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Today, our Chief Executive @TanyaCurry2 has written to NICE to urge it to evaluate the drug tofersen as a highly specialised treatment. NICE's current plan to assess tofersen through its standard route is devastating and unacceptable. We fear it will deny people with the SOD-1

'When you have a terminal illness like #MND you really need to cling hard onto any hope you can'. Eleanor Dalley writes for the The Telegraph regarding the disappointing decision taken by NICE on tofersen. Thank you for sharing your story, Eleanor. telegraph.co.uk/health-fitness…

Agenda for Change has lost sight of our value. After 20 years, three quarters of our members are on the two lowest pay bands possible for registered professionals. Nursing needs a fresh start and a new place in health care: bit.ly/4aqrqHq #FairPayForNursing

Agenda for Change has lost sight of our value. After 20 years, three quarters of our members are on the two lowest pay bands possible for registered professionals. Nursing needs a fresh start and a new place in health care: bit.ly/4aqrqHq #FairPayForNursing

So many nursing staff are depleted to the point where they are ready to leave the profession behind. But patients and nursing staff should not have to keep suffering for politicians to pay attention and take action. We need investment in our profession - and we need it now.

For too long nursing staff have been overworked, underpaid and pushed to breaking point. Our manifesto makes demands to turn that around. When you invest in nursing, you invest in patients, you invest in society. The public values nursing. We ask prospective politicians to do

“In a world full of adversity, we must dare to dream” We’ve seen an incredible reaction to the There’s Only One Rob Burrow documentary that aired last night on BBC One. You can still watch it on iPlayer. We highly recommend doing so! 💙 #OneRobBurrow

The Prime Minister is wrong. RCN members REJECTED last year's pay offer and are still in dispute. Worst still, they haven't even received an offer for this year, 3 months past the deadline. Nursing staff need negotiations to restart immediately after the election. #SkyDebate

Staff shortages make work environments unsafe, for everyone.   The relative risk of death increases by 3% each day a patient experiences a nurse staffing shortage on a hospital ward.  Tell prospective MPs why they must support our manifesto demands ➡️ bit.ly/4c6U3tS

At the Neuroscience Institute, our researchers are working tirelessly to find a cure for MND and do even more to support people living with MND, and their families. #GlobalMNDAwarenessDay

Pressures on nursing staff are unsustainable.   63% of our members say stress is the main reason they feel unwell at work. Tell prospective MPs why they must support our manifesto demands. ➡️ bit.ly/4c6U3tS

The Strikes (Minimum Service Levels) Act must be revoked.   Nursing staff must have the right to advocate for themselves and their patients through lawful industrial action. Tell prospective MPs why they must support our manifesto demands. ➡️ bit.ly/4c6U3tS

Half of nursing students in England have considered quitting, survey finds theguardian.com/society/articl…

The next generation of nurses are considering walking away before they graduate - this is a tragedy. The new Prime Minister must act urgently to turn around a failing NHS workforce plan. We need government-funded degrees and proper maintenance support.

If your daily to-do list and job description don’t match, your pay band likely doesn’t reflect the work you do. This issue is widespread, and we’ve told NHS Staff Council and the UK government this can’t be ignored – find out more: bit.ly/3V0p5NW

**BIOZOON UK - NEW NHS GUIDELINES 2024** Thank you all for your patience. We have been working closely with SLT's, IPC and MDSO's from NHS Trusts across the UK and have finalised our "User Guidelines" for Biozoon AIR with Flavour®. Please see the link to our copy of the

Participants still needed! We are working to improve delivery of psychological care in MND and need your help. We want to speak with our MDT colleagues who have worked alongside psychologists to learn about the role and potential value of having psychology in the team.

🆕 | Burnout, low staffing levels and increasing patient need, are forcing staff to quit early, not long after registration. With more staff leaving and fewer joining, this is a perfect storm which threatens patient care. bit.ly/3UKdpP0

I’m thrilled to say that I’ve finished writing the book. Take Care comes out 27th of Feb 2025. I’m looking forward to sharing our story with you all next year. You can pre-order a copy from the link in my bio. Wishing you and your loved ones a very happy Christmas x

📢 The APPG on Motor Neurone Disease has issued a statement on challenges faced by people with SOD1 MND - 2% of the MND population - in accessing ground-breaking treatment, tofersen, through an Early Access Programme. Read more: mndassociation.org/media/latest-n…