UK House of Lords/ House of Commons Questions

...but what remedies are available for failure to fulfil expectations?

 

Margaret Ritchie "Urging Minister to provide funds for research into ME." in the House of Lords today.

 

Personal Independence Payment: Pain
Department for Work and Pensions written question – answered on 1st March 2022.

Luke Pollard Shadow Minister (Defence)
To ask the Secretary of State for Work and Pensions, how many and what proportion of personal independence payments where chronic pain is the primary health condition are (a) refused at the initial application stage and (b) overturned at the mandatory reconsideration stage or appeal stage.

Chloe Smith Assistant Whip, The Minister of State, Department for Work and Pensions

The table below provides information on initial decisions, mandatory reconsiderations and appeals following a Personal Independence Payment assessment where the primary condition has been determined as chronic pain. Chronic pain has been taken as anyone listed in the chronic pain syndromes subgroup (Chronic Fatigue Syndrome, Fibromyalgia, and chronic pain syndromes– other), non-specific back pain and specific back pain. The proportion of these figures as a percentage of initial decisions is also included.

Initial decisions

Disallowed at initial decision

Changed at reconsideration or appeal after being disallowed at initial decision

515,520

168,130 (33%)

33,050 (6%)

Notes:

• Figures have been rounded to the nearest 10.
• Data is based on primary disabling condition as recorded on the PIP computer system. Claimants may often have multiple disabling conditions upon which the decision is based but only the primary condition is shown in these statistics.
• These figures include initial decisions following assessment for PIP New Claims and Reassessments from the start of the benefit in April 2013 up to 30th June 2021, the latest date for which published data is available.
• These figures cover mandatory reconsideration and appeal decisions at a tribunal hearing up to 31st September 2021.
• Decisions that were changed at mandatory reconsideration that were further changed at appeal have only been counted once.
• A change at appeal includes those that were overturned and those that were lapsed.
• A lapsed appeal is where DWP changed the decision in the customer’s favour after an appeal was lodged but before it was heard at a tribunal hearing.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, how many people who have received a diagnosis of (a) myalgic encephalomyelitis and (b) chronic fatigue syndrome are currently in employment.

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• Hansard source (Citation: HC Deb, 3 March 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
Recent data from the UK Biobank suggests that there are over 250,000 people in England and Wales with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Information on the number of people in employment with a diagnosis of ME/CFS is not held centrally.


Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what assessment he has made of the long-term impact of covid-19 on individuals with a diagnosis of (a) myalgic encephalomyelitis or (b) chronic fatigue syndrome.

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• Hansard source (Citation: HC Deb, 3 March 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
No specific assessment has been made. The National Institute for Health Research has funded studies to improve the understanding of and address the longer-term effects of COVID-19. Currently there are no published findings on the long term impact of COVID-19 in people with a diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome from these studies.


Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, how many people with long coivd have received a diagnosis of (a) myalgic encephalomyelitis or (b) chronic fatigue syndrome.

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• Hansard source (Citation: HC Deb, 3 March 2022, cW)

Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care
The information is not available in the format requested.

 

This is great - shadow minister for disabled people (or for civil society - shadow positions can be a little vague, but she’s DWP facing anyway) getting the bit between her teeth on ME is really positive.

 

This really needs to be changed. Of course ME can involve pain, but it is not a "chronic pain syndrome"; very poor practice to lump them together.

Perhaps something that could be flagged up with the charities that interact with the DWP?

 

Kerry McCarthy Labour, Bristol East
To ask the Secretary of State for Health and Social Care, with reference to the oral contribution of Baroness Scott of Bybrook in the House of Lords debate on the National Disability Strategy on 10 February 2022, Official Report, column 1809, what discussions he had with Ministers in his Department on the implementation of a (a) Government review of provision for ME or CFS and (b) national strategy for that disease.

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• Hansard source (Citation: HC Deb, 7 March 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
There have been no specific discussions. The Department continues to consider options to improve outcomes for people with myalgic encephalomyelitis/chronic fatigue syndrome and their families, including the potential development of a national strategy.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure myalgic encephalomyelitis or chronic fatigue syndrome patients are correctly coded by GPs at the point of diagnosis.

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• Hansard source (Citation: HC Deb, 15 March 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT) is the structured clinical vocabulary for use in an electronic health record. It is a contractual requirement for all National Health Service healthcare providers in England to use SNOMED CT for capturing clinical terms, including diagnoses, within electronic patient record systems. Using SNOMED CT, all content for myalgic encephalomyelitis/chronic fatigue syndrome is contained within a single overarching code, with linked codes for mild, moderate and severe forms. These can be used by all NHS healthcare providers, including general practitioners.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, whether people who have received a diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome will be included in future Government covid-19 guidance for people with neurological conditions.

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• Hansard source (Citation: HC Deb, 17 March 2022, cW)

Maggie Throup The Parliamentary Under-Secretary for Health and Social Care
There are no current plans to do so. However, we will continue to keep all public health guidance under review.

On 25 February 2022, the Government issued updated guidance for those previously considered clinically extremely vulnerable (CEV), which is available at the following link:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

For most people considered CEV, they are advised to follow general guidance to prevent the risk of infection, in addition to any further advice from their general practitioner or consultant.

 

Problem is that people with ME aren't considered CEV. My GP (not actually my GP, the head of the practice) refused to add me to that list at beginning of pandemic when I asked so I could get online shopping from supermarkets. Fact that we may be housebound or bedbound counts for nothing with these people.

 

Stephen Morgan Shadow Minister (Defence) (Armed Forces and Defence Procurement), Shadow Minister (Education) (Schools)
To ask the Secretary of State for Health and Social Care, what guidance his Department provides to relevant clinicians on myalgic encephalomyelitis.

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• Hansard source (Citation: HC Deb, 21 April 2022, cW)

Stephen Morgan Shadow Minister (Defence) (Armed Forces and Defence Procurement), Shadow Minister (Education) (Schools)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that the NHS adheres to the MC/CFS NICE guidelines.

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• Hansard source (Citation: HC Deb, 21 April 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
In October 2021, the National Institute for Health and Care Excellence (NICE) published guidance for health and social care professionals ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’, which is available at the following link:

http://www.nice.org.uk/guidance/ng206

Whilst these are not mandatory, clinicians and commissioners are expected to take the guidance fully into account in designing services to meet the needs of the local population and work towards implementation over time.

 

How often does a response over NICE guidelines includes this line? Because it's always there for the ME guidelines, obviously admitting they are not enforcing anything. And since enforcement is 99% of any system of rules...

Maybe the questions need to include the fact that the services are blatantly refusing to implement them. Not sure if this would change the response, though. But it's important to ask the right questions. Because the services are openly revolting and not even being subtle about it. This "we expect" shtick has no shelf life here.

 

Stephen Morgan Shadow Minister (Defence) (Armed Forces and Defence Procurement), Shadow Minister (Education) (Schools)
To ask the Secretary of State for Health and Social Care, whether his Department has made a comparative assessment of the (a) symptoms of and (b) treatments for myalgic encephalomyelitis and long covid.

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• Hansard source (Citation: HC Deb, 25 April 2022, cW)

Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care
No comparative assessment has been made. The National Institute for Health and Care Excellence currently recommends separate pathways for the assessment, treatment, and management of the long term effects of COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome.

 

Not a constructive response give some people with Long Covid will meet the NICE criteria for diagnosis of ME/CFS.

Does this represent lack of interest or deliberate ignorance? Though it would be helpful if NICE were to state that some people with Long Covid will meet the ME/CFS diagnostic criteria and as such should also be treated in line with the ME/CFS guidelines.

 

Honestly, in this case, the question was poorly worded, allowing for a BS answer.

The questions are always terrible, so much it's not even useful.

 

I’ve attached a scanned copy of a disappointing letter from Lord Kamall to my MP.

Below is the email I sent to my MP on 15 Nov 2021. He replied immediately to say he had written to the DHSC but Lord Kamall took 5 months to reply. If anyone wants to use my email as a template to write to their MP, please feel free:

Dear Jeremy,

I was interested to read that the government has recently announced a £375 million investment in neurodegenerative diseases, including at least £50 million to find a cure for MND [1].

In response to letters from you and Francis Maude, the DHSC has repeated stated that it will not ring-fence funding for ME/CFS research because the MRC and NIHR are independent of government, and that funds are not usually ring-fenced for specific diseases.

The government announcement of ring-fenced funding for MND research follows previous government announcements of ring-fenced funding for both brain cancer and Alzheimer’s disease.

As you may be aware, NICE has recently published is new guideline for ME/CFS, which concludes that there are currently no effective treatments for ME/CFS, and that CBT and GET should not be prescribed as treatments [2].

As I have written before, ME/CFS is estimated to affect approximately 250,000 at a cost to the Treasury at least £3.3 billion per annum [3]. Research suggests that ME is at least as disabling as MS and other diseases which receive far more money for research [4]. In addition, most government funding for ME/CFS research has gone to non-pharmacological studies, all of which have now been graded as low or (mostly) very low quality by NICE [5].

In light of the above, please will you write to the Secretary of State for Health and Social Care again to ask for the government to ring-fence funding for high-quality ME/CFS research to develop diagnostic tests and effective treatments, as it has done for MND, brain cancer and Alzheimer’s? The sum should not only be proportional to the disease burden, but also compensate for decades of underinvestment.

[Redacted personal information about my circumstances]

Thank you for your support.

Best wishes,

Robert Saunders

[my address]

1. https://www.gov.uk/government/news/...million-in-neurodegenerative-disease-research

2. https://meassociation.org.uk/about-.../about-what-is-mecfs/nice-clinical-guideline/

3. https://meassociation.org.uk/wp-con...ds/2020Health-Counting-the-Cost-Sept-2017.pdf

4. https://www.ncbi.nlm.nih.gov/pmc/ar...www.ncbi.nlm.nih.gov/pmc/articles/PMC6249197/

5. https://www.nice.org.uk/guidance/ng...uk/guidance/ng206/documents/evidence-review-7

 

Virginia Crosbie Conservative, Ynys Môn
To ask the Secretary of State for Health and Social Care, if he will increase funding for research into myalgic encephalomyelitis; and what steps he is taking to meet the additional needs of people living with myalgic encephalomyelitis and other similar chronic conditions.

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• Hansard source (Citation: HC Deb, 26 May 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

 

Daisy Cooper Liberal Democrat Spokesperson (Health and Social Care)
To ask the Secretary of State for Work and Pensions, how many PIP applications her Department has received from claimants with (a) Myalgic encephalomyelitis (ME) or (b) Chronic Fatigue Syndrome (CFS) as a medical condition in each of the last three years.

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• Hansard source (Citation: HC Deb, 31 May 2022, cW)

Chloe Smith Assistant Whip, The Minister of State, Department for Work and Pensions
The information requested is not readily available and to provide it would incur disproportionate cost.

A Personal Independence Payment (PIP) claimant’s main disabling condition is recorded during their assessment and is not centrally recorded prior to this. Therefore, disability information is not available for analysis for claims registered. To provide the information requested the Department would need to manually examine each individual PIP registration, which would take in excess of 4 working days.

The Department publishes statistics on the number of Personal Independence Payment (PIP) decisions made by main disabling condition. Statistics are available to January 2022 for PIP on Stat-Xplore, in the PIP clearances dataset. Guidance for users is available here.

 

Surely this being economical with the truth i.e. MRC and NIHR are wholly funded by Government Departments - public/taxpayers money.

I'm wondering if I could draw on this for a parliamentary question; here's a few initial thoughts:
"I welcome the Secretary of State for Health's recent enlightened statement to the House on ME/CFS. Will he write to MRC, and NIHR, [any other funding body?] to highlight the need to ensure that all funded ME/CFS research must be high quality - particularly that unblinded studies require objective outcome criteria such as actimetry?"
https://www.nice.org.uk/guidance/ng...uk/guidance/ng206/documents/evidence-review-7

Thanks Robert.

EDIT -
Read!/reread the SOS (Minister's) statement on 12th May. So here's another form of words:
"The Secretary of State for Health's recent statement to the House on ME/CFS has been widely welcomed within the ME/CFS community. In keeping with the commitments in this statement, will he now write to MRC, and NIHR, [any other funding body?] to highlight the need to ensure that all funded ME/CFS research must be high quality - particularly that unblinded studies require objective outcome criteria such as actimetry?"
@PeterW