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.

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.