UK House of Lords/ House of Commons Questions

David Warburton Conservative, Somerton and Frome
To ask the Secretary of State for Health and Social Care, if he will increase funding for (a) the treatment of and (b) research into myalgic encephalomyelitis.

Helen Whately Minister of State (Department of Health and Social Care)
It is the responsibility of integrated care boards to make available appropriate provision to meet the health and care needs of the local population, including people with ME/CFS. The Department is developing a cross-Government Delivery Plan on ME/CFS. As part of the plan, we are working with other Government departments and stakeholders to determine ways to improve experiences and outcomes for all people who have ME/CFS.

The Government invests in health research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of ME/CFS, including biomedical research. It is not usual practice to ring-fence funds for particular topics or conditions.
 
Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of using SNOMED-CT diagnostic codes to determine the number of (a) adults and (b) children living with myalgic encephalomyelitis or chronic fatigue syndrome.

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
No assessment has been made.
 
Carers leave Bill
Third reading
Statistics from the 2020-21 family resources survey show that approximately 4.2 million people across the UK are providing unpaid care by looking after an elderly or disabled family member or another dependant, and that the majority of those individuals are women aged over 50. In the previous debate, there was much conversation about how we get people back into the workplace; we know that the Government have a particular focus on those aged over 50, so I am very hopeful that they will continue to support my Bill, because I believe it will help towards that goal.

The reality is that becoming a carer is something that can happen to any one of us. Caring is a reality for many millions of people across the UK. It can take many forms: it can be day-to-day physical caring, washing, dressing and feeding for those who cannot care for themselves; it can be making medical appointments or arranging for paid care; it can even just be doing the shopping for a housebound elderly neighbour. Caring or being cared for is something that almost everyone will experience at some point in their life.

However, sadly, Carers UK research found in 2021 that 37% of working carers said that they needed unpaid carer’s leave in order to manage working and caring, and a further one in seven said that without carer’s leave, they would have to reduce their working hours or give up work altogether. Those statistics become even starker when we talk to carers of those with more debilitating conditions, such as multiple sclerosis. The preliminary findings of a recent survey of unpaid carers by the MS Society found that 13% of respondents had given up working and 20% had taken early retirement due to their caring responsibilities. Over two thirds said that their work had been impacted due to the help they provided to their loved one with MS.
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Angela Richardson
“Long-term care need” is defined as including any illness or injury likely to require at least three months of care, any disability under the Equality Act 2010 or any reasons connected with old age. I looked up the list of conditions that are described as disability under the Equality Act 2010, and I think they would come as a surprise to many people who are caring just because it is part of their life and it is their family situation and experience. They probably do not even know that the conditions those they are caring for have would qualify. The list includes sensory impairments, such as with sight and hearing, rheumatoid arthritis, ME, chronic fatigue syndrome, progressive conditions such as motor neurone disease, muscular dystrophy and forms of dementia, respiratory conditions and organ conditions, developmental conditions such as autism spectrum disorder, learning disabilities, mental health conditions, mental illnesses and conditions produced by injury, including to the brain. There is a list of exceptions, too, but I think if people went and had a look at that list, they might be surprised that they qualify under this new legislation.
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Carer’s Leave Bill: 3 Feb 2023: House of Commons debates - TheyWorkForYou
 
Rupa Huq Labour, Ealing Central and Acton
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of providing additional funding for research into treatments for myalgic encephalomyelitis.

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
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.
 
Sly Saint said:
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.
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Hmm, do we think this may suggest some coordination with World ME Day (or whatever it's called), like last year where the DHSC thing was announced?
 
Carol Monaghan Shadow SNP Spokesperson (Education), Shadow SNP Spokesperson (Science, Innovation and Technology)
To ask the Secretary of State for Health and Social Care, when his Department plans to publish the cross-Government delivery plan on ME/CFS for England.

Helen Whately Minister of State (Department of Health and Social Care)
The Department plans to publish a draft delivery plan on ME/CFS shortly. We intend to seek views on the draft plan before publishing a final delivery plan at a later date.
 
Lloyd Russell-Moyle Labour/Co-operative, Brighton, Kemptown
To ask the Secretary of State for Health and Social Care, what plans he has for a cross-Government delivery plan on myalgic encephalomyelitis or chronic fatigue syndrome.

Helen Whately Minister of State (Department of Health and Social Care)
The Department plans to publish a draft delivery plan on ME/CFS shortly. We intend to seek views on the draft plan before publishing a final delivery plan at a later date.


are they taking advice from Cochrane on how to stall?
 
Unfortunately I don’t think MPs and their parliamentary assistants seem to put enough thought into framing questions to get specific responses or follow up when they get generic replies. Some are content to top sheet hoping whatever response they get from a department is enough to demonstrate action to their constituent.
 
NelliePledge said:
Follow up question required to ask for timeframe ie will it be before the recess, before the end of the year…..
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"Shortly" is code for "it's in the works, therefore I can't/won't give you a date" while "Later date" is code for "we aren't going to commit to timescale". LRM could have asked a supplemental on timescale but would have received a 'put down' response of "As I already replied to the Member.....". The format is endlessly rehearsed the Commons day in day out, and serves as a demonstration of Governmental control.

The question now is whether the substance of the reply can be leveraged to ensure a) timely publication of the draft and b) "seek views" means a proper consultation carried out in a defined timescale. If "seeks views" means internal to Government departments then the process may be lost given that we are within 18 months or less of a mandatory General Election and the whole process of Government will turn to election priorities which may not include concern for ME/CFS.

LRM's question did the job of elucidating a Government position - something has been promised (a delivery plan) with a sense of timing that can be challenged - i.e if "shortly" didn't mean before the Summer Recess (20th July) then a further written question would be justified. Questions can of course be self serving (for questioner and responder) but there is an art to a good question and like so many of Westminster processes, asking a question is Gormenghastian - A brief guide
 
Rachael Maskell Labour/Co-operative, York Central
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential impact of IV fluid interventions on patients with Postural tachycardia syndrome; and if he will take steps to support this treatment at York Hospital.

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
The National Institute for Health and Care Excellence has made no assessment of the potential impact of IV fluid interventions on patients with postural tachycardia syndrome. Therefore, there are no plans to support this treatment at York Hospital.

The National Institute for Health and Care Excellence has published guidance on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and recommends being aware that people with these conditions may experience orthostatic intolerance, including postural orthostatic tachycardia syndrome. It does not make any recommendations on management or treatment; however, it does recommend that people with ME/CFS should maintain fluid intake as part of healthy diet.
 
That's an interesting answer. The question made no mention of ME/CFS, unless it has other unseen parts, and yet they seem aware that they are common together, something that is probably not found in many medical documentation, guidelines or otherwise.
 
rvallee said:
That's an interesting answer. The question made no mention of ME/CFS, unless it has other unseen parts, and yet they seem aware that they are common together, something that is probably not found in many medical documentation, guidelines or otherwise.
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Not checked but I’m guessing there’s no NICE guidelines on POTS so they’re making the reference to ME guidelines to be able to give a substantive looking reply. Also it may be that the MP has also written in about a constituent and the person drafting the PQ reply is also dealing with that.
 
Debbie Abrahams Labour, Oldham East and Saddleworth
To ask the Secretary of State for Health and Social Care, when his Department plans to release a delivery plan for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome; and if he will make a statement.

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, with reference to the action for me report entitled Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England, published May 2023, what assessment he has made of the implications for his policies of that report's findings.

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the implementation of NICE Guidelines on Chronic Fatigue Syndrome.

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the provision of specialist services for people with Chronic Fatigue Syndrome.

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:

https://www.gov.uk/government/consu...ll-reality-the-interim-delivery-plan-on-mecfs

We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.

Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.
 
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