties, including their duties to do no harm, including duties to keep abreast of latest research and development and on informed consent.
We should make it as factual and hard hitting as possible and put them on notice that we will act if they fail in their duties.

For decades the approach of taking in research information on ME to doctors and appealing to their reason and trying to get them to treat us as we deserve to be treated has failed, it has not got us any further than we were at decades ago.

While research is moving on fast, our treatment by health professionals is not and despite the evidence, there seems an orchestrated move to take things backwards. Personally, I feel we have to be quite Militant and assertive about this, exactly how I don't know, we have to get thinking.

 

[slysaint]

The IAPT lead is Felicity Dorman who has a blog which accepts comments:
https://www.england.nhs.uk/mentalhealth/2016/10/20/felicity-dorman/

 

[Invisible Woman]

....maybe a joint effort to write a letter and compile and information pack that is given to all health care professionals or authorities we come across. In my personal opinion, giving out information on ME, the latest research etc does not have any effect on the vast majority of health practitioner, it would imagine in mist cases it gets cast aside and seen as just another patient who has been looking up stuff on the internet.

True. And still it would be each individual standing alone in front of an authority figure who could very easily take it out on them and make their lives more difficult. Also, those health care professionals most likely to listen are probably the ones who are most open minded and fair in their dealings with patients anyway.

There will be a great number of patients who are afraid to speak out for fear of what will happen next. It is not unheard of for ME patients to be crossed off doctors lists for no reason at all, let alone challenging them.

It needs to be something that an individual patient or carer cannot be punished for.

 

[Molly98]

True. And still it would be each individual standing alone in front of an authority figure who could very easily take it out on them and make their lives more difficult. Also, those health care professionals most likely to listen are probably the ones who are most open minded and fair in their dealings with patients anyway.

There will be a great number of patients who are afraid to speak out for fear of what will happen next. It is not unheard of for ME patients to be crossed off doctors lists for no reason at all, let alone challenging them.

It needs to be something that an individual patient or carer cannot be punished for.

Yes @Invisible Woman so much of what you say is true here.
What I wonder is what would be their response/reaction if say a few hundred or more up and down handed them the same information at the same time. Would they strike us all off their patient lists like naughty children expelled at school, if this would occur it is likely to make quite a news story and get much needed publicity. And I do wonder in reality what have the many of us got to lose if our GP's do little or nothing to help us already? we perhaps need to research into what happens if you get struck off a GP's list , what are the NHS's obligations if any under such circumstances, are there possibilities to get medication and GP treatment online

 

[Dx Revision Watch]

Yes @Invisible Woman so much of what you say is true here.
What I wonder is what would be their response/reaction if say a few hundred or more up and down handed them the same information at the same time. Would they strike us all off their patient lists like naughty children expelled at school, if this would occur it is likely to make quite a news story and get much needed publicity. And I do wonder in reality what have the many of us got to lose if our GP's do little or nothing to help us already? we perhaps need to research into what happens if you get struck off a GP's list , what are the NHS's obligations if any under such circumstances, are there possibilities to get medication and GP treatment online

The information about being struck off a GP list - I posted this in a members only thread before Christmas.

Give me half an hour and I'll post it here.

 

[Molly98]

And if a large group of us did all get struck off well that may well be good evidence for a future legal action on the basis of disability discrimination as well as a failure of their duty, especially if up and down the country we were meticulous in recording evidence and especially once the research show conclusive proof that this BPS model is an absolute sham.

 

[Dx Revision Watch]

• Practices should never remove patients from their list because their treatment is too costly.
  There are never any grounds for removing patients because of cost. Where the costs of treating an individual patient are higher than anticipated, adequate mechanisms exist to enable doctors to seek and be granted an increase in their prescribing budget
• Practices should never remove patients because they are suffering from a particular clinical condition
• Practices should never remove patients on grounds of age. Looking after patients “from the cradle to the grave” is the essence of general practice. Some, but by no means all, elderly patients may have an increased need for medical attention. This is recognised in higher capitation weighting for older patients and normally also in the formula for allocating prescribing budgets.
  Sometimes it is not the patients themselves but carers, particularly staff of private nursing and residential homes, who can generate excessive and inappropriate demand for services from the doctor or practice. In these cases the GPC recommends that the practice attempts to resolve the problems through the in-house procedure or using the help of the LMC and the PCO or NHS England
• Practices should never remove patients on grounds of race, gender, social class, religion, sexual orientation or appearance.'

https://www.bma.org.uk/advice/emplo...e-provision/removal-of-patients-from-gp-lists


However:

http://www.nhs.uk/chq/Pages/2556.aspx?CategoryID=68&SubCategoryID=158

What should I do if my GP removes me from their list?

GP practices may apply to remove patients from their list if the relationship between patient and GP has broken down.

Your GP will normally explain the problem to you and try to resolve it. They may ask to see you or may write to you. If the problem can't be resolved, the GP will normally advise you in writing that you may be removed from their list.

Patients cannot be removed from a GP's list because they've made a complaint. However, the basis of the complaint may mean that the relationship between patient and GP has already broken down.

If a patient has been violent or abusive, or has behaved in a threatening way towards their GP or a member of staff and the police have been involved, they may be removed from their GP's list immediately without warning.

Your GP's practice leaflet may explain their policy for removing patients from their list.

Moving out of your GP's catchment area
You may also be removed from your GP's list if you move out of the area covered by their practice.

If you're removed from your GP practice's list, you may need to register with another GP practice. You will be given 30 days in which to make alternative arrangements.

Getting a new GP
You may choose to register with a different GP practice, but the practice does not have to accept you. This is the same for anyone registering with a GP – it's not related to your removal from your former practice's list. It may be because you live outside the practice's catchment area or because the practice is not accepting new patients at that time.

A practice cannot refuse you unless it has reasonable grounds for doing so. These must not relate to race, gender, social class, age, religion, sexual orientation, appearance, disability or a medical condition. It must also give you reasons for its decision in writing.

If you've been removed from your GP's list and you haven't yet registered elsewhere, your NHS England area team can find you another GP.

For more information, see:

• How do I register with a GP?
• How do I change my GP?

What if I need treatment?
If you need emergency treatment or have treatment more than once a week, you can get treatment from your current GP until your condition improves or until a new GP practice accepts you.

Patients who have been removed from their GP's list because of violence are only entitled to emergency treatment if their GP thinks it's clinically necessary.

What if I need treatment?
If you need emergency treatment or have treatment more than once a week, you can get treatment from your current GP until your condition improves or until a new GP practice accepts you.

Patients who have been removed from their GP's list because of violence are only entitled to emergency treatment if their GP thinks it's clinically necessary.

Other family members
If you're removed from your GP's list, it won't necessarily affect other members of your family. However, this may depend on why you've been removed from the list. For example, if you've moved out of your GP's area, other family members will also need to register with a new GP.

Read the answers to more questions about NHS services and treatments.

Further information:

• How do I change my GP?
• How do I make a complaint about my GP?
• How do I register with a GP?
• Conditions and treatments
• Pharmacy and medicines
• Find your local GP
• Find your local CCG
• NHS complaints

Page last reviewed: 06/05/2015

Next review due: 15/05/2018

 

[Countrygirl]

Well, I have only just caught up on this.
What a load of utter bollocks, but very scary bollocks this is.

If I am going to be labelled as having a mental Health condition I am damn well choosing with one and I go all out for Oppositional Defiant disorder. none of this lame MUS FS PPS shit for me.

I am oppositional and defiant to any health professional or psychobabbler who thinks they have the right to label me, or attempts to treat me with their voodoo.

And I though psychotherapist were suppose to be caring, empathic and good listeners, it seems to me that most of them involved with this have a massive blind spot to the abusive side of their personality where they completely FAIL with a big fat F to listen to what the client is saying and take a truly condescending, paternalistic approach which totally belittles and disrespects the clients true experience, it is so patronising.
They do not recognise the autonomy of the patient.

Their failure to acknowledge the physical basis of our symptoms and put it all down to psychosomatic is abusive as they are using their position of power to enforce their subjective opinion over the client against the client's will and label the client against their will.

Quite Frankly calling the condition I suffer with ( ME) as a psychosomatic or functional condition is abusive and offensive to me, particularly because of how badly we have been treated and how much we have suffered as a community at the hands of psychobabblers.

I do not think that a powerful group who has caused great harm, suffering and discrimination to a marginalised vulnerable group should have any right what so ever in determining and labelling that group and certainly not in treatment. I don't know if there is anywhere else in Western society that this is still considered acceptable anymore.

How is it right that those who have caused us harm in the first place continue to choose how to define us and how to treat us and that definition is used in a derogatory way, to treat us as less than, and less deserving as those that have the label of a 'real' physical health condition, as if we are some inferior species and labelling us in this way leads to further discrimination, ridicule and unfair treatment.

These Therapists have been brainwashed and then want to inflict their brainwashing on us. They are utterly blind to their own prejudices and faulty beliefs. it wouldn't be so bad if the faulty beliefs were about them but they are not they are about us and then they are given free reign to try out their little experiments


I think we have to take a stand against this, in a collective organised way

A standard letter that all of us should give to GP's etc if this approach is recommended would be a start, as would reaching out to fibromyalgia suffers who look like they are going to be treated in the same way, the more of us there are the harder to ignore.

Rant over

This is the stuff of which Devon's Monstrous Regiment of Women are made!

Well said comrade!

It is about time we got our heads together again.

 

[Invisible Woman]

And I do wonder in reality what have the many of us got to lose if our GP's do little or nothing to help us already? we perhaps need to research into what happens if you get struck off a GP's list , what are the NHS's obligations if any under such circumstances, are there possibilities to get medication and GP treatment online

I think many of us are just too vulnerable for this. No GP will make life difficult, if not impossible, in dealings with social services, DWP, Benefits Agency, employers (for those still able) etc. Then there are the patients who have other conditions that need to be monitored.

What about going straight to the top: an open letter and info package sent to the GMC, the Royal College of GPs, the Royal College of Psychs (yep - that'd land on the desk of Guess Who), the Minister of Health, NICE, NHS England?

Could we get a letter published in journals for GPs?

Maybe we could get signatories who support the letter and acknowledge it speaks for them - that would be us. Like a petition but not. Just showing the weight of numbers behind it.

 

[Countrygirl]

I think many of us are just too vulnerable for this. No GP will make life difficult, if not impossible, in dealings with social services, DWP, Benefits Agency, employers (for those still able) etc. Then there are the patients who have other conditions that need to be monitored.

What about going straight to the top: an open letter and info package sent to the GMC, the Royal College of GPs, the Royal College of Psychs (yep - that'd land on the desk of Guess Who), the Minister of Health, NICE, NHS England?

Could we get a letter published in journals for GPs?

Maybe we could get signatories who support the letter and acknowledge it speaks for them - that would be us. Like a petition but not. Just showing the weight of numbers behind it.

This indeed sounds the safer way to proceed as it will avoid the victimisation of patients.

We need to pick our target authorities and get together in the privacy of a group setting.

Would people like Prof JE be prepared to sign and maybe others?

Has anyone notified David Tuller? He could compose a brilliant article that would provide considerable clout.

Should this be discussed further in a 'members' only' thread.?

 

[CFS_for_19_years]

"The aim of the current study was to find out which umbrella term patients
with chronic fatigue syndrome (CFS) preferred, that could be
used to describe not only their condition, but also illnesses such as IBS
and non-cardiac chest pain.

There is no "umbrella" term for all of these illnesses.

They did the survey using a forced set of choices. (Look up the term "forced choice question": Would you like to drink a salmon smoothie on Tuesday or Wednesday?)

Then they come back and so, "Oh, look these CFS patients really like the terms ABC, XYZ, FFS" when they know that very few people will wonder how the survey was done.

Their "survey" is just (pick one):
a. Bullshit
b. More shit
c. Piled higher and deeper shit.

See how easy that was?

The terms included in this survey were:

1) Complex Physical Symptoms, 2) Functional Symptoms, 3) Functional Somatic Syndrome,
4) Functional Syndrome, 5) Bodily Distress Disorder, 6) Bodily Distress
Syndrome, 7) Medically Unexplained Symptoms, 8) Medically Unexplained
Physical Symptoms, 9) Persistent Physical Symptoms, 10)
Somatoform Disorder, 11) No preference/don't know, and 12) Other.

12: Other: All of you can f*** off and leave us ME/CFS patients alone.

 

[Molly98]

This is the stuff of which Devon's Monstrous Regiment of Women are made!

Well said comrade!

It is about time we got our heads together again

Yes we need to @Countrygirl, I have been missing in action for a week or so, will PM you later. I loved the suffragette photos that you posted by the way, they were just brilliant !

 

[Molly98]

What about going straight to the top: an open letter and info package sent to the GMC, the Royal College of GPs, the Royal College of Psychs (yep - that'd land on the desk of Guess Who), the Minister of Health, NICE, NHS England?

Could we get a letter published in journals for GPs?

Maybe we could get signatories who support the letter and acknowledge it speaks for them - that would be us. Like a petition but not. Just showing the weight of numbers behind it.

I like all of these Ideas, good thinking @Invisible Woman.
I do like the idea of joint writing articles/papers for Journals that GP's and other medical professionals will see, if this is possible.
But they are all good ideas worth developing and persuing.