Publications
Explore our quarterly meeting minutes, public letters, consultation responses and reports.
Quarterly meeting minutes
The SHCA meets four times a year to discuss health news and our ongoing work, and to hear from a guest speaker. Here you can read the minutes from our quarterly meetings.
Governance
Reports and briefings
Consultation responses
The SHCA submits evidence to consultations run by the Government and the NHS; you can read our responses here.
Public letters
The SHCA writes to politicians and policymakers to raise key issues for our members. Here you can read letters we have sent and received.
2024
2023
2022
2021
2020
2019
2018
2017
2016
2015
2024
SHCA and Genetic Alliance – Manifesto for rare diseasesSHCA survey: unmet mental health needs of people living with a rare or complex conditionA guide to specialised commissioning in 2024-25Measuring progress one year on – Navigating the labyrinth: reducing delays to a rare disease diagnosisValuing rarity: Assessing the impact of the NICE methods review
2023
A guide to specialised commissioning in 2023/24Specialised commissioning webinar summary – Raising standards and tackling variation (March 2023)Specialised commissioning webinar summary – Local leadership and collaboration (April 2023)Navigating the labyrinth: reducing delays to a rare disease diagnosisSpecialised commissioning webinar summary – Strengthening research and innovation (June 2023)Strengthening the patient voice in NICE’s decision-makingRare diseases, common inequalities: bringing rare diseases into the health inequalities agenda
2019
SHCA position statement on European Reference Networks (ERNs) following Brexit – February 2019SHCA spring 2019 survey – July 2019SHCA Bridging the gap- lessons from divergence in decision-taking on rare diseases across the UK – November 2019SHCA position paper on the NICE review – November 2019SHCA position paper on the NICE review. Summary – November 2019
2018
2011
2010