The Government is committed to ensuring that patients who rely on specialised services continue to receive high-quality, equitable care. Under the proposals in the NHS Modernisation Bill, specialised services will continue to be clearly defined within the statutory commissioning framework, with commissioning arrangements informed by clinical evidence, population need, national service specifications, National Institute for Health and Care Excellence (NICE) guidance, quality standards, and patient outcomes.

We recognise that cystic fibrosis services are specialised in nature and, since April 2025, these services are commissioned by integrated care boards and underpinned by national service specifications, clinical commissioning policies, and NICE technology appraisal guidance.

As part of the wider programme of health and care system reform, we are clear of the need to retain the integrity of specialised services and continue to support high-quality, equitable care for patients with rare and complex conditions such as cystic fibrosis. We recognise the importance of ensuring that clinical networks, service standards, and outcomes are preserved and strengthened through any transition.

Patient and public involvement will also continue to be a core part of specialised commissioning, with the NHS Modernisation Bill strengthening responsibilities at both national and local levels to ensure patient feedback informs decision-making and service planning. Any future commissioning decisions relating to specialised services will continue to be taken with appropriate clinical advice and engagement with patients, charities and other stakeholders, with the aim of maintaining equitable access and improving outcomes for patients with rare and complex conditions.

National Institute for Health and Care Excellence (NICE) guidelines recommend that patients and/or the families of people with cystic fibrosis are provided with the relevant information and the opportunity for discussion with clinicians on topics that include their diagnosis, monitoring of their condition, management options, and existing or possible complications that could relate to comorbidities like liver disease. NICE guidelines are available at the following link:

https://www.nice.org.uk/guidance/ng78

The United Kingdom’s 2024 to 2029 antimicrobial resistance (AMR) national action plan (NAP), published in May 2024, recognises that AMR impacts people differently. People with cystic fibrosis are an increased risk of infection, including resistant infections, and therefore action to tackle the threat of AMR is even more important for this group. In particular, the use of accurate diagnostic testing to guide effective antibiotic use, a priority commitment in the NAP, is critical for people with cystic fibrosis.

The Department, through the National Institute for Health and Care Research (NIHR), has invested over £88 million in AMR programme funding over the last five years. This includes research to develop and evaluate diagnostics and point‑of‑care testing to improve infection detection and optimise antibiotic use. The NIHR also supports the development of health technologies, including diagnostics, through its wider research infrastructure.

The UK will continue to invest in tackling AMR where it is most impactful, helping to ensure that our actions to address AMR reduce the burden for the people who are more affected.

It has not proved possible to respond to the hon. Member in the time available before Prorogation.

The department is committed to ensuring that individuals with cystic fibrosis receive high-quality and accurate Personal Independence Payment (PIP) assessments. All health professionals (HPs) carrying out PIP assessments receive comprehensive training in disability analysis, with a clear focus on understanding the functional effects of a claimant’s condition rather than the diagnosis itself.

To support this approach, the department provides assessment suppliers with core training and guidance materials on the varying symptoms of cystic fibrosis. These materials include clinical background information and detail the potential functional impacts of the condition, enabling HPs to deliver informed, consistent and accurate assessments.

In addition, all training and guidance materials are currently subject to a comprehensive review and update programme. A dedicated team is overseeing this work to ensure alignment with national best practice helping to ensure that guidance remains accurate, relevant and up to date.

The Government has not made an assessment of the potential impact of prescription charges on people with cystic fibrosis in Lincolnshire and has no current plans to review the list of medical conditions that entitle someone to apply for a medical exemption certificate.

There are a wide range of exemptions from prescription charges already in place for which those with cystic fibrosis may be eligible. Eligibility depends on the patient’s age, whether they are in qualifying full-time education, whether they are pregnant or have recently given birth, whether they have a qualifying medical condition, and whether they are in receipt of certain benefits or a war pension.

People on low incomes can apply for help with their health costs through the NHS Low Income Scheme. Prescription prepayment certificates (PPCs) are also available. PPCs allow people to claim as many prescriptions as they need for a set cost, with 3-month and 12-month certificates available.

The department is committed to ensuring that individuals with cystic fibrosis receive high-quality and accurate Personal Independence Payment (PIP) assessments.

All health professionals (HPs) carrying out PIP assessments receive comprehensive training in disability analysis, with a clear focus on understanding the functional effects of a claimant’s condition rather than the diagnosis itself.

To support this approach, the department provides assessment suppliers with core training and guidance materials on the varying symptoms of cystic fibrosis. These materials include clinical background information and detail the potential functional impacts of the condition, enabling HPs to deliver informed, consistent and accurate assessments.

In addition, all training and guidance materials are currently subject to a comprehensive review and update programme. A dedicated team is overseeing this work to ensure alignment with national best practice helping to ensure that guidance remains accurate, relevant and up to date.

The Government has not made an assessment of the potential impact of prescription charges on people with cystic fibrosis in the Yeovil constituency. Pursuant to the answer of 27 January, no assessment has been made of the potential merits of reviewing the list of medical conditions that entitle someone to apply for a medical exemption certificate.

Any changes to services must follow established statutory processes, including full clinical engagement, consideration of patient impact, and public consultation where required. These processes are designed to ensure that any proposed reconfiguration maintains or improves the quality, safety, and accessibility of care for patients.

The Department expects NHS England and local commissioners to demonstrate that any changes will not adversely affect patients with cystic fibrosis (CF) and that services continue to meet the national service specifications for specialised respiratory and CF care. This includes ensuring that specialist multidisciplinary CF teams remain accessible, that transition and continuity of care are safeguarded, and that travel times and capacity implications are assessed and mitigated.

Although the location of some services will change, there is no reduction in CF services capacity and no loss of specialist expertise as a result of this change. The full paediatric CF multidisciplinary team, including specialist clinicians, nurses, physiotherapists, psychologists and dietitians, will continue to care for patients as a single specialist service.

I refer the Hon. Member to the answer I gave to the Hon. Member for Yeovil on 27 January 2026 to Question 107568.

The last review of the prescription charge exemptions for people with long term conditions was conducted in 2009, by Professor Ian Gilmore, the then President of the Royal College of Physicians. His report was published in 2010 and is available on the GOV.UK website, at the following link:

https://www.gov.uk/government/publications/prescription-charges-review-the-gilmore-report

In July 2024, National Institute for Health and Care Excellence (NICE) approved three disease modifying treatments, Orkambi, Symkevi, and Kaftrio, as treatment options for eligible National Health Service patients with cystic fibrosis, under the terms of a commercial agreement reached between NHS England and the manufacturer, Vertex. These treatments are now routinely funded by the NHS in England for eligible patients.

Across England, further access to Orkambi, Symkevi, and Kaftrio on the NHS for people with cystic fibrosis who do not meet the eligibility requirements in the NICE guidance, is guided by the NHS England commissioning statement at the following link:

https://www.england.nhs.uk/long-read/nhs-england-commissioning-statement-arrangements-for-access-to-cystic-fibrosis-transmembrane-conductance-regulator-cftr-modulators-for-licensed-and-off-label-use-in-patients-with-cystic-fibrosis/

This means that means approximately 95% of people with cystic fibrosis in England are now eligible for modulator therapy.

NICE is an England-only body. Health is largely a devolved matter and decisions on the availability of medicines for use in the NHS in the devolved administrations is a matter for the devolved government.

There are currently no plans to add cystic fibrosis to the list of medical conditions that entitle someone to apply for a medical exemption certificate which exempts the holder from paying the National Health Service prescription charge.

We are committed to ensuring that people living with cystic fibrosis have access to appropriate support and services, so that they can fulfil their potential and lead happy, healthy and productive lives.

NHS England commissions 47 specialised cystic fibrosis centres for adults and children across England. This includes the children’s specialist cystic fibrosis service based at Southampton Children’s Hospital, which serves patients in Wiltshire. Service specifications published by NHS England clearly define the standards of services, care and outcomes that people can expect from these centres. Those service specifications aim to deliver improvements to life expectancy and quality of life for children with cystic fibrosis.

Where a local authority does not meet its duties, the Department for Education can take action that prioritises children’s needs and supports local areas to bring about rapid improvement. The Department for Education works to monitor, support, and challenge local authorities, working closely with NHS England to tackle weaknesses that sit with health partners.

For this reason, the Department of Health and Social Care has not specifically made a formal assessment of the adequacy of education, health, and care plans for children with cystic fibrosis in Wiltshire.

No estimate has been made on the cost of providing free prescriptions for people with cystic fibrosis.

Almost 89% of prescription items are dispensed free of charge in England and there are arrangements in place to help those with the greatest need. Eligibility depends on the patient’s age, whether they are in qualifying full-time education, whether they are pregnant or have recently given birth, whether they have a qualifying medical condition, or whether they are in receipt of certain benefits or a war pension. Those with cystic fibrosis or another long-term condition may therefore meet the eligibility criteria for prescription charge exemptions and be in receipt of free prescriptions.

To support those who do not qualify for an exemption of prescription charges, the cost of prescriptions can be capped by purchasing a prescription pre-payment certificate, which can be paid for in instalments. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 per week.

The Department has no plans to review the list of medical conditions that entitle someone to apply for a medical exemption certificate, for exemption from prescription charges.

Approximately 89% of prescription items are dispensed free of charge in the community in England, and there are a wide range of exemptions from prescription charges already in place for which those with cystic fibrosis may be eligible.

Eligibility for these exemptions depends on the patient’s age, whether they are in qualifying full-time education, whether they are pregnant or have recently given birth, or whether they are in receipt of certain benefits or a war pension.

People on low incomes can apply for help with their health costs through the NHS Low Income Scheme. Prescription prepayment certificates (PPCs) are also available. PPCs allow people to claim as many prescriptions as they need for a set cost, with three-month and 12-month certificates available. To help spread the cost, people can pay for an annual PPC by ten monthly direct debits. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 per week.

The Access to Work Scheme provides grant funding for workplace adjustments that go beyond an employer’s duty to provide reasonable adjustments under the Equality Act 2010. The Scheme can provide support for those in work or about to start work for a wide range of health conditions, such as Cystic Fibrosis, including support to travel to and in work.

In 2018, the Department commissioned NatCen, an independent social research organisation, to explore the feasibility of evaluating the impacts of Access to Work. The report uncovered several challenges determining the impacts of Access to Work mainly around identifying an appropriate counterfactual and the difficulties in constructing a comparison group.

To assess the role of Access to Work in supporting people with disabilities and long-term health conditions to enter and stay in work, the Department commissioned qualitative evaluations of Access to Work in most recently in 2018, and 2009. The 2018 evaluation ‘Access to Work: Qualitative research with applicants, employers and delivery staff’ gathered evidence on the value of Access to Work to employers and employees.

The 2009 evaluation: ‘Evaluation of Access to Work: Core Evaluation’ explored customer, employer, assessor and other views relating to: marketing and awareness, application process, assessments, outcomes, impact and areas for improvement.

NHS England commissions 47 specialised cystic fibrosis (CF) centres for adults and children across England, in addition to supporting the optimal monitoring of patients with CF at home, and supporting best practice in remote consultations.

Service specifications published by NHS England clearly define the standards of services, care, and outcomes that people, including those in Wiltshire, can expect from specialist CF centres. Those service specifications aim to deliver improvements to life expectancy and quality of life for adults and children with CF. The service specification for children with CF outlines that the transition from paediatric to adult services should be planned with the patient and their parents/carers with due regard to patient choice, and discussions should take place as early as possible about the process of transition and the options for adult care.

The age of transition should be flexible, with the opportunity to visit the adult centre and meet key multi-disciplinary team members. There should be a detailed clinical handover and a documented paediatric and adult multi-disciplinary team member liaison. Specialist adult CF centres should demonstrate that they are actively engaging in the transition process for each child and are required to submit an annual audit report to commissioners of the experience of patients who transitioned during the year.

In August 2024, NHS England published the RightCare cystic fibrosis toolkit to help improve CF services and reduce unwarranted variation. The toolkit recommends that outpatient services should consider a hybrid model of face-to-face and virtual consultations, as appropriate. It recommends that trusts should provide the infrastructure and resources to provide virtual consultations, including IT tools and virtual monitoring capability, but should not replace face-to-face care where it is more appropriate, dependent on clinical need, or preferred by individuals.

To support patients, including those in Wiltshire, with the cost of travel, the National Health Service runs the Healthcare Travel Costs Scheme. The scheme allows patients to claim a refund of reasonable travel costs, provided that they meet the eligibility criteria and have been referred to hospital or other NHS premises for specialist NHS treatment or diagnostic tests. Further details are available at the following link:

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/

The National Institute for Health and Care Research awarded £2,037,265 to six studies on cystic fibrosis in 2022/23, 2023/24 and 2024/25 to hospitals and research institutions in the South West region of England, including those in Wiltshire.

NHS England commissions 47 specialised cystic fibrosis centres for adults and children across England. This includes the Bristol Adult Cystic Fibrosis Centre, based at Bristol Royal Infirmary, the Oxford Adult Cystic Fibrosis Centre, based at John Radcliffe Hospital, and the Wessex Adult Cystic Fibrosis Centre, based at Southampton General Hospital, which serve patients in Bath, Swindon, and the wider county of Wiltshire.

Service specifications published by NHS England clearly define the standards of services, care, and outcomes that people can expect from these centres. Those service specifications aim to deliver improvements to life expectancy and quality of life for adults and children with cystic fibrosis.

In addition, NHS England is supporting the optimal monitoring of patients with cystic fibrosis at home and supporting best practice in remote consultations. In August 2024, NHS England published the RightCare cystic fibrosis toolkit to help improve cystic fibrosis services and reduce unwarranted variation. The toolkit is designed to help support systems to understand key priorities and ways of optimising cystic fibrosis care, by providing key actions for improvement. The toolkit should be used in conjunction with the NHS England service specification for cystic fibrosis and the Cystic Fibrosis Trust Standards of Care.

The National Institute for Health and Care Excellence has produced guidance on the diagnosis and management of cystic fibrosis, which specifies how to monitor the condition and manage the symptoms to improve quality of life.

The National Institute for Health and Care Excellence (NICE) makes recommendations on whether licensed medicines should be routinely funded by the National Health Service in England based on a thorough assessment of the available evidence of clinical and cost effectiveness. The NHS in England is legally required to fund medicines recommended by NICE.

In July 2024, NICE approved three disease modifying treatments, Orkambi, Symkevi, and Kaftrio, as treatment options for eligible NHS patients with cystic fibrosis, under the terms of a commercial agreement reached between NHS England and the manufacturer, Vertex. These treatments are now routinely funded by the NHS in England for eligible patients.

NICE is also currently developing guidance for the NHS on whether vanzacaftor-tezacaftor-deutivacaftor can be recommended for routine funding for the treatment of cystic fibrosis. NICE is expecting to publish final guidance in August 2025.