UK House of Lords/ House of Commons Questions

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-29/184959/

Jim Shannon

To ask the Secretary of State for Health and Social Care, what estimate his Department has made of the number of people with fibromyalgia in each of the last five years.

 

'Reply' to the above

Source: UK House of Commons

Date: November 2, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-29/184959/

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

[Written Answers]

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

Jim Shannon

To ask the Secretary of State for Health and Social Care, what estimate his Department has made of the number of people with fibromyalgia in each of the last five years [184959].

Steve Brine

This information is not collected.

 

Source: UK House of Commons

Date: November 7, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-31/186334/

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

[Written Answers]

Personal Independence Payment: Chronic Fatigue Syndrome
-------------------------------------------------------

Jess Phillips

To ask the Secretary of State for Work and Pensions, how the health condition of fatigue is assessed by the personal independence payments assessment [186334].

Sarah Newton

With the exception of claims made under special rules for the terminally ill, the assessment for Personal Independence Payment is on the basis of the needs arising from a long-term health condition or disability, not the health condition or disability itself.

 

Written question 196648: Kelvin Hopkins 28-11-2018
Q
Asked by Kelvin Hopkins
(Luton North)
[N]
Asked on: 28 November 2018
Department of Health and Social Care
196648
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on acceptance of the classification of myalgic encephalomyelitis as a neurological disease as defined by the World Health Organisation; and if he will make a statement.

https://www.parliament.uk/business/...s/written-question/Commons/2018-11-28/196648/

 

Source: UK House of Commons

Date: December 3, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-11-28/196648/

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

[Written Answers]

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

Kelvin Hopkins

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on acceptance of the classification of myalgic encephalomyelitis as a neurological disease as defined by the World Health Organisation; and if he will make a statement [196648].

Steve Brine

The Department has had no such discussions. The National Institute for Health and Care Excellence (NICE) is an independent body and develops its guidance based on a thorough assessment of the available evidence and in consultation with stakeholders. NICE is currently updating its clinical guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis, with expected publication on 14 October 2020.

 

Just asked a question, shame Kelvin Hopkins MP is not publically on twitter:

https://twitter.com/user/status/1070306142423781376


I’ll go hide back in my cave now.......

 

Followed by:

https://twitter.com/user/status/1070317041381457920

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-21/210666/

Emma Reynolds

To ask the Secretary of State for Work and Pensions, whether she has plans to update the training module on Fibromyalgia issued by her Department on 18 April 2018; and whether her Department has made an assessment of (a) the level of compliance with the training module by benefits assessors and (b) the effectiveness of the guidance in identifying suffers of Fibromyalgia.

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-22/211239/

Angela Crawley

To ask the Secretary of State for Work and Pensions, how many disability living allowance claimants with fibromyalgia have been assessed as ineligible for personal independence payment.

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

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.

 

I think I can answer those questions...

1. None of my business, it wasn't me wot did it, no plans to alter anything anyway. We might look again in 10 years time.

2. We don't keep those figures.

3. We don't keep those figures.

 

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

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.

https://www.parliament.uk/business/...s/written-question/Commons/2019-01-23/211936/

Thelma Walker

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support families with members who have fibromyalgia syndrome.

 

Source: UK House of Commons

Date: January 24, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-21/210666/

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

[Written Answers]

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

To ask the Secretary of State for Work and Pensions, whether she has plans to update the training module on Fibromyalgia issued by her Department on 18 April 2018; and whether her Department has made an assessment of (a) the level of compliance with the training module by benefits assessors and (b) the effectiveness of the guidance in identifying suffers of Fibromyalgia. [210666]

Sarah Newton

The training module is due to be reviewed in April 2019 and Fibromyalgia UK will be invited to quality assure the document which they previously reviewed in March 2018. The Department's Independent Audit Team conducts an audit of a statistically significant sample of the Centre for Health and Disability Assessment reports that includes Fibromyalgia cases. The role of Healthcare Professionals conducting assessments is to provide advice on the functional impact of a condition and not to diagnose or advise on treatment.

--------
(c) 2019 Parliamentary copyright

 

Simon Collin who was responsible for it said it stopped in 2015/2016 when I rang him and asked!
I believe it was a son of BACME.....
The NOD was a centralised repository of routinely collected CFS/ME Minimum Data Set (MDS) data. These data were collected (routinely) by clinical teams around the country for a period of time predating the start of the NOD. The collation of data in the NOD began in mid-2004, starting with data from the Bath paediatric and Bristol adult CFS/ME services.

2. What was the date of the first entry into the NOD database?

The date of clinical assessment of the first adult patient is 10/08/2004.

The date of clinical assessment of the first paediatric patient is 26/04/2004.

3. Is data still being collected for the NOD database?

No.

4. If not, what was the last date of entry of patient data into the database?

The date of clinical assessment of the last adult patient is 18/05/2016.The date of clinical assessment of the last paediatric patient is 13/03/2016.
https://www.s4me.info/threads/uk-ch...halomyelitis-national-outcomes-database.1229/

 

Source: UK House of Commons

Date: January 28, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-22/211239/

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

[Written Answers]

Personal Independence Payment: Fibromyalgia
-------------------------------------------

Angela Crawley

To ask the Secretary of State for Work and Pensions, how many disability living allowance claimants with fibromyalgia have been assessed as ineligible for personal independence payment. [211239]

Sarah Newton

The Department publishes a range of detailed statistics for PIP on Stat-Xplore:

https://stat-xplore.dwp.gov.uk

Guidance on how to use Stat-Xplore can be found here:

https://sw.stat-xplore.dwp.gov.uk/webapi/online-help/index.html.

These statistics include monthly clearances (decisions) since PIP was introduced in April 2013.

Clearance figures can be broken down by clearance type (e.g. whether the claim was awarded, disallowed pre-referral to an assessment provider, disallowed at assessment or withdrawn), by reassessment type (i.e. whether the claimant was making a new claim or was undergoing a Disability Living Allowance (DLA) to PIP reassessment) and by main disabling condition.

Note that main disabling condition is only recorded for claims which reach the assessment stage.

Claimants may often have multiple disabling conditions upon which their entitlement decision is based but only the main disabling condition is recorded and shown in these statistics. Main disabling condition is the disability recorded on the PIP administrative system. It is possible that a reassessment claim could have a different main disabling condition recorded on the DLA and PIP systems.

With regard to your question relating to 'Behavioural Disorders' we advise that you group together the Disability Subgroups, 'Conduct disorder (including oppositional defiant disorder)' and 'Hyperkinetic Disorder - ADHD/ADD.' For the question relating to borderline personality disorder select Personality Disorder.

(?)

 

Source: UK House of Commons

Date: January 28, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-01-23/211936/

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

[Written Answers]

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

Thelma Walker

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support families with members who have fibromyalgia syndrome. [211936]

Steve Brine

The Department is committed to making sure people with long term conditions receive the personalised care and support they need. Where suitable, loved ones and carers should be involved in tailoring care options.

Last summer the Department published a Carers Action Plan, setting out a cross-Government programme of targeted work to support carers over the next two years and will also ensure a clear focus on carers in the forthcoming Adult Social Care Green Paper. The Department is clear that planning for people with long term conditions should involve loved ones and carers. The aim is supporting carers to provide care as they would wish, and to do so in a way that supports their own health and wellbeing.

As set out in the NHS Long Term Plan, published on 7 January 2019, NHS England is taking action in range of areas to improve the care treatment and support provided to people with neurological conditions including rolling out the NHS Comprehensive Model of Personalised Care across the
country, reaching 2.5 million people by 2023/24.

 

Just to say that although Ed Davey was not at the debate last Thurs, he has certainly not lost interest. I am sending stuff to his Parliamentary Assistant and to him directly, to which he is replying.

I sent David’s stuff yesterday on which he commented that we are winning the argument which is the first step. Encouraging.

Eta: winning the argument thanks to @dave30th

 

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

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.

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

Angela Crawley

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.

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

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.

 

Do the above questions follow on from the debate on fibromyalgia that happened recently?

Are there any questions planned to follow on from our debate last week eg re GP training, training for all medical professionals?

Apologies if this is covered in the link above- as yet unread.