UK House of Lords/ House of Commons Questions

Source: UK House of Commons

Date: January 30, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-22/211240/

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-22/211242/

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

[Written Answers]

Personal Independence Payment: Fibromyalgia
Personal Independence Payment: Multiple Sclerosis
-------------------------------------------------

Angela Crawley

To ask the Secretary of State for Work and Pensions, how many personal independence payment assessments where a claimant had a diagnosis of fibromyalgia resulted in no award; and how many of those claims were overturned at mandatory reconsideration or appeal. [211240]

To ask the Secretary of State for Work and Pensions, how many personal independence payment assessments where a claimant had a diagnosis of multiple sclerosis resulted in no award; and how many of those claims were overturned at mandatory reconsideration or appeal. [211242]

Sarah Newton

The information requested is shown in the table below.

Table 1: Number of PIP decisions for people who did not receive an award at the initial decision post assessment where the award was changed at mandatory reconsideration (MR) and where decisions were overturned at appeal for people with a primary disabling condition of Fibromyalgia or Multiple Sclerosis, April 2013 to September 2018     

-------------------------------------------------------
Fibromyalgia Multiple sclerosis
-------------------------------------------------------
Initial decisions 96,320 48,040

Disallowed post-referral 29,580 7,830 to the Assessment Provider due to failing the assessment
of whom, the decision was 1,370 550 changed at MR
of whom, the decision was 3,030 940 overturned at appeal
-------------------------------------------------------

Since PIP was introduced 3.7m decisions have been made until September 2018, of these 10% have been appealed and 5% have been overturned.

Notes

* PIP data includes normal rules and special rules for the terminally ill claimants, and is for both new claims and DLA reassessment claims

* Data has been rounded to the nearest 10.

* Appeals data taken from the DWP PIP computer system's management information. Therefore this appeal data may differ from that held by Her Majesty's Courts and Tribunals Service for various reasons such as delays in data recording and other methodological differences in collating and preparing statistics.

* Appeals data includes some cases where the initial decision was changed at MR.

* Decisions overturned at appeal may include a number of appeals that have been lapsed (which is where DWP changed the decision after an appeal was lodged but before it was heard at Tribunal)

* Some decisions which are changed at mandatory reconsideration, and where the claimant continues to appeal for a higher PIP award, are then changed again at tribunal appeal. Therefore the number of people who had a decision changed at mandatory reconsideration and the number of people who had a decision changed at tribunal appeal cannot be added together.

* Data is based on primary disabling condition as recorded on the PIP computer systems. Claimants may often have multiple disabling conditions upon which the decision is based but only the primary condition is shown in these statistics.

* Great Britain only.

* Claimants who have received benefit decisions more recently may not yet have had time to complete the claimant journey and progress to appeal.

 

it sounds so poetic

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-28/213339/

Robert Halfon

To ask the Secretary of State for Health and Social Care, what plans he has to support biomedical research into the diagnosis and treatment of ME.

 

Thanks@MeSci- answered my question above.

 

That means,

fibromyalgia: 30,7% were refused at the start, 4400 of 29580 = 14,9% appealed, 1370 of 4400 = 31,7% won and 68,3% lost, so in total 29580-1370 = 28210 is 29,3% were rejected;

MS: 16,3% were refused at the start, 1490 of 7830 = 19% appealed, 550 of 1490 = 37% won and 63% lost, so in total 7830-550 = 7280 is 15,1% were rejected.

 

Source: UK House of Commons

Date: January 31, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-23/211844/

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

[Written Answers]

Chronic Fatigue Syndrome: Research
----------------------------------

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, what recent funding has been made available for research into myalgic encephalomyelitis. [211844]

Caroline Dinenage

The National Institute for Health Research (NIHR), on behalf of the Department, funded 1,495,363 pounds of programme research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), over the last three financial years (up to 2017/18). Further information on this research is available through the NIHR Journals Library at the following link:

https://www.journalslibrary.nihr.ac.uk/programmes/

The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS; 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.

 

Just did a search at above link. Does not make for happy reading.

 

Yes, I searched this site too after reading the recent Parliamentary Briefing Paper, available at: http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf

On page 10 of the paper the authors write: Figures on research expenditure for specific conditions are not easily obtainable. Research Council annual accounts detail funding allocations by the institution that receives them rather than the research purpose. Meanwhile, individual NHS organisations’ programme budgets do not break down their expenditure in the way required to identify CFS/ME research funding. However, some information on funding for Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) is available from PQ responses. The table below gives details of NIHR funding for biomedical research into CFS/ME from 2013/14 to 2017/18 [bolding mine].

They then link to the following: https://www.parliament.uk/written-q...ts/written-question/commons/2018-10-19/181584. The original source does not state the figures are for biomedical research, just for unspecified CFS/ME research.

However, after a thorough search of the the NIHR site, the only CFS/ME research showing in the last 5 years is the ongoing FITNET trial. The grant given for this project nowhere near equates to the figures given in the table, so where did the rest of this 'research expenditure' go? Indirectly to fund the Cochrane reviews of CBT and GET? Producing training such as the RCGP course? The bottom line is that the recent MP briefing paper inaccurately portrayed £2.5 million of NIHR funding going to biomedical research!

 

Source: UK House of Commons

Date: February 4, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-28/213339/

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

[Written Answers]

Chronic Fatigue Syndrome: Research
----------------------------------

Robert Halfon

To ask the Secretary of State for Health and Social Care, what plans he has to support biomedical research into the diagnosis and treatment of ME. [213339]

Caroline Dinenage

The National Institute for Health Research welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis; 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.

(This answer has been given numerous times.)

 

Source: UK House of Commons

Date: February 5, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-29/214108/

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

[Written Answers]

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

Angela Crawley

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of the use of cannabidiol treatment for people with fibromyalgia. [214108]

Steve Brine

The Department has made no assessment of the potential merits of the use of cannabidiol as a treatment for fibromyalgia.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-05/216906/

Tom Brake

To ask the Secretary of State for Health and Social Care, what plans his Department has to allocate additional funding to support biomedical research into the diagnosis and treatment of myalgic encephalomyelitis.

 

Source: UK House of Commons

Date: February 6, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-29/214104/

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-29/214106/

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

[Written Answers]

Social Security Benefits: Fibromyalgia
--------------------------------------

Angela Crawley

To ask the Secretary of State for Work and Pensions, what discussions she has had with the Secretary of State for Health and Social Care on the needs of people with fibromyalgia who are making claims for (a) personal independence payments and (b) employment support allowance.
[214104]

To ask the Secretary of State for Work and Pensions, what plans she has to meet with representatives of fibromyalgia (a) charities and (b) action groups in February 2019. [214106]

Sarah Newton

During the debate on the recognition of fibromyalgia as a disability in Westminster Hall on 15 January

https://hansard.parliament.uk/commo...ognitionOfFibromyalgiaAsADisability, col 315H

I offered to arrange a round table with Ministers from the relevant Departments - including the Department of Health and Social Care - together with myself in my role as Minister for Disabled People to discuss what more we can do about health services, research and benefits for those with fibromyalgia. This round table is due to take place later this month.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-06/217626/

Wera Hobhouse

To ask the Secretary of State for the Home Department, what assessment his Department has made of the effect of child protection procedures on families affected by myalgic encephalomyelitis.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-07/218214/

Frank Field

To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment.

 

Source: UK House of Commons

Date: February 13, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-05/216906/

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

[Written Answers]

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

Tom Brake

To ask the Secretary of State for Health and Social Care, what plans his Department has to allocate additional funding to support biomedical research into the diagnosis and treatment of myalgic encephalomyelitis. [216906]

Caroline Dinenage

The National Institute for Health Research welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis; 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.

 

Source: UK House of Commons

Date: February 14, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-06/217626/

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

[Written Answers]

Children: Protection
--------------------

Wera Hobhouse

To ask the Secretary of State for the Home Department, what assessment his Department has made of the effect of child protection procedures on families affected by myalgic encephalomyelitis. [217626]

Victoria Atkins

The Department for Education has made no recent assessments of the impact of child protection procedures on families affected by myalgic encephalomyelitis.

Local authorities must undertake enquiries if they believe a child has suffered or is likely to suffer significant harm and decide if any action must be taken under section 47 of the Children Act 1989. Working Together to Safeguard Children (2018) sets out the parameters and principles of high quality child protection assessments and procedures.

The local authority is under a duty to safeguard and promote the child's welfare and child protection decisions are based on the professional judgement of social workers and the circumstances of the individual child. The Equality Act 2010 is clear that all institutions, including local authorities, cannot discriminate on the basis of protected characteristics, including disability.

The Government is undertaking wide-ranging reforms to improve the quality of social work practice and decision-making, including through assessment and accreditation against Knowledge and Skills Statements, which are also the post qualifying standards for child and family social work.

 

Source: UK House of Commons

Date: February 14, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-07/218214/

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

[Written Answers]

Chronic Fatigue Syndrome: Medical Treatments
--------------------------------------------

Frank Field

To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. [218214]

Steve Brine

The Government is investing over 1.7 billion pounds a year in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). Since 2011, the MRC has funded seven research projects totalling 2.62 million pounds, following a call for proposals to help increase the understanding of the mechanisms of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME research remains an area of high strategic importance for the MRC.

Applications are encouraged in response to MRC's Science Boards and Panels under a Cross-Board highlight notice, in place since 2003 and updated in 2011.

On 20 September 2017, the National Institute for Health and Care Excellence (NICE) announced its decision to undertake a full update of the guideline, 'Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children', following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:

http://www.nice.org.uk/news/article...ance-on-the-diagnosis-and-treatment-of-cfs-me

In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the NHS and is a key part of GPs' qualifying exams.

Finally, regarding concerns about the wellbeing of children; we recognise that chronic medical conditions, such as ME, can put a strain on the child and their family. Whilst the Department for Education would want to avoid action that would add to the strain, it is right that children's services should be prepared to assess the needs of children who may be at risk. It is important that the assessment of a child is conducted on a multi-agency basis, and takes account of any medical condition the child may have.

In July 2018, the Department for Education published an updated version of its statutory safeguarding guidance, 'Working Together to Safeguard Children'. This includes guidance on how assessments should be conducted, and sets out new local multi-agency procedures. Health services are one of the core local safeguarding partners.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-14/221619/

Sharon Hodgson

To ask the Secretary of State for Health and Social Care, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how many of those applications have been awarded funding; and if he will make a statement.

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-14/221620/

Sharon Hodgson

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated to ME/CFS for (a) biopsychological and (b) biopsychosocial research in each year since 2010; and if he will make a statement.

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-14/221621/

Sharon Hodgson

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated to ME/CFS for biomedical research in each year since 2010; and if he will make a statement.

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-14/221646/

Chris Ruane

To ask the Secretary of State for Health and Social Care, what assessment he has made of the use of microbiota assessments in the diagnosis of (a) ME/ CFS and (b) fibromyalgia.

 

Stephen brine’s response is unacceptable, as said above what they offered FM was more and atLeast a reasonable response. Hundreds of patients with ME didn’t write to their MPs complaining about what’s being done after calling for a HoC debate only for essentially defence of status quo to be thrown back in our faces.

I wonder where we would be with the MRC if we weren’t considered an area of high strategic importance when a highlight notice from 2003 is their main offering to an illness that is supposedly

What are the two studies they are claiming to have funded for £1m after the five for £1.6m in 2011, they often say they are giving £.6m for the mark davis Neil Harrison FND research project but I don’t think all that sum is going on the CFS project, what’s the rest.