@John_Dabell Thank you John, for your visually engaging and verbally stimulating messages.
And thank you for stressing the basic human need for hydration - whether you’re a long term survivor, or a person nearing end of life.
Hydration and nutrition are part of our humanity and dignity.
What do you do when you are thirsty? You have a drink, unless you are nil by mouth. Today is the hottest May day on record in the UK, but when you cannot swallow, hydration becomes a logistical exercise instead of a basic human reflex. I cannot just grab a bottle of water or sit in a café and cool down. Every drop of fluid has to be syringed directly into my stomach through a tube and believe me, that is not easy when you are out and about. You need clean hands, clean equipment, time and privacy - somewhere dignified to stop and hydrate without feeling like a medical procedure has hijacked your day in public...and to avoid people staring! People see the sunshine. They do not see the calculations behind survival.
Hot weather for most people means inconvenience but for us nil by mouthers, it can become dangerous very quickly. The reality of head and neck cancer is that even something as basic as quenching thirst is no longer simple.
People see the smile but not the engineering to keep it in place. It is bolted together with grit, humour, pain, hard work and the bloody-minded refusal to collapse.
THIS is how to articulate the argument against the continuing unconscionable actions of the Israeli genocidal apartheid state.
My thanks to Dr Myriam Francois for her words of truth.
🎥 TikTok - https://t.co/X5gVIajJau
I took 1.7 million photos over 6 days to catch this photo of a commercial jet in front of the sun.
The moment it happened, TWO floating prominences were visible, making this not just my best aircraft transit photo, but one of the luckiest of my career! Videos of the transit 👇
NHS BRIBED THE WRONG DOCTOR
Dr Kim Holt (@drkimholt) was the designated doctor for children in care at St Ann's Hospital in Haringey. In 2007, she and three colleagues sent a formal written warning to Great Ormond Street Hospital (@GreatOrmondSt) management. Staff shortages. Poor record-keeping. A disaster waiting to happen.
The response was not to fix the clinic. It was to remove Dr Holt from her post and place her on four years of special leave.
When she refused to go quietly, the hospital offered her £80,000 with a gagging order attached. She turned it down. After Baby P died, the offer went up to £120,000. She turned that down too.
Six months after her warnings were ignored, a locum with no experience of the clinic examined Baby Peter Connelly. The signs of abuse were there. They were missed. Two days later, the child was dead.
The NHS Trust that ran the clinic eventually apologised. In writing. Four years later.
Dr Holt went back to work. She framed the apology letter and hung it on her wall.
She then founded Patients First to support the next generation of @NHS whistleblowers, because she knew there would be one.
There always is.
Sources: @guardian@BBCNews@thetimes@drkimholt
Our current first-past-the-post voting system is hugely undemocratic, allowing a political party to secure a massive majority of seats on a minority vote.
We need to introduce proportional representation now to ensure every voice is heard and every vote counts.
@MattHancock
In 2019,MattHancock stood before 100+ Gosport families and, when challenged about whistleblowers, stumbled through: “err… err…” before claiming NHS staff could now turn to protected “Speak Out” guardians wearing lanyards.
We are still waiting for implementation after hundreds died at Gosport in an environment where whistleblowers were ignored, silenced, or sidelined. The documents speak for themselves. Read the facts 👇🏻 #whistleblowers bullied into silence — by the very people who are implicated in this tragedy.
https://t.co/AZIgQu3uoV
Four years ago today, I received the phone call that changed the trajectory of my life.
I was told I wasn’t cancer free after all, and that my breast cancer had metastasised to my liver, lungs, lymph nodes and pelvic bone, as well as a new grade 2 BC tumour on my skin. I was given three years and beyond devastated.
After a weekend of shock and fear, I refused to accept his prognosis. I chose not to see that oncologist again and instead went looking for thrivers. Someone told me early on that living in fear isn’t living and I knew I had to hold onto that.
A week later, Maya (who’d just turned 15) and I got on a plane to Paris, the first place she chose, and that became the start of our many adventures, a way of saying yes to life ❤️
Knowing time is limited has meant fast forwarding a living list full of hopes and dreams, something to focus and look forward to between scans, results and treatments
It’s been four years of navigating the many side effects, some really debilitating, and uncertainty, whilst somehow finding a way to live alongside it all, and I’m beyond so grateful for how I’ve responded to treatment so far.
It’s also brought so many new and unexpected things into my life.
I never imagined campaigning would become such a big part of it, from being a patient advocate, fighting for access to life extending drugs like Enhertu, better care for MBC, and the right for terminally ill adults to have choice at the end of life. I’d never been in Parliament before my diagnosis but now I’ve lost count!
I co founded Brighton & Hove Secondary Sisters (thanks to Secondary Sisters) which is a wonderfully supportive group and now even has its own exercise classes!
I’ve met so many incredible, inspiring women in the community, but have heartbreaking lost far too many before their time 💔
Life feels more heightened, the small things brighter and moments more meaningful. My family and friends have embraced it all with me, having adventures and making memories I’ll treasure forever. I’ve found more joy than I ever thought possible living with this diagnosis.
Thank you for all the love and support, from friends old and new, to total strangers, it’s means the world❤️
So four years on I’m still here, and hoping to have many more adventures from my ever growing living list! #cancerversary #LivingWithCancer #Stage4NeedsMore
Important programme for anyone interested in care of dying people, tonight on Swedish national TV channel SVT1 https://t.co/Hy1sc12V0y
Exposing Liverpool Care Pathway like practices presently happening in nursing homes.
#peolc@LorraineNorton@EOLCampaigner@Amanda_M_Hunter
Rabbi Dovid Feldman:
“we are here to bring the Jewish voice in support of having Israel accountable for these crimes taking place in Gaza and Palestine. What is going on this genocide is unacceptable. This is against humanity and Jewish people. We are embarrassed”
Patient Perspectives: Integrated Palliative Care for Heart Failure Services
In an NIHR-funded, Marie Curie supported research project at Queen's University Belfast, researchers set out to understand gaps in palliative care integration for heart failure services.
Two project patient and public involvement representatives have authored thought-provoking blogs on their experiences; experiences that have helped shape the project throughout.
Read them here:
https://t.co/9ej1OO3Kbt
https://t.co/KYQMzSy9Jz
Congratulations to QUB team and @MarieCurieEOLC on such an important project!
Palliative care should not be just for cancer patients. And cancer patients can also have heart failure, sometimes caused or aggravated by anti-cancer treatments.
Patient Perspectives: Integrated Palliative Care for Heart Failure Services
In an NIHR-funded, Marie Curie supported research project at Queen's University Belfast, researchers set out to understand gaps in palliative care integration for heart failure services.
Two project patient and public involvement representatives have authored thought-provoking blogs on their experiences; experiences that have helped shape the project throughout.
Read them here:
https://t.co/9ej1OO3Kbt
https://t.co/KYQMzSy9Jz