SHCA

You can read the letter here: shca.info/shca-genetic-allia…

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

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⌛️ shca.info/wp-content/uploads…

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

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

Variation: 60% of respondents said there is a postcode lottery when it comes to mental health support, with access varying based on where people live in the UK

Delays: 78% of respondents said that the average wait to access mental health support is six months or longer; only 3% said support is accessible in six weeks or less Quality: 62% of respondents described the quality of mental health support available as ‘poor’

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 🧵 shca.info/wp-content/uploads…

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⬇️ shca.info/wp-content/uploads…

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

The SHCA will be campaigning to see these recommendations implemented. Find out more about our work on our website: shca.info

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

Recommendation 9: The NHS in England and the devolved nations should collect and publish data to determine whether mental health support for patients seeking a rare disease diagnosis is available equitably across the UK

Recommendation 8: As part of the integration of mental health support into rare disease care pathways, the NHS in England and the devolved nations should ensure that mental health support is offered to patients and their families whilst seeking a diagnosis

Recommendation 7: NHS England should update the online directory for medical conditions to include links to registered charities for each rare disease, to help patients reach the correct support and enable healthcare professionals to signpost patients to the right place

Recommendation 6: The NHS in England and the devolved nations, and relevant medical schools, should ensure that healthcare professionals are trained not only in how to recognise rare disease symptoms, but how to engage with patients and families with sensitivity