Together with our amazing campaigners we have been able to make a difference to the lives of people with motor neurone disease, their families and carers. Here are some of our campaigning successes over the last few years.
Scrap 6 Months (2019-2022)
Scrap 6 Months
Working in partnership with Marie Curie, we campaigned for reform to the Special Rules for Terminal Illness process, which provides fast-track access to benefits for people living with a terminal illness.
The Social Security (End of Life) Bill completed all stages in the House of Commons on 8 September 2022 and the reforms have now been fully implemented for all applicable benefits across England, Wales and Northern Ireland.
As a result, the “special rules” process, which provides a fast-track allowing people living with a terminal illness to access disability benefits more quickly, will now be open to people judged to have 12 months or less to live, rather than only six months under the previous rules. This will mean that more people living with MND and other terminal conditions will be able to access financial support quickly and easily, without going through lengthy assessment processes.
Supporting MND Carers through COVID-19 (2020)
Supporting MND Carers through COVID-19
We called on the Government to relieve the immediate pressures being faced by MND unpaid carers throughout the COVID-19 crisis. Due to the coronavirus outbreak, unpaid carers have been put under increasing strain and this has only been exasperated by the reduction and disruption of the health and social care system and the difficulties that social distancing requirements pose.
People with MND are among some of the most vulnerable to COVID-19 and unpaid MND carers continue to provide a vital but often invisible frontline role to ensure those they care for continue to remain safe. We asked our supporters to join our campaign by signing our open letter and by sharing their experiences of caring for their loved ones with MND. We were amazed at the support that this campaign received and so we want to thank all 3709 of you who signed our open letter.
Get MND on the List (2020)
Get MND on the List
At the height of the COVID19 crisis, the MND Association launched the #GetMNDOnTheList campaign. The government created a list of extremely vulnerable persons designed to better shield and protect those with certain conditions during the COVID-19 outbreak. Those on the list were granted certain protective measures such as priority access to supermarket deliveries. This list did not include people living with MND.
Following weeks of tireless campaigning and extensive engagement with the office of the deputy Chief Medical Officer (CMO), we were deeply disappointed to announce that the Government did not change its position and would not add MND to the list of conditions clinically extremely vulnerable to COVID-19. We wanted to thank each and every one of our advocates which included well over 5200 supporters, over 120 MPs, nearly 40 clinicians and several high-profile celebrities who joined together to try to persuade the Government to #GetMNDonTheList.
The clinically extremely vulnerable list will be discontinued from August 1st (in England and Northern Ireland) and August 16th (in Wales). From those dates onwards, people will no longer be advised by their Government to shield, and it will no longer be possible to register as clinically extremely vulnerable. It is vital that people with MND are able to stay safe and are protected from COVID-19. We can all help make that happen.
Summer of Action on PIP (2018)
Summer of Action on PIP
In summer 2018, as a member of the Disability Benefits Consortium (DBC), our supporters took action to make MPs aware of the problems disabled people including people with MND, face when accessing Personal Independence Payment (PIP) - a benefit for people of working age to help with the extra costs of disability. A number of charities engaged in this campaign.
23 meetings with MPs took place between May 2018 and October 2018, and supporters discussed issues with PIP and highlighted the Special Rules for Terminal Illness (SRTI) process, and our Scrap 6 Months campaign. All 23 MPs agreed to write to either Sarah Newton MP (Minister for Disabled People, Health and Work), Esther McVey MP (then Work and Pensions Secretary) or raise the issue of SRTI verbally.
Currently, the process for claiming PIP is overwhelmingly complex, involving long forms and face-to-face assessments, and the system is too slow to respond. This is resulting in some people waiting a long time for their benefit to arrive, or being refused the benefit entirely.
The best way to improve the system is for ALL people with MND to claim PIP under the SRTI. Claiming under SRTI using the DS1500 form (signed by a clinician), will ensure claims are dealt with quickly, more sensitively and with greater chance of success of receiving the maximum level of entitlement in a timely way.
We created a campaign guide to support volunteers to meet with their MP to help improve the system.
General Election 2017
General Election 2017
The announcement of a snap general election provided an opportunity to make the MND voice heard and help politicians understand one of the key issues around financial support that affects many people living with MND.
Ahead of the election, we launched a campaign urging parliamentary candidates to commit to scrapping benefit reassessments for people with MND, if they are elected.
An incredible 700 supporters took action and 607 candidates pledged their support. Thank you to everyone who took part.
We launched the campaign because reassessing people with MND for disability benefits is pointless. The reassessments are unnecessary, cause avoidable stress and anxiety for people with MND, and are a waste of public money. The public campaign on this issue has closed for now. However, we will continue to lobby the Government until this policy is implemented.
The last Government announced in October 2016 that people with ‘severe and lifelong conditions’ in the support group of Employment and Support Allowance (ESA) - a benefit paid to people whose ability to work is limited by ill health or disability - would be exempt from reassessments for that benefit. This is still yet to happen and we want to make sure the new Government upholds this commitment.
NICE Guideline on MND (2016)
NICE Guideline on MND
In February 2016, the National Institute for Health and Care Excellence (NICE) published a clinical guideline on MND. This followed four years of campaigning by the Association and our supporters.
We hope the guideline will lead to improved care for people with MND and their carers, both by empowering people with MND to seek the care recommended by NICE and to advise health and social care commissioners and providers on best practice in MND care.
NICE has published four documents relating to the guideline:
- The full guideline [319 pages, PDF (2.20MB)]
- The short guideline [47 pages, PDF (189KB)]
- Appendices to the full guidance, including research recommendations [468 pages, PDF (4.62MB)]
- Responses to comments received during the consultation [187 pages, PDF (1.76MB)]
- Our full submission in response to the draft guideline can be read here.
Finanical impact on MND (2016)
Financial impact on MND
To understand more about the financial impact of living with MND we partnered with Demos (an independent think tank based in London) to research this important issue.
We asked people living with MND and people who have lost someone to MND to complete a survey so we can gain a better understanding of how we can best offer support and minimise costs.
We received over 800 responses all together and would like to thank everyone that took part in this important research. We will be publishing our findings later this year and using them to inform our work with key stakeholders in health, social care, local government and national politicians.
MND Won't Wait (2016)
MND Won't Wait
In March 2016, we launched a campaign for the elections to the Welsh Assembly - MND Won't Wait. With your help, we asked candidates to be champions for MND in the Assembly and in their constituency.
To help them understand the impact of MND, we highlighted the importance of timely and accurate diagnosis in our MND Won't Wait briefing. An amazing 58 candidates and 21 Assembly members supported the campaign.
We've had some great statements of support from politicians of all parties:
“It is scandalous that 1 in 5 people with MND in Wales waited longer than a year between first visiting their GP and seeing a neurologist for diagnosis. This must change.”
“Hapus i gefnogi MND! Happy to support MND!”
Now the elections are over, we'll be asking the new Welsh Government and the Health Boards to work with us to improve the process of diagnosis. We'll also be going back to the newly elected AM’s who said they’d champion MND and talk to them about how they can help in the Assembly as well as in the community.
Remember also to keep in touch with our Welsh campaigns on Twitter.
Every Breath Counts (2016)
Every Breath Counts
In March 2016, we launched a campaign for the elections to the Northern Ireland Assembly - Every Breath Counts. With your help, we asked candidates to be champions for MND in the Assembly and in their constituency.
To help them understand the impact of MND, we highlighted the vital need for respiratory care in our Every Breath Counts briefing.
And what results! An amazing 57 candidates and 34 Assembly members have supported the campaign and we wanted to thank you for all you've done to get the message out there.
At present there is limited capacity in Northern Ireland to provide this care in the community, for example supporting the use of non-invasive ventilation (NIV) devices.
To demonstrate the importance of respiratory care, check out the story of Eoin Larkin.
In his own words and those of his wife Claire, the family tell the story of how respiratory care and NIV have made a huge difference to his quality of life, six years after first being diagnosed. But they also look at how more community support and specially trained service providers could have made things better.
We’ve had some great statements of support from politicians of all parties:
“Having witnessed the devastating effect of motor neurone disease I wholeheartedly lend my unreserved support for this well considered and meaningful campaign.”
“Pleased to support the #everybreath campaign calling for more community respiratory care for people with #MND in NI.”
We’re asking the new Northern Ireland Executive and the Health & Social Care Board and Trusts to work with us on enhancing respiratory care for people with MND,
We’re also going back to the newly elected MLA’s who said they’d champion MND and talk to them about how they can help in the Assembly as well as in their constituency.
Remember also to keep in touch with our Northern Ireland campaigns on Twitter.
Sign the MND Charter (2015)
Sign the MND Charter
People with MND and their carers often have to explain what MND is and what their needs are. This lack of knowledge and understanding, particularly amongst decision-makers and health and social care professionals, can lead to people with MND experiencing problems accessing services that are responsive to their needs.
The MND Charter was launched to help change this. It sets out what good care looks like for people with MND and their carers in five points. From June 2012 - May 2015, we encouraged individuals and organisations to sign up to the Charter as a way of demonstrating their understanding of the disease and championing the rights of those living with it.
The final number of signatures collected was 33,630. These signatures were presented to the then new Government at Downing Street shortly after the General Election in 2015.
During the campaign to raise awareness and collect signatures of support for the MND Charter, countless prominent people, politicians, Royal Colleges and other key national organisations signed up in support.
In 2013, the MND Charter was adopted and translated by several MND/ALS organisations around the world – including Turkey, Spain, Mexico, Italy, Australia, America, Colombia and Peru. This led to the global ‘Family of ALS/MND Charters’ - an international campaign to mark MND Global Awareness Day 2013.
Download our leaflet explaining the MND Charter’s incredible journey and key milestones since it launched in 2012.
“The success of the Charter campaign lies in the thousands and thousands of signatures we have received, and the strength of the statements made by our members, politicians, professionals and many others who support our Charter. The importance of our Charter is undeniable. We want all decision makers, current and future, to be clear that access to the right care at the right time, as set out in our Charter, can transform lives.”Chris James, Director of External Affairs for the MND Association
Following the national success of this campaign, we have taken the MND Charter to a local level to raise awareness of MND and encourage local councils to Champion The Charter which will help to ensure that people living with MND receive the right care, in the right place, at the right time.
Don't Let Me Die Without A Voice
Don't Let Me Die Without A Voice
Ahead of the 2015 general election, we launched our manifesto and campaign to improve access to communication equipment for people with MND.
2,200 supporters emailed or met with their parliamentary candidates urging them to take action on this issue. Almost 500 parliamentary candidates pledged their support, 150 of which are current MPs.
As a result of our campaigning, NHS England made a commitment to redouble their efforts and issued unreserved apologies to people with MND for the problems they have faced in accessing communication equipment.
We also attended meetings with the Health Minister as well as senior officials at NHS England and we briefed the All Party Parliamentary Group (APPG) on MND who launched an inquiry on this issue and published its findings in the ‘Condemned To Silence’ report.
Our campaigning led to us being a finalist in the category ‘voluntary sector campaign of the year’ in The Public Affairs Awards 2015.
Overall, progress in the right direction is being made on access to communication equipment for people with MND.
Although our public campaign is now closed, we continue to meet with NHS England to ensure progress is being made and they deliver better support for people with MND.
More than 80% of people living with MND will experience some loss of speech before they die. If you are affected and have experience of accessing communication equipment, please get in touch. We are keen to hear of good news stories, as well as any issues that may exist, and would welcome any experiences encountered via email to [email protected].
Charlie Fletcher, who is living with MND, talks about why having a voice is important to her.
In March 2015, as part of our 'Don't Let Me Die Without A Voice' campaign, we asked our supporters to post a #SelfieAgainstSilence on social media, with a message demanding then Health Minister Norman Lamb MP take immediate action on access to communication equipment for people with MND.
In less than 24 hours, the #SelfieAgainstSilence action achieved its objective! The Health Minister saw all the personal messages, and as a direct result, contacted the Chair of the All Party Parliamentary Group (APPG) on MND, Madeleine Moon MP, asking to meet with us so we could discuss the campaign.