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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

1316286

	registered interest
	date	19/05/2021
	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	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, what steps his Department is taking to support targeted research on motor neurone disease.
	tabling member constituency	Crawley
	tabling member printed	Henry Smith
	uin	3840
	answer	answer is ministerial correction date of answer 27/05/2021 answer text <p>We are currently working on ways to significantly boost further research on dementia and neurodegeneration. On 29 April, I hosted a roundtable event on boosting motor neurone disease research with the National Institute for Health Research Sheffield Biomedical Research Centre. The event brought together researchers, charities, people with motor neurone disease and funders. We will be working closely with these stakeholders over the coming months to consider ways forward for this vital area of research.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 27/05/2021 16:57:56 answering member 4527 label Biography information for Helen Whately
	tabling member	3960 label Biography information for Henry Smith

1338849

	registered interest
	date	22/06/2021
	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	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, whether he plans to increase funding for motor neurone disease research and treatment over the next five years.
	tabling member constituency	Bristol East
	tabling member printed	Kerry McCarthy
	uin	20333
	answer	answer is ministerial correction date of answer 28/06/2021 answer text <p><strong> </strong>The Department funds research on health and social care through the National Institute for Health Research (NIHR). It is not usual practice to ring-fence funding for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including motor neurone disease (MND). 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><p>NHS England and NHS Improvement commission the specialised care and treatment which patients with MND may receive from the specialised neurological treatment centres across England. Funding decisions for these are made in line with local priorities and in the context of the interim funding regime in place during the pandemic.</p> answering member constituency Charnwood answering member printed Edward Argar question first answered 28/06/2021 11:48:47 answering member 4362 label Biography information for Edward Argar
	tabling member	1491 label Biography information for Kerry McCarthy

1341739

	registered interest
	date	29/06/2021
	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	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, what discussions he has had with the Chancellor of the Exchequer on the future funding of motor neurone disease (a) research and (b) treatment ahead of the 2021 Spending Review.
	tabling member constituency	Bristol East
	tabling member printed	Kerry McCarthy
	uin	24129
	answer	answer is ministerial correction date of answer 05/07/2021 answer text <p>There have been no specific discussions. However, we are currently working on ways to significantly boost further research on dementia and neurodegeneration at all stages. The Department funds research on health and social care through the National Institute for Health Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including motor neurone disease (MND). 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><p>NHS England and NHS Improvement commission the specialised care and treatment that patients with MND may receive from the specialised neurological treatment centres across England. Funding decisions for these are made in line with local priorities and in the context of the interim funding regime in place during the pandemic.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 05/07/2021 16:23:42 answering member 4527 label Biography information for Helen Whately
	tabling member	1491 label Biography information for Kerry McCarthy

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

391369

	registered interest
	date	20/07/2015
	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	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty’s Government what step they are taking to ensure appropriate and timely access to communication support for persons living with Motor Neurone Disease.
	tabling member printed	Lord MacKenzie of Culkein
	uin	HL1693
	answer	answer is ministerial correction date of answer 24/07/2015 answer text <p>Since 1 April 2013, NHS England has been responsible for commissioning augmentative and alternative communication (AAC) aids for patients with complex disability, such as motor neurone disease. Prior to this, there was no national AAC service which resulted in variation in provision of specialised AAC services and inequitable access for patients.</p><p> </p><p><br> As the commissioner of specialised AAC services, NHS England is committed to improving access to the specialist assessments and equipment. Over the past two years it has worked hard to assess the levels of specialised AAC provision and levels of need and agree contracts with providers to deliver the new, national service. NHS England has allocated a £15 million recurring budget for the commissioning of AAC services for 2015/16 which builds on a part year allocation provided in 2014/15. All 13 AAC providers are accepting referrals and assessments are being offered to patients. Priority is being given to patients who have a life limiting condition and providers are working to ensure patients have timely access to assessment and services.</p><p> </p><p> </p><p> </p> answering member printed Lord Prior of Brampton question first answered 24/07/2015 11:27:41 answering member 127 label Biography information for Lord Prior of Brampton
	tabling member	2507 label Biography information for Lord MacKenzie of Culkein