UK House of Lords/ House of Commons Questions

Barry said:
I've had a reply from Theresa Villiers, which clarifies she is asking the question because a constituent raised the issue. She does say she has no real understanding of PACE. I have thanked her for her honest reply, and included some information I hope might spur her to learn more. A link to the Hansard transcript of Carol Monaghan's debate; a link to the much-signed open letter; and a link to the JoHP special edition, pointing out @Jonathan Edwards' contribution as a good starting point.

It may all fall on stony ground, but then again it might not. It would be great if she decided to dig deeper and wanted to get to the truth.
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Send her the PACE briefing document as well now it's available?
 
https://www.parliament.uk/business/...s/written-question/Commons/2018-04-13/135426/

Ruth George

To ask the Secretary of State for Health and Social Care, how many hours of training on Fibromyalgia are included in the syllabus for (a) a medical degree, (b) GP training (c) a nursing degree and (d) a physiotherapy degree.

https://www.parliament.uk/business/...s/written-question/Commons/2018-04-13/135844/

Alex Sobel

To ask the Secretary of State for Health and Social Care, what plans he has to raise (a) awareness of and (b) accessibility to support for people suffering from myalgic encephalomyelitis.
 
Source: UK House of Commons
Date: April 18, 2018
URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-04-13/135426/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Fibromyalgia
------------

Ruth George

To ask the Secretary of State for Health and Social Care, how many hours
of training on Fibromyalgia are included in the syllabus for (a) a medical degree, (b) GP training (c) a nursing degree and (d) a physiotherapy degree. [135426]

Stephen Barclay

The Department does not hold centrally information on the number of hours of training on specific conditions by profession.

Curricula for undergraduate medical education are set by individual medical schools, emphasising the skills and approaches that a doctor must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients.

The curriculum for training as a general practitioner is set by the Royal College of General Practitioners and educates trainees in identifying and managing those conditions most common to primary care.

This curriculum includes outcomes or objectives relating to the management of musculoskeletal problems and core competencies relating to pain management.

All medical education has to meet standards set by the General Medical Council (GMC), which is an independent statutory body. The GMC has the general function of promoting high standards of education and co-ordinating all stages of education to ensure that medical students and newly qualified doctors are equipped with the knowledge, skills and attitudes essential for professional practice.

Education providers that deliver courses such as nursing or physiotherapy must ensure the relevant regulator is satisfied that their proposed course will deliver graduates who possess the required knowledge and expertise of a newly qualified professional. For nursing, education providers must meet criteria set by the Nursing and Midwifery Council. The professional regulator for physiotherapists is the Health and Care Professions Council.
 
MeSci said:
Under the terms of their contract with NHS England, general practitioner practices are required to keep adequate records of the attendance and treatment of all their patients
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:rofl::rofl::rofl: I really wish that were true. I bought a complete set of my GP notes and they were dreadful! I had notes from other people mixed in with mine. Operation results, letters and notes were not summarised so they effectively ceased to exist as far as doctors were concerned so they assumed for decades that I was simply lying about my medical history. Surgeons had used obfuscation to hide what they found and how long I'd been ill for beforehand. They couldn't tell their left from their right. I had organs which were removed, put back, taken out again, put back in, then taken out again (Edit : according to the records, I mean). They were in many places a complete fiction.
 
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Arnie Pye said:
:rofl::rofl::rofl: I really wish that were true. I bought a complete set of my GP notes and they were dreadful! I had notes from other people mixed in with mine. Operation results, letters and notes were not summarised so they effectively ceased to exist as far as doctors were concerned so they assumed for decades that I was simply lying about my medical history. Surgeons had used obfuscation to hide what they found and how long I'd been ill for beforehand. They couldn't tell their left from their right. I had organs which were removed, put back, taken out again, put back in, then taken out again (Edit : according to the records, I mean). They were in many places a complete fiction.
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So are mine. This is from an entry of mine on Phoenix Rising from 2015:

"I had to fight hard to get copies of my notes sent to me. I got a batch from the previous GP. They are so chaotic I'm perhaps not surprised that GPs from there seemed to have little idea what was going on with me. Recently I finally typed up those of particular interest in a more coherent form. That was how I finally discovered that my first bout of severe hyponatraemia (dismissed on the phone, and recorded in my notes, as a panic attack!) came soon after I was prescribed an ACE inhibitor. By then I had suffered a fracture and dental damage, plus 4 days in hospital with another severe episode, and had been forced to change GPs by the appalling behaviour of doctors at the old one, aggressively blaming me for the illness, following the lead of the hospital consultant. This adverse drug effect has cost me dear in terms of reducing my ability to work. I was just keeping my head above water until then. I am now off it after 7 years...

When I asked for the hospital notes after my admission in 2010 I was referred repeatedly to the hospital's legal department!

Finally I got them - and more - from my new GP. They are full of errors, even attributing things to me that I have most certainly never said, portraying me in a way that friends would not recognise. Some of it is insulting, and in another context might be libellous.

All my childhood records are missing. (removed reference to someone but probably not in time! No need to reply!)

One thing that might be useful - and I have found particularly useful - is test results. My doctors have sometimes clearly not understood them. Now that I have them, I can look them up in the downloaded handbook of the local hospital that they use."

There are also many things completely missing, such as what vaccinations I've had, what I've had removed, etc.
 
Source: UK House of Commons

Date: April 23, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-04-13/135844/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

Alex Sobel

To ask the Secretary of State for Health and Social Care, what plans he has to raise (a) awareness of and (b) accessibility to support for people suffering from myalgic encephalomyelitis. [135844]

Steve Brine

Information is available for the general public via the NHS Choices website on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

Clinical commissioning groups (CCGs) are responsible for commissioning many healthcare services to meet the needs and requirements of their local population including those for people with ME/CFS. In doing so, CCGs will commission services that reflect the needs of local people and that support improvements in health and healthcare outcomes.

The National Institute for Health and Care Excellence's (NICE) clinical guidance on ME/CFS sets out best practice for treatment, care and support. On 20 September 2017, NICE announced its decision to undertake a full update of this guideline, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. More information can be found at the following links:

http://www.nice.org.uk/guidance/cg53

http://www.nice.org.uk/news/article...ance-on-the-diagnosis-and-treatment-of-cfs-me
 
MeSci said:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-05-01/HL7468/

The Countess of Mar

To ask Her Majesty's Government what are the recovery rates of patients with myalgic encephalomyelitis who have received treatment under the Improving Access to Psychological Therapies programme.
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A very incisive question, to which no doubt there will be a very woolly and BS answer. But the answer will be on the formal record, which I think is often the point of asking these questions.
 
Stumbled across this, which I assume is in reference to this, https://www.nhs.uk/news/medical-pra...ildren-chronic-fatigue-syndrome-study-claims/

Medical Treatments:Written question - HL7246
Asked by The Countess of Mar
Asked on: 24 April 2018
Department of Health and Social Care
Medical Treatments
HL7246
To ask Her Majesty's Government why the NHS Choices website includes an article on the Lightning Process when this treatment is not available on the NHS.

Answered by: Lord O'Shaughnessy
Answered on: 08 May 2018

In addition to providing an overview of the symptoms, diagnosis and treatment of a wide range of conditions, NHS Choices also seeks to provide a balanced view of emerging, new or controversial treatments that are reported in the press, to help the public understand the facts of the story. In September 2017 the ‘Behind the headlines’ section of the NHS Choices website included a piece on the Lightning Process for treating chronic fatigue syndrome, following national press coverage which reported the findings of trial of this treatment.
 
Andy said:
In September 2017 the ‘Behind the headlines’ section of the NHS Choices website included a piece on the Lightning Process for treating chronic fatigue syndrome, following national press coverage which reported the findings of trial of this treatment.
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If it's a behind the headlines piece, why can't it include something about PACE being discredited. That's certainly happened behind the headlines.
 
Skycloud said:
If it's a behind the headlines piece, why can't it include something about PACE being discredited. That's certainly happened behind the headlines.
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They don't seem to feel a responsibility to engage critically with psychosocial CFS research.

Here's their SMILE 'analysis', where they fail to mention the problems with the trial falsely claiming to be prospectively registered, when really it swapped primary outcomes after half the participants had already started the trial. https://www.nhs.uk/news/medical-pra...ildren-chronic-fatigue-syndrome-study-claims/
 
Source: UK House of Lords

Date: May 15, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-05-01/HL7468/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

The Countess of Mar

To ask Her Majesty's Government what are the recovery rates of patients with myalgic encephalomyelitis who have received treatment under the Improving Access to Psychological Therapies programme [HL7468].

Lord O'Shaughnessy

This information is not available.
 
MeSci said:
The Countess of Mar

To ask Her Majesty's Government what are the recovery rates of patients with myalgic encephalomyelitis who have received treatment under the Improving Access to Psychological Therapies programme [HL7468].

Lord O'Shaughnessy

This information is not available.
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And there we have it. All that money spent on poorly evidenced treatment clinics without due care for their responsibility to patients and the tax payer.
 
MeSci said:
Source: UK House of Lords

Date: May 15, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-05-01/HL7468/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

The Countess of Mar

To ask Her Majesty's Government what are the recovery rates of patients with myalgic encephalomyelitis who have received treatment under the Improving Access to Psychological Therapies programme [HL7468].

Lord O'Shaughnessy

This information is not available.
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"This information is not available" - what does that actually mean exactly? Why is it not available? The data has to be available to them surely, because such data ... just has to be - how can it not be? So the question is: Why can the requested information not be queried out of that data? I suspect it readily can be if the will is there; my conclusion therefore is that the will is most definitely not there. It's a fob off.

I'll now day-dream about a court of enquiry coming to the same conclusion, given the written evidence.
 
It should be available:
from the IAPT Manual:
"
In line with the implementation of The Five Year Forward View for Mental Health, evidence-based treatment will be extended to people with comorbid LTCs or MUS (See Section 11.2). The newly developed IAPT-LTC services will focus on people who have LTCs in the context of depression and anxiety disorders and will also aim to treat the following conditions:
 irritable bowel syndrome
 chronic fatigue syndrome
 MUS not otherwise specified."

"Irritable bowel syndrome*
A common functional gastrointestinal disorder. It is a chronic, relapsing and often lifelong disorder, characterised by the presence of abdominal pain or discomfort associated with defaecation, a change in bowel habit together with disordered defaecation (constipation or diarrhoea or both), the sensation of abdominal distension and may include associated non-colonic symptoms. May cause associated dehydration, lack of sleep, anxiety and lethargy, which may lead to time off work, avoidance of stressful or social situations and significant reduction in quality of life.

Chronic fatigue syndrome*
Comprises a range of symptoms that include fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain. A person’s symptoms may fluctuate in intensity and severity, and there is also great variability in the symptoms different people experience. It is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. Diagnosis depends on functional impairment and the exclusion of other known causes for the symptoms.

MUS not otherwise specified*
Distressing physical symptoms that do not have an obvious underlying diagnosis and/or pathological process."

"Chronic fatigue syndrome Graded exercise therapy, CBT* NICE guideline: CG53"

on page 30 it has how outcomes are assessed by problem descriptor (so it must be noted somewhere that the person is being 'treated' for CFS)

"Chronic fatigue syndrome PHQ-9 Chalder Fatigue Questionnaire GAD-7 WSAS"

https://www.york.ac.uk/healthsciences/pc-mis/news-articles/IAPT Manual_30OCT17.pdf

"
Problem descriptor
This describes the specific problem being assessed by the IAPT service for a given
referral (for example, Obsessive Compulsive Disorder). The terminology was changed
from ‘provisional diagnosis’ as it was felt that a formal diagnosis cannot always be made
at initial contact with a patient, and that this sometimes only becomes apparent over the
course of several appointments. For this reason, the problem descriptor can be updated
in each submission. In the analysis of outcomes, the problem descriptor used is the last
recorded one."
https://files.digital.nhs.uk/56/88C18F/iapt-month-feb-2018-exec-sum.pdf


And similar information here:

About IAPT services for people with LTCs and MUS

"
treatment choice should be guided by the person’s problem descriptor(s), taking
account of their choice and preferences"
"
Problem descriptor:A way of describing a
person’s presenting mental health problems as assessed by an IAPT service. The descriptor
corresponds with ICD-10 codes and should be based on the nature, severity and duration of
symptoms, and their impact on functionality.

Descriptors are important for identifying the appropriate NICE-recommended intervention.
Services can enter multiple problem descriptors, though the primary problem descriptor should characterise the leading problem and reflect the treatment being delivered."

https://www.rcpsych.ac.uk/pdf/IAPT-LTC_short_guide.pdf

also in the above it links to:
https://digital.nhs.uk/data-and-inf...ng-access-to-psychological-therapies-data-set
"The Improving Access to Psychological Therapies (IAPT) Data Set collects information about adults in contact with psychological therapy services".

so the information is there.......unless it's like QMUL where the relevant specialist is not available to extract the data(?)

eta: time for an FOI?
 
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