🚨 Today we've published a new paper which makes the case for including paid carer's leave in Economy NI's Employment Rights Bill and models the potential costings and economic benefits for Stormont and the UK Exchequer.

📑 Read the paper: carersuk.org/media/hwoi0kwi…

🧵 Thread 👇

As part of the #CarerPovertyCoalition , we are supporting a new petition calling for the urgent reform of Carer's Allowance to ensure it properly supports carers and puts an end to the devastating overpayments that carers are facing.

Find out more 👇

Are you based in #London & looking for an exciting volunteering opportuning? Become a Campaigns Volunteer!

You'll have the opportunity to speak to MPs and cllrs about important issues that affect people with #MND .

Read more here 👇 & please share.

jobs.mndassociation.org/vacancy/campai…

Deadline to become a trustee at SMK is tomorrow!

If you’d like to apply, please send a CV and covering letter to [email protected] using the subject line ‘Trustee application’.

Full details here: smk.org.uk/community-smk/…

Carers Allowance must be reformed.

We've launched a petition calling for urgent reform to ensure Carer’s Allowance will properly support unpaid carers and end the devastating impact overpayments has had on thousands of carers.

Sign our petition here: go.carersuk.org/4aNVUU3?utm_so…

Ministers under pressure to call an amnesty over carer's allowance scandal as new figures show more than 150,000 unpaid carers are repaying huge overpayment fines for minor rule breaches theguardian.com/society/2024/a… by me Josh Halliday Aletha Adu Haroon Siddique

Thanks to Chair of the APPG on rare conditions, Liz Twist MP for meeting with us to discuss the recent decision taken by NICE regarding tofersen.

We highlighted the precedent it could set for future precision medicines – both in treatment for #MND and other rare diseases.

Great to see the #ActToAdapt campaign, including work with Hull City Council highlighted in the MND Association Impact Report.

Everyone with #MND should be able to live in an accessible home, without delays or high costs.

Read the full 2023 annual report here👇
mndassociation.org/about-us/who-w…

We'd like to see an urgent review of the cost threshold NICE uses to judge whether new drugs should be approved for the NHS.

It’s appalling that people with MND face being denied what could be a life-changing treatment because of the outdated systems for approving medicine.

Reminder it’s the Petition Debate on Carers Allowance today Monday at 4:30pm

You can catch it here live on you tube
⬇️
youtube.com/watch?v=NZur4V…

Great to see the injustice of the situation around assessing tofersen in the headlines.

Read Daniel Boffey's full article via The Guardian below 👇
theguardian.com/society/2024/a…

An astonishing half a million unpaid carers in UK are not claiming Carer's Allowance ‼️

We urgently need the next govt to address strict eligibility requirements like earning & age thresholds to properly #SupportMNDCarers and all people with #MND .
theguardian.com/society/2024/a…

Looking forward to meeting any Northern friends of MND campaigning in York :)

We'll be attending the MND Association Regional Roadshows taking place across the country and it'd be great to meet some of you there!

Come along if you'd like to discover more about campaigning & the future direction of the Association.

Register here ⬇️
mndassociation.org/get-involved/v…

MSPs from across parties have joined us to hear MND Scotland CEO, Rachel Maitland, discuss the importance of good social care for people with #MND .

Huge thanks to Bob Doris for hosting tonight’s event, helping raise awareness of #MND and the need for better social care for people impacted by the disease.

Becoming a Campaigns Volunteer is a brilliant way to support people living with and affected by #MND .

Join the fight and find out more below🧡

Thousands of unpaid carers are being forced to repay vast sums due to minor breaches of the Carer's Allowance rules.

The #SupportMNDCarers campaign has long been calling for urgent reform of this benefit, particularly removing the limited eligibility rules.

At 17 years old, Ryan's Dad died of MND. Ryan's partner, Shayl, created an information board in her workplace at a GP surgery.

“Many members of the public are drawn to the board and it starts conversations.”

What a great way to spread awareness , keep it up Shayl💙

Join our board! SMK is looking to recruit up to three new trustees.

If you’d like to apply, please send a CV and covering letter to [email protected] using the subject line ‘Trustee application’ by Tuesday 30 April.

Full details here: smk.org.uk/community-smk/…