Asked by: McMillan, Stuart (Scottish National Party - Greenock and Inverclyde)
Question
To ask the Scottish Government what consideration it has given to adding aplastic anaemia to the list of conditions and illnesses featured on the NHS Inform website.
Answered by Minto, Jenni - Minister for Public Health and Women's Health
The Scottish Government's approach to rare conditions and diseases is not condition-specific. As there are over 7,000 rare conditions it is unfortunately not feasible for NHS Inform to host and maintain individual pages for each condition.
We are absolutely committed to ensuring that people living with a rare condition like Aplastic Anaemia will benefit from our approach. Our Action Plan for Rare Disease (published December 2022) set out our wider priorities and actions, including raising awareness of rare conditions among healthcare professionals.
The current NHS Inform page for rare conditions, developed to improve awareness of rare conditions and signpost to sources of support, is by no means final. We will continue to listen to rare disease community feedback and shape our web content around the needs of all rare condition communities.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure equitable access to specialised care and support for patients with rare diseases across England.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework, providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities, collaboratively developed with the rare disease community, which are: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs. The principles of the UK Rare Diseases Framework commit the four nations to ensuring that any impacts on health inequalities are considered when developing action plans.
Each year since 2021 we have published an England Rare Diseases Action Plan, with health equity highlighted as a focus area. On 29 February 2024 we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year and previous year’s action plans, that relate to equitable access to specialised care and support for patients with rare diseases.
Correspondence Mar. 06 2024
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)Found: Minister of State on the publication of England's third Rare Diseases Action Plan Correspondence
Feb. 29 2024
Source Page: International Rare Diseases Day: An open letterFound: International Rare Diseases Day: An open letter
Feb. 29 2024
Source Page: England Rare Diseases Action Plan 2024Found: England Rare Diseases Action Plan 2024
Mentions:
1: Andrew Stephenson (Con - Pendle) commitment to improve the lives of those living with rare conditions. - Speech Link
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to improve the (a) diagnosis rate, (b) co-ordination of care and (c) access to specialist (i) care, (ii) treatment and (iii) support for hereditary spastic paraplegia.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases such as hereditary spastic paraplegia. The framework lists four priorities collaboratively developed with the rare disease community: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatments and drugs.
Each year since 2021 we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan, which is working to address these priorities across all rare diseases. Increasing awareness among healthcare professionals contributes to improved care, treatment and support for those living with rare conditions. NHS England has developed a digital resource “GeNotes” to support healthcare professionals, which includes information on hereditary spastic paraplegia.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps is she taking to provide people living with a rare disease equitable access to (a) diagnosis, (b) treatment, and (c) care.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities collaboratively developed with the rare disease community: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatments and drugs. The principles of the UK Rare Diseases Framework commit the four nations to “ensure any impacts on health inequalities are considered when developing action plans”.
Each year since 2021 we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year’s and previous years’ action plans that relate to equitable access to diagnosis, treatment, and care.
Mentions:
1: Jim Shannon (DUP - Strangford) , genetic and undiagnosed conditions, the hon. - Speech Link
2: Liz Twist (LAB - Blaydon) group on rare, genetic and undiagnosed conditions. - Speech Link
3: Deidre Brock (SNP - Edinburgh North and Leith) Member for Blaydon (Liz Twist), chair of the APPG on rare, genetic and undiagnosed conditions, spoke - Speech Link
4: Jim Shannon (DUP - Strangford) is why she is the chair of the APPG on rare, genetic and undiagnosed conditions. - Speech Link
Asked by: Kim Leadbeater (Labour - Batley and Spen)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to (a) support research for and (b) raise awareness of Ornithine Transcarbamylase Deficiency.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department funds research into rare diseases such as ornithine transcarbamylase deficiency through the National Institute for Health and Care Research (NIHR). Over the last five years, NIHR infrastructure has supported 13 research awards on ornithine transcarbamylase deficiency. Raising awareness of rare diseases such as ornithine transcarbamylase deficiency among healthcare professionals is a priority of the 2021 UK Rare Diseases Framework, and the 2024 England Rare Diseases Action Plan.