Asked by: Alison Bennett (Liberal Democrat - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to Coroner Deborah Archer's report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, reference 2024-0530, dated 7 October 2024, what steps he has taken to ensure that the (a) care for patients and (b) training available for (i) GPs, (ii) hospital doctors and (ii) other health workers on treating patients with myalgic encephalomyelitis and chronic fatigue syndrome is adequate.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
We are committed to improving care and support for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
The Department has reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations. With stakeholder engagement via the ME/CFS Task and Finish Group, we are developing the final delivery plan for ME/CFS, which we aim to publish by the end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
The Department is also working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available. The third session will become available later in 2025.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
NHS England is currently undertaking a stocktake, commissioned in September 2024 and due at the end of January 2025, that will provide a more accurate, in-depth overview of the position of post-COVID-19 services across England. The scope of this commission has been extended to include ME/CFS services.
Asked by: Alison Bennett (Liberal Democrat - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will have discussions with representatives of Forgotten Lives UK on access to (a) preventative treatments and (b) support services for immunosuppressed people.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
Ensuring that the United Kingdom is prepared for a future pandemic is a top priority for the Government, and we are embedding lessons from the COVID-19 pandemic within our approach to pandemic preparedness.
Whilst we cannot predict the exact timing or characteristics of a future pandemic, the Department acknowledges the disproportionate impact of pandemics on particular groups, including the immunocompromised and those who are otherwise clinically vulnerable.
The Department’s new strategic approach to pandemic preparedness recognises that pandemic planning needs to take account of all health inequalities.
COVID-19 tests and treatments are a National Health Service role at the present time. The UK Health Security Agency and NHS partners have met recently to discuss system wide communications on the testing and treatment pathways for COVID-19, to ensure that those who are eligible can access these without delay.
There are currently no discussions planned with representatives of Forgotten Lives UK.
Asked by: Alison Bennett (Liberal Democrat - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has had discussions with the National Institute for Health and Care Excellence on the licensing process for the drug sipavibart.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Department officials regularly discuss a range of topics with the National Institute for Health and Care Excellence (NICE), including progress with specific appraisals, such as for sipavibart.
The NICE started its appraisal of the medicine sipavibart for preventing COVID-19, ahead of the Medicines and Healthcare products Regulatory Agency’s (MHRA) decision on whether it should be licensed in the United Kingdom, with the aim of publishing guidance as soon as possible, if a licence was granted. At present, the NICE appraisal is suspended as AstraZeneca has been unable to provide an evidence submission as planned. The NICE is currently awaiting notification from AstraZeneca on when it can make a submission, and will update stakeholders in due course.
If sipavibart is recommended as clinically and cost effective by the NICE, the National Health Service in England will be legally required to fund sipavibart for eligible patients in line with the NICE’s recommendations, normally within three months of final guidance being published.
Asked by: Alison Bennett (Liberal Democrat - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he is taking steps to increase awareness amongst GPs of the signs and symptoms of cardiomyopathy.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
As part of the 2023 England Rare Disease Action Plan, NHS England’s Genomics Education Programme has developed GeNotes, to increase the awareness of genetic and rare diseases amongst healthcare professionals. GeNotes puts information on genetic and rare diseases at the fingertips of healthcare professionals, including general practitioners. The GeNotes resource has a cardiology speciality section and includes several pages on cardiomyopathies. Further information on GeNotes more generally and about the cardiology speciality section specifically is available, respectively, at the following two links:
https://www.genomicseducation.hee.nhs.uk/genotes/
https://www.genomicseducation.hee.nhs.uk/genotes/cardiology/
Furthermore, cardiac networks of care, established locally to ensure joined up patient pathways, provide support in raising awareness of inherited cardiac conditions, including cardiomyopathy, across healthcare providers, in accordance with the services specification for inherited cardiac conditions, which is available at the following link:
https://www.england.nhs.uk/publication/cardiology-inherited-cardiac-conditions-all-ages/