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Written Question
Motor Neurone Disease: Diagnosis
Wednesday 13th September 2023

Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)

Question to the Department of Health and Social Care:

To ask His Majesty's Government what measures they are taking to ensure that healthcare professionals receive updated training and resources for the accurate and timely diagnosis of motor neurone disease.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

All health professionals involved in assessing, caring for and treating people with motor neurone disease (MND) should have sufficient and appropriate training and competence. Individual employers are responsible for ensuring their medical and nursing staff are trained and competent to carry out their role and to invest in the future of their staff through providing continuing professional development (CPD) funding.

To supplement local employer investment for CPD, the Government announced in September 2019 a £210 million funding boost to provide every nurse, midwife, and allied health professional (AHP) working in the National Health Service in England with a personal budget of £1,000 over three years to 2022/23.

The NHS Long Term Workforce Plan, published on 30 June 2023, sets out NHS England’s commitment to continue national CPD funding for nurses, midwives and AHPs. The operation of this scheme will be kept under review, to ensure subsequent funding is in line with workforce growth and inflation, well-targeted and achieving the desired outcomes.

To support the diagnosis of MND, the National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of MND (NG42).

NHS England commissions specialised neurology services for the assessment, diagnosis and care of patients with a range of neurological conditions, including MND, as set out in the published service specification. A copy of this specification is attached.

NHS England currently has a National Transformation Programme for Neurosciences, which is undertaking considerable work to review and develop optimal care pathways, including early diagnosis and model of care for patients with a range of neurological conditions, including MND.

Additionally, the National Neurosciences Advisory Group, a collaboration of specialist clinicians, allied health professionals and charity representatives, developed a clinical pathway for MND, published in June 2023. A copy of the pathway is attached.

The pathway is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.

NHS England does not currently monitor or evaluate rates of diagnosis of neurological conditions, including MND, nor does it have metrics in place to assess diagnostic rates.


Written Question
Motor Neurone Disease: Research
Wednesday 13th September 2023

Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)

Question to the Department of Health and Social Care:

To ask His Majesty's Government what is their current assessment of coordination of motor neurone disease research via the MND Collaborative Partnership, co-funded by the medical research charity LifeArc and the motor neurone disease patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The MND Collaborative Partnership is monitored by the funding partners via quarterly reporting. The Partnership was launched to bring researchers together to speed the development of effective treatments for motor neurone disease. The Government, via the Medical Research Council and the National Institute for Health and Care Research, is co-funding the £4.25 million collaborative alongside LifeArc, My Name’5 Doddie, MND Association and MND Scotland. The Government is contributing a further £2 million to focus on gathering and analysing existing data.


Written Question
Motor Neurone Disease: Diagnosis
Wednesday 13th September 2023

Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)

Question to the Department of Health and Social Care:

To ask His Majesty's Government (1) what is their assessment of the effectiveness of their efforts to enhance early motor neurone disease diagnosis, specifically in terms of reducing diagnostic delays, (2) how they are monitoring and evaluating the effectiveness of their efforts to enhance motor neurone disease diagnosis, and (3) what metrics they are using to assess progress in this area.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

All health professionals involved in assessing, caring for and treating people with motor neurone disease (MND) should have sufficient and appropriate training and competence. Individual employers are responsible for ensuring their medical and nursing staff are trained and competent to carry out their role and to invest in the future of their staff through providing continuing professional development (CPD) funding.

To supplement local employer investment for CPD, the Government announced in September 2019 a £210 million funding boost to provide every nurse, midwife, and allied health professional (AHP) working in the National Health Service in England with a personal budget of £1,000 over three years to 2022/23.

The NHS Long Term Workforce Plan, published on 30 June 2023, sets out NHS England’s commitment to continue national CPD funding for nurses, midwives and AHPs. The operation of this scheme will be kept under review, to ensure subsequent funding is in line with workforce growth and inflation, well-targeted and achieving the desired outcomes.

To support the diagnosis of MND, the National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of MND (NG42).

NHS England commissions specialised neurology services for the assessment, diagnosis and care of patients with a range of neurological conditions, including MND, as set out in the published service specification. A copy of this specification is attached.

NHS England currently has a National Transformation Programme for Neurosciences, which is undertaking considerable work to review and develop optimal care pathways, including early diagnosis and model of care for patients with a range of neurological conditions, including MND.

Additionally, the National Neurosciences Advisory Group, a collaboration of specialist clinicians, allied health professionals and charity representatives, developed a clinical pathway for MND, published in June 2023. A copy of the pathway is attached.

The pathway is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.

NHS England does not currently monitor or evaluate rates of diagnosis of neurological conditions, including MND, nor does it have metrics in place to assess diagnostic rates.


Parliamentary Research
Debate on football and dementia - CDP-2023-0185
Sep. 08 2023

Found: occur when the parts of the brain that manage coordination and muscle movements are damaged. 7 • Motor


Select Committee
MND Association
WIN0004 - Preparing for the winter

Written Evidence Sep. 08 2023

Inquiry: Preparing for the winter
Inquiry Status: Closed
Committee: Energy Security and Net Zero Committee

Found: MND Association (WIN0004) About MND and the MND Association Few conditions are as devastating as motor


Select Committee
Phil Newby
ADY0255 - Assisted dying/assisted suicide

Written Evidence Sep. 07 2023

Inquiry: Assisted dying/assisted suicide
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: submitted Phil Newby (ADY0255) I am a 52-year-old father of two, living through the later stages of Motor


Select Committee
ADY0246 - Assisted dying/assisted suicide

Written Evidence Sep. 07 2023

Inquiry: Assisted dying/assisted suicide
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: submitted by Anonymous (ADY0246) I am writing as an individual who was diagnosed with a rare form of Motor


Select Committee
Mrs Caroline Villar
ADY0089 - Assisted dying/assisted suicide

Written Evidence Sep. 07 2023

Inquiry: Assisted dying/assisted suicide
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: Palliative care simply does not work for some extreme situations such as motor neurone disease or


Select Committee
Claire Macdonald
ADY0032 - Assisted dying/assisted suicide

Written Evidence Sep. 07 2023

Inquiry: Assisted dying/assisted suicide
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: indignity nor restore loss of function – it has little to offer to those with degenerative diseases like Motor


Select Committee
Professor Jane Calvert-Lee
ADY0031 - Assisted dying/assisted suicide

Written Evidence Sep. 07 2023

Inquiry: Assisted dying/assisted suicide
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: Their plans for Geoff (who had terminal motor neurone disease) to die at Dignitas were nearly