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.
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 ensure that patients living with rare inherited retinal diseases receive (a) timely and (b) equitable access to new treatments.
Answered by Andrew Gwynne
The Government is committed to improving the lives of those living with rare diseases, such as rare inherited retinal 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.
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, and NHS England ensures that funding is available for any licensed new medicines recommended by the NICE. The NICE aims to issue guidance on new medicines, including for rare diseases, as close to the time of licensing as possible. 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.
The NICE is currently appraising one treatment for treating visual impairment caused by a rare inherited retinal disease, and final guidance is expected to be published in April 2025.
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 2 September 2024 to Question 2469 on Health Services: Disability, when he expects NHS England's review of the Accessible Information Standard to be published.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
We understand how vital it is to ensure that the communication needs of patients and carers with a disability, impairment or sensory loss are met by health services. A revised AIS is being reviewed with a view to publication once it has been through NHS England’s internal assurance and governance processes. NHS England are also working on ensuring accessible versions are available at the point of publication.
While we do not yet have a confirmed publication date, the current AIS remains in force and therefore, there should not be a gap in provision for people using services. NHS England is also continuing to work to support implementation of the AIS with awareness raising, communication and engagement, and a review of the current e-learning modules on the AIS.
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 he is taking to ensure that all NHS information systems can print information in accessible formats.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Under the Accessible Information Standard, services should verify that where a patient needs to access information on a website, it is accessible to them. If not, services should make the information available in another way, for instance as a paper copy, via email, or as audio. Under the Health and Social Care Act 2012, National Health Service providers must have regard to information standards.
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 30 July 2024 to Question 1339 on Accessible Information Standard, for what reason NHS England cannot provide a specific date for publication.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
NHS England is unable to provide an exact date for the publication of the Accessible Information Standard (AIS), due to their internal assurance and governance process. In addition, the AIS can only be published once the accessible versions are in place, all web content has been produced, and all stakeholders have been informed in advance, all of which can only be considered post-internal assurance and governance.
It should be noted that the current AIS remains in force and therefore, there should not be a gap in provision for people using services.