Asked by: Liz Twist (Labour - Blaydon)
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 provide stop smoking services in Gateshead.
Answered by Neil O'Brien
We continue to provide funding to local authority stop smoking services via the Public Health Grant. The local authority in Gateshead commission a highly effective Stop Smoking Service which is available to all smokers locally.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to consult with (a) patients and (b) the public on the (i) development and (ii) delivery of the SWAN Pilot Programme under the England 2023 Rare Diseases Action Plan.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.
In the England Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for patients with undiagnosed conditions’ (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what progress his Department has made on the delivery of the SWAN Pilot Programme as part of the England 2023 Rare Diseases Action Plan.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.
In the England Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for patients with undiagnosed conditions’ (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.
Asked by: Liz Twist (Labour - Blaydon)
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 support people with undiagnosed genetic conditions.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.
In the England Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for patients with undiagnosed conditions’ (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what progress he has made on the development of medical alert cards for people with rare and genetic conditions following the commitment made in the Implementation Plan for the UK Strategy for Rare Diseases.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
In the Second Progress Report from the Rare Disease Policy Board (2018), NHS England proposed to give every patient with a rare disease an ‘alert card’, which would include information about the patient’s rare disease.
This proposal to develop ‘alert cards’ was not progressed at the time due to capacity constraints. This proposal has not featured in the subsequent England Rare Diseases Action Plans (2022 and 2023), and NHS England is now focussing on delivering against the actions identified in these new plans. Under the coordination of care priority this has included developing a toolkit for virtual consultations to help people with complex, multi-system rare diseases access multiple specialists without needing to travel. The England 2023 Rare Diseases Action Plan includes actions to provide the evidence needed to operationalise better coordination of care in the National Health Service and to include the definition of coordination of care in service specifications for patients with rare diseases.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many (a) clinicians and (b) other professionals responded to the Down Syndrome Act 2022 guidance: call for evidence.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
We are undertaking analysis of the consultation responses received from the Down Syndrome Act guidance call for evidence and will issue a report in due course. This report will include a detailed breakdown of respondents and information about what capacity individuals or organisations were responding in, and the area they work in, for example healthcare, social care, or local Government.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when his Department plans to respond to the closed consultation entitled Down Syndrome Act 2022 guidance: call for evidence; and if he will place in the House of Commons Library copies of (a) the complete set of consultation responses and (b) a breakdown of respondents by profession.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
We are undertaking analysis of the consultation responses received from the Down Syndrome Act guidance call for evidence and will issue a report in due course. This report will include a detailed breakdown of respondents and information about what capacity individuals or organisations were responding in, and the area they work in, for example healthcare, social care, or local Government.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when the Government will publish guidance to implement the Down Syndrome Act 2022; and if he will publish the current mandate to the guidance's drafting team.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
We are analysing all the responses to the Down Syndrome Act guidance call for evidence which ran from July to November 2022. The responses to the call for evidence will inform the development of the guidance, required by the Act, which will be consulted on at the earliest opportunity.
The Act places a duty on the Secretary of State for Health and Social Care to publish guidance for relevant authorities, including health, social care, education and housing, on the steps it would be appropriate to take to meet the needs of people with Down syndrome. Guidance will cover these areas and others highlighted as important by the call for evidence. We will continue to work closely with stakeholders and a working group will be set up in due course to support development of the guidance.
Asked by: Liz Twist (Labour - Blaydon)
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 address the backlog in NHS Genomics Medicines Service.
Answered by Will Quince
Minimising the time taken to deliver a genomic test is a key priority for NHS England. NHS England has implemented a monthly data collection and monitoring system across all seven Genomic Laboratory Hubs (GLHs) to better identify variation, implement service improvements and to ensure agreed national turnaround times are met in every region for all patients.
The COVID-19 pandemic has had an ongoing impact on the genomic testing pathway. NHS England are providing the GLHs with additional funding to support recovery and reduce backlogs caused by the COVID-19 pandemic.
GLHs are also undertaking clinical risk assessments on all cases waiting for results so that any can be prioritised for early reporting as needed.
Clinicians are also able to classify cases as ‘urgent’ when a patient has a deteriorating or unstable condition that requires a quicker diagnosis.
Asked by: Liz Twist (Labour - Blaydon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to review the process for genome testing in the NHS to address delays in getting diagnostic test results.
Answered by Will Quince
Minimising the time taken to deliver a genomic test is a key priority for NHS England. NHS England has implemented a monthly data collection and monitoring system across all seven Genomic Laboratory Hubs (GLHs) to better identify variation, implement service improvements and to ensure agreed national turnaround times are met in every region for all patients.
The COVID-19 pandemic has had an ongoing impact on the genomic testing pathway. NHS England are providing the GLHs with additional funding to support recovery and reduce backlogs caused by the COVID-19 pandemic.
GLHs are also undertaking clinical risk assessments on all cases waiting for results so that any can be prioritised for early reporting as needed.
Clinicians are also able to classify cases as ‘urgent’ when a patient has a deteriorating or unstable condition that requires a quicker diagnosis.