Prof. Penelope Schofield, Talk Topic: Understanding Lived Experiences of People with CUP: How can clinicians help? 📅 Thursday 19th October 2023 ⏰ 08:00 – 09:00 🎟 To register please email the-christie.cup
[email protected] 📍 MS Teams (link provided following registration).
The DRAFT NICE quality standard on suspected cancer update can be seen here for stakeholder comments by 18 Sep: https://www.nice.org.uk/guidance/indevelopment/gid-qs10176/consultation/html-content-7 The issue for CUP patients has always been around initial presentation (to GPs) with non site-specific symptoms and it is encouraging to see the espoused theory in the update: ‘If results of tests in primary care cannot establish the most
Read more
Will Quince MP, Minister for Health and Secondary Care, has taken over from Helen Whately. (He has already announced that he will be standing down at the next election.) As The Minister of State for Health and Secondary Care he is responsible for: NHS secondary care: o elective care recovery o hospital reconfigurations o special measures regime major diseases o
Read more
Yesterday the Specialised healthcare alliance (SHCA) launched a report entitled ‘Navigating the labyrinth: reducing delays to a rare disease diagnosis’. Whilst CUP is not, strictly speaking, a rare disease it is ‘less common’ and complex. This report makes useful recommendations for those with a Symptom Without a Name (SWAN)
The Secretary of State has just published his mandate for 2023 to NHS England. ‘ The priorities for improving cancer outcomes: Comment: Sunt facta verbis difficiliora
Confused about the Test Directory and how to get patients a genomic test? The Genomics Education Programme can tell you more
The NICE Surveillance Team have decided not to update the Guideline at the moment but to keep it under review. Their reasoning is shown here. They have however agreed one change which reflects the introduction of Whole Genome Sequencing in England in October 2022: Due to changes in practice, we will replace recommendation 1.2.2.9 that says not to use gene-expression-based
Read more
Our report and accounts for last year can be seen here For the long view visit the Charity Commission website – our number is 119380
In conjunction with SBK we have another online event on Tuesday 7 March (09:00-15:50). This is an opportunity to look at the implications of RDCs and WGS on the patient pathway. Speakers and topics are shown here on the SBK website.
NCRI are conducting a survey to help identify the research priorities for CUP. This is not limited to clinicians. Anyone with an interest in the next steps for CUP research in the UK is invited to complete the survey. Those outside the UK are most welcome to contribute as well. The survey can be found here until 3 Feb: https://ncri.checkboxonline.com/ncri-muocup-study-group—research-priorities-survey-