SHCA retweeted
The Government recently announced that @NHSEngland will be reintegrated into @DHSCgovuk.
We know that the announcement raised a number of questions and concerns.
Together with @TheSHCA, @GeneticAll_UK have written to @wesstreeting seeking clarity around next steps.
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ALT Reintegration of NHS England into the Department of Health and Social Care - news item text
The SHCA, alongside @GeneticAll_UK and @NeuroAlliance, have published a letter to @NHSEngland + @DHSCgovuk, calling for urgent clarity on how integrating NHS England into the Department of Health and Social Care will affect care for people living with rare and complex conditions
You can read the letter here: shca.info/shca-genetic-allia…
The SHCA and @GeneticAll_UK are calling for the UK Rare Diseases Framework to be refreshed, renewed and recharged after 2026 🇬🇧
Check out the findings of our report: shca.info/wp-content/uploads…
We are publishing a new report on the important issue of reducing delays to a rare disease diagnosis, analysing progress made over the past year across the UK.
Our message is clear – when it comes to diagnosis, we cannot afford to wait⌛️
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SHCA retweeted
We contributed to this report, highlighting inadequate NHS mental health support for people living with muscle wasting conditions.
We back SHCA's call for better care. Need support now? 📞0800 652 6352 (Mon-Thur 10am-2pm).
Browse our support groups: rb.gy/orkrej
The SHCA has published findings from a recent survey of our members on mental health support for people living with a rare or complex condition. Our survey shows this is a vital, unmet need 🧵
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SHCA retweeted
Massively important findings 👇
The SHCA has published findings from a recent survey of our members on mental health support for people living with a rare or complex condition. Our survey shows this is a vital, unmet need 🧵
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The SHCA has published findings from a recent survey of our members on mental health support for people living with a rare or complex condition. Our survey shows this is a vital, unmet need 🧵
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Strain on the charity sector: 91% of charities supporting people with rare or complex conditions are under increased strain since the COVID-19 pandemic, as they are having to offer mental health support which should be typically provided by the NHS
You can find the full findings on our website, set out in a briefing with five recommendations for policymakers, linked above. The SHCA will continue to campaign on this issue of mental health support as a clear unmet need #SHCA #MentalHealth #RareDisease
The SHCA and @GeneticAll_UK have partnered to publish a manifesto for rare diseases – we are calling on the next government to act decisively to prioritise the needs of people living with a rare or complex condition across the UK
Read our manifesto here⬇️
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The Government has published their new Action Plan for England to mark this #RareDiseaseDay - the SHCA is pleased to see new commitments made for diagnosis and health inequalities for rare conditions as two key areas we are campaigning on🧬Click below to read the new Plan in full
🧬 On #RareDiseaseDay, we're taking further action to improve the lives of people with rare conditions.
This includes:
🧬 research to help speed up diagnosis and treatment
🧬 specialist care as close to home as possible
Read our action plan: gov.uk/government/publicatio…
🧵Today the SHCA has published a new report, 'Navigating the labyrinth', all about how delays to rare disease diagnoses affects patients and their families. You can read the full report here:
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Recommendation 10: NHS England should carry out an assessment of learnings from the implementation of the Inherited White Matter Disorders (IWMDS) Diagnostic and Management Service, to identify whether the service could be developed into a model for use in other rare diseases
The SHCA will be campaigning to see these recommendations implemented. Find out more about our work on our website: shca.info