UK House of Lords/ House of Commons Questions

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-23/115273/
Layla Moran

To ask the Secretary of State for Work and Pensions, how many applications for Personal Independence Payments from people with Myalgic Encephalomyelitis have been rejected in (a) Oxford (b) Oxfordshire (c) Oxford West and Abingdon constituency in each of the last 5 years.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116537/

Thelma Walker

To ask the Secretary of State for Health, what plans his Department has to classify fibromyalgia as a long-term condition.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116541/

Thelma Walker

To ask the Secretary of State for Health, what support his Department provides to healthcare professionals for the diagnosis of fibromyalgia.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116543/

Thelma Walker

To ask the Secretary of State for Health, what steps his Department is taking to support research into fibromyalgia.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116544/

Thelma Walker

To ask the Secretary of State for Health, what steps the Government is taking to raise awareness of fibromyalgia among (a) healthcare professionals and (b) members of the public.
 
Answer to http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-23/115273/

Sarah Newton

The Department does not record disabling conditions of Personal Independence Payment (PIP) claimants at registration stage. Disabling conditions are recorded on the PIP Computer System only for those claimants who undergo a face to face or paper based assessment.

Therefore we are unable to provide the number of refused PIP applications which were made by people with Myalgic Encephalomyelitis.
 
Is it just me is that deliberate obfuscation?

So they know the number of people with ME who were refused PIP after having either a face to face, and they know the number refused after a paper based assessment, according to the answer given.

What they don't know is how many people made the original telephone call, but did not return the paperwork, because until they get the paperwork they don't have, officially, any idea why someone would be claiming. At this point no application has been made, application is made by returning filled in paperwork. But they seem to be implying that coz they don't know the number of people, with ME, who make the phone call but don't return the paperwork, that they have no information on how many applications are refused from pwME?

It's nonsense, they clearly don't want to answer so are attempting deflection, but it's nonsense that a more carefully worded question should sidestep.

It just goes to show the distain they hold for claimants, MP's, parliament, and probably pretty much everyone and everything.
 
http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3501/
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Pupils: Chronic Fatigue Syndrome
--------------------------------

The Countess of Mar

To ask Her Majesty's Government whether parental consent was obtained by school attendance officers before parents were sent letters by researchers for the study entitled Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics, published by the
British Medical Journal in 2011. [HL3501

Lord Agnew of Oulton

The department has no direct knowledge of the study entitled 'Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics', published by the British Medical Journal in 2011 or any activity undertaken by schools in connection with this study.
 
It is strange to answer that they have no "direct" knowledge of the study. That seems to imply that they have indirect knowledge. One wonders what would constitute direct or indirect knowledge within a departmental framework? The response suggests, perhaps incorrectly, that there is something they do not wish to disclose.
 
Adrian said:
Is this the one that Tuller wrote about as it didn't have ethical approval?
Click to expand...
It says

"The North Somerset & South Bristol Research Ethics Committee decided that the collection and analysis of data from children and young people seen by the CFS/ME specialist service were part of service evaluation and as such did not require ethical review by the NHS Research Ethics Committee or approval from the NHS R&D office (REC reference number 07/Q2006/48)."
 
MeSci said:
It says

"The North Somerset & South Bristol Research Ethics Committee decided that the collection and analysis of data from children and young people seen by the CFS/ME specialist service were part of service evaluation and as such did not require ethical review by the NHS Research Ethics Committee or approval from the NHS R&D office (REC reference number 07/Q2006/48)."
Click to expand...

Thats the one. They are developing a new service not analyzing service data
http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/
 
From Tuller's blog:

In her response, Professor Crawley also referenced top-level admiration for her work. “The project has been of great interest to the Department of Education who included it last year as an exemplar in their training for attendance officers in the UK,” she wrote. But whether or not education officials were impressed with Professor Crawley and her work was of course irrelevant to the question at hand, which was whether the study should have been considered research or service evaluation. It was not clear why Professor Crawley included this point, except perhaps to suggest that she had well-placed supporters.
Click to expand...

http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/

The Department of Education's response to Mar:

MeSci said:
http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3501/
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Pupils: Chronic Fatigue Syndrome
--------------------------------

The Countess of Mar

To ask Her Majesty's Government whether parental consent was obtained by school attendance officers before parents were sent letters by researchers for the study entitled Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics, published by the
British Medical Journal in 2011. [HL3501

Lord Agnew of Oulton

The department has no direct knowledge of the study entitled 'Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics', published by the British Medical Journal in 2011 or any activity undertaken by schools in connection with this study.
Click to expand...
 
But in answer to the COM's question

"Lord Agnew of Oulton

The department has no direct knowledge of the study entitled 'Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics', published by the British Medical Journal in 2011 or any activity undertaken by schools in connection with this study. Based on the results of this outreach project, school nurses in the local authority now routinely assess children missing school for fatigue"


http://bmjopen.bmj.com/content/1/2/e000252.reviewer-comments From EC herself in the peer review -

"The project has been of great interest to the Department of Education who included it last year as an exemplar in their training for attendance officers in the UK."


Guardian article at the time - https://www.theguardian.com/society/2011/dec/12/chronic-fatigue-syndrome-schools

'The Department for Education reacted cautiously to the findings, believing it unwise to draw any conclusions about the picture nationally from a study of just three schools, especially with a condition that is hard to diagnose accurately.

A spokesman said: "Absence from school, even for one day, is hugely detrimental to pupil's prospects. Where there is an underlying medical problem, schools and the local authority should work with parents to minimise the impact of the long term illnesses on a pupil's education." '


Who's telling the truth I wonder?
 
And regarding the answer to the Countess of Mar's question about the National Outcomes Database:

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3499/


If neither the DOH nor NHS England has oversight of the NOD, or responsibility for it, is it usual practice for outside bodies (ie the University of Bristol together with funding from Action for ME ) to commission and fund service evaluations of NHS services?

And why did the Department of Health fund EC and SC (via the NIHR https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184626/) to analyse the NOD information when these bodies apparently had no oversight or responsibility for the NOD? How could the DOH/NIHR possibly audit EC and SC's work effectively to ensure that public money was being well spent?

And which bright spark in the NHS/ Department of Health gave the go-ahead for the transfer of data, (from tens of thousands of child and adult patients), out of the NHS , away from any NHS oversight or responsibility, to the University of Bristol where it is now stored with restricted access because of the sensitive nature of the pseudo-anonymized data that the NOD contains and also presumably because of the risk that patients could potentially be re-identified?
 
The same answer given for 3 fibro questions (grouped)

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116537/

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116541/

http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116544/

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

[Written Answers]

Fibromyalgia; Fibromyalgia: Diagnosis; Fibromyalgia: Health Education
----------------------------------------------------------

Thelma Walker

To ask the Secretary of State for Health, what plans his Department has to classify fibromyalgia as a long-term condition. [116537]

To ask the Secretary of State for Health, what support his Department provides to healthcare professionals for the diagnosis of fibromyalgia.[116541]

To ask the Secretary of State for Health, what steps the Government is taking to raise awareness of fibromyalgia among (a) healthcare professionals and (b) members of the public. [116544]

Steve Brine

A long-term health condition (LTC) can be defined as a condition that cannot be cured but can be managed through the use of medication and/or therapy, and by that definition fibromyalgia is an LTC.

Diagnosing fibromyalgia can be difficult as there is no specific diagnostic test that can be used, and the symptoms can vary from person to person. Diagnosis is usually made by taking a medical history, checking symptoms and carrying out a physical examination. Blood tests, x-rays and other scans may be used to rule out medical conditions with
similar symptoms to fibromyalgia.

The Royal College of General Practitioners (RCGP) curriculum includes training in musculoskeletal conditions, and as such, general practitioner (GP) training can include fibromyalgia. A key component of a trainee GP's final assessment, alongside the Clinical Skills Assessment and Workplace Based Assessment, is the applied knowledge test
(AKT). The AKT is a summative assessment of the knowledge base that underpins independent general practice in the United Kingdom within the context of the National Health Service. The content guide for the RCGP, which serves to prepare trainees for the test, includes a specific reference to a required knowledge of fibromyalgia. The AKT content guide can be found at the following link:

http://www.rcgp.org.uk/training-exa...~/media/D96EB4E0188E4355BCC9221B55859B08.ashx
(opens as a pdf)

A range of support exists to help GPs identify the signs and symptoms of fibromyalgia in primary care. This includes the Map of Medicine, an online evidence-based guide and clinical decision support tool for clinicians which has a fibromyalgia and chronic pain pathway to support diagnosis and referral, an e-learning course developed by the Royal
College of GPs and Arthritis Research UK on musculoskeletal care, including fibromyalgia, and a medical guide developed by the Fibromyalgia Association UK (FMUK) for health professionals. Information for the public can be found on the NHS Choices website and is also available in a patients information guide produced by FMUK. The medical guide, patient information booklet and NHS choice webpage on fibromyalgia can be found at the following links:

http://www.fmauk.org/dmdocuments/Medical Pack.pdf

http://www.fmauk.org/information-packs-mainmenu-58/booklet-mainmenu-135/490-patient-booklet

http://www.nhs.uk/conditions/fibromyalgia/
 
http://www.parliament.uk/business/p...s/written-question/Commons/2017-11-29/116543/

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

[Written Answers]

Fibromyalgia: Research
----------------------

Thelma Walker

To ask the Secretary of State for Health, what steps his Department is taking to support research into fibromyalgia. [116543]

Jackie Doyle-Price

The Department's National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including fibromyalgia; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
NIHR support for fibromyalgia research over the last five years includes £1.8 million funding for research projects; £0.6 million funding for clinical trials through the NIHR Clinical Research Network; and the NIHR has managed infrastructure supporting fibromyalgia research.

Information on individual projects funded by the NIHR can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/
 
URL:
http://www.parliament.uk/business/p...s/written-question/Commons/2017-12-04/117240/
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

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

Andrea Jenkyns

To ask the Secretary of State for Health, whether his Department has made an assessment of the merits of defining fibromyalgia as a disability. [117240]

Jackie Doyle-Price

The Equality Act 2010 defines disability as a physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities.

Decisions about what meets this definition are not generally made on the basis of whether or not a person has a specific condition, but on the impact of that condition. The Equality Act 2010 specifies that only a very small number of health conditions (cancer, HIV infection and multiple sclerosis) are always considered to be disabilities.
 
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