Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to help improve recruitment and training of specialists in Ehlers-Danlos syndromes.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise that doctors can find it challenging to diagnose Ehlers-Danlos syndrome (EDS) because of the wide range and variability of symptoms, and that the most common type, hypermobile EDS, currently has no specific genetic test.
Resources such as the Royal College of General Practitioners’ EDS Toolkit, now maintained by Ehlers-Danlos Support UK, are helping general practitioners (GPs) to better recognise, respond to, and manage EDS and hypermobility spectrum disorders (HSD) in primary care. For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service for EDS.
A primary goal of the national diagnostic service is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefit GPs who are on the front line of patient care.
Through the 10-Year Health Plan, we are introducing neighbourhood health centres, and deploying multidisciplinary teams to provide holistic support to people with EDS. Patients will benefit from enhanced NHS App functionality, including My Medicines and My Health, and will be able to self-refer to specialist services where appropriate.
Additionally, the 10-Year Health Plan’s commitments on artificial intelligence will give clinicians advanced tools for faster diagnosis, predictive analytics, and personalised care planning. For people with long-term conditions like EDS, this means earlier interventions, better monitoring of complex needs, and more time for clinicians to focus on patient-centred care rather than administrative tasks. The plan also commits to 95% of people with complex needs to have a personalised care plan by 2027.
The Government will publish the 10 Year Workforce Plan in spring 2026. It will set out action to create a workforce ready to deliver the transformed service set out in the 10-Year Health Plan. By setting out how we will train and provide the staff, technology, and infrastructure the NHS needs, the 10 Year Workforce Plan will ensure that services are more accessible, proactive, and tailored for all patients, including those with EDS.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to help improve treatment and specialist care of those with Ehlers-Danlos syndromes.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise that doctors can find it challenging to diagnose Ehlers-Danlos syndrome (EDS) because of the wide range and variability of symptoms, and that the most common type, hypermobile EDS, currently has no specific genetic test.
Resources such as the Royal College of General Practitioners’ EDS Toolkit, now maintained by Ehlers-Danlos Support UK, are helping general practitioners (GPs) to better recognise, respond to, and manage EDS and hypermobility spectrum disorders (HSD) in primary care. For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service for EDS.
A primary goal of the national diagnostic service is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefit GPs who are on the front line of patient care.
Through the 10-Year Health Plan, we are introducing neighbourhood health centres, and deploying multidisciplinary teams to provide holistic support to people with EDS. Patients will benefit from enhanced NHS App functionality, including My Medicines and My Health, and will be able to self-refer to specialist services where appropriate.
Additionally, the 10-Year Health Plan’s commitments on artificial intelligence will give clinicians advanced tools for faster diagnosis, predictive analytics, and personalised care planning. For people with long-term conditions like EDS, this means earlier interventions, better monitoring of complex needs, and more time for clinicians to focus on patient-centred care rather than administrative tasks. The plan also commits to 95% of people with complex needs to have a personalised care plan by 2027.
The Government will publish the 10 Year Workforce Plan in spring 2026. It will set out action to create a workforce ready to deliver the transformed service set out in the 10-Year Health Plan. By setting out how we will train and provide the staff, technology, and infrastructure the NHS needs, the 10 Year Workforce Plan will ensure that services are more accessible, proactive, and tailored for all patients, including those with EDS.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to help ensure that people with Ehlers-Danlos syndromes are quickly and accurately diagnosed.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise that doctors can find it challenging to diagnose Ehlers-Danlos syndrome (EDS) because of the wide range and variability of symptoms, and that the most common type, hypermobile EDS, currently has no specific genetic test.
Resources such as the Royal College of General Practitioners’ EDS Toolkit, now maintained by Ehlers-Danlos Support UK, are helping general practitioners (GPs) to better recognise, respond to, and manage EDS and hypermobility spectrum disorders (HSD) in primary care. For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service for EDS.
A primary goal of the national diagnostic service is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefit GPs who are on the front line of patient care.
Through the 10-Year Health Plan, we are introducing neighbourhood health centres, and deploying multidisciplinary teams to provide holistic support to people with EDS. Patients will benefit from enhanced NHS App functionality, including My Medicines and My Health, and will be able to self-refer to specialist services where appropriate.
Additionally, the 10-Year Health Plan’s commitments on artificial intelligence will give clinicians advanced tools for faster diagnosis, predictive analytics, and personalised care planning. For people with long-term conditions like EDS, this means earlier interventions, better monitoring of complex needs, and more time for clinicians to focus on patient-centred care rather than administrative tasks. The plan also commits to 95% of people with complex needs to have a personalised care plan by 2027.
The Government will publish the 10 Year Workforce Plan in spring 2026. It will set out action to create a workforce ready to deliver the transformed service set out in the 10-Year Health Plan. By setting out how we will train and provide the staff, technology, and infrastructure the NHS needs, the 10 Year Workforce Plan will ensure that services are more accessible, proactive, and tailored for all patients, including those with EDS.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will take steps to include provisions relating to the treatment and care of people with eating disorders in the forthcoming modern service framework for mental health.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The exact scope of the modern service framework for people with severe mental illness is currently under development with external stakeholders, but we expect that it will include care and treatment for people with eating disorders.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
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 ensure accountability for the equitable provision of palliative care.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Palliative care services are included in the list of services an integrated care board (ICB) must commission. To support ICBs in this duty, NHS England has published statutory guidance and service specifications. The statutory guidance states that ICBs must work to ensure that there is sufficient provision of care services to meet the needs of their local populations.
NHS England has also developed a palliative care and end of life care dashboard, which brings together all relevant local data in one place. The dashboard helps commissioners understand the palliative care and end of life care needs of their local population, enabling ICBs to put plans in place to address and track the improvement of health inequalities, and ensure that funding is distributed fairly, based on prevalence.
The Department and NHS England are currently looking at how to improve the access, quality, and sustainability of all-age palliative care and end of life care in line with the 10-Year Health Plan.
We will closely monitor the shift towards the strategic commissioning of palliative care and end of life care services to ensure that services reduce variation in access and quality, although some variation may be appropriate to reflect both innovation and the needs of local populations.
Additionally, through the National Institute for Health and Care Research, the Department is investing £3 million in a new Policy Research Unit in Palliative and End of Life Care. This unit launched in January 2024 and is building the evidence base on palliative care and end of life care, with a specific focus on inequalities.
On ICB accountability, NHS England has a legal duty to annually assess the performance of each ICB in respect of each financial year and to publish a summary of its findings. This assessment must assess how well the ICB has discharged its functions.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure equality of access to tofersen by people diagnosed with SOD1 motor neurone disease across England.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (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 NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
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 increase capacity in phlebotomy services.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Blood tests are among the most commonly requested diagnostic investigations across primary and secondary care, and they are readily available across all 27 National Health Service pathology networks. Phlebotomy – the procedure to collect blood samples – is widely available across general practice, community health services, and secondary care phlebotomy clinics, supporting equitable access to blood testing.
Where phlebotomy services are provided by general practice, they are commissioned locally by integrated care boards (ICBs). ICBs are responsible for commissioning phlebotomy services based on local population need and are funded for these services as part of their annual funding allocations.
In January 2025, we published the Elective Reform Plan, which sets out the productivity and reform efforts needed to return to the 18-week constitutional standard by the end of this parliament. The Plan commits to transform and expand diagnostic services and speed up waiting times for tests, a crucial part of reducing overall waiting times.
Community Diagnostic Centres (CDCs), including those in Gloucestershire and Herefordshire, are supporting one of the governments key strategic shifts – moving care from the hospital to the community. CDCs offer local populations a wide range of diagnostic tests, including phlebotomy, closer to home and greater choice on where and how they are undertaken.
We are continuing to invest in expanding diagnostic capacity in the NHS. As set out in the Elective Reform Plan, we plan to build up to five more CDCs in 2025/26, alongside increasing the operating hours of existing sites so that more offer services 12 hours a day, seven days a week. This is backed by part of the £600 million of capital investment for diagnostic services announced at the October 2024 Spending Review.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will hold discussions with the National Institute for Health and Care Excellence on the development of guidelines for PANS and PANDAS.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Decisions on topics for new or updated guidance from the National Institute for Health and Care Excellence (NICE) are considered through an established NICE prioritisation process with decisions overseen by a prioritisation board, chaired by NICE’s Chief Medical Officer.
NICE’s prioritisation board considered the development of guidance on paediatric acute-onset neuropsychiatric syndrome and paediatric autoimmune neuropsychiatric disorder associated with streptococcus in November 2024 and concluded that there is insufficient evidence in this area to develop useful guidance.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make it his policy to extend the eligibility criteria for the covid-19 vaccine to include people with asthma.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to protecting those most vulnerable to COVID-19 through vaccination, as guided by the independent Joint Committee on Vaccination and Immunisation (JCVI). The primary aim of the national COVID-19 vaccination programme remains the prevention of serious illness (hospitalisations and deaths) arising from COVID-19. Population immunity to COVID-19 has been increasing due to a combination of naturally acquired immunity following recovery from infection and vaccine-derived immunity. COVID-19 is now a relatively mild disease for most people, though it can still be unpleasant, with rates of hospitalisation and death from COVID-19 having reduced significantly since COVID-19 first emerged.
The focus of the JCVI advised programme has therefore moved towards targeted vaccination of the two groups who continue to be at higher risk of serious disease, including mortality. These are the oldest adults and individuals who are immunosuppressed.
On 13 November 2024, JCVI published advice on who should be offered vaccination in autumn 2025. On 26 June 2025, the Government accepted the JCVI’s advice that in autumn 2025, a COVID-19 vaccination should be offered to the following groups:
The Government has no plans to change eligibility for autumn 2025. It has accepted the JCVI advice for this campaign in full. As for all vaccines, the JCVI keeps the evidence under regular review.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of the geographic differences in the cost of abiraterone for high-risk prostate cancer patients in England.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The procurement of abiraterone for secondary care is currently part of NHS England’s generic wave tender structure. NHS England tenders two regions out of six at a time to encourage competition and to ensure supply chain resilience, awarding the top two compliant suppliers onto the framework each time. Prices may vary between regions, but within NHS England’s terms and conditions there is a price review mechanism whereby any price changes can be matched/applied in other regions. Also, within the tender there is a price limiter criterion which is applied so that only bids that are in line with market norms will be compliant.