We hope you’ve been keeping well in lockdown. This is a difficult time for everyone, especially for those of us living with or affected by pseudomyxoma peritonei and other cancers of the appendix. Our online community and Buddies system continue to provide forums of support and understanding, and we hope to see everyone there.
Given the situation we find ourselves in, we wanted to ensure that everyone in our community receives the support they need from us. This is the next in our series of biweekly posts providing information on patient’s stories, politics, and healthcare updates.
Brand new Pseudomyxoma Survivor community on HealthUnlocked
We aim to provide as much support as possible and are active on lots of channels such as Twitter and Facebook as well as our website. Our Facebook group provides a private, secure place to share diagnoses, treatments and your experience of all things PMP – join up and share your story here. For those of you who don’t use Facebook, we have launched a brand new online community on HealthUnlocked to provide even more support through lockdown and beyond.
Our community on HealthUnlocked provides a new forum for emotional support and practical advice on PMP, appendix cancer or another peritoneal surface malignancy.
We provide advice on PMP diagnosis and treatment options and talk about our own experiences of PMP. Of course, the forum works best with more people and shared experiences so make sure to join our community and tell us something about yourself and your PMP journey – we’d love to hear your story!
Follow the link below to the new Pseudomxyoma Survivor community.
New cancer treatment hubs
As I’m sure some of you have experienced, cancer treatment pathways have been changed and often suspended because of the coronavirus pandemic. Treatments like chemotherapy are now much more dangerous because it is immunocompromising, meaning your body is less able to fight coronavirus.
The NHS is working tirelessly to provide the care we need, and the NHS Christie Hospital in Manchester, which provides specialist PMP treatment, will become the hub for cancer care in the region, and a similar hub is being set up in London.
Hospitals in the region are aiming to reduce the exposure of cancer patients to coronavirus by providing cancer treatment through The Christie’s two new coronavirus-free hubs.
All patients on active treatment or who have recently completed treatment can use the 24-hour hospital hotline – 0161 446 3658.
Junior Doctors from Hampshire Hospitals help form national guidance
Congratulations from us to Dr Matt Rose and Dr Emily Baldwin, who both work for the Hampshire Hospitals NHS Foundation Trust of which Basingstoke Hospital is a part. They noticed how in some COVID-19 patients the only sign of deterioration was a sudden increase in the amount of oxygen (O2) they needed. This led to it being brought to the attention of the Royal College of Physicians (RCP), with an amendment to the relevant national guidelines within days.
More on this on the Trust’s Facebook page.
Splenectomy patients in the UK
On Friday last, it was announced by NHS England and NHS Digital that Splenectomy patients should be all included on the Shielded Patient List, as they are considered extremely vulnerable.
There’s more information about this from fellow trustee Georgina on our website.
Patented Medicine Prices Review Board changes in Canada
The Canadian Organisation for Rare Disorders (CORD) has announced a series of webinars about the Patented Medicine Prices Review Board (PMPRB) changes which are going ahead.
More from them, including how to register for the webinars, on the CORD website.
Despite lockdown, we’re still involved in lobbying and guidance. I’m taking part in video calls with National Voices, lobbying with other patient groups for clarification on issues for UK patients. Georgina is a constant contributor to weekly meetings with both Cancer52 and with Public Health England ensuring that the issues we face as pseudomyxoma peritonei and appendix cancer patients are on the table and not overlooked.
Thank you for your continued strength and all your engagement with our online communities already — we really couldn’t be Pseudomyxoma Survivors without you.
Please stay safe and sound and we hope to see you online.
Our coronavirus resources are available here – https://www.pseudomyxomasurvivor.org/coronavirus-covid-19-update/
Please do keep an eye on the News section on our website.
We are open to support you during this crisis. If you need support, please do contact us via our contact page on the website. If you are feeling unwell or believe you may have undiagnosed pseudomyxoma peritonei, SEEK MEDICAL ADVICE. If you are unsure, please contact us and we will do our best to offer you advice.
Please note that our online shop is open with a restricted number of items available as we are shielding at home and getting to the post office to post ordered items is therefore difficult.