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 when the major conditions strategy will be published.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Our intention is to publish the Major Conditions Strategy in the summer of this year.
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.
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 whether they will encourage the National Institute for Health and Care Research to rigorously evaluate existing research efforts and review how they can further prioritise and drive research investment for pancreatic cancer and other less survivable cancers.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Research is crucial in the fight against cancer, which is why the Department invests £1 billion per year in health research through the National Institute for Health and Care Research (NIHR). NIHR research expenditure for all cancers was £121 million for 2022/23.
In terms of establishing targeted funding into pancreatic cancer, the NIHR funds research in response to proposals received from scientists rather than allocating funding to specific disease areas. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
The Government, through the NIHR, is committed to improving research into pancreatic cancer and cancers with the poorest survival rates by funding high quality, timely research that leads to improved outcomes for patients and the public, and makes the health and social care system more efficient, effective, and safe. Research evidence is vital for improving treatments and outcomes for people, including those with pancreatic cancer and other less survivable cancers.
In 2023, the Government awarded £2 million to new interdisciplinary research teams tackling hard to treat cancers, via the Medical Research Council, which hosted a two-day cancer sandpit strategic funding opportunity, focused on technological innovation for understanding cancers with the poorest survival rates.
The NIHR has funded seven research projects for pancreatic cancer for the period 2019 to 2023, with a total committed spend of approximately £3.6 million. The NIHR also supports the delivery of pancreatic cancer research funded by those in the charity and public sectors. For example, since 2019, the NIHR Clinical Research Network has supported over 70 pancreatic cancer-related studies.
The NIHR continues to encourage and welcome applications for research into any aspect of human health, including pancreatic cancer. All applications are assessed for funding by peer review committees. The level of research spend in a particular area is driven by factors including the quality of the proposals and their scientific potential. All applications for research into pancreatic cancer and other less survivable cancers made through open competition have been funded.
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 whether they will establish targeted funding to prioritise and drive research investment into pancreatic cancer and the other less survivable cancers.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Research is crucial in the fight against cancer, which is why the Department invests £1 billion per year in health research through the National Institute for Health and Care Research (NIHR). NIHR research expenditure for all cancers was £121 million for 2022/23.
In terms of establishing targeted funding into pancreatic cancer, the NIHR funds research in response to proposals received from scientists rather than allocating funding to specific disease areas. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
The Government, through the NIHR, is committed to improving research into pancreatic cancer and cancers with the poorest survival rates by funding high quality, timely research that leads to improved outcomes for patients and the public, and makes the health and social care system more efficient, effective, and safe. Research evidence is vital for improving treatments and outcomes for people, including those with pancreatic cancer and other less survivable cancers.
In 2023, the Government awarded £2 million to new interdisciplinary research teams tackling hard to treat cancers, via the Medical Research Council, which hosted a two-day cancer sandpit strategic funding opportunity, focused on technological innovation for understanding cancers with the poorest survival rates.
The NIHR has funded seven research projects for pancreatic cancer for the period 2019 to 2023, with a total committed spend of approximately £3.6 million. The NIHR also supports the delivery of pancreatic cancer research funded by those in the charity and public sectors. For example, since 2019, the NIHR Clinical Research Network has supported over 70 pancreatic cancer-related studies.
The NIHR continues to encourage and welcome applications for research into any aspect of human health, including pancreatic cancer. All applications are assessed for funding by peer review committees. The level of research spend in a particular area is driven by factors including the quality of the proposals and their scientific potential. All applications for research into pancreatic cancer and other less survivable cancers made through open competition have been funded.
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 steps they have taken to ensure that NHS trusts are made aware of (1) insourcing arrangements as a route to reducing local waiting lists, and (2) the benefits of insourcing for (a) patients, and (b) NHS trusts.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Independent sector providers have a significant role to play in supporting the National Health Service as trusted partners, to recover elective services. The Elective Recovery Taskforce was launched in 2022 to consider how capacity across the system could be best utilised, including how insourcing could be used to meet the ambitions on long waits. The taskforce concluded its work by publishing an implementation plan in August 2023, which sets out a series of actions that have either been delivered, or will be delivered, over the coming months.
Local systems are best placed to consider how to utilise insourcing as part of their delivery plans, in a way which works for their areas. To support the system, NHS England produced Guidance for trusts on the use of insourcing and NHS Shared Business Services produced the Insourcing of Clinical Services Framework Agreement.
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 recent assessment they have made regarding the potential for insourcing to tackle NHS waiting lists.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Independent sector providers have a significant role to play in supporting the National Health Service as trusted partners, to recover elective services. The Elective Recovery Taskforce was launched in 2022 to consider how capacity across the system could be best utilised, including how insourcing could be used to meet the ambitions on long waits. The taskforce concluded its work by publishing an implementation plan in August 2023, which sets out a series of actions that have either been delivered, or will be delivered, over the coming months.
Local systems are best placed to consider how to utilise insourcing as part of their delivery plans, in a way which works for their areas. To support the system, NHS England produced Guidance for trusts on the use of insourcing and NHS Shared Business Services produced the Insourcing of Clinical Services Framework Agreement.
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 deficiency in NHS England’s Secure Data Environment was described in paragraph 5.1.10 of the minutes from the 29 February meeting of the Advisory Group for Data, and what steps are being taken to rectify that deficiency.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The point made in the meeting was unrelated to any deficiency within the Secure Data Environment (SDE). The requirement from the Home Office is for specific statistical models and systems to be applied across the dataset requested, which is made up of aggregated data. This specific functionality is available from within the Home Office’s own technical environment, and not from within the SDE. There are no plans at this time to migrate this functionality within the SDE.
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 how much research funding the National Institute for Health and Care Research and the Medical Research Council have invested in biomedical studies of the causes and treatment of myalgic encephalomyelitis (ME) and non-biomedical studies of ME since 2019.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). Since 2019, the NIHR has awarded £1.9 million for research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The Medical Research Council (MRC), part of UK Research and Innovation (UKRI), has invested £3.6 million since 2019.
This funding includes the NIHR and UKRI co-funded DecodeME study, a £3.2 million study into the genetic underpinning of ME. The study will analyse samples from 25,000 people with ME, to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease, and therefore contribute to the research base on diagnostic tests and targeted treatments for ME.
In 2020, the NIHR, the Chief Scientist Office in Scotland, and the MRC also funded the James Lind Alliance Priority Setting Partnership for ME, facilitated by the charity Action for ME. The report sets out the top 10 research priorities for ME. These recommendations have been co-produced through a process led by a steering group of people living with ME, carers, and clinicians.
In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.
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 recent assessment they have made of the role of insourcing as a solution to eliminating waiting list backlogs for elective procedures.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Independent sector providers have a significant role to play in supporting the National Health Service as trusted partners, to recover elective services. The Elective Recovery Taskforce was launched in 2022 to consider how capacity across the system could be best utilised, including how insourcing could be used to meet the ambitions on long waits. The taskforce concluded its work by publishing an implementation plan in August 2023, which sets out a series of actions that have either been delivered, or will be delivered, over the coming months.
Local systems are best placed to consider how to utilise insourcing as part of their delivery plans, in a way which works for their areas. To support the system, NHS England produced Guidance for trusts on the use of insourcing and NHS Shared Business Services produced the Insourcing of Clinical Services Framework Agreement.
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 progress they have made on the funding of biomedical research into myalgic encephalomyelitis (ME) since the then Parliamentary Under Secretary of State for Health and Social Care stated on 24 January 2019 that “there have not been good enough research proposals in the ME space, partly because of the stigma … and partly because of the division in the medical community”.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). Since 2019, the NIHR has awarded £1.9 million for research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The Medical Research Council (MRC), part of UK Research and Innovation (UKRI), has invested £3.6 million since 2019.
This funding includes the NIHR and UKRI co-funded DecodeME study, a £3.2 million study into the genetic underpinning of ME. The study will analyse samples from 25,000 people with ME, to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease, and therefore contribute to the research base on diagnostic tests and targeted treatments for ME.
In 2020, the NIHR, the Chief Scientist Office in Scotland, and the MRC also funded the James Lind Alliance Priority Setting Partnership for ME, facilitated by the charity Action for ME. The report sets out the top 10 research priorities for ME. These recommendations have been co-produced through a process led by a steering group of people living with ME, carers, and clinicians.
In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.