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100728

	registered interest
	date	23/10/2014
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, how much from the public purse has been spent on research into motor neurone disease in each of the last five years.
	tabling member constituency	Leicester West
	tabling member printed	Liz Kendall
	uin	211730
	answer	answer is ministerial correction date of answer 29/10/2014 answer text <p>The following table shows estimated expenditure on research on asthma, motor neurone disease (MND) and osteoporosis by the Medical Research Council, other Research Councils and Innovate UK, and by the National Institute for Health (NIHR) through its research programmes, research centres and units, and research fellowships.</p><p> </p><p> </p><p> </p><p><em>£ million</em></p><p> </p><table><tbody><tr><td> </td><td><p>2009-10</p></td><td><p>2010-11</p></td><td><p>2011-12</p></td><td><p>2012-13</p></td><td><p>2013-14</p></td></tr><tr><td colspan="6"><p>Asthma</p></td></tr><tr><td><p>Medical Research Council</p></td><td><p><del class="ministerial">22.2 </del><ins class="ministerial">6.6</ins></p></td><td><p><del class="ministerial">17.5 </del><ins class="ministerial">5.3</ins></p></td><td><p><del class="ministerial">17.2</del><ins class="ministerial"> 4.5</ins></p></td><td><p><del class="ministerial">19.4</del><ins class="ministerial"> 3.6</ins></p></td><td><p><del class="ministerial">18.8</del><ins class="ministerial"> 5.4</ins></p></td></tr><tr><td><p>Other Research Councils and Innovate UK</p></td><td><p>0.0</p></td><td><p>0.1</p></td><td><p>0.3</p></td><td><p>1.5</p></td><td><p>0.8</p></td></tr><tr><td><p>National Institute for Health Research</p></td><td><p>2.6</p></td><td><p>3.4</p></td><td><p>2.4</p></td><td><p>3.4</p></td><td><p>3.8</p></td></tr><tr><td><p>Total</p></td><td><p><del class="ministerial">24.8</del><ins class="ministerial"> 9.2</ins></p></td><td><p><del class="ministerial">21.0</del><ins class="ministerial"> 8.8</ins></p></td><td><p><del class="ministerial">19.9</del><ins class="ministerial"> 7.2</ins></p></td><td><p><del class="ministerial">24.3 </del><ins class="ministerial">8.5</ins></p></td><td><p><del class="ministerial">23.4</del> <ins class="ministerial">10.0</ins></p></td></tr><tr><td colspan="6"><p>Motor Neurone Research</p></td></tr><tr><td><p>Medical Research Council</p></td><td><p>7.0</p></td><td><p>7.5</p></td><td><p>4.2</p></td><td><p>4.1</p></td><td><p>3.6</p></td></tr><tr><td><p>Other Research Councils and Innovate UK</p></td><td><p>0.2</p></td><td><p>0.2</p></td><td><p>0.4</p></td><td><p>0.7</p></td><td><p>1.0</p></td></tr><tr><td><p>National Institute for Health Research</p></td><td><p>0.1</p></td><td><p>0.1</p></td><td><p>0.4</p></td><td><p>0.7</p></td><td><p>0.5</p></td></tr><tr><td><p>Total</p></td><td><p>7.3</p></td><td><p>7.8</p></td><td><p>5.0</p></td><td><p>5.5</p></td><td><p>5.1</p></td></tr><tr><td colspan="6"><p>Osteoporosis</p></td></tr><tr><td><p>Medical Research Council</p></td><td><p>6.2</p></td><td><p>5.4</p></td><td><p>5.1</p></td><td><p>4.6</p></td><td><p>5.9</p></td></tr><tr><td><p>Other Research Councils and Innovate UK</p></td><td><p>0.0</p></td><td><p>0.0</p></td><td><p>0.1</p></td><td><p>0.4</p></td><td><p>1.0</p></td></tr><tr><td><p>National Institute for Health Research</p></td><td><p>0.3</p></td><td><p>0.7</p></td><td><p>0.8</p></td><td><p>1.3</p></td><td><p>1.8</p></td></tr><tr><td><p>Total</p></td><td><p>6.5</p></td><td><p>6.1</p></td><td><p>6.0</p></td><td><p>6.3</p></td><td><p>8.7</p></td></tr></tbody></table><p> </p><p> </p><p> </p><p>The figures shown for asthma exclude research into air pollution and potential effects on health outcomes including asthma.</p><p> </p><p> </p><p> </p><p>Total spend by the NIHR on asthma, MND and osteoporosis is higher than the figures shown because expenditure by the NIHR Clinical Research Network (CRN) on these diseases cannot be disaggregated from total CRN expenditure. NIHR expenditure relating to development of new drugs for asthma, MND and osteroporosis occurs primarily through NIHR research infrastructure including the CRN and cannot be disaggregated from total expenditure.</p><p> </p><p> </p><p> </p><p>Information on MRC expenditure into the development of new drugs for asthma, MND or osteoporosis is not available.</p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 29/10/2014 17:12:28 question first ministerially corrected 13/11/2014 10:22:56 answering member 4020 label Biography information for George Freeman previous answer version 25123 answering member constituency Mid Norfolk answering member printed George Freeman answering member 4020 label Biography information for George Freeman
	tabling member	4026 label Biography information for Liz Kendall

100401

	registered interest
	date	22/10/2014
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what steps he is taking to ensure that the NHS is meeting the communication needs of people with motor neurone disease.
	tabling member constituency	Birkenhead
	tabling member printed	Mr Frank Field
	uin	211515
	answer	answer is ministerial correction date of answer 29/10/2014 answer text <p>Since 1 April 2013 NHS England has been responsible for commissioning Alternative and Augmentative Communication (AAC) aids for patients with complex disability whose needs require specialised assessment, including for patients with motor neurone disease. Commissioning of non-specialised AAC aids is the responsibility of local clinical commissioning groups.</p><p> </p><p> </p><p> </p><p>NHS England has published a service specification for specialised AAC aids that sets out what should be in place for providers to offer evidence-based, safe and effective services. The specification can be found at:</p><p> </p><p> </p><p> </p><p><a href="http://www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf" target="_blank">www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf</a></p><p> </p><p> </p><p> </p><p>NHS England has identified an additional £22.5 million funding for AAC and Environmental Controls in 2014-15. They have been working closely with the Motor Neurone Disease Association (MNDA) to ensure this funding is equitably distributed across England in a fair and consistent manner. The MNDA are representing all patients on the panel which is reviewing this funding allocation.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 29/10/2014 17:16:16 answering member 1439 label Biography information for Norman Lamb
	tabling member	478 label Biography information for Lord Field of Birkenhead

1062064

	registered interest
	date	15/02/2019
	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	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, when the next planned review date is for the assessment and management of motor neurone disease.
	tabling member constituency	East Londonderry
	tabling member printed	Mr Gregory Campbell
	uin	221996
	answer	answer is ministerial correction date of answer 20/02/2019 answer text <p>The National Institute for Health and Care Excellence (NICE) has advised that the guideline on ‘Motor Neurone Disease: assessment and management’ is currently not scheduled for review. NICE has processes in place to periodically review its guidelines to ensure that they reflect the latest available evidence. Such reviews are normally carried out every five years. As the guideline was published in 2016, the latest the surveillance review would be undertaken will be 2020/21.</p><p> </p><p>If significant new evidence that is likely to affect the guideline’s recommendations emerges before then, NICE is able to bring forward the surveillance review.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 20/02/2019 17:39:05 answering member 4067 label Biography information for Steve Brine
	tabling member	1409 label Biography information for Mr Gregory Campbell

164394

	registered interest
	date	24/11/2014
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what steps he is taking to improve communication support for people with motor neurone disease.
	tabling member constituency	Barnsley Central
	tabling member printed	Dan Jarvis
	uin	215757
	answer	answer is ministerial correction date of answer 27/11/2014 answer text <p>Since 1 April 2013 NHS England has been responsible for commissioning Alternative and Augmentative Communication (AAC) aids for patients with complex disability whose needs require specialised assessment, including for patients with motor neurone disease. Commissioning of non-specialised AAC aids is the responsibility of local clinical commissioning groups.</p><p> </p><p> </p><p> </p><p>NHS England has published a service specification for specialised AAC aids that sets out what should be in place for providers to offer evidence-based, safe and effective services and supports equity of access to a nationally consistent, high quality service for patients. The specification can be found at:</p><p> </p><p> </p><p> </p><p><a href="http://www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf" target="_blank">www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf</a></p><p> </p><p> </p><p> </p><p>NHS England has identified an additional £22.5 million funding for AAC and Environmental Controls in 2014-15. They have been working closely with the Motor Neurone Disease Association (MNDA) to ensure this funding is equitably distributed across England in a fair and consistent manner. The MNDA are representing all patients on the panel which is reviewing this funding allocation.</p><p> </p><p> </p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 27/11/2014 16:58:27 answering member 1439 label Biography information for Norman Lamb
	tabling member	4243 label Biography information for Dan Jarvis

168676

	registered interest
	date	08/12/2014
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what steps he is taking to ensure that people with motor neurone disease have appropriate access to support and equipment in order for their communication needs to be met.
	tabling member constituency	Montgomeryshire
	tabling member printed	Glyn Davies
	uin	217600
	answer	answer is ministerial correction date of answer 15/12/2014 answer text <p>Since 1 April 2013 NHS England has been responsible for commissioning Alternative and Augmentative Communication (AAC) aids for patients with complex disability whose needs require specialised assessment, including for patients with motor neurone disease. Commissioning of non-specialised AAC aids is the responsibility of local clinical commissioning groups.</p><p> </p><p> </p><p> </p><p>NHS England has identified an additional £22.5 million funding for AAC and Environmental Controls in 2014-15. A process to identify appropriate providers, and ensure they were able to meet the AAC service specification and standards began in April this year as soon as the budget was confirmed. The specification can be found at:</p><p> </p><p> </p><p> </p><p><a href="http://www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf" target="_blank">www.england.nhs.uk/wp-content/uploads/2013/06/d01-com-dis-equ-alt-aug-comm-aids.pdf</a></p><p> </p><p> </p><p> </p><p>The identification of providers was completed in August, and just under £15 million specifically for AAC was transferred to Local Area Team commissioners to agree contracts. During this process, NHS England worked closely with the Motor Neurone Disease Association to ensure that funding was equitably distributed in a fair and consistent manner. The 13 AAC providers selected are in the process of recruiting the required additional specialist therapy staff. Services are already accepting referrals and patients are being prioritised according to their clinical need, with priority being given to patients with life limiting conditions.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 15/12/2014 16:41:19 answering member 1439 label Biography information for Norman Lamb
	tabling member	4041 label Biography information for Glyn Davies

178998

	registered interest
	date	10/02/2015
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone 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 effectiveness of the diagnosis and treatment of motor neurone disease.
	tabling member constituency	South Down
	tabling member printed	Ms Margaret Ritchie
	uin	224071
	answer	answer is ministerial correction date of answer 23/02/2015 answer text <p>Motor neurone disease (MND) is a rare incurable neurodegenerative condition and there are estimated to be up to 5,000 people with MND in the United Kingdom. In its early stages the disease can be difficult to diagnose because the symptoms a patient may present with, such as fatigue, clumsiness and muscle weakness are shared with more common, less serious conditions. No two people with MND will be affected in exactly the same way and there is no one test to diagnose the condition.</p><p> </p><p> </p><p> </p><p>To support general practitioners (GPs) to spot the potential symptoms of MND, the Royal College of General Practitioners (RCGPs) and the MND Association have worked together to produce a ‘Red Flag Tool’ which sets out key signs of MND to help GPs to identify suspected cases and refer them promptly to a neurologist for appropriate investigation. The RCGP and British Medical Journal have also both produced MND e-learning courses which together cover both signs and symptoms as well disease management.</p><p> </p><p> </p><p> </p><p>All services for people with MND should be commissioned as a specialised service in line with NHS England’s neurosciences service specification. This sets out what providers must have in place to deliver high quality specialised neurological care.</p><p> </p><p>Specialist MND care can include a range of services such as counselling and emotional support, respiratory care, speech and language therapy, physiotherapy, respiratory secretion management, neurorehabilitation, physiotherapy and palliative care. Drugs can be used for symptom management, but riluzole is the only pharmacological drug licensed in the UK to slow the progression of MND.</p><p> </p><p> </p><p> </p><p>Finally, the Department has asked the National Institute for Health and Care Excellence to produce a clinical guideline on MND. Development is currently underway and the guideline is anticipated for publication in February 2016.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 23/02/2015 17:03:17 answering member 1439 label Biography information for Norman Lamb
	tabling member	4130 label Biography information for Baroness Ritchie of Downpatrick

436786

	registered interest
	date	09/12/2015
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what support in (a) monetary terms and (b) skills his Department provides for research into motor neurone disease.
	tabling member constituency	Chippenham
	tabling member printed	Michelle Donelan
	uin	19410
	answer	answer is ministerial correction date of answer 16/12/2015 answer text <p>The usual practice of the Department's National Institute for Health Research (NIHR) is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. The NIHR welcomes funding applications for research into any aspect of human health, including motor neurone disease (MND). These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.</p><br /><p>Current NIHR awards include a £0.3 million doctoral research fellowship looking at the use of telehealth in MND.</p><br /><p>The NIHR Clinical Research Network is currently recruiting patients to 21 trials and studies in MND.</p><br /><p>The NIHR Office for Clinical Research Infrastructure is a unique resource for the global life sciences industry, simplifying access to the United Kingdom’s world-leading clinical research infrastructure in all disease areas including MND.</p><br /><p>The NIHR Research Design Service supports researchers to develop and design high-quality proposals for submission to NIHR itself and also to other national, peer-reviewed funding competitions for applied health or social care research in all disease and topic areas including MND. The service provides expert advice to researchers on all aspects of preparing funding applications in these fields, including advice on research methodology, clinical trials, patient involvement, and ethics and governance.</p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 16/12/2015 14:36:23 answering member 4020 label Biography information for George Freeman
	tabling member	4530 label Biography information for Michelle Donelan

448328

	registered interest
	date	27/01/2016
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, if he will make changes to the clinical guidelines for motor neurone disease to improve diagnosis and treatment.
	tabling member constituency	East Londonderry
	tabling member printed	Mr Gregory Campbell
	uin	24378
	answer	answer is ministerial correction date of answer 01/02/2016 answer text <p>The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing robust, evidence-based guidance for the National Health Service. NICE is currently developing a clinical guideline on the assessment and management of motor neurone disease, and expects to publish its final guidance in February 2016. NICE is also producing a quality standard on motor neurone disease and its anticipated publication date is August 2016.</p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 01/02/2016 12:47:43 answering member 4020 label Biography information for George Freeman
	tabling member	1409 label Biography information for Mr Gregory Campbell

514979

	registered interest
	date	22/04/2016
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone 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 increase funding for motor neurone disease (a) research treatment and (b) patient care.
	tabling member constituency	Salford and Eccles
	tabling member printed	Rebecca Long Bailey
	uin	35174
	answer	answer is ministerial correction date of answer 27/04/2016 answer text <p>On 24 February 2016, the National Institute for Health and Care Excellence (NICE) published a new guideline on the assessment and management of motor neurone disease (MND). The guideline sets out the signs and symptoms of the disease and recommends that robust protocols and pathways are in place to inform healthcare professionals about MND and how it may present and to inform healthcare professionals in all settings about local referral arrangements. NICE is clear that patients suspected of having MND should be referred without delay. The guideline can be found at the following link:</p><p><a href="http://www.nice.org.uk/guidance/ng42/resources/motor-neurone-disease-assessment-and-management-1837449470149" target="_blank">www.nice.org.uk/guidance/ng42/resources/motor-neurone-disease-assessment-and-management-1837449470149</a></p><p>To support general practitioners (GPs) to spot the potential symptoms of MND, the Royal College of General Practitioners (RCGP) and the MND Association have worked together to produce a ‘Red Flag Tool’ which sets out key signs of MND to help GPs to identify suspected cases and refer them promptly to a neurologist for appropriate investigation. The RCGP and British Medical Journal have also both produced MND e-learning courses which together cover both signs and symptoms as well as disease management.</p><p>Riluzole is the only drug licensed in the United Kingdom to slow the progression of MND. In 2001, NICE recommended that Riluzole should be available for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of the disease within its licensed indications, which are to extend life or the time to mechanical ventilation for individuals with ALS. The National Health Service is legally obliged to fund and resource medicines and treatments recommended by NICE's technology appraisals. Decisions regarding the initiation of Riluzole therapy are a matter for individual clinicians in discussion with their patients.</p><p>The usual practice of the Department's National Institute for Health Research (NIHR) is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. The NIHR welcomes funding applications for research into any aspect of human health, including MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. Current NIHR awards include a £0.3 million doctoral research fellowship looking at the use of telehealth in MND.</p> answering member constituency Battersea answering member printed Jane Ellison grouped question UIN 35175 35176 question first answered 27/04/2016 13:09:35 answering member 3918 label Biography information for Jane Ellison
	tabling member	4396 label Biography information for Rebecca Long Bailey

523520

	registered interest
	date	07/06/2016
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what funding is allocated to each region for support services for people with motor neurone disease.
	tabling member constituency	Chippenham
	tabling member printed	Michelle Donelan
	uin	39575
	answer	answer is ministerial correction date of answer 15/06/2016 answer text <p>Clinical commissioning groups and NHS England are responsible for delivering services for people with motor neurone disease, funded from their annual funding allocations. Information on funding for motor neurone related services is not collected centrally.</p> answering member constituency Battersea answering member printed Jane Ellison question first answered 15/06/2016 12:38:09 answering member 3918 label Biography information for Jane Ellison
	tabling member	4530 label Biography information for Michelle Donelan