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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

578676

registered interest
date	08/09/2016
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 support his Department makes available to families who are supporting relatives with Huntington's disease.
tabling member constituency	Leeds North West
tabling member printed	Greg Mulholland
uin	45696
answer	answer is ministerial correction date of answer 16/09/2016 answer text <p>The Government published the UK Strategy for Rare Diseases in November 2013. The Strategy is signed up to by the four home countries of the United Kingdom. The Strategy contains 51 high level commitments which comprise a long term strategic vision for improving the lives of all those with rare diseases. The focus throughout is patients and their families.</p><p> </p><p>The UK Strategy includes commitments to empower those affected by rare diseases including making sure that patients and their families have a say in decisions about treatment and in the planning, evaluation and monitoring of services.</p><p> </p><p>The Strategy also recognises the important role played by patient organisations such as the Huntington’s Disease Association in the provision of support, information and advice and helping patients and their families feel less isolated.</p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood question first answered 16/09/2016 12:53:54 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	1540 label Biography information for Greg Mulholland

416788

registered interest
date	04/09/2015
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, if he will establish a cross-government Huntington's Disease strategy.
tabling member constituency	Plymouth, Sutton and Devonport
tabling member printed	Oliver Colvile
uin	8801
answer	answer is ministerial correction date of answer 14/09/2015 answer text <p>There were less than six admissions with a primary diagnosis of Huntingdon’s Disease for Plymouth Hospitals NHS Trust in the year 2013-14; this is not a count of people as the same person may have had more than one admission episode within the same time period. This does not include any cases there may have been with independent providers.</p><p> </p><p> </p><p> </p><p>The Department published a UK Strategy for Rare Diseases in 2013 and established the UK Rare Disease Forum to monitor the progress against the UK Strategy. The UK Rare Disease Forum is due to report on the progress made against the recommendations made in the UK Strategy in 2016.</p><p> </p><p> </p><p> </p><p>Patients with Huntington's disease already have access to a range of NHS services including those provided by general practitioners and associated health professionals, neurology services, occupational therapists, speech and language therapists, local mental health services and palliative care where appropriate.</p><p> </p><p> </p><p> </p><p>Patients with Huntington’s disease will benefit from the implementation of the UK Rare Disease Strategy that will lead to further improvements in the diagnostic pathway for this condition.</p><p> </p><p> </p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman grouped question UIN 8515 question first answered 14/09/2015 15:31:00 answering member 4020 label Biography information for George Freeman
tabling member	4022 label Biography information for Oliver Colvile

169513

registered interest
date	10/12/2014
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 steps his Department is taking to ensure that people suffering from Huntington's Disease have access to appropriate care and support from healthcare professionals.
tabling member constituency	Pudsey
tabling member printed	Stuart Andrew
uin	218022
answer	answer is ministerial correction date of answer 15/12/2014 answer text <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 on england.nhs.uk</p><p> </p><p> </p><p> </p><p>In addition, the Neurosciences Clinical Reference Group is continuing to work on the development of a draft Neuropsychiatry service specification and hope to have this completed for consideration in the next few months which will, if implemented, be of relevance for patients with Huntington’s Disease.</p><p> </p><p> </p><p> </p><p><strong> </strong></p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 15/12/2014 17:26:00 answering member 1439 label Biography information for Norman Lamb
tabling member	4032 label Biography information for Stuart Andrew

93562

registered interest
date	15/10/2014
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 discussions his Department has had with the Huntingdon's Disease Association on the care of people with Huntingdon's disease.
tabling member constituency	Leeds North West
tabling member printed	Greg Mulholland
uin	210624
answer	answer is ministerial correction date of answer 22/10/2014 answer text <p>The Department has no record of contact from the Huntington’s Disease Association in the recent past although a small number of our correspondents have been given details of the organisation’s website (<a href="http://hda.org.uk/" target="_blank">http://hda.org.uk/</a>) so that they might obtain further support.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 22/10/2014 14:53:46 answering member 1439 label Biography information for Norman Lamb
tabling member	1540 label Biography information for Greg Mulholland

92579

registered interest
date	10/10/2014
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 changes have been made to the level of support available for patients with Huntingdon's disease in the last year.
tabling member constituency	Leeds North West
tabling member printed	Greg Mulholland
uin	209847
answer	answer is ministerial correction date of answer 17/10/2014 answer text <p>Whilst there have been no changes to the level of support so far, the Neurosciences Clinical Reference Group is about to consider a draft Neuropsychiatry service specification at its meeting next week which will, if implemented, be of relevance for patients with Huntington’s Disease.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 17/10/2014 12:46:47 answering member 1439 label Biography information for Norman Lamb
tabling member	1540 label Biography information for Greg Mulholland