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UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022
- Thread starter Andy
- Start date
Jonathan Edwards
Senior Member (Voting Rights)
A: What do you do with nuisance patients boss?
B: Empathise with them until they are fed up to the back teeth with being empathised with and go away. And put the few that like the empathy on your patient advisory group.
A: So how do you show empathy?
B: You say how much you empathise with their wanting an explanation for their real symptoms and explain that they are not just unexplained but not yet explained. They are obviously real (empathising) so doctors will try to explain.
A: So you offer to set up research to explain the symptoms?
B: Well you can sort of imply that, to empathise, and say you want to find new research avenues but really you want to set up research into how to do more empathising. That gets rid of the patients quicker you see. Not that you want to stop the patients coming in the first place - that means you get paid to do the job - just that after you have got paid you want to be shot of them. And keep a few to have on your advisory panel.
A: Thanks. I can see that you empathise - with your clinical colleagues' plight.
B: Empathise with them until they are fed up to the back teeth with being empathised with and go away. And put the few that like the empathy on your patient advisory group.
A: So how do you show empathy?
B: You say how much you empathise with their wanting an explanation for their real symptoms and explain that they are not just unexplained but not yet explained. They are obviously real (empathising) so doctors will try to explain.
A: So you offer to set up research to explain the symptoms?
B: Well you can sort of imply that, to empathise, and say you want to find new research avenues but really you want to set up research into how to do more empathising. That gets rid of the patients quicker you see. Not that you want to stop the patients coming in the first place - that means you get paid to do the job - just that after you have got paid you want to be shot of them. And keep a few to have on your advisory panel.
A: Thanks. I can see that you empathise - with your clinical colleagues' plight.
Barry
Senior Member (Voting Rights)
Psychiatrist 1: How do you empathise?
Psychiatrist 2: I'm told that if you need to ask there's no point asking.
Psychiatrist 1: So how do you empathise?
Psychiatrist 2: What did I just tell you! I couldn't get an answer either, when I asked.
ETA: Not aimed at all psychiatrists, there are many good ones. Primarily aimed at the BPS kind.
Psychiatrist 2: I'm told that if you need to ask there's no point asking.
Psychiatrist 1: So how do you empathise?
Psychiatrist 2: What did I just tell you! I couldn't get an answer either, when I asked.
ETA: Not aimed at all psychiatrists, there are many good ones. Primarily aimed at the BPS kind.
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I do hope some of our members will participate in that workshop. @PhysiosforME
A fair question.
Is the Not Yet just a sop to placate critics and deceive the ignorant, while carrying on with the same BPS crap they always have? Or is it a genuine shift to a less arrogant certainty about their understanding?
Dx Revision Watch
Senior Member (Voting Rights)
"Medically Not Yet Explained Symptoms (MNYES)"
Another one to add to the Alphabet Soup?
Another one to add to the Alphabet Soup?
Dx Revision Watch
Senior Member (Voting Rights)
My favourite is "physiologically explainable symptoms":
https://mentalhealthpartnerships.com/category/innovation/other/physiologically-explainable-symptoms/
ie "explainable" in terms of hyperarousal of the autonomic nervous system.
I'm still waiting for "Persistent idiopathic somatic symptoms (PISS)".
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Dx Revision Watch
Senior Member (Voting Rights)
Note this Joint Commissioning Panel for Mental Health page on "Physiologically explainable symptoms":
http://www.jcpmh.info/commissioning...th-care/physiologically-explainable-symptoms/
which is no longer available (or if it is, it is timing out for loading the pages) had read, in 2017-2021:
WayBack Machine archived content:
https://web.archive.org/web/2021011...th-care/physiologically-explainable-symptoms/
[My bolding in the first para]
Physiologically explainable symptoms
"Physical symptoms which are not caused by physical disease or injury are very common, and can become very distressing and disabling. They can be caused by over-use (e.g. ‘cramp’ or tiredness) or over-breathing (e.g. ‘pins and needles’ or giddiness) but are usually explained by natural physiological processes.1 They are often explainable by reference to very well established physiological explanations of stress on the body, e.g. lactate build-up in muscles with over-use or acid-base imbalances from hyperventilation causing giddiness or tingling. They can be a result of an interaction between the physical trigger for the symptoms (e.g. a virus or an acute injury) and an individual’s cognitive, behavioural and emotional responses which may perpetuate these symptoms. Many patients with these symptoms meet criteria for a recognised syndrome such as chronic fatigue syndrome, irritable bowel syndrome, non-cardiac chest pain and fibromyalgia. They can also be a result of anxiety or depression which needs treatment in its own right.
Describing these symptoms as medically unexplained is incorrect, confusing and even frightening to those experiencing and not understanding them – more empowering, recovery-focused approaches are evidence-based.
Why specific symptoms occur may be explained by the context and prior experience of the person concerned – so may have psychological significance e.g. the interpretation of chest pain as due to a heart attack when a close relative has recently died of this. Persistent and more severe symptoms – often referred to as somatoform disorders – can benefit from intervention, e.g. cognitive behaviour therapy or graded exercise therapy, and even more complex ones from liaison services."
https://web.archive.org/web/2021022...lly-explainable-symptoms/what-is-the-problem/
What is the problem?
Physical symptoms which are not caused by physical disease or injury are extremely common with many people experiencing them most days (e.g. headache, cramp, tiredness) but not normally requiring medical intervention. However quite commonly, people present and re-present to primary care or emergency departments because of concern that these physical symptoms may be caused by a physical disease.
19 per cent of new primary care GP appointments, especially frequent attenders, were found to be for people whose symptoms were previously described as ‘medically unexplained symptoms’ (MUS) but may be better described as physiologically explainable symptoms (PES)2-3.
In secondary care (physical health trusts/services), a number of studies in both the UK and the United States have shown that up to 50 per cent of sequential new attenders at outpatient services have PES (‘MUS’). For example, percentage with PES (‘MUS’) in new attenders at the outpatient department, King’s College Hospital, London4 by specialty were found to be:
https://web.archive.org/web/2021022...ally-explainable-symptoms/what-do-users-want/
What do service users and carers want?
Management of physical symptoms which are not due to physical disease or injury can be complex but patients and carers consistently say that they want information (www.rcpsych.ac.uk/mentalhealthinfo/improvingphysicalandmh.aspx), explanation and good services6.
https://web.archive.org/web/2021012...siologically-explainable-symptoms/what-works/
What works?
Primary care interventions focus on the consultation style adopted by professionals rather than defined psychological interventions (summarised in Improving Access to Psychological Therapies (IAPT) guidance7 and the recent Forum for Mental Health in Primary Care guidelines8.
Symptom reattribution has been found to be a successful form of intervention for people with PES (‘MUS’). This is a structured consultation delivered by GPs which provides a psychological explanation to patients with somatised disorder9. However, while it does improve doctor-patient communication, it may not improve patient outcomes10.
Identification and management of symptoms and treatment of any associated symptoms of depression or anxiety in accordance with the relevant National Institute for Health and Clinical Excellence (NICE) guidelines can be beneficial to those disorders. However, successful psychological treatment is usually dependent on treatment models specific to the PES (‘MUS’) delivered by therapists with training in this area.
Specialist services where persistent symptoms present are more successful where they focus on specific syndromes, e.g. chronic fatigue syndrome or irritable bowel syndrome.
Liaison teams provide multidisciplinary care for patients presenting with more complex PES (‘MUS’) including associated high levels of disability and high levels of distress11.
Pain, fatigue or more generic clinics, e.g. rheumatology or G-I, may have psychological intervention integrated within them; this collaborative model may be more acceptable to patients presenting and improve identification and management
A meta-analysis of treatment for chronic fatigue syndrome suggests that both CBT and graded exercise therapy are promising treatments, with CBT possibly the more effective treatment in patients who have co-morbid anxiety and depressive symptoms12.
Psychological treatments are effective for irritable bowel syndrome (including CBT and psychotherapy, either alone or in conjunction with antidepressant medications)13, fibromyalgia,14 and multisomatoform disorder (brief psychodynamic psychotherapy)15.
Positive outcomes depend on:
https://web.archive.org/web/2021012...ically-explainable-symptoms/cost-information/
What information is there on cost?
Estimated cost to the NHS associated with PES (‘MUS’) of £3.1 billion17. However, about half the cost (£1.2 billion) was spent on the inpatient care of less than 10 per cent of people with PES (‘MUS’) – a relatively small number of people receive very expensive and inappropriate care.
While the economic case for CBT is most compelling if resources are targeted at those with full somatoform disorders, the case for also tackling sub-threshold conditions is strong. All models are likely to be cost saving in the long-term.
Cost models rely on evidence of effectiveness from studies in the United States, which may not be easily generalizable to an English context. However, sensitivity and threshold analyses indicate that, even assuming very limited improvements in health outcomes, investing in actions to tackle somatoform disorders remains cost-effective from a societal perspective under most scenarios.
Pathways can be developed for ‘functional/MUS/physiological explainable symptoms’ with evidence for cost savings being greatest at the severe end using collaborative care.
More information is required on the relative effectiveness of e-learning compared to face-to-face learning as a way of raising GP awareness, because costs are substantially lower.
http://www.jcpmh.info/commissioning...th-care/physiologically-explainable-symptoms/
which is no longer available (or if it is, it is timing out for loading the pages) had read, in 2017-2021:
WayBack Machine archived content:
https://web.archive.org/web/2021011...th-care/physiologically-explainable-symptoms/
[My bolding in the first para]
Physiologically explainable symptoms
"Physical symptoms which are not caused by physical disease or injury are very common, and can become very distressing and disabling. They can be caused by over-use (e.g. ‘cramp’ or tiredness) or over-breathing (e.g. ‘pins and needles’ or giddiness) but are usually explained by natural physiological processes.1 They are often explainable by reference to very well established physiological explanations of stress on the body, e.g. lactate build-up in muscles with over-use or acid-base imbalances from hyperventilation causing giddiness or tingling. They can be a result of an interaction between the physical trigger for the symptoms (e.g. a virus or an acute injury) and an individual’s cognitive, behavioural and emotional responses which may perpetuate these symptoms. Many patients with these symptoms meet criteria for a recognised syndrome such as chronic fatigue syndrome, irritable bowel syndrome, non-cardiac chest pain and fibromyalgia. They can also be a result of anxiety or depression which needs treatment in its own right.
Describing these symptoms as medically unexplained is incorrect, confusing and even frightening to those experiencing and not understanding them – more empowering, recovery-focused approaches are evidence-based.
Why specific symptoms occur may be explained by the context and prior experience of the person concerned – so may have psychological significance e.g. the interpretation of chest pain as due to a heart attack when a close relative has recently died of this. Persistent and more severe symptoms – often referred to as somatoform disorders – can benefit from intervention, e.g. cognitive behaviour therapy or graded exercise therapy, and even more complex ones from liaison services."
https://web.archive.org/web/2021022...lly-explainable-symptoms/what-is-the-problem/
What is the problem?
Physical symptoms which are not caused by physical disease or injury are extremely common with many people experiencing them most days (e.g. headache, cramp, tiredness) but not normally requiring medical intervention. However quite commonly, people present and re-present to primary care or emergency departments because of concern that these physical symptoms may be caused by a physical disease.
19 per cent of new primary care GP appointments, especially frequent attenders, were found to be for people whose symptoms were previously described as ‘medically unexplained symptoms’ (MUS) but may be better described as physiologically explainable symptoms (PES)2-3.
In secondary care (physical health trusts/services), a number of studies in both the UK and the United States have shown that up to 50 per cent of sequential new attenders at outpatient services have PES (‘MUS’). For example, percentage with PES (‘MUS’) in new attenders at the outpatient department, King’s College Hospital, London4 by specialty were found to be:
- Chest (59%)
- Cardiology (56%)
- Gastroenterology (60%)
- Rheumatology (58%)
- Neurology (55%)
- Gynaecology (57%)
- Dental (49%)
- one in five new consultations in primary care,
- 7 per cent of all prescriptions,
- 25 per cent of outpatient care,
- 8 per cent of inpatient bed days, often repeat admissions, and
- 5 per cent of A&E attendances,
https://web.archive.org/web/2021022...ally-explainable-symptoms/what-do-users-want/
What do service users and carers want?
Management of physical symptoms which are not due to physical disease or injury can be complex but patients and carers consistently say that they want information (www.rcpsych.ac.uk/mentalhealthinfo/improvingphysicalandmh.aspx), explanation and good services6.
https://web.archive.org/web/2021012...siologically-explainable-symptoms/what-works/
What works?
Primary care interventions focus on the consultation style adopted by professionals rather than defined psychological interventions (summarised in Improving Access to Psychological Therapies (IAPT) guidance7 and the recent Forum for Mental Health in Primary Care guidelines8.
Symptom reattribution has been found to be a successful form of intervention for people with PES (‘MUS’). This is a structured consultation delivered by GPs which provides a psychological explanation to patients with somatised disorder9. However, while it does improve doctor-patient communication, it may not improve patient outcomes10.
Identification and management of symptoms and treatment of any associated symptoms of depression or anxiety in accordance with the relevant National Institute for Health and Clinical Excellence (NICE) guidelines can be beneficial to those disorders. However, successful psychological treatment is usually dependent on treatment models specific to the PES (‘MUS’) delivered by therapists with training in this area.
Specialist services where persistent symptoms present are more successful where they focus on specific syndromes, e.g. chronic fatigue syndrome or irritable bowel syndrome.
Liaison teams provide multidisciplinary care for patients presenting with more complex PES (‘MUS’) including associated high levels of disability and high levels of distress11.
Pain, fatigue or more generic clinics, e.g. rheumatology or G-I, may have psychological intervention integrated within them; this collaborative model may be more acceptable to patients presenting and improve identification and management
A meta-analysis of treatment for chronic fatigue syndrome suggests that both CBT and graded exercise therapy are promising treatments, with CBT possibly the more effective treatment in patients who have co-morbid anxiety and depressive symptoms12.
Psychological treatments are effective for irritable bowel syndrome (including CBT and psychotherapy, either alone or in conjunction with antidepressant medications)13, fibromyalgia,14 and multisomatoform disorder (brief psychodynamic psychotherapy)15.
Positive outcomes depend on:
- Provision of empowering ‘normalising’ physiological explanations of symptoms in primary, community and secondary care16.
- Where symptoms persist, offering prompt intervention using ‘low intensity’ or ‘high intensity’ psychological interventions based on a clear biopsychosocial understanding and formulation of these conditions
- Availability of specialist services (e.g. fatigue or pain services) or psychiatric liaison teams for further care especially where physical illness complicates, restoration of function has not occurred or where substantial acute service resources being used.
https://web.archive.org/web/2021012...ically-explainable-symptoms/cost-information/
What information is there on cost?
Estimated cost to the NHS associated with PES (‘MUS’) of £3.1 billion17. However, about half the cost (£1.2 billion) was spent on the inpatient care of less than 10 per cent of people with PES (‘MUS’) – a relatively small number of people receive very expensive and inappropriate care.
While the economic case for CBT is most compelling if resources are targeted at those with full somatoform disorders, the case for also tackling sub-threshold conditions is strong. All models are likely to be cost saving in the long-term.
Cost models rely on evidence of effectiveness from studies in the United States, which may not be easily generalizable to an English context. However, sensitivity and threshold analyses indicate that, even assuming very limited improvements in health outcomes, investing in actions to tackle somatoform disorders remains cost-effective from a societal perspective under most scenarios.
Pathways can be developed for ‘functional/MUS/physiological explainable symptoms’ with evidence for cost savings being greatest at the severe end using collaborative care.
More information is required on the relative effectiveness of e-learning compared to face-to-face learning as a way of raising GP awareness, because costs are substantially lower.
@Joan Crawford are you interested in this? Though from memory, the Steering Group members are very BPS biased with few lay members.
alktipping
Senior Member (Voting Rights)
i find it alarming that absolute tripe is paid for with taxpayers money supposedly to save taxpayers money . will these fraudsters ever be held to account for the massive amount of harm caused.
Joan Crawford
Senior Member (Voting Rights)
Arnie Pye
Senior Member (Voting Rights)
@Amw66
From your circular diagram posted on Twitter by Jon Stone it is clear that absolutely all symptoms are to be blamed on FND now, with just a very few exceptions. The only type of symptoms that don't appear are "Got hit in the head by a javelin", or "accidentally sliced their arm off with a chain saw", or "was climbing a tree and fell out of it, losing an eye in the process".
From your circular diagram posted on Twitter by Jon Stone it is clear that absolutely all symptoms are to be blamed on FND now, with just a very few exceptions. The only type of symptoms that don't appear are "Got hit in the head by a javelin", or "accidentally sliced their arm off with a chain saw", or "was climbing a tree and fell out of it, losing an eye in the process".
Perfect storm. Rebadging hysteria and impending benefit cuts and a deliberately overstretched NHS.
Cue conspiracy theories..
Snow Leopard
Senior Member (Voting Rights)
If you strip away the fancy graphics, the study is of low quality as it is a cross-sectional convenience study based entirely on questionnaires, so there is a high rate of participation bias, response bias. A better methodology would be to measure patterns of symptoms over time (prospectively) from a (randomly selected) community based cohort so that the kinetics of the associations can be studied.
To the contrary:
'are you perhaps complaining more than I might expect a person with a javelin injury to complain? Yes? FND
'did you perhaps not take appropriate precautions when chainsawing? Yes? then perhaps not FND, but certainly self-harm' - and mental health issues definitely co-occur with FND (see chart). And now, you are complaining about pain in your stub? If I recall correctly, that's CRPS, an FND. And numbness and tingling? Yep, the majority of people with FND complain of that, see the chart.
'are you perhaps dwelling on your tree-climbing mishap rather too much? Yes? PTSD - an FND co-occurrence (see chart). Complaining of 'visual problems'? Yes? A very common symptom of people with FND (see chart)
'