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Select Committee
PRT0002 - Preterm Birth

Written Evidence May. 03 2024

Inquiry: Preterm Birth
Inquiry Status: Closed
Committee: Preterm Birth Committee

Found: research, my understanding is that many experience neuro developmental conditions, pain, and severe fatigue


Westminster Hall
World ME Day - Wed 01 May 2024
Department of Health and Social Care

Mentions:
1: Sajid Javid (Con - Bromsgrove) fatigue syndrome in May 2022. - Speech Link
2: Fleur Anderson (Lab - Putney) fatigue syndrome, including diagnosis across the country; thirdly, funding research into severe ME and - Speech Link
3: Caroline Nokes (Con - Romsey and Southampton North) Her daughter was a high achiever, training to be a dancer. - Speech Link
4: Andrew Stephenson (Con - Pendle) fatigue syndrome, is a complex medical condition with a wide array of symptoms. - Speech Link
5: Andrew Stephenson (Con - Pendle) I will now turn to medical training, but I will finally say that the NICE guidelines should be followed - Speech Link


Scottish Parliament Written Question
S6W-26412
Tuesday 16th April 2024

Asked by: Ruskell, Mark (Scottish Green Party - Mid Scotland and Fife)

Question

To ask the Scottish Government what the outcome was of the pilot of the NHS Education for Scotland training module on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Answered by Minto, Jenni - Minister for Public Health and Women's Health

NHS Education for Scotland expect this module to be ready for publishing on their website and available to members by June 2024. Updates will be detailed in their newsletter to Practice Based Small Group Learning (PBSGL) members.


Departmental Publication (Transparency)
Home Office

Apr. 12 2024

Source Page: Non-technical summaries granted in 2024
Document: Non-technical summaries: projects granted in 2024, January to March (PDF)

Found: For chronic recordings, prior to training (1 -2 days after the surgery) animals will be handled extensively


Written Question
Chronic Fatigue Syndrome: Health Services
Tuesday 9th April 2024

Asked by: Lord Hunt of Kings Heath (Labour - Life peer)

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the extent to which the 2021 NICE guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been implemented (1) in general, and (2) in relation to the training health and social care professionals on how to employ the new recommendations, (a) establishing a UK-wide network of hospital-based ME/CFS specialist services, (b) making all NHS services accessible and capable of providing personalised ongoing care and support to those with ME/CFS, and (c) ensuring social care provision for ME/CFS is monitored and regularly reviewed.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

No formal assessment has been made of the extent to which the 2021 National Institute for Health and Care Excellence (NICE) guidance for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), has been implemented.

NHS England does not centrally commission services for ME. Services to support people living with ME are commissioned by integrated care boards (ICBs) to meet the needs of their local population, and are not reviewed or assessed by NHS England centrally. In October 2023, the British Association of Clinicians in ME published their ME/CFS National Services Survey 2023. This survey provides insight on the services being delivered for adults, and children and young people, living with ME. A copy of the survey is attached.

In relation to the training of health and social care professionals, it is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from the ME Research Collaborative (MERC) Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.

The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision. More information about the interim plan is available on the GOV.UK website, in an online only format.

Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the plan meets the needs of the ME community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation on the interim delivery plan on ME, and will publish a final delivery plan later this year.

In relation to the monitoring of social care provision for individuals with ME, the Department has made a landmark shift in how we hold local authorities to account for their adult social care duties, through a new Care Quality Commission (CQC) assessment. The CQC will examine how well local authorities deliver their Care Act duties, increasing transparency and accountability and, most importantly, driving improved outcomes for people, including those with ME, who draw on care and support. The CQC completed five pilot assessments and is now rolling out assessment to all local authorities.


Non-Departmental Publication (Guidance and Regulation)
UK Export Finance (UKEF)

Apr. 04 2024

Source Page: Category A project under consideration: Electrification Project, Uíge Province, Angola
Document: Environmental and Social Impact Assessment for Uige Electrification Project – Lot 1, Phase 2 (PDF)

Found: cardiovascular and nervous systems; high concentrations of CO can create dizziness, headaches and fatigue


Departmental Publication (Statistics)
Department for Work and Pensions

Mar. 25 2024

Source Page: Digital skills, channel preference, and access needs: Personal Independence Payment customers
Document: Digital skills, channel preference, and access needs: Personal Independence Payment customers (PDF)

Found: condition (61%) or other conditions and disabilities (67%) like problems due to alcohol or other drugs, or fatigue


Departmental Publication (Statistics)
Department for Work and Pensions

Mar. 25 2024

Source Page: Digital skills, channel preferences and access needs: DWP customers
Document: Digital skills, channel preferences and access needs: DWP customers (PDF)

Found: Asperger’s syndrome / Autism / Autism Spectrum Disorder MUSCULO -SKELETAL / PHYSICAL INJURY 6.


Departmental Publication (News and Communications)
Department for Work and Pensions

Mar. 21 2024

Source Page: Flagship youth employment programme hits one million milestone
Document: review (PDF)

Found: Status syndrome . Bloomsbury, London. Marmot M, Wilkinson RG. 2006.


Departmental Publication (Transparency)
Ministry of Defence

Mar. 19 2024

Source Page: FOI responses published by MOD: week commencing 18 March 2024
Document: Joining the Royal Navy with spinal surgery for Scheuremann's disease (JSP 950) (PDF)

Found: (Accessed Sep 16). 4-N-3 JSP 950 Lft 6 -7-7 (V1. 6 Aug 19) Chronic fatigue syndrome and associated