Fundraising cold water challenge – daily dip for Dave!
Join us on October 12th by doing a cold-water challenge wherever you are and however you can to raise awareness and money for neuroendocrine cancer. More information: Daily Dip 4 Dave – Neuroendocrine Cancer UK
PERT
PERT info and webinars
NCUK has collaborated with charity partners to provide 2 PERT webinars – held Tuesday 17th and Wednesday 18th September: see PCUK HCP events page for details
PERT shortages continue – and are likely to do so until at least 2026. We are part of a charities collaborative that advocates and works with suppliers, the DHSC and National Medicines Management Teams to work towards solutions: our News page will carry regular updates.
PERT Surveys
According to our community survey 67% of those with neuroendocrine cancer have experienced difficulty in getting PERT on 1 or more occasions – approximately 40% have been left with no supply at least once: with no alternative offered (or indeed available).
Our joint charities collaborative survey of HCPs found that a third of the neuroendocrine cancer specialist centres report that 75% of patients with NC are experiencing difficulties . . .We would like to thank those of you who took time to respond.
This issue is not going away and though may ease in 2026 – with factory new build (Creon), demand for PERT is also increasing with no current plans or even scoping (by national medicines management team) to address this.
SUPPORT
Peer Support Groups
A reminder of the regular Peer Support Meetings, which our community members feel are vital to their well-being: and would like to give a special mention to CNS Hannah Bradbury at Nottingham for her work in initiating and supporting a new group. This group’s first meeting attracted 29 attendees, who gave very positive feedback, highlighting this often-overlooked mode of support for patients.
All groups, and their meetings, are listed on our Events Calendar
Patient Education Webinars
We would also like to thank all UKINETs who have taken part in our monthly community webinars, they have given their time and shared their expertise – which has been very much appreciated by those who have attended.
We are in the process of arranging our 2025 calendar – and would like to encourage those who may not have yet taken part to let us know if they are interested.
Counselling and group therapy programmes
We offer free to access counselling support for those affected by neuroendocrine cancer – this service has received referrals that have, at times, exceeded capacity – causing us to pause referrals not once but twice in the last 12 months. We have negotiated additional capacity – but would also like to highlight the addition of expert-facilitated group therapy programmes – which will run in both Spring and Autumn of 2025. These programmes have received excellent feedback from participants – who have said the benefit has extended well beyond programme completion, improving their well-being. Contact Support Service Lead Nikie for further details and information on what is available for your patients, and their loved ones.
NEW RESOURCES
Our co-produced Newly Diagnosed Booklet is now available online or hard copy – this resource, alongside wallet cards, can be ordered online here
Over the next few weeks and months, we will also be adding site-specific web-guides – with printable summary info sheets – to our website. These can be found here
