Asked by: Victoria Collins (Liberal Democrat - Harpenden and Berkhamsted)
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 provide additional support for families affected by members with Duchenne muscular dystrophy.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as Duchenne Muscular Dystrophy. Under the England Rare Diseases Action Plan 2025, we remain focused on delivering against the four key priorities set out in the UK Rare Diseases Framework. The 2025 England Rare Diseases Action Plan was published on 28 February 2025 and is available at the following link:
https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025
We know that people living with rare conditions, and their families and carers, often struggle to access mental health and psychological support. Mental health services should be offered based on need and should not exclude anyone because of a particular physical health or neurological diagnosis. The NHS Genomics Education Programme has this year published new resources on rare diseases and mental health, aimed at healthcare professionals. It has also developed a communications tool to help healthcare professionals with sensitive conversations, to ensure that patients and families feel supported throughout the diagnosis of a rare condition.
Many people struggle to access reliable information on rare diseases, and we recognise the important role patient support groups can play in developing reliable and easy to access information. In this year’s action plan we have set out the steps we are taking to support organisations to get the information they produce accredited under the Patient Information Forum’s trusted information creator scheme.
To enhance specialist care, NHS England is supporting multi-system disorder clinics to reduce appointments and ease care coordination for families.
Mentions:
1: Stephen Kinnock (Lab - Aberafan Maesteg) improving the lives of people living with rare diseases. - Speech Link
2: Stephen Kinnock (Lab - Aberafan Maesteg) diseases action plan on 28 February, which is otherwise known as Rare Disease Day. - Speech Link
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve the care of people with Addison's disease including (a) providing clearer information and (b) ensuring timely access to (i) treatment and (ii) support.
Answered by Andrew Gwynne
The Government is committed to improving the lives of those living with rare diseases, such as Addison’s disease. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, which include increasing awareness of rare diseases among healthcare professionals and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England action plan in 2025.
The National Institute for Health and Care Excellence’s (NICE) Clinical Knowledge Summaries (CKS) provide primary care practitioners with a readily accessible summary of the current evidence base and practical advice on best practice. Currently, the NICE has a CKS on Addison’s disease. This includes when to suspect Addison’s disease, a management section, and a self-care advice section to support both patients and family members or carers. Further information on the NICE’s CKS on Addison’s disease is available at the following link:
https://cks.nice.org.uk/topics/addisons-disease/management/
NHS England has previously published a National Patient Safety Alert on Steroid Emergency Card to support the early recognition and treatment of an adrenal crisis in adults. These alerts require action to be taken by healthcare providers, to reduce the risk of death or disability. Further information on the alert is available at the following link:
Mentions:
1: Jim Shannon (DUP - Strangford) developing medicines for rare diseases and, of course, looking at rare diseases overall. - Speech Link
2: Karin Smyth (Lab - Bristol South) Although rare diseases are rare individually, their impacts are far-reaching. - Speech Link
Found: • Monitor and contribute to the implementation of the Scottish Plan for Rare Diseases in Scotland
Mentions:
1: Luke Evans (Con - Hinckley and Bosworth) securing equity of treatment for rare diseases. - Speech Link
2: Jim Shannon (DUP - Strangford) securing equity of treatment for rare diseases. - Speech Link
3: Peter Dowd (Lab - Bootle) I know the UK rare diseases framework, and the England rare diseases action plan in my case, has been - Speech Link
4: Andrew Gwynne (LAB - Gorton and Denton) Importantly, he highlights rare diseases. - Speech Link
Written Evidence Mar. 13 2025
Inquiry: Community Mental Health ServicesFound: We are also calling for the UK government to publish a Rare Diseases Action Plan for 2025, which calls
Asked by: Sam Rowlands (Welsh Conservative Party - North Wales)
Question
What is the Welsh Government doing to support disabled children and their families?
Answered by Minister for Children and Social Care
The Welsh Government is committed to the provision of high-quality services and effective support for the wellbeing of disabled children and their families.
The Sustainable Social Services Third Sector Grant is provided to support carers, children, and young people with disabilities. This grant funds early intervention and preventative activity.
Since 2022, the Welsh Government has allocated £42 million to support unpaid carers. This includes the Carers Support Fund, providing £4.5 million from 2022 to 2025 for small grants and financial advice. Additionally, health and social care professionals receive training to better recognise and support unpaid carers.
The Neurodivergence Improvement Programme, backed by £12 million over three years, aims to streamline referrals, reduce waiting times, and improve support services. The Welsh Government also invests in speech and language development through the ‘Talk with Me’ programme, which supports the speech, language, and communication development of all children.
The Healthy Child Wales Programme delivers a universal health visiting programme to all families, improving health outcomes for disabled children. The SWAN Clinic continues to provide multidisciplinary services for patients with potential rare diseases, ensuring they receive comprehensive care.
For children with complex health needs, the Welsh Government emphasises the importance of multi-agency collaboration through the Children’s Continuing Care guidance. This ensures long-term care for disabled children, with agencies working together to meet their needs.
Finally, the Additional Learning Needs and Education Tribunal (Wales) Act 2018 requires local health boards to support the coordination and delivery of ALN services. This supports disabled children and young people to achieve their full potential throughout their school life.
Sep. 20 2024
Source Page: Child Rights and Wellbeing Impact Assessment (CRWIA) Progress Report on Scotland's Action Plan for Rare Diseases (2024)Found: Report on Scotland's Action Plan for Rare Diseases (2024) Disclaimer This draft
Feb. 11 2025
Source Page: Specialised services for infectious diseases (adults)Found: Service name Specialised Services for Infectious Diseases (Adult) 2.