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1697660
registered interest false more like this
date less than 2024-03-20more like thismore than 2024-03-20
answering body
Department of Health and Social Care more like this
answering dept id 17 more like this
answering dept short name Health and Social Care more like this
answering dept sort name Health and Social Care more like this
hansard heading Haemochromatosis: Research more like this
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask His Majesty's Government what steps they are taking to support research and development of treatments for patients with haemochromatosis. more like this
tabling member printed
Lord Hay of Ballyore more like this
uin HL3452 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2024-03-28more like thismore than 2024-03-28
answer text <p>The National Institute for Health and Care Research is currently directly funding one ongoing study on haemochromatosis, and over the last five years, has funded infrastructure to support seven others.</p> more like this
answering member printed Lord Markham more like this
question first answered
less than 2024-03-28T13:00:59.58Zmore like thismore than 2024-03-28T13:00:59.58Z
answering member
4948
label Biography information for Lord Markham more like this
tabling member
4352
label Biography information for Lord Hay of Ballyore remove filter
1697661
registered interest false more like this
date less than 2024-03-20more like thismore than 2024-03-20
answering body
Department of Health and Social Care more like this
answering dept id 17 more like this
answering dept short name Health and Social Care more like this
answering dept sort name Health and Social Care more like this
hansard heading Rare Diseases: Health Services more like this
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text 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. more like this
tabling member printed
Lord Hay of Ballyore more like this
uin HL3453 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2024-03-28more like thismore than 2024-03-28
answer text <p>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.</p><p>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.</p>
answering member printed Lord Markham more like this
question first answered
less than 2024-03-28T13:00:33.94Zmore like thismore than 2024-03-28T13:00:33.94Z
answering member
4948
label Biography information for Lord Markham more like this
tabling member
4352
label Biography information for Lord Hay of Ballyore remove filter
1697662
registered interest false more like this
date less than 2024-03-20more like thismore than 2024-03-20
answering body
Department of Health and Social Care more like this
answering dept id 17 more like this
answering dept short name Health and Social Care more like this
answering dept sort name Health and Social Care more like this
hansard heading Rare Diseases: Carers and Families more like this
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask His Majesty's Government what provisions are in place to support the families and caregivers of individuals with rare diseases. more like this
tabling member printed
Lord Hay of Ballyore more like this
uin HL3454 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2024-04-02more like thismore than 2024-04-02
answer text <p>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. In this plan we recognised that significant challenges exist with access to mental health and psychological support for people living with rare conditions, as well as their families and carers. During this year we have taken steps to further understand the challenges faced through a workshop, and have begun to address these needs by developing resources to better equip the workforce to provide support.</p><p>The enormous contribution of unpaid carers, including those caring for individuals with rare diseases, is reflected throughout the Next Steps to Put People at the Heart of Care, published in April 2023. Furthermore, the Better Care Fund in 2023/24 includes £327 million for carers support, including short breaks and respite services for carers. This also funds advice and support to carers, and a small number of additional local authority duties. The Accelerating Reform Fund also provides support for unpaid carers. The Government is developing a new survey of unpaid carers which will capture the wide range of experiences, circumstances, and needs of unpaid carers across England. Through the National Institute for Health and Care Research, an evaluation of the support provided to unpaid carers funded through the Better Care Fund has been commissioned, which will improve the understanding of what support works best for unpaid carers.</p>
answering member printed Lord Markham more like this
question first answered
less than 2024-04-02T14:39:25.383Zmore like thismore than 2024-04-02T14:39:25.383Z
answering member
4948
label Biography information for Lord Markham more like this
tabling member
4352
label Biography information for Lord Hay of Ballyore remove filter