No formal assessment has been made of the adequacy of the availability of National Health Service care pathways for patients diagnosed with postural orthostatic tachycardia syndrome and other autonomic nervous system disorders.

However, integrated care boards (ICBs) are responsible for commissioning services, including end‑to‑end care pathways, to meet the needs of their local populations. This includes ensuring that pathways cover assessment, diagnosis, and management, as well as supporting safe and effective transitions between paediatric and adult services.

ICBs are expected to understand local need, including among young people, and to address gaps in provision where these arise, including where referral criteria may unintentionally exclude patients.

Care for these conditions is typically delivered through existing specialties, such as cardiology, neurology, or general medicine, with escalation to specialised services for patients with more complex or rare presentations.

Through the National Institute for Health and Care Research (NIHR), the Department has funded and supported multiple studies investigating urinary tract infections (UTIs), with some funded studies studying the link between UTIs and cognitive outcomes. For example, NIHR has funded the ‘IntraVESical Preparations for REcurrent Urinary Tract Infection Prevention’ (VESPER) study. This study aims to determine whether in-bladder treatments are more effective and cost-efficient than second-line oral antibiotics in reducing recurrent UTIs in women who have not responded to first-line preventative antibiotics. It will connect clinical outcomes with quality-adjusted life year (QALY)-based evaluations that take cognitive changes into account.

NIHR infrastructure is also conducting relevant research that is investigating UTIs and considering cognitive outcomes. The NIHR Southampton Biomedical Research Centre, is leading the ‘DIagnoSing Care hOme UTI’ (DISCO UTI) study which is investigating new ways to accurately diagnose and treat UTIs in care homes, as UTIs can cause symptoms like confusion, resulting in difficulties when diagnosing UTIs in care home residents.

The following table shows a breakdown of the Finished Admission Episodes (FAEs) in England with a primary diagnosis relevant to nerve pain, as well as the total number and proportion of FAEs with a primary diagnosis relevant to nerve pain, for 2023/24:

Source: Hospital Episode Statistics (HES), published by NHS England

Notes:

- FAEs refer to the first period of admitted patient care under one consultant within one healthcare provider, and are generally counted against the year or month in which the admission episode finishes, so do not represent the number of patients, as a person may have more than one admission within the period;

- the primary diagnosis is the first of up to 20 diagnosis fields in the HES data set and provides the main reason why the patient was admitted to hospital;

- the data is provisional and may be incomplete or contain errors for which no adjustments have been made, as counts produced from provisional data are likely to be lower than those generated for the same period in the final data set; and

- all counts have been rounded to the nearest five and values less than 10 have been supressed.

Neurotechnology is regulated under general provisions for medical research, medical devices and the Data Protection Act 2018. Funders additionally have a responsibility to ensure that research funding is used for specific purposes. To improve the regulatory framework and ensure patient safety, in September 2021 the Medicines and Healthcare products Regulatory Agency launched a public consultation on the future of medical device regulation. Future regulatory requirements will apply to all medical devices where applicable, including those which fall under the category of neurotechnology. The United Kingdom additionally supports the Organisation for Economic Co-operation and Development’s (OECD) Recommendation on Responsible Innovation in Neurotechnology and its associated principles. The UK will work with other OECD partners to help establish practical tools and guidance.

This information is not held centrally.

This information is not held centrally.

Medicines supply problems can occur for a number of reasons due to manufacturing difficulties, regulatory problems and problems with the supply of raw materials, or from issues which are related to the distribution of the product. The manufacture of medicines is complex and highly regulated, and materials and processes must meet rigorous safety and quality standards, so difficulties can arise for various reasons.

The Department understand that maintaining access to anti-epileptic drugs, drugs for bipolar disorder and those used in the management of neuropathic pain is vitally important to many people in this country. We are aware of some issues with medicines used in epilepsy, bipolar disorder and neuropathic pain over the past few months. During this time, we sought specialist advice to allow a clinical management plan to be developed. Expert clinicians provided input on the clinical management plan to ensure affected patients can be managed appropriately during the supply issue. We communicated any information about the supply issue and clinical management plan to the National Health Service including patient groups.

We continue to work closely with industry and partners in the health system to help prevent shortages and to ensure that the risks to patients are minimised when supply issues do arise.

Leaving the European Union with a ‘deal’ remains the Government’s top priority and would give businesses stability and certainty to prepare for our new relationship with the EU after EU exit. The Department has published guidance to industry and the health and care system to allow them to make informed plans and preparations. This is available on GOV.UK.

On 26 March, we wrote to all other organisations in the health and care system to ask them to continue to prepare for leaving the EU without a ‘deal’.

My Rt. hon. Friend the Secretary of State for Health and Social Care discusses ‘no deal’ contingency plans, including those for the availability of medicines, with a number of stakeholders, including the National Health Service and other Government Departments.

The Department has been working closely with trade bodies, product suppliers, the NHS in England, and the devolved administrations and the Crown Dependencies, to ensure the continuation of the supply of medicines to the whole of the United Kingdom in the event of a ‘no deal’ EU exit. This includes the NHS, social care and the independent sector, and covers licensed medicines (prescription only, pharmacy and general sales list medicines) and unlicensed medicines (specials, investigational medicinal products and UK imports).

We understand that medicines to treat conditions such as epilepsy, bi-polar disorder and neuropathic pain are vitally important to many people in this country. Our contingency plans include sensible mitigations for medicines that come to the UK from or via the EU/European Economic Area, such as precautionary stockpiling by suppliers, to ensure that the supply of essential medicines to patients is not disrupted.

A count of unplanned accident and emergencies (A&E) attendances¹ resulting in an admission² and a primary diagnosis of central nervous system conditions (excluding stroke)³, for the financial years between 2010-11 and 2016-17⁴ is provided in the table below. This is a count of hospital attendances resulting in admissions, not individual patients as the same person may have been admitted into a National Health Service hospital on more than one occasion.

Source: Hospital Episode Statistics (HES), NHS Digital

Notes:

¹The following attendance category codes identify unplanned A&E attendances:

1 = First A&E attendance

3 = Follow-up A&E attendance - unplanned

9 = Not known

²Attendance disposal 01 = Admitted to hospital bed / become a lodged patient of the same health care provider.

³The recording of the diagnosis field within the A&E data set is not mandatory. It is not known to what extent changes over time are as a result of improvements in recording practice.

24 = Central nervous conditions (excluding stroke)

⁴HES figures are available from 2007-08 onwards. Changes to the figures over time need to be interpreted in the context of improvements in data quality and coverage and changes in NHS practice. For example, changes in activity may be due to changes in the provision of care. Note that HES include activity ending in the year in question and run from April to March, e.g. 2012-13 includes activity occurring between 1 April 2012 and 31 March 2013.

A count of Finished Admission Episodes with a primary diagnosis of Spinal Damage and a main or secondary procedure of nerve transfer, for England, for the financial years between 2011-12 and 2015-16 is shown in the following table.

Source: Hospital Episode Statistics, NHS Digital

Admissions do not represent the number of patients, as a person may have more than one admission within the period.

The Department is aware of ongoing clinical trials and research projects which deal with the assessment and treatment of people with fibromyalgia. Whilst the results of the studies in Spain concerning the merits of ophthalmologic tests in diagnosis and fibromyalgia and helping guide disease management are interesting, larger, high quality clinical trials would be needed to demonstrate the efficacy before introducing such initiatives in the United Kingdom.

The information requested is not held centrally. Consultant-led referral to treatment waiting times are collected separately for 18 high volume treatment functions (divisions of clinical work based on main specialty). These treatment functions are listed in the national health service data dictionary at:

www.datadictionary.nhs.uk/data_dictionary/data_field_notes/t/tr/treatment_function_code_(referral_to_treatment _period)_de.asp?shownav=1

Referral to treatment waiting times for all other treatment functions, including spinal surgery services and spinal injuries, are collected under a single other treatment function, and are not separately identifiable.

The Department's National Institute for Health Research (NIHR) manages the Efficacy and Mechanism Evaluation programme, which is funded by the Medical Research Council and the NIHR. University-based researchers can apply to this programme for funding for the evaluation of the clinical efficacy of treatments, including the use of low dose naltrexone. If evidence from such evaluations is promising, larger scale trials can follow.

The NIHR Clinical Research Network provides a single point of contact for industry studies, offers centralised and co-ordinated study feasibility assessment, and support with patient recruitment.

Personal Independence Payment (PIP) started from April 2013 and although limited data has started to feed through, we need to wait until the Department has quality assured, meaningful figures for publication. The Department is working to guidelines set by the UK Statistics Authority to ensure we are able to publish statistics that meet high quality standards at the earliest opportunity. We intend to publish official statistics on PIP from spring 2014 in line with our publication strategy:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/284330/pip_stats_release_strategy_feb14.pdf

An ad hoc release of PIP information was published on Tuesday 11 February 2014.

The Department has made no assessment of the effect of any changes in the level of spending on spinal surgery by national health service trusts on neighbouring hospitals and of the effect on health outcomes of patients classified as urgent facing above-average waiting times for surgery.

All patients have the right to be treated within 18 weeks, and the NHS should take all reasonable steps to offer patients a range of alternative providers if this is not possible. Excessive waits for spinal surgery are unacceptable. Where there are excessive waits we would expect plans to be in place to resolve this.

More than a million patients are treated each month and the vast majority of patients are continuing to receive treatment within the 18-week target. All the referral to treatment standards continue to be met at a national level.

The Department has made no assessment of the effect of any changes in the level of spending on spinal surgery by national health service trusts on neighbouring hospitals and of the effect on health outcomes of patients classified as urgent facing above-average waiting times for surgery.

All patients have the right to be treated within 18 weeks, and the NHS should take all reasonable steps to offer patients a range of alternative providers if this is not possible. Excessive waits for spinal surgery are unacceptable. Where there are excessive waits we would expect plans to be in place to resolve this.

More than a million patients are treated each month and the vast majority of patients are continuing to receive treatment within the 18-week target. All the referral to treatment standards continue to be met at a national level.

The operational standards for consultant-led elective care waiting times for the national health service in England are that:

a minimum of 90% of admitted patients should start treatment within 18 weeks of referral;

a minimum of 95% of non-admitted patients should start treatment within 18 weeks of referral; and

a minimum of 92% of patients on an incomplete pathway (patients still waiting to start treatment) should have been waiting no more than 18 weeks.

These standards apply to elective spinal surgery; however, all patients should be treated without unnecessary delay and according to clinical need.

Further information requested is not available. NHS England collects and publishes monthly referral to treatment (RTT) data which are used to monitor consultant-led

NHS waiting times in England. The national RTT waiting times data are not collected at procedure level, but only at treatment function level.

The number of surgeons qualified to undertake L5 S1 anterior fusion surgery in Merseyside, the north-west and the United Kingdom is not collected by the Department. L5 S1 anterior fusion surgery is not a recognised Certificate of Completion of Training qualification, but is based on a doctor’s interest and experience.

The content and standard of medical training is the responsibility of the General Medical Council informed by the relevant Medical Royal College.

Where additional training is required for individual posts, it is delivered by continuing professional development (CPD). CPD is the responsibility of individual practitioners and their employers.

Data on conditions is not gathered at a sufficiently detailed enough level to determine the number of working days lost in England each year due to neurological conditions.

Commissioning research or changing existing surveys to estimate these figures would represent a disproportionate cost.

Benefit expenditure in 2011/12 for “diseases of the nervous system” as defined by the World Health Organisation, is shown in the table below:

Source data DWP Statistical and Accounting Data.

Figures are cash terms and rounded to the nearest £ million.

Further benefit expenditure data including ESA and DLA by reported medical condition can be found at the following URL:

https://www.gov.uk/government/collections/benefit-expenditure-tables.