Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 28 October 2025 (HL10911), what evidence the Clinical Panel considered in their 2021 review of the Clinical Commissioning Policy: Gastroelectrical stimulation for gastroparesis, published in 2016.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as gastroparesis under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework.
NHS England’s Clinical Panel considered evidence submitted to review the existing commissioning policy on gastroelectrical stimulation for gastroparesis. This included three evidence papers: a prospectively collected database summary from national gastroparesis registries from the US; a paper comparing surgical treatment (pyloric surgery) with gastric electric stimulation; and an outcome paper from 2011, assessing the long-term clinical outcomes of gastric electrical stimulation therapy using a single manufacturers device.
The evidence considered was more recent than that included in the original 2016 evidence review. However, NHS England concluded that the additional evidence was limited and did not constitute a sufficiently robust clinical evidence base to support any revision to the current policy position, under which the procedure is not routinely commissioned. Clinicians may trigger a review of NHS England’s commissioning policies if new evidence is published.
NHS England does not hold data identifying the number of patients who have received gastric electrical stimulation in each of the past five years. There are a small number of patients who had an electrical stimulator inserted before the ‘not for routine commissioning’ policy was published, who will have presented to services for battery changes.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how many gastroparesis patients have received gastric electrical stimulation by the NHS in England in each of the past five years.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as gastroparesis under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework.
NHS England’s Clinical Panel considered evidence submitted to review the existing commissioning policy on gastroelectrical stimulation for gastroparesis. This included three evidence papers: a prospectively collected database summary from national gastroparesis registries from the US; a paper comparing surgical treatment (pyloric surgery) with gastric electric stimulation; and an outcome paper from 2011, assessing the long-term clinical outcomes of gastric electrical stimulation therapy using a single manufacturers device.
The evidence considered was more recent than that included in the original 2016 evidence review. However, NHS England concluded that the additional evidence was limited and did not constitute a sufficiently robust clinical evidence base to support any revision to the current policy position, under which the procedure is not routinely commissioned. Clinicians may trigger a review of NHS England’s commissioning policies if new evidence is published.
NHS England does not hold data identifying the number of patients who have received gastric electrical stimulation in each of the past five years. There are a small number of patients who had an electrical stimulator inserted before the ‘not for routine commissioning’ policy was published, who will have presented to services for battery changes.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of clinical trials of donanemab and lecanemab for treating Alzheimer's conditions; and whether they plan to provide those drugs through the NHS.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In England, the National Institute for Health and Care Excellence (NICE) is responsible for assessing whether new medicines should be routinely funded by the National Health Service, based on a careful evaluation of clinical and cost effectiveness.
NICE is currently evaluating both lecanemab and donanemab and has not yet published final guidance. NICE was unable to recommend either treatment in its final draft guidance, concluding that the benefits observed in clinical trials, when weighed against the risks and the overall cost, meant they could not currently be considered good value for the NHS. NICE’s independent Appeal Panel has upheld appeals against NICE’s draft recommendations, and its Appraisal Committee will meet to consider the appraisals on 10 June.
The Government has not made a separate assessment of the clinical trials beyond NICE’s independent evaluation.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government why patients in England who suffer from gastroparesis cannot receive gastric pacemaker surgery on the NHS.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England does not routinely commission gastric pacemaker surgery, also known as gastro electrical stimulation, for the treatment of gastroparesis. This is because a detailed evidence review conducted in 2016 concluded that there was insufficient robust clinical evidence to demonstrate that the procedure is both clinically effective and cost‑effective for patients.
In 2021, NHS England reviewed the position relating to the surgical insertion of gastric electrical stimulators for the treatment of refractory gastroparesis. The Clinical Panel noted that whilst the evidence base presented was newer, it was still not a strong enough clinical evidence base to prompt a review of the existing policy position.
NHS England continues to keep the evidence base for specialised treatments under review, and any future commissioning decisions would be informed by new, high‑quality evidence demonstrating clear clinical and cost‑effectiveness.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government why patients in England who suffer from gastroparesis cannot receive gastric pacemaker surgery on the NHS when such surgery is funded for patients with gastroparesis in other regions of the United Kingdom.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In 2016, NHS England conducted a detailed evidence review and concluded that there was insufficient robust evidence to justify the routine commissioning of gastroelectrical stimulation, also referred to as a gastric pacemaker, for the treatment of gastroparesis. A copy of the policy statement which NHS England published is attached. The reason for this decision was that there was insufficient clinical evidence that the procedure is both clinically effective and cost-effective.
In April 2021, NHS England reviewed the position relating to the surgical insertion of gastric electrical stimulators for the treatment of refractory gastroparesis. The Clinical Panel noted that whilst the evidence base presented was newer, it was still not a strong enough clinical evidence base to prompt a review of the existing policy position.
Clinicians may trigger a review of NHS England’s commissioning policies if new evidence is published. NHS England remains committed to funding clinically effective treatments where they are supported by strong evidence and are affordable for the National Health Service.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what provisions are in place to support the families and caregivers of individuals with rare diseases.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
Each year since 2021, we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan. In this plan we recognised that significant challenges exist with access to mental health and psychological support for people living with rare conditions, as well as their families and carers. During this year we have taken steps to further understand the challenges faced through a workshop, and have begun to address these needs by developing resources to better equip the workforce to provide support.
The enormous contribution of unpaid carers, including those caring for individuals with rare diseases, is reflected throughout the Next Steps to Put People at the Heart of Care, published in April 2023. Furthermore, the Better Care Fund in 2023/24 includes £327 million for carers support, including short breaks and respite services for carers. This also funds advice and support to carers, and a small number of additional local authority duties. The Accelerating Reform Fund also provides support for unpaid carers. The Government is developing a new survey of unpaid carers which will capture the wide range of experiences, circumstances, and needs of unpaid carers across England. Through the National Institute for Health and Care Research, an evaluation of the support provided to unpaid carers funded through the Better Care Fund has been commissioned, which will improve the understanding of what support works best for unpaid carers.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure equitable access to specialised care and support for patients with rare diseases across England.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
In January 2021, the Government published the UK Rare Diseases Framework, providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities, collaboratively developed with the rare disease community, which are: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs. The principles of the UK Rare Diseases Framework commit the four nations to ensuring that any impacts on health inequalities are considered when developing action plans.
Each year since 2021 we have published an England Rare Diseases Action Plan, with health equity highlighted as a focus area. On 29 February 2024 we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year and previous year’s action plans, that relate to equitable access to specialised care and support for patients with rare diseases.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to support research and development of treatments for patients with haemochromatosis.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
The National Institute for Health and Care Research is currently directly funding one ongoing study on haemochromatosis, and over the last five years, has funded infrastructure to support seven others.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to increase funding and support for Alzheimer's research to accelerate the development of effective treatments and improve early diagnosis techniques.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
The Government is strongly committed to supporting research into dementia and has committed to double funding for dementia research, to £160 million per year, by the end of 2024/25. This will span all areas of research, including diagnosis and treatment of dementia, and more specifically Alzheimer’s disease.
The Government has allocated up to £120 million to the Dame Barbara Windsor Dementia Mission, which aims to speed up the development of new treatments through innovations in biomarkers, clinical trials, and implementation.
Alongside the mission, the Department, via the National Institute for Health and Care Research (NIHR), is funding a range of research to accelerate the development of effective treatments and to improve early diagnosis techniques. This includes investing almost £50 million into the NIHR’s Dementia Translational Research Collaboration Trials Network. This will expand the United Kingdom’s early phase clinical trial capabilities in dementia, speeding up the development of new treatments, and funding to the Blood Biomarker Challenge which could make the case for the use of a blood test in the National Health Service, to support diagnosis of dementia, including Alzheimer’s disease.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to improve early diagnosis and intervention for children with autism spectrum disorders.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
We recognise timely identification of autism can play an important role in enabling children and young people to get appropriate support, which is crucial in preventing escalation of needs. We expect integrated care boards (ICBs) to have due regard to National Institute for Health and Care Excellence (NICE) guidelines on autism when commissioning services. It is the responsibility of ICBs to make available appropriate provision to meet the health and care needs of their local population in line with these NICE guidelines, including in relation to autism assessment. While we want every area to meet NICE guidance, we recognise that this is not happening everywhere.
On 5 April 2023, NHS England published a national framework and operational guidance for autism assessment services in an online-only format. This guidance will help the National Health Service improve autism assessment services and improve the experience for people referred to an autism assessment service. This includes guidance to local areas on how to manage referrals and the support that should be available whilst people are waiting for an assessment and after.
In 2023/2024, £4.2 million of funding is available across England to improve services for autistic children and young people, including autism assessment services. We are also working in partnership with the Department for Education and NHS England on ‘Partnerships for Inclusion of Neurodiversity in School’ (PINS), with £13 million of funding to test ideas that will improve access to specialist support for neurodiverse children in mainstream primary schools.
Each ICB in England is expected to have an Executive Lead for learning disability and autism, supporting the Board in planning to meet the needs of its local population of people with a learning disability and autistic people, including in relation to appropriate autism assessment pathways. NHS England has published guidance on these roles.