Asked by: Martyn Day (Scottish National Party - Linlithgow and East Falkirk)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, what steps he is taking to ensure that the UK maintains its role in Europe-wide research collaboration into muscular dystrophy after the UK leaves the EU.
Answered by Lord Johnson of Marylebone
I refer the hon. Member to the answer I gave on 28 June 2017 to Question UIN 185.
Asked by: Philippa Whitford (Scottish National Party - Central Ayrshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps his Department is taking to encourage clinical commissioning groups to follow best practice commissioning policy on access to cough assist machines for people with muscle-wasting conditions.
Answered by David Mowat
The provision of cough assist machines is a matter for local clinical commissioning groups (CCGs). CCGs have the independence and autonomy to make commissioning decisions for local populations, taking into account the available evidence and individual circumstances as appropriate.
The evidence base to support the routine use of cough assist machines in muscle-wasting conditions over other cough assist methods is not well established. NHS England worked with Muscular Dystrophy UK through its Bridging the Gap project to address areas of concern raised by patients and their representatives, one of which was the provision of cough assist machines. Through this work, a number of CCGs developed commissioning policies which set out the circumstances in which to consider these devices. In addition, in February 2016 the National Institute for Health and Care Excellence published new guidance on the assessment and management of motor neurone disease, recommending that cough assist machines should be considered if assisted breath stacking is not effective, and/or during a respiratory tract infection.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps his Department is taking to encourage clinical commissioning groups to increase access to cough-assist machines for people with muscle-wasting conditions, such as muscular dystrophy.
Answered by David Mowat
The provision of cough assist machines is a matter for local clinical commissioning groups (CCGs). CCGs have the independence and autonomy to make commissioning decisions for local populations, taking into account the available evidence and individual circumstances as appropriate.
Currently, the evidence base to support the routine use of cough assist machines in muscle-wasting conditions is not well established. NHS England worked with Muscular Dystrophy UK through its Bridging the Gap project to address areas of concern raised by patients and their representatives, one of which was the provision of cough assist machines. Through this work, a number of CGGs developed commissioning policies which set out the circumstances in which to consider these devices. In addition, in February 2016 the National institute for Health and Care Excellence published new guidance on the assessment and management of motor neurone disease, recommending that cough assist machines should be considered if assisted breath stacking is not effective, and/or during a respiratory tract infection.
Asked by: Jim Cunningham (Labour - Coventry South)
Question to the Department for Digital, Culture, Media & Sport:
To ask the Secretary of State for Culture, Media and Sport, if she will meet Muscular Dystrophy UK's Trailblazers to discuss accessibility at sports venues.
Answered by Tracey Crouch
I would be very happy to meet representatives from Muscular Dystrophy UK's Trailblazers to discuss accessibility at sports venues.
Our Sports Strategy sends a clear message to all sports that sports stadia should provide an inclusive environment that welcomes all spectators. While the spotlight on accessibility is rightly on football, we want all sports to ensure they fulfil their legal obligations towards disabled fans. We will be looking to other sports to follow football’s example, to ensure disabled spectators receive the legal requirements to which they are entitled.
The Equality and Human Rights Commission (EHRC) is the regulatory body responsible for enforcing the Equality Act 2010 The EHRC has powers to ensure service providers, including sports stadia, fulfil their legal obligations under the Act.
Asked by: Steve McCabe (Labour - Birmingham, Selly Oak)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, if his Department will run trials of the drug Nusinersen.
Answered by Baroness Blackwood of North Oxford
Biogen Ltd submitted a marketing authorisation application for Nusinersen to the European Medicines Agency (EMA) in October 2016. The application has been approved for accelerated assessment by the Committee for Medicinal Products for Human Use who examine the evidence of the safety, efficacy and quality of new medicines proposed for licence in the European Union and is under assessment. Approval for accelerated assessment allows for faster assessment by EMA’s scientific committees (within up to 150 days rather than up to 210 days).
The Department’s National Institute for Health Research is currently in the pre-contracting stage of commissioning a Single Technology Appraisal on Nusinersen for treating infant or child spinal muscular dystrophy. The appraisal is due to begin in October 2017.
Asked by: Caroline Lucas (Green Party - Brighton, Pavilion)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, pursuant to the Answer of 30 November 2016 to Question 54104, on Neuromuscular Disorders; South East, what the status of funding approval is for the care adviser post; what the remit is of that post and how it will link to specialist neuromuscular centres in London; and when recruitment for that post is expected to begin.
Answered by David Mowat
As stated in the answer to Question 54104, NHS England is responsible for commissioning specialised neurological services. NHS England (South) advises that it is supporting ongoing work to identify the job description, remit and geographical area that will be covered by the care adviser post. NHS England (South) is arranging a meeting for the new year with the neuromuscular outreach officer at Muscular Dystrophy UK and Surrey Clinical Commissioning Group to take this work forward.
Asked by: Jim Cunningham (Labour - Coventry South)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, if he will estimate the number of people in the workforce who have multiple sclerosis; and if he will make a statement.
Answered by Penny Mordaunt - Lord President of the Council and Leader of the House of Commons
Our measure of disability employment by condition type is based on data from the Labour Force Survey. Whilst this survey has a large sample size, it does not collect enough data on every specific condition to provide robust estimates on the number of working age adults who have multiple sclerosis on its own. Latest available figures report that in Q2 2016 around 146,000 of the disabled working age adults who have progressive illnesses that include multiple sclerosis (but also cancer, symptomatic HIV, Parkinson’s disease and muscular dystrophy) are in employment.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what discussions his Department has had with NICE on a possible timetable for making Exon skipping therapy available to address Duchenne muscular dystrophy.
Answered by Baroness Blackwood of North Oxford
The Exon skipping therapy eteplirsen (Exondys 51) is currently being considered for referral to the National Institute for Health and Care Excellence’s (NICE) highly specialised technologies (HST) programme. Following discussion between NICE, NHS England and the Department as part of the topic selection process, NICE recently consulted stakeholders on its suitability for the HST process.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what steps he is taking to fund research to improve the care and treatment of people with the limb girdle 2b form of Duchenne muscular dystrophy.
Answered by Baroness Blackwood of North Oxford
The Department's National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including muscular dystrophy. 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.
Research relating to limb-girdle muscular dystrophy is being funded by the NIHR Newcastle Biomedical Research Centre. Current funding for NIHR Biomedical Research Centres ends in March 2017.
In September the Government announced the largest ever investment into health research - £816 million over five years from April 2017 for 20 NIHR Biomedical Research Centres in England. We would expect some of this investment to support muscular dystrophy research.
The NIHR Clinical Research Network is currently recruiting patients to a study of acceptance and commitment therapy for muscle disease. Limb-girdle muscular dystrophy is one of four muscle diseases included in the study.
Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what assessment he has made of the adequacy of care available to treat people with the limb girdle 2b form of Duchenne muscular dystrophy.
Answered by David Mowat
NHS England’s neurosciences services specifications for adults and children set out what providers must have in place to deliver evidence-based, safe and effective care for patients with neuromuscular disorders, including limb girdle 2b. Under the care of a consultant-led multidisciplinary team that includes a range of clinical, specialist and health professionals, patients can receive tailored care and support, access to specialist treatments and supportive therapies. The specifications can be found at the following links:
www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf
www.england.nhs.uk/wp-content/uploads/2013/06/e09-paedi-neurology.pdf