Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 18 March 2025 to Question 32209 on Health and Care Act 2022, when he expects the Accessible Information Standard to (a) be published and (b) become mandatory.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
NHS England is working to support implementation of the Accessible Information Standard (AIS) with awareness raising, communication and engagement, and a review of the current e-learning modules on the AIS. The intention is to ensure that staff and organisations in the National Health Service are aware of the AIS and the importance of meeting the information and communication needs of disabled people using these services. The revised standards are expected to be published in summer 2025. In the meantime, the current AIS remains in force and public health and adult social care providers will continue to have due regard for it.
As part of new arrangements that will make information standards mandatory, following the commencement of regulations made under the Health and Care Act 2022, we intend to introduce mandatory information standards in a staged process. The Department and NHS England are considering what will be the first standards to be adopted under this process.
To ensure a frictionless transition from the existing information standards system to the new process for mandatory information standards, information standards made under the existing system will continue to have effect until they have been revoked, have expired, or have met the new procedural requirements and therefore become mandatory.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of providing support to the Medicines and Healthcare products Regulatory Agency in reviewing (a) guidance and (b) regulations for the (i) licensing and (ii) packaging of medicines to ensure their safe use by blind and partially sighted people.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The Medicines and Healthcare products Regulatory Agency (MHRA) already has provision in the current Human Medicines Regulations 2012 No 1916 legislation, to ensure the licensing and packaging of medicines are safe for use by blind and partially sighted people. These require manufacturers of medicines to include braille on their packaging of medicinal products, so that those who are partially sighted or who are blind can effectively identify the product they have been prescribed and dispensed.
They also require medicine manufacturers to provide an alternative version of the patient information leaflet (PIL), should the paper version contained in the box not be suitable in meeting the patients’ needs. These alternative versions may include braille or audio versions of the PIL. The MHRA’s best practice guidance also provides manufacturers with guidance on how to ensure they meet the requirements of the legislation.
The MHRA recognises that there is opportunity to improve patient information based upon user research, to ensure it fulfils the needs of this patient group and others. They are also committed to embedding patient voices across the regulatory pathways as part of their Patient Involvement Strategy 2021. The current strategy is also being refreshed for 2026 re-launch.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if his Department will consult with blind and partially sighted patients on potential accessibility improvements to the NHS App.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
We are working to improve access to digital services, outcomes, and experiences for the widest range of people, based on their preferences. Patients unable to use digital channels can continue to access services via telephone and through traditional face to face services.
We conduct user research on an ongoing basis with users from diverse backgrounds to ensure our service works for everyone. This includes patients with a range of access needs and diverse groups, for instance ethnic minority groups, those with visual impairments, neurodiversity, and physical impairments. We have recruited users who are blind or partially sighted in community-based research, research with local National Health Service teams, and in remote research, either one to one or in groups. We use the findings of user research to plan and prioritise new work to improve accessibility.
Centrally built services, such as the NHS App and NHS website, are designed to meet international accessibility standards. We are modernising the mobile patient experience within the NHS App, ensuring information is clearly structured and easy to find and understand.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department plans to take to help tackle barriers to the safe use of medical devices for the management of diabetes among partially sighted and blind people.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department and the National Health Service work with suppliers and manufacturers to help improve the accessibility and safe use of medical devices for the management of diabetes among partially sighted and blind people. It is recommended to suppliers that people with experience of visual and hearing impairment should be included and considered in the design of insulin pumps, continuous glucose monitors, and hybrid closed loop systems, as well as in the user information and instructions that accompany their supply and use.
Suppliers of the hybrid closed loop must provide educational materials appropriate for those who are visually impaired, and commissioning recommendations for blood glucose, ketone meters, testing strips, and lancets include recommendations for cohorts of the population, including the visually impaired. These commissioning recommendations are available at the following link:
Finally, the Department is in the process of modernising the listing of medical devices on the NHS Drug Tariff to further improve access by building in incentives for suppliers for cohorts of the population, such as partially sighted and blind people, who need added features.
Asked by: Marsha De Cordova (Labour - Battersea)
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 impact of making the NHS Accessible Information Standard mandatory in all NHS England health and social care settings on the ability of (a) deaf and (b) visually impaired people to access healthcare.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Following commencement of the regulations made under the Health and Care Act 2022, new arrangements will come into effect to make information standards mandatory. Existing standards will need to go through a new process to become mandatory, and once a standard becomes mandatory, organisations will be expected to comply. The timing for the Accessible Information Standard will be considered along with those of the other existing standards. These arrangements are expected to happen this year, once the regulations have been approved by Parliament.
The intent of making information standards mandatory is to improve the rigour of standards, and the consistency of their application. The implementation of Section 95 should have a beneficial impact on those using services, by contributing to the effective operation of the health and care sector. The Accessible Information Standard is intended to improve the accessibility of information, while other standards often specify the technical basis for ensuring that data flows through the system in a usable and standardised form, improving the quality of care and patient outcomes. Information standards do not affect people’s rights.
NHS England commissioned the North of England Commissioning Support Unit to review compliance with the Accessible Information Standard, prior to reviewing the standard. Their findings matched the independent reviews undertaken by Sign Health and Healthwatch, that implementation was inconsistent. NHS England has considered how to strengthen compliance with the standard, including the requirement to identify local implementation leads, and the development and testing of a self-assessment framework.
Asked by: Marsha De Cordova (Labour - Battersea)
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 impact of expediting the implementation of section 95 of the Health and Care Act 2022 on the rights of disabled people.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Following commencement of the regulations made under the Health and Care Act 2022, new arrangements will come into effect to make information standards mandatory. Existing standards will need to go through a new process to become mandatory, and once a standard becomes mandatory, organisations will be expected to comply. The timing for the Accessible Information Standard will be considered along with those of the other existing standards. These arrangements are expected to happen this year, once the regulations have been approved by Parliament.
The intent of making information standards mandatory is to improve the rigour of standards, and the consistency of their application. The implementation of Section 95 should have a beneficial impact on those using services, by contributing to the effective operation of the health and care sector. The Accessible Information Standard is intended to improve the accessibility of information, while other standards often specify the technical basis for ensuring that data flows through the system in a usable and standardised form, improving the quality of care and patient outcomes. Information standards do not affect people’s rights.
NHS England commissioned the North of England Commissioning Support Unit to review compliance with the Accessible Information Standard, prior to reviewing the standard. Their findings matched the independent reviews undertaken by Sign Health and Healthwatch, that implementation was inconsistent. NHS England has considered how to strengthen compliance with the standard, including the requirement to identify local implementation leads, and the development and testing of a self-assessment framework.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will require NHS England to publish Referral To Treatment waiting times for (a) glaucoma, (b) macular degeneration and (c) other irreversible sight loss conditions separately from minor and reversible eye condition waiting times.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
There are no current plans to require NHS England to publish Referral to Treatment waiting times for glaucoma, macular degeneration, and other irreversible sight loss conditions separately from minor and reversible eye condition waiting times.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has made an estimate of the cost to outpatient paediatric ophthalmology of (a) cancelled appointments and (b) appointments missed because the patient did not attend in 2023-24.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Patients awaiting outpatient care make up over 85% of the elective waiting list, which includes children. Minimising missed appointments will help us to make sure we maximise the use of clinical time and ensure that all patients can be seen sooner. This is part of delivering on our commitment that 92% of patients, including children awaiting hospital-based eyecare, return to waiting no longer than 18 weeks from Referral to Treatment.
The following table shows the recorded outcomes of outpatient paediatric ophthalmology appointments in 2023/24, for children aged zero to 18 years old:
Outcome | Appointments |
Cancelled by hospital | 69,335 |
Cancelled by patient | 61,699 |
Did not attend | 61,904 |
Not known/other | 221 |
Attended | 377,520 |
Source: Hospital Episode Statistics, NHS England.
No estimate has been made of the cost of missed appointments to outpatient paediatric ophthalmology because the Department does not hold information centrally on the extent to which outpatient clinics are overbooked based on the expectation that some appointments will be cancelled or marked as did not attend, and that clinicians may undertake other clinical work during these missed clinic appointments.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many outpatient paediatric ophthalmology appointments for children under 19 years were (a) cancelled and (b) missed because the patient did not attend in 2023-24.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Patients awaiting outpatient care make up over 85% of the elective waiting list, which includes children. Minimising missed appointments will help us to make sure we maximise the use of clinical time and ensure that all patients can be seen sooner. This is part of delivering on our commitment that 92% of patients, including children awaiting hospital-based eyecare, return to waiting no longer than 18 weeks from Referral to Treatment.
The following table shows the recorded outcomes of outpatient paediatric ophthalmology appointments in 2023/24, for children aged zero to 18 years old:
Outcome | Appointments |
Cancelled by hospital | 69,335 |
Cancelled by patient | 61,699 |
Did not attend | 61,904 |
Not known/other | 221 |
Attended | 377,520 |
Source: Hospital Episode Statistics, NHS England.
No estimate has been made of the cost of missed appointments to outpatient paediatric ophthalmology because the Department does not hold information centrally on the extent to which outpatient clinics are overbooked based on the expectation that some appointments will be cancelled or marked as did not attend, and that clinicians may undertake other clinical work during these missed clinic appointments.
Asked by: Marsha De Cordova (Labour - Battersea)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve the (a) assessment of and (b) access to specialist treatments for rare diseases.
Answered by Andrew Gwynne
The Government is committed to improving the lives of those living with rare diseases. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, including improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework, and will publish an England action plan in 2025. Delivery partners have committed to reviewing the effectiveness of treatment access pathways like the Early Access to Medicines Scheme (EAMs), the Innovative Licensing and Access Pathway (ILAP), and the Innovative Medicines Fund for rare disease therapies.
NHS England commissions over 80 highly specialised services provided to small numbers of patients, which includes services for rare diseases. The services are delivered and co-ordinated nationally through a limited number of expert centres, to develop appropriate clinical quality, expertise, and experience.
The Medicines and Healthcare products Regulatory Agency supports development and access to treatments for rare diseases through regulating the medicines supplied in the United Kingdom. These include the Orphan Medicinal Products Regulation, and Marketing Authorisations under Exceptional Circumstances for treatments where there is limited data, such as rare diseases. Additionally, initiatives like Project Orbis, the ILAP, the EAMS, and the Regulatory Advice Service for Regenerative Medicines accelerate access to treatments.
The National Institute for Health and Care Excellence (NICE) makes recommendations for the National Health Service on whether all licensed new medicines should be routinely funded by the NHS, based on an assessment of their costs and benefits. The NHS in England is legally required to fund medicines recommended by the NICE, normally within three months of the publication of final guidance. The NICE operates a separate Highly Specialised Technologies (HST) programme for very rare diseases, with significantly higher cost-effectiveness thresholds than those evaluated under the NICE’s standard technology appraisal processes. Decisions on whether new medicines should be evaluated through the HST programme are taken by the NICE against published routing criteria.