Find out about how you can get involved
#Act to Adapt
Every person with MND should be able to live in a safe and accessible home, without long delays and high costs.
The Act to Adapt campaign was launched to push for more accessible homes and a fairer faster system for delivering home adaptations for people with MND. Click here to find out more and access an interactive map where you can see how well your council is doing.
On 16 November, the Campaigns team hosted an online event for councillors. Thank you to everyone who emailed an invitation to their councillor.
North Norfolk and East Suffolk were represented at the meeting, and councillors from South Norfolk and Broadland expressed support although they were not able to attend on the night. We have already welcomed some positive changes in Broadland and South Norfolk.
At the event, introduced by Andrew Lewer MBE MP, councillors heard from policy experts and people living with, and affected by, MND about the reality of the current housing adaptations process.
If you would like to ask your councillors to meet with you to discuss what they can do to improve the local services for people with MND please use the link on the main MND Association website. The campaigns team provide excellent support and the branch Campaigns Contact, Sue, is happy to join you or set up an online link if this is helpful. Email email@example.com f you would like discuss ways in which you might get involved with your local council.
#United to End MND - Success!
The United to End MND campaign, supported by people with MND, neurologists and a coalition of the MND Association, MND Scotland and My Name’5 Doddie Foundation, launched two years ago.
The aim of the campaign was to ask the Government to invest £50 million over five years into targeted MND research.
The coalation sought and secured meetings with a number of Ministers, MPs and civil servants to discuss MND research and investment, and to lay out our plans. Campaigners worked to keep the issue in the media spotlight, and contacted their own MPs to garner support.
In March 2021, former rugby player Doddie Weir launched the #United2EndMND research petition, at its close on 6 July 2021 it had received 110,700 signatures.
The petitions committee scheduled a Westminster Hall debate on MND research in Parliament, on 12 July 2021, led by SNP MP Martin Day. Twelve politicians from across the political spectrum made clear that a boost to MND research made practical economic and humanitarian sense. Five of the MPs who contributed to the debate shared their personal connection to MND. You can read more about the debate here.
On July 12, a Spending Review bid was submitted to the Government, urging them to ring-fence £50 million over five years in the spending review being delivered by the Chancellor on 27 October 2021.
On 21 September, a group of campaigners attended Parliament to meet with MPs before heading to Downing Street where two high profile sports personalities, former Leeds Rhinos player Rob Burrow and former professional footballer Stephen Darby, delivered a patient letter. The patient letter signed by around 400 hundred people with MND – including several living in Norfolk, asked the Government for increased targeted funding into motor neurone disease research. You can read more about the day and read the letter here.
On Sunday 14 November, the Government showed it had listened and announced a £50 million investment over five years into targeted MND research – exactly what the coalition had campaigned for. The £50m is part of a wider investment of £375million into research into neurodegenerative diseases. Thank you to everyone who supported our campaign!
Prime Minister Boris Johnson congratulated the campaign coalition and the Sunday Express, which adopted the campaign under the banner ‘Fund The Fight To Cure MND’, on a ‘fantastic campaign’. Secretary of State for Health and Social Care Sajid Javid, who met the campaigners at Westminster in September, described the campaign as ‘hugely important’.
The All-Party Parliamentary Group on MND held an online meeting on 1 December to discuss the announcement. You can read more about the APPG, watch the meeting and read the transcript here.
You can read more about United to End MND and the next steps in the campaign to ensure the funding is targeted to where it can be most effective as we work towards a world free from MND.
#Scrap 6 Months - Success!
On Thursday 8 July, after three years of campaigning, Justin Tomlinson announced that the current Special Rules for Terminal Illness which fast-track benefit applications for those with a terminal diagnosis of six months is to be replaced with a new 12-month end of life definition.
The move will ensure that people in the final year of their life will receive vital financial support more quickly than they do at present and at the highest rate through revised Special Rules. It will remove the long waits, the need to attend face-to-face assessments and work coaching for terminally ill people.
Under the updated rules clinicians still have discretion and will be supported by a realistic and straightforward definition, which aligns with current NHS practice.
Ministers plan to implement the 12-month end-of-life approach across five DWP benefits, beginning with Universal Credit and Employment Support Allowance next year and Attendance Allowance, Disability Living Allowance and Personal Independence Payment when parliamentary time allows.
The MND Association will maintain pressure on the Government to ensure the rules are changed at the earliest possible opportunity.
The Government didn't address our call for the end of a maximum 3-year award length to Special Rules claims in their announcement, we had asked for replacement with a lifetime award. We have been told this will be addressed in the upcoming Health and Disability Green Paper, as part of broader proposals for people with severe conditions.
Local press coverage:
You can view the News on the Association Website at https://www.mndassociation.org/scrap-6-months-campaign-victory/
Campaigning takes time as the timeline for the 3 year campaign demonstrates - but we don’t give up!
- 21 June 2018: MND Association & Marie Curie launch the Scrap 6 Month campaign (Sue Heal (SH) and others spoke with Norwich Councillors about the launch of the campaign whilst standing outside Norwich City Hall on 21 June, Global MND Awareness Day)
- July 2018: The Association supported Madeleine Moon, former MP who was personally affected by MND, to raise the issue in Parliament
- November 2018: 52 MPs show their support by attending our parliamentary drop-in with Marie Curie
- December 2018: Launch of a petition to demonstrate to the Government the strong support for a change in the law – the aim was to reach 17,000 signatures – the same number of people who had died whilst waiting for a decision on their benefits between 2013 and 2018.
- January 2019: Daily Express joins the fight with a front-page story and we launch a petition
- June 2019: 31 clinicians publicly support the campaign in a letter to the Telegraph
- July 3 2019: Parliamentary drop-in event hosted by the MND Association, Marie Curie and the All-Party Parliamentary Group on Terminal Illness. SH and Martin Burnell attended. SH met local MPs Peter Aldous and Brandon Lewis, and shortly afterwards met with Clive Lewis and Norman Lamb in their constituency offices.
- July 9 2019: All-Party Parliamentary Group on MND met to discuss the Scrap6Months campaign.
- July 11 2019: Success! The Government launches a review into the benefits system for terminally ill people
- August 7 2019: 55,000 supporters sign the petition, launched in December, was delivered to Downing Street
- December 2019: over 800 candidates in the general election back the campaign and 130 are elected as MPs (SH wrote to all Norfolk and Waveney candidates – about 40. SH with Jane Lewis and Malcolm Chubbock met the three newly elected MPs Duncan Baker, Jerome Mayhew and James Wild soon after they were elected - they have all given their active support to the campaign.)
- March 2020: people with MND share their experiences as part of the Government’s review
- July 2020- Feb 2021: With the support of the Association, Jessica Morden MP and others continue to raise the issue in Parliament - we are grateful to our local MPs who asked questions in Parliament on our behalf
- June 30 2021: Northern Ireland announces the change
- July 8 2021: Government announces it will scrap 6 months
Keith Harris’s Rob Burrow Leeds Marathon 14 May 2023
Keith is running the Leeds Marathon on 14 May 2023!
Keith will be raising money for the Norfolk, Norwich and Waveney Branch.
Other ways to donate
Donating to our branch is now easier than ever. With our new Text to Donate function you can support our branch at the click of a button.
Simply text MND4NNW to 70085 to send an automatic donation of £5. If you wish to donate more, add a space and the amount you wish to give e.g. ‘MND4NNW 10’.
Texts cost £5 plus one standard rate message.
Your donations mean that we can continue to support local people living with MND. Around 70 people are typically living with this devastating disease in our branch area at any one time and need our help.
Every donation is truly appreciated by all members of our branch. Thank you.
Volunteer with us
The branch is run entirely by volunteers. We would be very interested in hearing from anyone who would like to join us. We would really like to welcome new committee members, fundraisers, Association Visitors (AVs) or Care Service Navigators. Even if you can only help for a few hours at occasional events we would love to hear from you. At the moment our greatest need is for AVs and a Branch Secretary, see details below.
If you are interested in getting involved please contact firstname.lastname@example.org or telephone 01604 800620.
Role of Committee Members
We need volunteers to join our branch committee and help us continue making a difference locally for those affected by MND. The main responsibilities include attendance at committee meetings that take place every 2 months. At the meetings we receive reports from the Chairman, Secretary, Treasurer and Campaigns Contact and, crucially, make decisions on requests for funding. Arrangements are made for forthcoming events. Issues arising from the MND Association volunteering e-bulletin released each month are discussed and local implications considered.
Our vision to create a world free from motor neurone disease. Join our strong volunteering community today and be part of something bigger. All we need is you, your skills and your time. Wherever you are, however many hours you have to give, those living with motor neurone disease will feel the impact of your support.
We particularly need
- some new ideas on fundraising
- person to arrange and coordinate bucket collections
- new ideas for raising awareness of MND
- possibility of organising an annual Walk to D’Feet
- Association Visitors. For an explanation of what an Association Visitor does and how to find out more click here
- maybe you have skills that you think might help even though they are not listed, please talk with us!
Contact Us if you are interested in joining us or would like to attend a committee meeting to get a feel for what the role might involve.