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1628451

registered interest
date	17/05/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what recent discussions he has had with the National Institute for Health and Care Excellence on the development of NICE guidelines for Huntington's Disease.
tabling member constituency	Leeds Central
tabling member printed	Hilary Benn
uin	185490
answer	answer is ministerial correction date of answer 22/05/2023 answer text <p>The Department and the National Institute for Health and Care Excellence officials are currently discussing the possible development of a guideline on Huntingdon’s disease through the established topic selection arrangements. This entails consideration of factors such as the burden of disease, the evidence base and variation in practice.</p> answering member constituency Colchester answering member printed Will Quince question first answered 22/05/2023 15:52:44 answering member 4423 label Biography information for Will Quince
tabling member	413 label Biography information for Hilary Benn

1612997

registered interest
date	20/04/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people living with Huntington’s disease.
tabling member constituency	Ealing Central and Acton
tabling member printed	Dr Rupa Huq
uin	182034
answer	answer is ministerial correction date of answer 27/04/2023 answer text <p>NHS England plans to improve the support for Huntington’s disease and other neurological conditions through continued developments to neuroscience services.</p><p>Specialised elements of neurology care are currently provided through the 25 specialised neurological treatment centres across England to ensure that people with more complex health needs, including those with Huntington’s, receive the best possible care and support.</p><p>The NHS England Neuroscience Transformation Programme is developing a number of optimal pathways for neurology services. The transformation programme will provide integrated care systems with the tools, information and resources that they will need to drive the transformation in their neurology services, as they take on joint or delegated responsibility for commissioning specialised neurology services from April 2023 onwards. In addition, the neuropsychiatry service specification is in development. When finalised, this will outline the multi-disciplinary approach to caring for patients with complex neurological conditions who require specialised assessment and mental health support.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 27/04/2023 08:39:45 answering member 4527 label Biography information for Helen Whately
tabling member	4511 label Biography information for Dr Rupa Huq

1581142

registered interest
date	26/01/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how many Integrated Care Boards in England have a dedicated care co-ordinator for Huntington's Disease.
tabling member constituency	Leeds Central
tabling member printed	Hilary Benn
uin	133535
answer	answer is ministerial correction date of answer 01/02/2023 answer text <p>The information requested is not held. NHS England specialised commissioning does not centrally commission dedicated care co-ordinators for Huntington’s Disease within integrated care boards.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 01/02/2023 11:47:06 answering member 4527 label Biography information for Helen Whately
tabling member	413 label Biography information for Hilary Benn

1524773

registered interest
date	20/10/2022
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how many people were diagnosed with Huntington's disease in (a) Stockport constituency, (b) the Metropolitan Borough of Stockport and (c) the UK in each of the last five years.
tabling member constituency	Stockport
tabling member printed	Navendu Mishra
uin	68020
answer	answer is ministerial correction date of answer 25/10/2022 answer text <p>This information is not held in the format requested.</p> answering member constituency Colchester answering member printed Will Quince question first answered 25/10/2022 16:43:29 answering member 4423 label Biography information for Will Quince
tabling member	4811 label Biography information for Navendu Mishra

1328992

registered interest
date	27/05/2021
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) raise awareness of Huntington’s Disease among (i) NHS leaders and (ii) general healthcare professionals and (b) help them to provide services that support people with that disease.
tabling member constituency	Harrow West
tabling member printed	Gareth Thomas
uin	8529
answer	answer is ministerial correction date of answer 09/06/2021 answer text <p>We are committed to improving the lives of those who live with rare diseases including Huntington’s disease. We published the new United Kingdom Rare Diseases Framework in January 2021. The new Framework provides the high-level direction for rare diseases in the UK over the next five years and increasing awareness of rare diseases among healthcare professionals is identified as a key priority.</p><p>The Framework will be followed by nation-specific action plans, developed in close consultation with stakeholders, including patient representative groups such as Genetic Alliance UK, of which Huntington’s disease Association are a member.</p><p>Patients with Huntington's disease have access to a range of services, including the services of their general practitioner, associated health professionals, neurology services, occupational therapy, speech and language therapy, local mental health services for patients and their families, palliative care where appropriate and online resources. NHS England also commissions neuropsychiatry services for adults and children which provide assessment and treatment for patients with conditions such as young onset dementia including Huntington’s disease.</p> answering member constituency Mid Bedfordshire answering member printed Ms Nadine Dorries grouped question UIN 8530 8531 question first answered 09/06/2021 15:38:58 answering member 1481 label Biography information for Ms Nadine Dorries
tabling member	177 label Biography information for Gareth Thomas

1328995

registered interest
date	27/05/2021
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he has taken to support Huntington’s Disease awareness month; and if he will make a statement.
tabling member constituency	Harrow West
tabling member printed	Gareth Thomas
uin	8531
answer	answer is ministerial correction date of answer 09/06/2021 answer text <p>We are committed to improving the lives of those who live with rare diseases including Huntington’s disease. We published the new United Kingdom Rare Diseases Framework in January 2021. The new Framework provides the high-level direction for rare diseases in the UK over the next five years and increasing awareness of rare diseases among healthcare professionals is identified as a key priority.</p><p>The Framework will be followed by nation-specific action plans, developed in close consultation with stakeholders, including patient representative groups such as Genetic Alliance UK, of which Huntington’s disease Association are a member.</p><p>Patients with Huntington's disease have access to a range of services, including the services of their general practitioner, associated health professionals, neurology services, occupational therapy, speech and language therapy, local mental health services for patients and their families, palliative care where appropriate and online resources. NHS England also commissions neuropsychiatry services for adults and children which provide assessment and treatment for patients with conditions such as young onset dementia including Huntington’s disease.</p> answering member constituency Mid Bedfordshire answering member printed Ms Nadine Dorries grouped question UIN 8529 8530 question first answered 09/06/2021 15:38:58 answering member 1481 label Biography information for Ms Nadine Dorries
tabling member	177 label Biography information for Gareth Thomas

1218600

registered interest
date	29/06/2020
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how many people have been diagnosed with Huntington's disease in the last 12 months.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	66059
answer	answer is ministerial correction date of answer 17/07/2020 answer text <p>The Department does not hold information on how many people have been diagnosed with Huntington's disease in the last 12 months.</p><p>The Government is committed to improving the lives of those affected by rare disease and continues to implement the commitments made in the UK Strategy for Rare Diseases.</p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 17/07/2020 10:10:41 answering member 4380 label Biography information for Jo Churchill
tabling member	4131 label Biography information for Jim Shannon

1125432

registered interest
date	08/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help raise awareness of Huntington's disease.
tabling member constituency	Mansfield
tabling member printed	Ben Bradley
uin	252093
answer	answer is ministerial correction date of answer 17/05/2019 answer text <p>Huntington’s disease is a rare inherited progressive disorder that causes motor, cognitive, and psychiatric signs and symptoms.</p><p>The United Kingdom Rare Disease Strategy, published in 2013, is a high-level framework committed to raising awareness about all rare diseases, such as Huntington’s disease, and sets out a strategic vision for improving the lives of all those affected.</p><p>Steps to increase awareness of rare conditions are being taken through the implementation of the Strategy. The Department published an update to its implementation plan to achieve the commitments in the Strategy in England on 27 February 2019.</p> answering member constituency South Ribble answering member printed Seema Kennedy question first answered 17/05/2019 12:38:11 answering member 4455 label Biography information for Seema Kennedy
tabling member	4663 label Biography information for Ben Bradley

795250

registered interest
date	27/11/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, how many people have been diagnosed with Huntington's Disease in each of the last five years.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	115671
answer	answer is ministerial correction date of answer 05/12/2017 answer text <p>‘Finished Admission Episodes’ data show that in the financial year of 2012-13 221 patients received a primary diagnosis of Huntington disease. In the following years 261 (2013-14), 285 (2014-15), 264 (2015-16) and 249 (2016-17) patients, respectively, received a primary diagnosis of Huntington disease.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 05/12/2017 14:40:15 answering member 4065 label Biography information for Dame Jackie Doyle-Price
tabling member	4131 label Biography information for Jim Shannon

694238

registered interest
date	24/02/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Huntington's Disease
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what recent assessment he has made of the adequacy of treatment provision for people diagnosed with Huntington's disease.
tabling member constituency	Coventry South
tabling member printed	Mr Jim Cunningham
uin	65498
answer	answer is ministerial correction date of answer 01/03/2017 answer text <p>NHS England aims to put personalised care planning at the centre of building care specific to each and every person's needs and goals. This includes the adoption of best practice in line with National Institute for Health and Care Excellence guidance and quality standards.</p><p> </p><p>Patients with Huntington's disease have access to a range of services including the services of their general practitioner, associated health professionals, neurology services, occupational therapy, speech and language therapy, local mental health services for sufferers and their families, palliative care where appropriate and online resources, including factsheets.</p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood question first answered 01/03/2017 14:24:50 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	308 label Biography information for Mr Jim Cunningham