Asked by: Navendu Mishra (Labour - Stockport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of precision medicine on the (a) life expectancy and (b) quality of life of people living with motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government’s 10-Year Health Plan sets out our vision for a future where genomic information and insights are fundamental to healthcare, enabling precision medicine, predictive prevention, and personalised treatment, including for people with motor neurone disease.
The National Institute for Health and Care Excellence has selected tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of National Health Service resources. If a positive recommendation is made, then NHS commissioners will be under a legal duty to fund the treatment for all eligible patients in England.
Asked by: Navendu Mishra (Labour - Stockport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve the (a) training and (b) awareness of healthcare professionals in (i) diagnosing and (ii) supporting people with (A) myalgic encephalomyelitis or chronic fatigue syndrome and (B) long COVID.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department published the final myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan on 22 July. The plan focusses on boosting research, improving education and attitudes, and bettering the lives of people with this debilitating disease.
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the ME/CFS Final Delivery Plan, the Department has worked 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. All three sessions of the e-learning programme are now available on the NHS.UK website, with sessions one and two having universal access whilst the third session is only available to healthcare professionals, at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will 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.
There is also targeted advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence, which is available at the following link:
https://www.nice.org.uk/guidance/NG188
Asked by: Navendu Mishra (Labour - Stockport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help (a) increase awareness of and (b) shorten diagnosis times for Postural Tachycardia Syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
To improve awareness of postural tachycardia syndrome (PoTS) amongst healthcare professionals, and specifically general practitioners (GPs), the Royal College of General Practitioners provides training on PoTS as part of its Syncope toolkit, which is available at the following link:
https://elearning.rcgp.org.uk/course/view.php?id=500
The Syncope toolkit includes an e-learning module, a podcast, and a webinar, and provides GPs with information about the diagnosis and management of PoTS. The webinar gives GPs the opportunity to hear the lived experience perspective of a patient representative from PoTS UK.
The National Institute for Care Excellence has also published a clinical knowledge summary on the clinical management of blackouts and syncope, that provides advice for clinicians in the United Kingdom on best practice in the assessment and diagnosis of PoTS. This was last updated in November 2023, and is available at the following link:
https://cks.nice.org.uk/topics/blackouts-syncope/diagnosis/assessment/
We are investing in additional capacity to deliver appointments to help bring waiting times down. The Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard, that 92% of patients to wait no longer than 18 weeks from Referral to Treatment, by March 2029.
We surpassed our pledge to deliver an extra two million elective appointments, having now delivered 5.2 million additional appointments in our first year of Government. Waiting lists are coming down, as they have fallen by over 206,000 since July 2024.