UK House of Lords/ House of Commons Questions

Mitochondria cells? Mitochondria are organelles within cells!

 

This is nonsense. The governemnt (NB government not the MRC or NIHR) has announced ring-fenced funding for Alzheimer’s, Brain cancer, and most recently £375 for neurodegenerative disorders, including a minimum of £50 million to find a cure for MND. My MP has written to DHSC on my behalf to ask (yet again) for ring-fenced funding for ME research following the announcement on MND etc.

FWIW I also tweeted Javid:

 

Alex Sobel Shadow Minister (Digital, Culture, Media and Sport)
To ask the Secretary of State for Health and Social Care, what steps he is taking to help ensure that NICE guidelines on treating and caring for people with ME are implemented across the NHS effectively, including within GP surgeries, hospital treatment and long term care.

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• Hansard source (Citation: HC Deb, 3 December 2021, cW)

Alex Sobel Shadow Minister (Digital, Culture, Media and Sport)
To ask the Secretary of State for Health and Social Care, what guidance is provided to medical practitioners on applying gradual exercise management and other non physical treatments to patients with ME.

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• Hansard source (Citation: HC Deb, 3 December 2021, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
While the National Institute for Health and Care Excellence’s (NICE) guidelines are not mandatory, we expect the healthcare system to take them into account when designing services to meet the needs of their local population and to implement guidelines over time. NICE is working with system partners to support the implementation of the guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The guideline recommends that any programme based on fixed incremental increases in physical activity or exercise, such as graded exercise therapy, should not be offered for the treatment of ME/CFS. Any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. The guideline also contains recommendations on energy management, rest and sleep, pain, medication for symptom management, dietary management and supportive cognitive behavioural therapy.

 

This is better than her last response which called the guideline CFS/ME.

 

Alex Sobel Shadow Minister (Environment, Food and Rural Affairs)
To ask the Secretary of State for Health and Social Care, whether his Department has plans tackle the misdiagnosis of ME patients; and with whom NICE plans to work to raise awareness of that misdiagnosis among the public, Government officials and NHS staff.

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• Hansard source (Citation: HC Deb, 15 December 2021, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body with responsibility for developing evidence-based guidance for the health and care system. NICE recently updated their guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), aiming to improve awareness and understanding of ME/CFS to ensure earlier and correct diagnoses. The guideline includes specific recommendations on providing information and support to people with ME/CFS and training for health and social care professionals. This training should include material on ME/CFS and its diagnosis and management.

NICE promotes guidance via its website, newsletters and other media. While guidelines are not mandatory, we expect the healthcare system to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time. NICE is working with system partners to support the implementation of the guideline for ME/CFS.


eta: might help if the NHS used the correct diagnostic criteria and put them on their websites.

 

This answer completely ignored the question. Not just evade, it ignored it.

 

Alex Sobel Shadow Minister (Environment, Food and Rural Affairs)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that NHS staff providing medical and personal care to ME and long covid patients are aware of the harmful impact of inappropriate exercise, over-exertion and exposure to light, sound, touch and new environments on those patients.

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• Hansard source (Citation: HC Deb, 16 December 2021, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing guidance for the health and care system. NICE published its updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on 29 October 2021, which contains recommendations on energy management, rest and sleep. Additionally, the guideline advises that discussions should take place with those who require inpatient care on whether any aspects of the location of their care could cause difficulties, including environmental factors such as lighting, sound, heating and smells. NICE is working with system partners to support the implementation of the guideline for ME/CFS. The full guidance is available at the following link:

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

The NICE guideline for the long-term effects of COVID-19 considers careful self-pacing of exercise to be an important element of self-management. However, NICE concluded that in the absence of evidence relating to those with ongoing symptoms, it could not make specific recommendations. It has agreed to include a research recommendation to determine the effectiveness of exercise interventions for this population.

eta:
yes we know all that but what are the NHS doing about it?

 

Huh?

 

Munira Wilson Liberal Democrat Spokesperson (Health and Social Care)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) increase awareness of postural tachycardia syndrome and (b) ensure that the condition is not (i) damagingly missed or (ii) misdiagnosed as anxiety or chronic fatigue syndrome.

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• Hansard source (Citation: HC Deb, 20 December 2021, cW)

Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care
General practitioners (GPs) have been provided with guidance from the National Institute for Health and Care Excellence on postural tachycardia syndrome. GPs are asked to investigate symptoms to ensure that it is not misdiagnosed. Following referral, patients are treated within National Health Service cardiology and neurology services. Where more specialist advice is required, a referral will be made to an appropriate clinician.

 

I just saw this on Twitter but didn’t know where to post it. (Mods, please move if necessary.)

I’ve no idea about the source but someone claims that Sajid Javid (UK Secretary of State for Health and Social Care) has a close family member who has ME.

 

Damien Moore Conservative, Southport
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase (a) public awareness of and (b) support for people suffering from chronic fatigue syndrome, CFS/ME.

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• Hansard source (Citation: HC Deb, 6 January 2022, cW)

Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care
The National Institute for Health and Care Excellence (NICE) is an arm's length body of the Department with responsibility for developing evidence-based guidance for the health and care system including for chronic fatigue syndrome (CFS/ME).

To increase awareness, support and understanding of CFS/ME, NICE recently updated their CFS/ME guidance. The guidance includes specific recommendations on providing information and support to people with CFS/ME including personalised advice about managing symptoms.

Additionally, the guidance recommends that training for all staff delivering care to people with CFS/ME should include materials helping them to understand what CFS/ME is, how it is diagnosed and managed.

NICE is working with system partners to support the implementation of the guideline.


"an arm's length body"

 

Some arms may be shorter than others.

 

Unfortunately, not all arms are 'armless

 

Some amount to the long arm of the lore.

 

Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)
To ask the Secretary of State for Health and Social Care, with reference to NICE's updated guidance on exercise for sufferers of ME, whether his Department has plans to promote that information to health and social care staff.

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

Gillian Keegan Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence is working with the National Health Service to support the implementation of its guidance. While the guidance describes best practice and should be taken into account in the treatment of patients, it is not mandatory and does not override a medical practitioner’s clinical judgement.

 

Good for Jim Shannon! (He’s my MP and is very supportive of PWME).

I’m not hugely impressed with the answer though.

 

Me neither. Makes you wonder why Keegan felt the need to say that 2nd sentence - primed by somebody?

 

Tan Dhesi Shadow Minister (Transport)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve NHS treatment and support for people with (a) ME, (b) chronic fatigue syndrome and (c) other chronic long-term pain conditions.

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• Hansard source (Citation: HC Deb, 18 January 2022, cW)

Tan Dhesi Shadow Minister (Transport)
To ask the Secretary of State for Health and Social Care, what steps his Department has taken to ensure that the National Institute for Health and Care Excellence guidelines, published in April 2021, on treating and caring for people with ME, are being implemented across the NHS effectively.

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• Hansard source (Citation: HC Deb, 18 January 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The Government is funding research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through the National Institute for Health Research and the Medical Research Council. Current research projects include DecodeME, looking into the causes of the condition. In November 2021, we met with a group of research experts on ME/CFS and continue to work with stakeholders to consider how best to support continued research. NHS England and NHS Improvement are also collaborating with stakeholders, including Versus Arthritis, to coordinate support for people with chronic long-term pain conditions. The National Institute for Health and Care Excellence (NICE) published its guideline on chronic pain in April 2021, which is available at the following link:

https://www.nice.org.uk/guidance/ng193

NICE published its guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in October 2021, which is available at the following link:

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

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

 

This sounds better - so “not mandatory” but “expected” to be taken “fully into account in designing services”

I’m thinking the first bit is to allow clinical judgement in individual cases, and the second is the expectation that services should be set up to deliver the recommendations. This is better than the way the previous answer was given.

 

Yes, a government response to be kept note of.