Found: their mother to Dignitas told the Committee: [ … ] as soon as she [the mother] found out that she had motor

Found: by MND Association (ENB0010) About MND and the MND Association Few conditions are as devastating as motor

Found: I am thinking about conditions such as motor neurone disease , which moves very quickly .

Found: I am thinking about conditions such as motor neurone disease, which moves very quickly.

Found: utilise DFG effectively on a new scheme to support people with rapidly progressing conditions such as Motor

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to support effective routes to market for precision medicines for (a) motor neurone disease and (b) other rare diseases in the UK.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

Should the Medicines and Healthcare products Regulatory Agency (MHRA) receive a marketing authorisation application (MAA) or applications, the MHRA will consider the drug with regards to quality, safety, and efficacy. The MHRA has procedures in place to consider drugs as part of an accelerated pathway. This is possible as part of national access collaboration, and international recognition. The MHRA would be able to consider motor neurone disease and other rare disease treatment products, under any of the procedures for the benefit of patients.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps she is taking to support people living with motor neurone disease.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of motor neurone disease (MND), to support its diagnosis. The guideline recommends coordinated care for people with MND, using a clinic based, MND specialist, multi-disciplinary team approach. The core multi-disciplinary team should consist of healthcare and other professionals with expertise in MND, and should include specialist nurses.

The Government has committed to delivering at least £50 million to support MND research over five years, from 2022 onwards, as part of a package of £375 million for research into neurodegenerative diseases. In June 2023, the Government announced that more than £35 million of the £50 million pledged to cutting-edge MND research has now been allocated, just two years into a five-year funding commitment. Work continues at pace to support MND researchers in submitting high-quality bids for open funding calls. Further information is available at the following link:

https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research

NHS England commissions specialised services to support people living with MND, as set out in the published service specification for specialised neurology services. The support provided includes the provision of multi-disciplinary care from specialist clinicians, including neurologists, specialist nurses, speech and language therapists, dietetics and nutrition support, and physiotherapy, depending on individual clinical need. The service specification for specialised neurology services is available at the following link:

https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf

In addition, NHS England commissions a specialised communication aid service known as Augmentative and Alternative Communication, as set out in the published service specification. This service supports and prioritises individuals with rapidly degenerative conditions, including MND. The service specification for Augmentative and Alternative Communication, is available at the following link:

https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/aac-serv-spec-jan-2016.pdf

Found: multiplex 1 0 Nerve compression 2 0 Peroneal nerve palsy 1 0 Motor neurone diseases Motor

Found: syndrome 1 0 Nerve compression 1 0 Peroneal nerve palsy 1 0 Motor neurone diseases Motor

Found: Guide Dogs Scotland • Headway • Inclusion Scotland • Lead Scotland • Leonard Che shire • Motor

Found: Carers of Additional Needs young people Evoc I Am Me Scotland Dyslexia Scotland MND Scotland (Motor

Found: Carers of Additional Needs young people Evoc I Am Me Scotland Dyslexia Scotland MND Scotland (Motor

Found: I was very moved to meet an advocate for motor neurone disease recently.

Found: dexterity to select number buttons, or live with lifelong or acquired conditions, such as cerebral palsy or motor