Tag: support

Biffa joins with Simon Community to help fight homelessness

Leading sustainable waste management company Biffa is launching a partnership with Simon  Community Scotland (SCS) to tackle homelessness in the country.

SCS is a Scottish charity that provides  help and support to homeless people via their street teams, drop in support and advice centres, and  24-hour helpline. SCS work across Glasgow, Edinburgh and Central Scotland.  

The partnership with Biffa will support the services that SCS provides as well as raising awareness for  the charity.

Biffa is sponsoring the cost of the helpline and street team throughout the month of  October to give advice and support to those in need. On average, the helpline receives 500 to 600 calls  per month. On the streets 140 Biffa vehicles will also carry the SCS logo and helpline number as they  complete their rounds in Scotland.  

SCS are committed to eliminating homelessness and firmly believe that everyone should have a safe  space to live and access the support they need.  

Gavin Money, the regional manager at Biffa, commented: “This is a really positive, socially-engaged  organisation that I am excited to be a part of with Biffa. The reality is our collection teams are on the  streets every day and come across people that need support, and we want to be able to do as much  as we can to help.

“Our partnership with SCS will allow us to educate our staff, volunteer and make a  difference to people’s lives.” 

Biffa has worked hard to raise awareness of the dangers of people sleeping in bins, issuing a call to action on waste management companies to make their bins harder to access, as well as commissioning  research with the Open University and the Chartered Institution of Wastes Management to find out the extent of the issue in the sector. Biffa introduced its own approach to the issue by implementing warning stickers, locks and even trialling human detection technology.

The collaboration with SCS is  part of Biffa’s continued support to tackle the issue and eradicate homelessness.  

In 2020 – 2021, the Scottish government recorded 42,000 people in homeless households with 25% of  these households’ containing children, despite rooms and housing offered during the pandemic  reducing applications for housing. With the lockdown rules ending, this figure is likely to increase to  pre-pandemic levels. 

Murray Easton, Head of Fundraising & Communications at Simon Community Scotland, said:  “Everyone at SCS is delighted to be working in partnership with Biffa. Our street teams in Edinburgh  and Glasgow are out every single day, connecting with people who are sleeping rough or at risk of  sleeping rough. We provide advice, support to access services and some on-street services. 

“Our partners at Biffa are also out on the streets every day, making this partnership  feel incredibly natural and we’re excited about how we can work together to increase awareness of  the issue, change and ultimately save lives.

We really appreciate Biffa’s support – their teams will be  on the ground helping with our helpline the week commencing with world homeless day on 10th  October.” 

You can find out more about the work Simon Community Scotland are doing here:  https://www.simonscotland.org/, or you can ring their helpline on 0800 027 7466.

ELREC launches new BAME RECAP project

ELREC have launched a new project to support people from BAME communities affected by Covid-19. A brief launch event took place at the ELREC meeting room on Monday (4 October). 

The BAME RECAP will work towards restoring the livelihoods of BAME communities affected by the COVID-19 pandemic in Edinburgh and the Lothian.  

The Global Majority Fund, financed by Comic Relief in partnership with the National Emergencies Trust (NET), supports this project. In Scotland, CRER is an Intermediary Partner for Comic Relief’s Global Majority Fund. 

CRER’s Yasmin Luqman said: “We are delighted to act as an Intermediary Partner of The Global Majority Fund and to make grants available to support BME community organisations like ELREC to continue delivering services to communities facing racial inequality who have been impacted by the COVID-19 pandemic and lockdowns.

“This fund is also focussed on creating a positive impact with and for communities facing racial inequality across Scotland. The Global Majority Fund, financed by Comic Relief in partnership with the National Emergencies Trust (NET), supports this project”.

Lothian MSP Foysol Choudhury MBE attended the launch event as a chief guest. He said ‘’ I would like thanks to CRER and funders for providing the grants for the BME communities aftermath of the Covid-19. It will help create a positive impact and improve the livelihood of the affected communities.’’  

The BAME RECAP project coordinator Mizan Rahman hosted the launch event and explained that a wide range of support is available for the Black Asian Minority Ethnic (BAME) community.

Tailor-made support and advice services freely available at ELREC. Specialised advocacy support is also available for people with ‘no recourse to public funds’.

He said that the project will address mental health and wellbeing issues by facilitating various activities over the year.  

To access support and services, anyone living across Edinburgh and Lothian can contact the project team by WhatsApp +447392663851 or email: bamerecap@elrec.org.uk.

More information about the project can be found on social media @bamerecap.  

Unpaid carers to receive double additional payment

Tens of thousands of unpaid carers will receive a double payment of the Carer’s Allowance Supplement this winter under legislation passed unanimously by the Scottish Parliament last night.

Recognising the additional pressures unpaid carers face as a result of the pandemic, the December payment of the Carer’s Allowance Supplement will be doubled to £462.80, benefitting more than 91,000 people.

This extra investment, forecast to be £21 million, will be the second time the Scottish Government has doubled a Carer’s Allowance Supplement payment.

The Carer’s Allowance Supplement (Scotland) Bill will also give Ministers powers to provide eligible carers with additional financial support in future if the need arises.

Social Security Minister Ben Macpherson said: “We introduced the Carer’s Allowance Supplement in September 2018 to address the fact that Carer’s Allowance was the lowest of all working age benefits. The £230 payment is in addition to the Carers Allowance in recognition of the role carers play in society.

“In recognition of the additional pressures caused by the pandemic, tens of thousands of unpaid carers will now receive another additional payment of more than £230 through our Carer’s Allowance Supplement this winter. This additional payment means that this year carers in Scotland will get £694.20 more in support than carers in the rest of the UK.

“We also made a double payment last year, so over the past two years we have invested over £120 million from our own budget to support around 91,000 unpaid carers. The Carer’s Allowance Supplement is unique in the UK and is one of seven new benefits we have introduced.

“The Scottish Government will always consider if additional payments are needed in the future, bearing in mind the broad range of support we provide across society and taking account of our limited tax and borrowing powers.

Sebastian Fischer, Chief Executive of VOCAL, which supports and empowers unpaid carers in Edinburgh said:  “As we emerge from the pandemic, the Coronavirus Carers’ Allowance Supplement is a welcome measure and we are delighted that the Bill has passed. This will support carers who have faced, and continue to face, enormous challenges due to Covid-19.

“Unpaid carers have propped up the health and social care sector, and it is vital that they are recognised in ways that deliver real positive impact. We look forward to seeing further measures from our new government which value the role of carers as equal partners.”

Scottish Government publishes education recovery strategy

‘Missed opportunity’, says EIS

Plans to help Scotland’s education system continue to recover from the COVID-19 pandemic have been published by the Scottish Government – but Scotland’s biggest teaching union the EIS has dismissed the plans as a ‘missed opportunity’ and say Scotland must show more ambition.

Created with input from across the sector, including young people, the Education Recovery strategy outlines how almost £500 million has been used to support learners and staff across the country.

The publication also sets out how the Scottish Government will continue to provide ongoing support to the sector.

This includes:

  • further support for learners who are sitting exams in 2022
  • access to in-school mental health and wellbeing support that young people need, including counselling services
  • recruiting 3,500 additional teachers and 500 support staff over this parliamentary term
  • expanding funded early learning and childcare for children aged 1 and 2, starting with low-income households
  • committing £1 billion to tackle the poverty related attainment gap and support education recovery

Speaking after visiting the site of the new £47.2 million Wallyford Secondary Learning Facility, Ms Somerville said: “Our collaborative and ambitious programme of support to aid recovery right across our education sector has been underway for many months.

“Schools are still dealing with the pandemic and we will continue to support them through these challenging time. However, as a Government we must also be focused on recovery. Supporting children and young people remains our top priority, and almost £500 million of additional funding has already been committed during 2020/21 and 2021/22 as part of education recovery. Of this, £240m is to recruit extra staff to ensure resilience and to provide additional support for learners and teachers.

“Other initiatives will play a crucial role, such as the provision of free school breakfasts and lunches all year round for all children in P1-7, digital devices for every child, abolition of fees for instrumental music tuition, removal of core curriculum charges, and our extended early learning and childcare offer.

“Pupils sitting exams in spring 2022 will be offered a package of support, which will include online revision classes and targeted help for those who need it most. At the heart of all of this is our children and young people, who we will ensure have the opportunities they need to fulfil their potential in school and beyond.”

Read Education Recovery: Key Actions and Next Steps.

Commenting following the publication of the plan, EIS General Secretary Larry Flanagan said: “Clearly, there are significant elements within the plan to be welcomed – not least the commitment to increasing teacher numbers, the creation of more permanent posts to tackle the scandal of 10% of current teaching posts being temporary, and the reduction in class contact time to 21 hours.

“Overall, however, the plan largely restates existing workstreams and fails to promote a single big initiative such as a reduction in class sizes, which would catalyse an education recovery programme and bring immediate benefits to Scotland’s children and young people.

“Smaller class sizes, even on a limited basis as a starting point, such as P2 and P3 or S1 and S2, would mean more teacher time per pupil and assist with targeted interventions where the pandemic has impacted disproportionately on children’s lives. As a country, we need to be bolder in our ambitions for our youth.”

Responding to the Education Recovery Plan, a spokesperson for the Scottish Children’s Services Coalition commented: “While we welcome the commitment to help Scotland’s education system continue to recover from the COVID-19 pandemic through this plan, greater action is needed to improve the mental health and wellbeing of our young people.

“Even prior to the pandemic cases of poor mental health were at unprecedented levels and there are a growing number of vulnerable children who cannot access adequate support. At the end June 2021, 1,686 children and young people had been waiting over a year for treatment from specialist child and adolescent mental health services (CAMHS), double that of the previous year.

“Increased funding to deliver new and enhanced community-based services, including counselling services, as outlined in the plan is welcomed. This however comes on the back of funding restrictions to these services. We must look to greatly increased investment in an expanded range of mental health services as part of a national crusade to address the impacts of the pandemic.

“We have for some time raised concerns over a potential lost generation of vulnerable children and young people, whose mental health is being impacted even further by the COVID-19 pandemic.  It is more important than ever that children can access the support they need, when they need it, irrespective of where they live.

“This is a crisis we can overcome, but it will require a similar energy and commitment to that demonstrated for COVID-19 if we are to achieve this and prevent many young people giving up on their futures.”

Edinburgh charities benefit from Community Connect support

Edinburgh School Uniform Bank has successfully secured £15,000 thanks to Scotmid Co-operative’s Community Connect award scheme.

Edinburgh School Uniform Bank, which distributes school uniform to families in Edinburgh who are facing financial hardship, was awarded the funding after being shortlisted by the convenience retailer as one of three good causes and charities in the East of Scotland to receive financial support from an £25,000 pot.

Other recipients of funding in the East include Canine Concern Scotland Trust, which provides therapy dogs for patients in hospital after a stroke or suffering traumatic brain injuries, and Scottish Huntington’s Association (see below).

Julia Grindley, Chair of the Board of Trustees at Edinburgh School Uniform Bank (above) said: “We are absolutely delighted to receive a £15,000 Scotmid Community Connect Award.

“This award will allow us to provide school uniform and warm jackets to over 600 local children. This funding will make a huge difference to their confidence and their sense of belonging, as well as keeping them cosy through the winter.”

Since Scotmid’s Community Connect launched in 2017, more than £460,000 has been awarded to 42 good cause groups, enabling key projects to come to life in local areas.

Shirley MacGillivray, Head of Communities and Membership at Scotmid, said: “Community Connect is one of the main ways we can support those communities that we serve and we are delighted to provide Edinburgh School Uniform Bank with this funding, which will help them to continue providing vital services.

“Times remain challenging for many people; being able to help improve the lives of others across the country is one of the very reasons we exist.”

Scottish Huntington’s Association has successfully secured £5,000 thanks to Scotmid Co-operative’s Community Connect award scheme.

The Association, which provides 1-1 advice, peer group work sessions, youth mental health services for children with a parent living with Huntington’s Disease and have a 50% chance themselves of inheriting the condition, was awarded the funding after being shortlisted by the convenience retailer as one of three causes and charities in the East of Scotland to receive financial support from an £25,000 pot.

Gemma Powell, Senior Fundraiser from Scottish Huntington’s Association said: “We are absolutely delighted to receive a £5,000 Scotmid Community Connect Award towards Scottish Huntington’s Association Youth Service.

“This funding will help us bring back our annual youth camp which is attended by young people growing up in families impacted by Huntington’s disease across Scotland.

“This camp offers young people the chance to make and catch up with friends, share experiences, learn more about Huntington’s disease and, for many, enjoy a break from caring responsibilities. We’re so grateful to Scotmid and their members.”

Mel Hughes, CEO of Canine Concern Scotland Trust said: “We are absolutely delighted to receive a £5,000 Scotmid Community Connect Award.

“This award will allow us to develop our Therapet® Visiting Service in the NHS Lothian area, starting with the Western General Hospital in Edinburgh.

“This funding will make a huge difference to patients recovering from a stroke or neurological condition, who will benefit from a Therapet® visit which will aid their physical, mental and emotional recovery.”

Since Scotmid’s Community Connect launched in 2017, more than £460,000 has been awarded to 42 good cause groups, enabling key projects to come to life in local areas.

Planning Democracy: Community Guide to Planning Appeals

Planning Democracy’s new Community Guide to Appeals is now available.

If a developer appeals a planning decision what can you do? How do you get the community voice heard at an appeal? What happens when?

All these questions and more can be found in the guide at:

https://www.planningdemocracy.org.uk/get-help/resources/

First Ministers urge PM Boris Johnson: Do the right thing

First Minister Nicola Sturgeon has joined with the First Minister of Wales and the First Minister and deputy First Minister of Northern Ireland to demand Prime Minister Boris Johnson “do the right thing” by reversing the decision to withdraw the £20-a-week uplift to Universal Credit.

In a rare joint intervention, the leaders of the devolved nations have warned in a letter that the UK Government “is withdrawing this lifeline just as the country is facing a significant cost-of-living crisis.”

They have urged the Prime Minister to “consider the moral, social and economic harms” of the of this cut, and “do the right thing” and reverse his government’s decision to withdraw this funding which will harm around 6 million people across the UK.

The First Minister, along with Welsh First Minister Mark Drakeford and Northern Ireland First Minister and deputy First Minister Paul Givan and Michelle O’Neill say the move, which comes into effect this Wednesday, 6 October, is short sighted at a time of increases in the cost of food and fuel, rising inflation, the end of the furlough scheme, and imminent rise in National Insurance contributions.

First Minister Nicola Sturgeon said: “I do not think there has been anything quite so morally indefensible in UK policy in recent times as the proposed cut to Universal Credit.

“At a time when we are facing the impact of the pandemic, Brexit and soaring costs, removing £20 per week from the lowest-income households simply cannot be defended in any way, shape or form.

“The planned cut represents the biggest overnight reduction to the basic rate of social security in more than 70 years and would sever a crucial lifeline for countless households across the UK at a time when budgets are already facing an unprecedented squeeze.

“It is an immoral, ill-thought out and ultimately counterproductive policy which simply must be stopped.  

“Those on low incomes are going to find it difficult to feed their children, heat their homes, and pay their rent if the cut goes ahead. We have therefore united as the leaders of Scotland, Wales and Northern Ireland to say to the Prime Minister: ‘Do not do this.’”

The full text of the letter is included below:

Dear Prime Minister

We are writing to call on you, with the utmost urgency, to reverse your Government’s short-sighted decision to withdraw the £20-per-week uplift to Universal Credit.

Your Government is withdrawing this lifeline just as the country is facing a significant cost-of-living crisis. This winter millions of people are facing an untenable combination of increases to the cost of food and energy, rising inflation, the end of the furlough scheme, and an imminent hike to National Insurance contributions.

There is no rationale for cutting such crucial support at a point when people across the UK are facing an unprecedented squeeze on their household budgets.

Within the last month, an overwhelming majority of elected members in Holyrood, the Senedd, Stormont and Westminster have voiced their opposition to this cut to Universal Credit, as have the four social security committees of each parliament. The four Children’s Commissioners of each nation, numerous charities and faith groups have also expressed their grave concerns as have millions of people who face additional and unnecessary hardship because of this cut to Universal Credit against the backdrop of a winter of hardship.

We note your Government’s announcement of a Household Support Fund – an acknowledgment that too many people will be unable to make ends meet this winter. Unfortunately, a £500 million fund handed out on a discretionary basis is wholly inadequate to making up the £6 billion shortfall in social security expenditure that will result from the cut to Universal Credit.

Your Government has repeatedly refused to conduct any impact analysis on the biggest overnight reduction to the basic rate of social security for more than 70 years.

As such, it is important that we draw your attention to the growing body of evidence and analysis about the harm this cut will inflict. Research by the Resolution Foundation and the Trussell Trust has highlighted the significant and devastating impact the cliff-edge withdrawal of the £20-a-week uplift to Universal Credit will have on family incomes, with an associated rise in food insecurity.

The Legatum Institute has produced sobering analysis highlighting that the £20-per-week uplift has kept 840,000 people, including 290,000 children, out of poverty in Q2 of 2021. It makes no sense at all to knowingly pursue a policy that will result in this immense and needless rise in child poverty and we ask you to consider the lasting harm and costs of this cut accordingly.

It is important to note that this will increase poverty and hardship without delivering any tangible social or economic benefits. The UN Special Rapporteur on Extreme Poverty and Human Rights said – when calling upon you to reverse this cut – that for a healthy and well-qualified workforce to emerge, your Government must provide adequate levels of social protection. Years of a freeze on benefits means Universal Credit has not kept pace with rising living costs. Further to this, rising inflation means that a basic rate of Universal Credit after this cut will hold less purchasing power than it did in March 2020.

To support a meaningful recovery from this pandemic we must first ensure the needs of our most vulnerable are met. This cut threatens to undermine the recovery by diminishing the capacity of six million people to make ends meet.

It is not too late for you to reverse the decision to take money out of the pockets of the poorest in society at a time when they are facing a serious cost of living crisis.

We, with the full support of the Northern Ireland Executive and the Scottish and Welsh Governments, urge you to consider the moral, social and economic harms of this cut, and do the right thing and reverse your decision to withdraw this lifeline.

A copy of this letter is being sent to the Secretary of State for Work and Pensions, the Chancellor of the Exchequer and relevant Secretary of States for the devolved nations.

Yours sincerely

Nicola Sturgeon First Minister of Scotland

Mark Drakeford First Minister of Wales

Paul Givan First Minister of Northern Ireland

Michelle O’Neill Deputy First Minister

Independent advocacy support service for disabled people

New service will launch in the New Year

Disabled people are to benefit from a ground-breaking new advocacy service which will support access to Scotland’s social security services.

The Scottish Government has committed £20.4 million over the next four years to the provision of the new and free programme, unique in the UK.

It will offer advocacy support to disabled people looking to access Scottish social security benefits.

These include current and future disability benefits such as Child Disability Payment, Adult Disability Payment and Pension Age Disability Payment.

The service will be operational in the new year and is entirely independent of the Scottish Government and Social Security Scotland. It will be available in each NHS board area and will create up to 100 new jobs across the country.

Social Security Minister Ben Macpherson said: “The service will provide advocacy to anyone who is disabled and requires support to communicate their needs when accessing Scotland’s social security services.

“This assistance will be person-centred and advocates will provide the most appropriate form of support to each individual based on their circumstances.

“This is a new and independent free service, with no equivalent provided by DWP.

“It builds on our human rights-based approach and makes social security more accessible to disabled people in Scotland, ensuring their voices are heard.”

VoiceAbility, a charity with 40 years’ experience delivering advocacy services, has been awarded the contract to provide the service.

They will establish a new base and training centre in Glasgow and create up to 100 jobs over the four years. There will be at least one advocate in each NHS area at launch, with more jobs to be created as disability benefits are introduced.

VoiceAbility CEO Jonathan Senker said: “We are proud to launch this new independent advocacy service and we look forward to establishing a base in Scotland and taking on the staff to deliver it.

“The advocacy we provide will support disabled people to make sure their voices are heard when it matters most and that more people will get the support they’re entitled to.”

Brian Scott of the Glasgow Disability Alliance added: “Our members have highlighted the barriers that many disabled people face in accessing support to find out about the social security benefits they are entitled to – and to apply for them. 

“We welcome this free advocacy service as it will ensure disabled people are more involved in the processes and decisions which affect them. 

“In making social security more accessible to disabled people, it shows real evidence of a rights-based approach to providing services.”

Grants for tenants in rent arrears

£10m to help people worst affected by pandemic to avoid eviction

Councils have been given £10 million to provide grants to tenants who have fallen behind on their rent as a result of the pandemic and are at risk of eviction.

The grants will help tenants who are struggling financially as a direct result of the pandemic, allowing them to reduce or pay off their rent arrears. They will be available to tenants in both the private and social rented sectors.

This is part of a package of measures available to local authorities to prevent homelessness, alongside Discretionary Housing Payments and advice on maximising income. The grants also come on top of the Scottish Government’s £10 million Tenant Hardship Loan Fund.

Housing Secretary Shona Robison said: “We have been doing all we can to support tenants who are struggling as a result of the pandemic, and this latest funding takes our total housing support to almost £39 million.

“These grants will support tenants and landlords who are willing to work together to address rent arrears and agree a repayment plan to ensure the tenant is able to avoid eviction.

“Councils have substantial experience in supporting people who have fallen behind on their rent, and are therefore well placed to work with both tenants and landlords in making use of this grant fund. Anyone who has been financially impacted by the pandemic and needs help to avoid eviction should contact their local authority housing department to discuss their circumstances.”

Councillor Kelly Parry, COSLA Community Wellbeing spokesperson, said: “We are working closely with the Scottish Government to support tenants through the grant fund.

“The pandemic has resulted in some facing a significant loss of income which has resulted in a proportion of these developing rent arrears. The fund is limited and therefore will be targeted at those most at risk of eviction, but will allow local authorities, tenants and landlords to work together to stay in their homes and prevent homelessness.

“Councils have a lead role in supporting a fair and inclusive recovery. Enabling people to sustain their tenancies helps maintain their important community connections.”

Nearly £1.5million will be allocated to Edinburgh to help those in social and private tenancies at risk of becoming homeless.

This share of the Scottish Government’s new £10m Tenant Hardship Grant Fund will further aid the City of Edinburgh Council in preventing evictions as a result of COVID-19 related rent arrears.

The aim of the fund is to provide an additional tool for the Council to help save tenancies, create sustainable housing solutions for individuals and prevent homelessness, alongside its other initiatives in place.

This includes the Council’s Private Rented Service (PRS) Team, which looks to help private renters keep their existing tenancy or to move to either a new private or mid-market rent secure tenancy, and  the ‘multi-disciplinary response’ team which helps Council tenants who are struggling to maintain their tenancy or falling into rent arrears.

In addition Edinburgh Help to Rent, which is a service the Council contracts Crisis to deliver, provides rent deposit guarantee bonds. 

Under Scottish Government guidelines, local authorities have to allocate the Tenant Hardship Grant Fund by the end of this financial year (March 2022). The Council is currently assessing eligibility criteria in order to support those most at risk.

Councillor Kate Campbell, Convener of the Housing, Homelessness and Fair Work committee said: “This money from the Scottish Government comes at a critical time. Between the cut in Universal Credit, the national insurance increase, the end of furlough, rocketing household fuel bills due to the energy crisis, and now the fuel crisis – households are being hit hard.

“We will use this money to help people who have fallen into rent arrears during the pandemic, to help prevent evictions, homelessness and the burden of debt being placed on vulnerable households. This is a lifeline that will help people to stay in their own homes.

“Our Private Rented Sector Team has stopped 427 households from becoming homeless in the last 18 months, while our multi-disciplinary response team is successfully supporting our council tenants who’ve fallen into arrears. This funding from the Scottish Government means we can do even more to prevent families and households becoming homeless.”

Councillor Mandy Watt, Vice Convener of the Housing, Homelessness and Fair Work committee said: “The work being done by the Council and in collaboration with partner organisations like Crisis has already made a big difference to preventing people from becoming homeless. But there is still more that needs to be done with around 6,000 people currently homeless in our Capital.

“As we come out of the Covid-19 pandemic, it could become even more difficult to find suitable accommodation for everybody who needs it. So the work of our prevention teams will be more important than ever.

“We will be working to identify those most at risk without delay because many people are already in financial difficulty and it’s likely to get worse as winter weather and rising energy prices put more strain on household budgets.”

Nina Ballantyne, Citizens Advice Scotland Social Justice spokesperson, said: “The Citizens Advice network saw a real spike in demand for housing-related advice during the pandemic. Our analysis suggests almost 300,000 people in Scotland missed a housing payment last year because they ran out of money before pay day.

“We called for more support for tenants and are delighted to see this fund launch – we’d now encourage people to seek advice on what support is right for them and make use of all the options available.”

Local advice is available from Granton Information Centre. Telephone 0131 552 0458, 0131 551 2459 or email info@gic.org.uk

From MND patients to the Prime Minister: We need your help NOW


MND letter relays the country in bid for £50 million from UK Government

Doddie Weir OBE and Euan MacDonald MBE have kickstarted a nationwide ‘MND letter relay’ from Scotland to 10 Downing Street. The letter, which has already been signed by hundreds of motor neurone disease (MND) patients from across the country, calls for the UK Government to invest in MND research.

United to End MND – a campaign led by charities MND Scotland, the My Name’5 Doddie Foundation and MND Association, as well neurologists and people living with MND – calls for £50 million of UK Government funding over five years to target MND research.

To catapult the campaign, patients throughout the UK have now written and signed a personal letter to the Prime Minister Boris Johnson, which will be presented at 10 Downing Street on Tuesday 21st September, by rugby legends Doddie Weir and Rob Burrow.

Speaking to BBC Breakfast to launch activities on Thursday, Doddie said: “We are continuing to fight to try and make a difference, and to try and find a cure for this horrific issue of MND. The UK has the best researchers in the world and at the moment we’re nearly there to find a stoppage or a cure.

“So this letter, and the money from the Government, will make a massive difference. This will give a lot of hope to people with MND. We need to take it to the next level and with that we need the Government’s help.”

Before his departure to London, Doddie is leading the charge by sending the patient letter on a relay across the nation, to encourage more people living with MND to sign it, starting with fellow MND campaigner, Euan MacDonald in Edinburgh.

Euan, who has MND, is the co-founder of the Euan MacDonald Centre for MND Research. He was joined there by Dr Suvankar Pal, Consultant Neurologist from the University of Edinburgh and Rachel Maitland, MND Scotland’s Chief Executive, who are showing their support for the letter.

The letter states ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continues ‘The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need …we urgently appeal for action and investment now’.

Euan said: “I very much believe the goal of finding treatments for MND is achievable. The letter and supporting statements highlight the personal impact this disease has had on families like mine and others up and down the country. 

“We are trying to ensure other people’s children, spouses, parents and siblings don’t have to go through what ours have. I’d like to appeal to the Prime Minister to back MND patients and have confidence in UK Science achieving what may have previously seemed impossible – a cure for MND.”

Currently the UK Government’s funding for targeted MND research stands at less than £5 million a year, which the campaign coalition says is not enough. £50 million from the UK Government over five years would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments for MND.

The funding bid has already been debated in the UK Parliament after a petition to garner public support gathered more than 100,000 signatures in just three weeks. Members of the campaign coalition have met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.

With the support of MND charities and neurologists, campaigners are now taking the call directly to Downing Street and people living with MND still have the opportunity to add their signature here: patientsunited2endmnd.org.

Dr Suvankar Pal, the Co-Lead Investigator of MND-SMART, the UK’s biggest drug trial for MND, said: “This is an exciting time for MND research with many centres across the UK working on important areas ranging from drug discovery to delivery of treatment trials.

“We fully support this initiative which promotes collaborative working and much needed investment in research with the aim of delivering new treatments for MND in a timely way.”

Rachel Maitland, MND Scotland’s Chief Executive, said: “We are united here today to ensure the voices of those living with MND are heard by the UK Government.

“The average life expectancy for someone with MND is just 18 months from diagnosis. People like Doddie and Euan do not have time to wait, and neither does our search for a cure.

“MND Scotland’s vision is a world without MND. But we are only able to fund the pioneering research taking place at the Euan MacDonald Centre, and other institutes across the UK, because of the generosity of our supporters. MND isn’t incurable, it’s just under-funded. Together, we will beat MND, but we cannot do it without the UK Government’s support.”

To find out more about the campaign visit www.mndscotland.org.uk/united or tweet your support @MNDScotland @MNDAssoc and @MNDoddie5 using #United2EndMND.