Asked by: Liz Twist (Labour - Blaydon and Consett)
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 15 May 2023 to Question 183537 on Rare Diseases, for what reason the proposal to provide patients with alert cards was not included in the England Rare Diseases Action Plan 2023; and how his Department plans to ensure adequate co-ordination of care for people with rare conditions in emergency settings.
Answered by Will Quince
There are currently no plans to include a proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
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. Progress is being made on existing actions to improve coordination of care and awareness of rare diseases amongst all health care professionals, including those who work in emergency settings.
Asked by: Liz Twist (Labour - Blaydon and Consett)
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 15 May 2023 to Question 183537 on Rare Diseases, whether he plans to include the proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
Answered by Will Quince
There are currently no plans to include a proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
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. Progress is being made on existing actions to improve coordination of care and awareness of rare diseases amongst all health care professionals, including those who work in emergency settings.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether the needs of people affected by rare conditions will be considered in the development of the Major Conditions Strategy; and what steps his Department is taking to ensure that the overlapping needs of individuals with (a) rare conditions and (b) major conditions covered in the strategy will be adequately met.
Answered by Will Quince
The Major Conditions Strategy will set out a vision for how systems can be better organised around patients, rather than in silos around single diseases. Support and management for people with multiple conditions will increasingly require the management of complexity and moving from a single condition approach. The National Health Service will need to adapt to manage the complexity of multiple conditions with the consequent need to co-ordinate clinical support across primary, community and secondary care.
Asked by: Liz Twist (Labour - Blaydon and Consett)
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 the withdrawal of Bluebird Bio from the (a) UK and (b) European market on access to gene therapy treatment for people with (i) beta thalassemia and (ii) cerebral adrenoleukodystrophy.
Answered by Will Quince
No assessment has been made of the potential impact of the withdrawal of Bluebird Bio from the United Kingdom and European markets on access to gene therapy treatment for people with beta thalassemia and cerebral adrenoleukodystrophy. NHS England continues to make cost-effective treatments available to patients in England as determined by NICE’s technology appraisal and highly specialised technologies programmes.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many inspections of (a) adult social care providers, (b) primary medical services, (c) hospitals and (d) mental health services were carried out by the Care Quality Commission in the (i) London and (ii) East of England network in each of the last 24 months.
Answered by Maria Caulfield
A table showing how many inspections of (a) adult social care providers, (b) primary medical services, (c) hospitals and (d) mental health services were carried out by the Care Quality Commission in (i) London (ii) East of England network (iii) the South East and (iv) the South West, in each of the last 24 months, is attached.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many inspections of (a) adult social care providers, (b) primary medical services, (c) hospitals and (d) mental health services were carried out by the Care Quality Commission in the (i) south east and (ii) south west in each of the last 24 months.
Answered by Maria Caulfield
A table showing how many inspections of (a) adult social care providers, (b) primary medical services, (c) hospitals and (d) mental health services were carried out by the Care Quality Commission in (i) London (ii) East of England network (iii) the South East and (iv) the South West, in each of the last 24 months, is attached.
Asked by: Liz Twist (Labour - Blaydon and Consett)
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 implications for his policies of the results of the Special School Eye Care Service trial; and what steps he is taking to support the long-term commissioning of that service.
Answered by Neil O'Brien
I refer the hon. Member to the written statement HCWS861 that I gave to the House on 19 June 2023 regarding Sight Testing in Special Schools. The Department will continue to support NHS England with implementation, including considering whether any regulatory changes may be necessary. The written statement is available at the following link:
https://questions-statements.parliament.uk/written-statements/detail/2023-06-19/hcws861
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much and what proportion of the funding for suicide prevention and bereavement services in the NHS Long Term Plan has been spent on a) suicide prevention and b) bereavement services.
Answered by Maria Caulfield
A total of £57 million was allocated through the NHS Long Term Plan to enable every area of the country to receive funding for suicide prevention and bereavement services by 2023/24. Approximately two thirds of this £57 million, £38 million, has been spent on suicide prevention and the remainder on suicide bereavement services.
The ‘NHS Mental Health Implementation Plan 2019/20 – 2023/24’ provides a detailed breakdown of this investment and the activity that it is due to fund. This is available at the following link: https://www.longtermplan.nhs.uk/wp-content/uploads/2019/07/nhs-mental-health-implementation-plan-2019-20-2023-24.pdf.
The NHS Mental Health Dashboard sets out year by year spending plans for local and national NHS commissioning organisations, which is available at the following link: https://www.england.nhs.uk/mental-health/taskforce/imp/mh-dashboard/
Asked by: Liz Twist (Labour - Blaydon and Consett)
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 and Consett)
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 - Shadow Secretary of State for Transport
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.