The Department has not taken steps to introduce additional infant head circumference measurements within routine health visiting contacts, since the clinical value of this is yet to be robustly established. However, we engaged widely with stakeholders when refreshing the Healthy Child Programme guidance, which specifies requirements for health visiting, and noted in the text, as per requests from the charity sector, that the purpose of all measurements should be explained to parents and all statutory health and development reviews should be conducted face-to-face.

The National Institute for Health and Care Excellence (NICE) guideline on postnatal care recommends measuring the weight and head circumference of babies in the first week and at around eight weeks, and at other times only if there are concerns. NICE guidelines are based on a thorough assessment of the available evidence and are developed through a rigorous process. NICE keeps its guidelines under active surveillance and would consider updating its recommendations in light of new evidence. NICE has no current plans to review its current guidance on head circumference measurement.

The timings of both the new birth and the six-to-eight week health and development review, which form part of the Healthy Child Programme, coincide with when NICE recommends head circumference measurements take place.

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including conditions such as normal pressure hydrocephalus.

These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Welcoming applications on conditions such as normal pressure hydrocephalus to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.

Between the 2020/21 and 2024/25 financial years, through the NIHR, the Department committed £1.72 million for 11 new research projects, supported by NIHR infrastructure, into normal pressure hydrocephalus and hydrocephalus more broadly. This includes committing £0.59 million in the 2024/25 financial year alone.

Details of NIHR funding allocated to individual research awards are openly published and updated quarterly on the Open Data page of the NIHR website, at the following link:

https://nihr.opendatasoft.com/explore/

The NIHR also works closely with other Government funders, including UK Research and Innovation, which is funded by the Department for Science, Innovation and Technology and which includes the Medical Research Council, to fund research into a range of conditions, including normal pressure hydrocephalus.

Neurology waiting times are coming down. Between December 2024 and December 2025, the average waiting time for neurology services was reduced from 16.2 to 15.2 weeks. Additionally, 57.0% of patients referred were seen within 18 weeks, up from 54.2% at the same point last year. However, there is more to do. We are continuing efforts to improve this, recognising this is a challenged specialty.

Diagnosis data of normal pressure hydrocephalus is not collected in the Waiting List Minimum Data Set. The NHS Dorset Integrated Care Board is unable to define waiting times for a specific diagnosis.

The National Institute for Health and Care Excellence has produced guidance on the recognition and referral of suspected neurological conditions, which was last updated in October 2023. This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition, such as hydrocephalus. It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation.

At the national level, there are ongoing initiatives to support service improvement and better care for people with neurological conditions, including NHS England’s Getting It Right First Time (GIRFT) Programme for Neurology, which aims to reduce unwarranted variation and share best practice across services. The GIRFT Programme has also produced a Further Faster handbook for neurology, which provides resources and best practice guidance to help support clinical teams to go faster and further in reducing neurology waiting times, including for patients with normal pressure hydrocephalus.

Neurology waiting times are coming down. Between December 2024 and December 2025, the average waiting time for neurology services was reduced from 16.2 to 15.2 weeks. Additionally, 57.0% of patients referred were seen within 18 weeks, up from 54.2% at the same point last year. However, there is more to do. We are continuing efforts to improve this, recognising this is a challenged specialty.

Diagnosis data of normal pressure hydrocephalus is not collected in the Waiting List Minimum Data Set. The NHS Dorset Integrated Care Board is unable to define waiting times for a specific diagnosis.

The National Institute for Health and Care Excellence has produced guidance on the recognition and referral of suspected neurological conditions, which was last updated in October 2023. This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition, such as hydrocephalus. It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation.

At the national level, there are ongoing initiatives to support service improvement and better care for people with neurological conditions, including NHS England’s Getting It Right First Time (GIRFT) Programme for Neurology, which aims to reduce unwarranted variation and share best practice across services. The GIRFT Programme has also produced a Further Faster handbook for neurology, which provides resources and best practice guidance to help support clinical teams to go faster and further in reducing neurology waiting times, including for patients with normal pressure hydrocephalus.

Neurology waiting times are coming down. Between December 2024 and December 2025, the average waiting time for neurology services was reduced from 16.2 to 15.2 weeks. Additionally, 57.0% of patients referred were seen within 18 weeks, up from 54.2% at the same point last year. However, there is more to do. We are continuing efforts to improve this, recognising this is a challenged specialty.

Diagnosis data of normal pressure hydrocephalus is not collected in the Waiting List Minimum Data Set. The NHS Dorset Integrated Care Board is unable to define waiting times for a specific diagnosis.

The National Institute for Health and Care Excellence has produced guidance on the recognition and referral of suspected neurological conditions, which was last updated in October 2023. This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition, such as hydrocephalus. It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation.

At the national level, there are ongoing initiatives to support service improvement and better care for people with neurological conditions, including NHS England’s Getting It Right First Time (GIRFT) Programme for Neurology, which aims to reduce unwarranted variation and share best practice across services. The GIRFT Programme has also produced a Further Faster handbook for neurology, which provides resources and best practice guidance to help support clinical teams to go faster and further in reducing neurology waiting times, including for patients with normal pressure hydrocephalus.

Neurology waiting times are coming down. Between December 2024 and December 2025, the average waiting time for neurology services was reduced from 16.2 to 15.2 weeks. Additionally, 57.0% of patients referred were seen within 18 weeks, up from 54.2% at the same point last year. However, there is more to do. We are continuing efforts to improve this, recognising this is a challenged specialty.

Diagnosis data of normal pressure hydrocephalus is not collected in the Waiting List Minimum Data Set. The NHS Dorset Integrated Care Board is unable to define waiting times for a specific diagnosis.

The National Institute for Health and Care Excellence has produced guidance on the recognition and referral of suspected neurological conditions, which was last updated in October 2023. This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition, such as hydrocephalus. It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation.

At the national level, there are ongoing initiatives to support service improvement and better care for people with neurological conditions, including NHS England’s Getting It Right First Time (GIRFT) Programme for Neurology, which aims to reduce unwarranted variation and share best practice across services. The GIRFT Programme has also produced a Further Faster handbook for neurology, which provides resources and best practice guidance to help support clinical teams to go faster and further in reducing neurology waiting times, including for patients with normal pressure hydrocephalus.

The Department has engaged extensively with a national charity dedicated to raising awareness of hydrocephalus. My Rt Hon. Friend, the Secretary of State for Health and Social Care met with charity representatives regarding hydrocephalus in November 2024, and officials remain mindful of issues which affect people with hydrocephalus.

We are currently refreshing the Healthy Child Programme guidance, applicable to all areas of England, including Surrey Heath, to strengthen service delivery for all children, including those living with hydrocephalus who may or may not have already been diagnosed.

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.

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.

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 old, and at other times only if there are concerns. The baby’s general practitioner, or nominated primary care examiner, has a 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, and additional contacts depending on need, providing an opportunity to identify any health or development concerns and to make the appropriate referrals.

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 old, and at other times only if there are concerns. The baby’s general practitioner, or nominated primary care examiner, has a 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, and additional contacts depending on need, providing an opportunity to identify any health or development concerns and to make the appropriate referrals.

The National Institute for Health and Care Excellence (NICE) develops its guidance independently and keeps its published guidelines under active surveillance so that it is able to update its recommendations in light of any significant new evidence. Decisions on updates to existing guidance are made by NICE’s Prioritisation Board in line with NICE’s published common prioritisation framework.

NICE’s guideline on “suspected neurological conditions: recognition and referral” includes recommendations on head circumference measurement. We understand that NICE is currently reviewing its recommendations to consider if any update to its recommendation is warranted.

People with spina bifida and hydrocephalus are not automatically identified as clinically vulnerable or clinically extremely vulnerable.

GPs and hospital clinicians have the discretion to add individual patients to the shielded patient list based on careful, clinical assessments of each individual’s needs. This will require expert clinical judgement on a patient-by-patient basis. If anyone is unsure if they should be following the guidnece for the clinically vulnerable or clinically extremely vulnerable. we would encourage them to discuss this with their GP or hospital specialist.

The following table provides counts of birth episodes with a primary or secondary diagnosis of spina bifida, spina bifida with hydrocephalus, hydrocephalus, hydrocephalus in other diseases, and anencephaly.

Source: Hospital Episode Statistics (HES), NHS Digital

Notes: HES figures are available from 1989-90 onwards. Changes to the figures over time need to be interpreted in the context of improvements in data quality and coverage (particularly in earlier years), improvements in coverage of independent sector activity (particularly from 2006-07) and changes in NHS practice. For example, apparent reductions in activity may be due to a number of procedures which may now be undertaken in outpatient settings and so no longer includes in admitted patient HES data. Conversely, apparent increases in activity may be due to improved recording of diagnosis or procedure information. It should be noted that HES include activity ending in the year in question and run from April to March, e.g. 2015-16 includes activity ending between 1 April 2015 and 31 March 2016.

It should be noted that as the question specifies the number of births classed as spina bifida, hydrocephalus and anencephaly caused by neural tube defects, the response is restricted to birth episodes where the diagnosis has occurred at the time or due to a previous antenatal scan. An episode that includes diagnosis codes from more than one of the above groups will be counted in each relevant category.

Information on high risk groups suffering neural tube defects at birth is not collected centrally.

There are no current mechanisms in place for monitoring the take-up of advice given on the NHS Choices website about preventing spina bifida.

The British Isles Network of Congenital Anomaly Registers (BINOCAR) collects information about the mother and child, including postcode of residence, mother’s age, pregnancy length, pregnancy outcome, when and how the anomaly was identified and the details of each anomaly.

Information on congenital abnormalities including spina bifida, hydrocephalus and anencephaly is collected by the British Isles Network of Congenital Anomaly Registers. Data is currently available for 2009–2012.

The following table shows the number of live births for years 2009-2012

In line with National Institute for Health and Care Excellence guidelines, health professionals use appropriate opportunities to advise all women who may become pregnant that they can most easily reduce the risk of having a baby with a neural tube defect by taking folic acid supplements. This information is also available on the NHS Choices website.

The Scientific Advisory Committee on Nutrition (SACN) was, however, commissioned to provide advice to government on the impact of folic acid fortification to improve the folate status of women and therefore reduce the number of pregnancies affected by neural tube defects. This built on previous advice from SACN’s predecessor the Committee on Medical Aspects of Food and Nutrition Policy in 2000. The Government is currently considering the recommendations that SACN made alongside other information sources, including the latest folate status data and expects to make an announcement on this in due course.

NHS England is responsible for supporting people with spina bifida and hydrocephalus.

Through the Mandate, we have asked NHS England to make measurable progress towards making our health service among the best in Europe at supporting people with ongoing health problems such as spina bifida and hydrocephalus to live healthily and independently, with much better control over the care they receive.

Domain 2 of the NHS Outcomes Framework and Clinical Commissioning Group Outcomes Indicator Set ‘Enhancing the quality of life for people with long term conditions’ contains a range of improvement areas relevant to people with long term conditions.