Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he (a) has taken and (b) is taking to (i) increase and (ii) improve the availability of specialist clinical provision for people with Huntington’s Disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease.
Surrey Heartlands Integrated Care Board (ICB) commissions a specialist service that provides support to people with Huntington’s Disease. The service works closely with the Huntington’s Disease clinic at St George’s University Hospitals NHS Foundation Trust. As of November 2024, there are 18 full time equivalent neurology consultants employed in National Health Service trusts within the Surrey Heartlands ICB region. This is seven more than a year previously.
At the national level, there are several initiatives supporting service improvement and better care for patients with neurological conditions, including those with Huntington’s disease, such as the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services. The National Neurosciences Advisory Group developed clinical pathways for adults with movement disorders, including Huntington’s disease. This is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many and what proportion of integrated care boards have specialist clinicians for Huntington’s Disease; and whether Surrey Heartlands ICB has specialist clinicians for Huntington’s Disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease.
Surrey Heartlands Integrated Care Board (ICB) commissions a specialist service that provides support to people with Huntington’s Disease. The service works closely with the Huntington’s Disease clinic at St George’s University Hospitals NHS Foundation Trust. As of November 2024, there are 18 full time equivalent neurology consultants employed in National Health Service trusts within the Surrey Heartlands ICB region. This is seven more than a year previously.
At the national level, there are several initiatives supporting service improvement and better care for patients with neurological conditions, including those with Huntington’s disease, such as the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services. The National Neurosciences Advisory Group developed clinical pathways for adults with movement disorders, including Huntington’s disease. This is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to establish a specialist Huntington’s Disease Centre in Surrey.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease.
Surrey Heartlands Integrated Care Board (ICB) commissions a specialist service that provides support to people with Huntington’s Disease. The service works closely with the Huntington’s Disease clinic at St George’s University Hospitals NHS Foundation Trust. As of November 2024, there are 18 full time equivalent neurology consultants employed in National Health Service trusts within the Surrey Heartlands ICB region. This is seven more than a year previously.
At the national level, there are several initiatives supporting service improvement and better care for patients with neurological conditions, including those with Huntington’s disease, such as the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services. The National Neurosciences Advisory Group developed clinical pathways for adults with movement disorders, including Huntington’s disease. This is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
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 improve treatment outcomes for people with Huntington’s Disease; and what research his Department is supporting into that disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease. One of the priorities of the Framework is improving access to specialist care, treatment and drugs. In England, we published the 2025 Rare Diseases Action Plan on 28 February 2025, which provides further information.
The Department funds research into Huntington’s disease via the National Institute for Health and Care Research (NIHR). The NIHR welcomes high quality funding applications for research into any aspect of human health and care, including Huntington’s disease. For example, the NIHR’s UCL Biomedical Research Centre (BRC) supported the TRACK-HD study. This identified biomarkers for Huntington’s disease and generated a database of brain scans available to scientists and led to the development of a rating scale to measure disease progression. BRC-funded researchers have also developed the first human test for the protein, which has now been validated and used as an endpoint in clinical trials.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
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 increase the availability of specialist clinical provision for people with Huntington’s Disease in Surrey.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease.
Integrated care boards (ICBs) are responsible for working with their local communities to understand the needs of the local populations and make decisions about how best to commission services that meet those needs, including the treatment of Huntington’s Disease, in partnership with other local commissioners and organisations. Details on local clinical provisions are best answered by the ICB, in this case NHS Surrey Heartlands.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
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 merits of routine monitoring of infant head circumference after 8 weeks of age as a diagnostic tool for early identification of hydrocephalus.
Answered by Andrew Gwynne
It is vitally important that babies are diagnosed as early as possible so treatment can be provided. Current National Institute for Health and Care Excellence (NICE) guidance recommends measuring the head circumference of babies in the first week, at approximately eight weeks, and at other times only if there are concerns. The baby’s general practitioner, or nominated primary care examiner, has responsibility for ensuring the six-to-eight-week newborn infant physical examination screen, where head size is measured, is completed for all registered babies. The Department is seeking advice from the NICE and the royal colleges on the value of a clinical review of the current guidelines surrounding infant head circumference.
The Healthy Child Programme sets out the requirements for health visiting services, including five mandated reviews, where the child’s health and development is assessed. This includes when the baby is 10 to 14 days old, and at six to eight weeks old, as well as additional contacts depending on need, providing an opportunity to identify any health or development concerns and to make appropriate referrals. The Department and the NHS National Disease Registration Service do not hold information on the proportion of infants diagnosed after eight weeks.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what proportion of infants with hydrocephalus initially present symptoms after 8 weeks of age.
Answered by Andrew Gwynne
It is vitally important that babies are diagnosed as early as possible so treatment can be provided. Current National Institute for Health and Care Excellence (NICE) guidance recommends measuring the head circumference of babies in the first week, at approximately eight weeks, and at other times only if there are concerns. The baby’s general practitioner, or nominated primary care examiner, has responsibility for ensuring the six-to-eight-week newborn infant physical examination screen, where head size is measured, is completed for all registered babies. The Department is seeking advice from the NICE and the royal colleges on the value of a clinical review of the current guidelines surrounding infant head circumference.
The Healthy Child Programme sets out the requirements for health visiting services, including five mandated reviews, where the child’s health and development is assessed. This includes when the baby is 10 to 14 days old, and at six to eight weeks old, as well as additional contacts depending on need, providing an opportunity to identify any health or development concerns and to make appropriate referrals. The Department and the NHS National Disease Registration Service do not hold information on the proportion of infants diagnosed after eight weeks.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many community pharmacies have closed in (a) Surrey and (b) Esher and Walton constituency in each year since 2019.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Since 2019, there have been a total of 39 pharmacy closures in Surrey, and four in the Esher and Walton Constituency. In Surrey, this has broken down as: seven closures in 2019; six in 2020; four in 2021; two in 2022; and 15 in 2023, with a further five having closed between January and 30 September 2024. In Esher and Walton, there were no closures between 2019 and 2022. Three closed in 2023, and one closed between January and 30 September 2024.
We are aware of the reduction in the number of pharmacies in recent years, and recognise that pharmacy closures can impact on local communities. Local authorities are required to undertake a pharmaceutical needs assessment (PNA) every three years to assess whether their population is adequately served, and must keep these assessments under review. Integrated care boards give regard to the PNAs when reviewing applications from the new contractors. Contractors can also apply to open a new pharmacy to offer benefits to patients that were not foreseen by the PNA.
Patients can also access the approximately 400 Distance Selling Pharmacies who must operate nationally and send medicines to patients’ home free of charge. In rural areas, dispensing doctors can also supply medicines.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential impact of community pharmacy closures on (a) local health provision and (b) patient outcomes in (i) England and (ii) Surrey.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Since 2019, there have been a total of 39 pharmacy closures in Surrey, and four in the Esher and Walton Constituency. In Surrey, this has broken down as: seven closures in 2019; six in 2020; four in 2021; two in 2022; and 15 in 2023, with a further five having closed between January and 30 September 2024. In Esher and Walton, there were no closures between 2019 and 2022. Three closed in 2023, and one closed between January and 30 September 2024.
We are aware of the reduction in the number of pharmacies in recent years, and recognise that pharmacy closures can impact on local communities. Local authorities are required to undertake a pharmaceutical needs assessment (PNA) every three years to assess whether their population is adequately served, and must keep these assessments under review. Integrated care boards give regard to the PNAs when reviewing applications from the new contractors. Contractors can also apply to open a new pharmacy to offer benefits to patients that were not foreseen by the PNA.
Patients can also access the approximately 400 Distance Selling Pharmacies who must operate nationally and send medicines to patients’ home free of charge. In rural areas, dispensing doctors can also supply medicines.
Asked by: Monica Harding (Liberal Democrat - Esher and Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve the (a) performance of and (b) patient experience at the GP practices in the bottom 5% of the 2024 GP Patient Survey.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
We know that general practices (GPs) are working hard to deliver for their patients, and are delivering more appointments than ever before, however we know that some patients are struggling to access the care they need, and GPs are struggling to deliver it.
The GP Contract requires NHS England to arrange an annual review of GP contractors’ performance against their contractual obligations. Integrated care boards also consider concerns or complaints raised by patients, and can take action where services are not meeting the needs of their local population.