Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support earlier diagnosis of Multiple System Atrophy among healthcare professionals.

Answered by Preet Kaur Gill

The Government is committed to improving the lives of those living with rare diseases, including multiple system atrophy (MSA), under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework, including getting a diagnosis faster and improving awareness among health professionals.

Earlier diagnosis of MSA relies on clinical guidance, improving recognition in primary care, and ensuring timely access to specialist movement disorder expertise. The National Institute for Health and Care Excellence’s guideline Suspected neurological conditions: recognition and referral, reference code NG127, provides primary care clinicians with clear criteria for identifying early features of progressive neurological disorders, including atypical parkinsonian syndromes such as MSA. The guideline sets out when urgent or routine referral to neurology is appropriate, supporting earlier recognition and reducing diagnostic delay in general practice.

To ensure patients with suspected complex movement disorders are assessed promptly, the revised NHS England Specialised Neurology Services (Adults) service specification, from August 2025, requires all tertiary centres to provide specialised movement disorder clinics and to operate within networked integrated neurology systems. These networks strengthen links between primary care, district general hospitals, and specialist centres, enabling clinicians to access specialist advice and refer patients earlier when MSA or other atypical parkinsonian syndromes are suspected.

NHS England’s Neurology Transformation Programme has also developed an Integrated Neurology Care Model and toolkit, which emphasise structured pathways, care coordination, and improved communication across the system. These measures support earlier diagnosis by ensuring patients with concerning movement disorder symptoms reach the appropriate specialist team without unnecessary delay.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department plans to publish an impact assessment on the removal of the statutory requirement for councils of governors in NHS foundation trusts, particularly for those from marginalised communities.

Answered by Karin Smyth - Minister of State (Department of Health and Social Care)

Until such time as the Health Bill receives Royal Assent, the statutory requirements for councils of governors (CoGs) remain. All National Health Service foundation trusts (FTs) will be expected to have put in place effective arrangements for community engagement by the time the bill provisions to remove CoGs have commenced.

To ensure the effectiveness of these arrangements, they will be tested as part of ongoing assurance processes, including provider capability assessments, Care Quality Commission well-led assessments, and the assessment process for advanced foundation trust status.

If arrangements are found to be ineffective, there are a range of escalation approaches available. The appropriate intervention would depend on the circumstances and whether there were wider failures at the FT, but it could involve finding the trust in breach of the conditions of its provider licence and requiring the FT to develop and deliver a plan to address the issue.

The Department has published impact assessments for the Health Bill, which include an assessment of reform to the foundation trust model. This is available at the following link:

https://publications.parliament.uk/pa/bills/cbill/59-02/0009/ia_Structural_measures_to_ICBs.pdf

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he plans to take where an NHS foundation trust is found to have ineffective arrangements in place for local engagement.

Answered by Karin Smyth - Minister of State (Department of Health and Social Care)

Until such time as the Health Bill receives Royal Assent, the statutory requirements for councils of governors (CoGs) remain. All National Health Service foundation trusts (FTs) will be expected to have put in place effective arrangements for community engagement by the time the bill provisions to remove CoGs have commenced.

To ensure the effectiveness of these arrangements, they will be tested as part of ongoing assurance processes, including provider capability assessments, Care Quality Commission well-led assessments, and the assessment process for advanced foundation trust status.

If arrangements are found to be ineffective, there are a range of escalation approaches available. The appropriate intervention would depend on the circumstances and whether there were wider failures at the FT, but it could involve finding the trust in breach of the conditions of its provider licence and requiring the FT to develop and deliver a plan to address the issue.

The Department has published impact assessments for the Health Bill, which include an assessment of reform to the foundation trust model. This is available at the following link:

https://publications.parliament.uk/pa/bills/cbill/59-02/0009/ia_Structural_measures_to_ICBs.pdf

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of NHS Trust community engagement following the removal of the statutory requirement for Councils of Governors in the Ten Year Health Plan.

Answered by Karin Smyth - Minister of State (Department of Health and Social Care)

Until such time as the Health Bill receives Royal Assent, the statutory requirements for councils of governors (CoGs) remain. All National Health Service foundation trusts (FTs) will be expected to have put in place effective arrangements for community engagement by the time the bill provisions to remove CoGs have commenced.

To ensure the effectiveness of these arrangements, they will be tested as part of ongoing assurance processes, including provider capability assessments, Care Quality Commission well-led assessments, and the assessment process for advanced foundation trust status.

If arrangements are found to be ineffective, there are a range of escalation approaches available. The appropriate intervention would depend on the circumstances and whether there were wider failures at the FT, but it could involve finding the trust in breach of the conditions of its provider licence and requiring the FT to develop and deliver a plan to address the issue.

The Department has published impact assessments for the Health Bill, which include an assessment of reform to the foundation trust model. This is available at the following link:

https://publications.parliament.uk/pa/bills/cbill/59-02/0009/ia_Structural_measures_to_ICBs.pdf

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what funding his Department has allocated to research into Multiple System Atrophy.

Answered by Preet Kaur Gill

The Department funds research through the National Institute for Health and Care Research (NIHR) and has funded a range of research through the NIHR infrastructure policy programmes, including research into multiple system atrophy (MSA). This research includes testing new treatments that could slow down or stop disease progression, developing better ways to diagnose the disease earlier and more accurately, and understanding how health and care services work so that people receive better support after diagnosis and improved end-of-life care.

MSA is a rare neurodegenerative condition and is therefore frequently studied alongside related atypical Parkinsonian syndromes and broader neurodegenerative disorders. In the last five financial years, from 2020/21 to 2024/25, through the NIHR, the Department committed £1.96 million for new research projects into MSA. This is alongside wider support to NIHR research infrastructure.

Found: Kind regards Sarah Owen MP Chair, Women and Equalities Committee From Baroness Merron

Found: present Florence Eshalomi, in the chair Maya Ellis Mr Will Forster Joe Powell Sarah Smith Ms Sarah Owen

Found: Equalities Cabinet Office 70 Whitehall London SW1A 2AS Sarah Owen

Found: Cabinet Office 70 Whitehall London, SW1A 2AS Sarah Owen

Found: Department for Science, Innovation and Technology 22-26 Whitehall London SW1A 2EG www.gov.uk/dsit Sarah Owen

Found: OFFICIAL-SENSITIVE OFFICIAL-SENSITIVE Sarah Owen

Found: Watch the meeting Members present: Sarah Owen (Chair); Alex Brewer; Rosie Duffield; Kim Leadbeater;

Found: Current membership Sarah Owen (Labour; Luton North) (Chair) Alex Brewer (Liberal Democrat; North East

Found: Current membership Sarah Owen (Labour; Luton North) (Chair) Alex Brewer (Liberal Democrat; North East

Found: following members of the Women and Equalities Committee were also present (Standing Order No. 137A): Sarah Owen

Found: Watch the meeting Members present: Sarah Owen (Chair); Alex Brewer; Rosie Duffield; Dame Nia Griffith

Found:

Found: value of Hospitality (£) Sir Chris Bryant Nil Return Nil Return Nil Return Nil Return Nil Return Sarah Owen

Found: gifts only) Sir Chris Bryant Nil Return Nil Return Nil Return Nil Return Nil Return Nil Return Sarah Owen

Found:

Found: Refused planning permissionRefusalPlanning Appeals - FullTransferredNot LinkedMrs Sarah Owen-HughesHamilton

Found: Refused planning permissionRefusalPlanning Appeals - FullTransferredNot LinkedMrs Sarah Owen-HughesHamilton

Found: Parliamentary Under-Secretary of State in the Department for Digital, Culture, Media and Sport ** Sarah Owen

Found: Parliamentary Under-Secretary of State in the Department for Digital, Culture, Media and Sport ** Sarah Owen