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Our impact 2016

People with MND are at the HEART of everything we do

INTRODUCTION

From the moment a person hears the devastating diagnosis of MND, their lives and those of their family members will never be the same again. Few disorders are as cruel and relentless. MND attacks the nerves that send messages from the brain to the muscles, leaving those affected unable to walk, talk, eat and ultimately, breathe.

The lifetime risk of developing MND is up to one in 300 and the disease kills six people every day in the UK. A third of people die within a year of diagnosis and more than half within two years. Today another six people will receive the news that they have MND. There is no effective treatment and no cure. This news will not only change their lives – it will change the lives of those around them forever.

From diagnosis to death it took just eight months – it was as brutal and scary as it was rapid. We could never keep up with the relentless progression of the disease.

Alun Owen, Chair, MND Association

CARE AND SUPPORT

MND may be rapid, but thanks to you, we can be too

Every day, across England, Wales and Northern Ireland, the devastating nature of this disease is matched by the amazing courage and commitment of you, and the rest of our volunteers and supporters – the majority of whom have been personally affected by the MND.

Thank you to everyone who has donated their money and time to enable us to support more people than ever before. Thousands of you volunteered, donated, ran, kept silent, baked cakes and jumped out of planes to raise money to support our vital work. In the past year, our fundraisers, supporters, partners and volunteers have donated an incredible £8.4 million. That money together with Ice Bucket Challenge donations has led to the establishment of specialist MND care roles, new research projects being funded, and the expansion of our MND Care Centre Network. The money raised is making a difference today, and our Impact Report explains how.

Together we have achieved much for people with MND, their carers, families and friends. However, we know there is still more to do. Our ability to support people with MND will continue to depend on the generosity of people like you. With your continued support we can continue to fight the devastating impact of MND and achieve our vision of a world free from MND.

This is just one call.

IN 2016, we were

able to respond to

6,425 others

Marie Grant contacted MND Connect in great distress. Her husband James has MND, is very disabled and was receiving poor care from his care home who were ill-equipped to meet his complex needs. The local NHS and the Care Quality Commission got involved and moved James to a different home. However under the existing care home’s cancellation policy, the family were due to pay for a further 28 days. This left the family facing a bill of nearly £4,000. Marie shares her experience and how a call to MND Connect secured James’ care.

“The stress was overbearing. I sold all my jewellery but it only covered the cost for one week. I honestly didn’t know what we were going to do. I was so worried this would mean he wouldn’t be able to stay in the new home. My husband can’t talk, has dementia, can’t move without support and has to be encouraged to do everything. I called MND Connect just because I needed someone to talk to. I called at 4.55pm, by midday the following day, they had solved the situation. There are no words to explain what this meant to us.”

What we did

We do not fund Continuing Health Care (CHC) as it is an NHS responsibility. In this exceptional case, we stepped into what was fast becoming a very critical situation for the family. We helped secure James’ care because we could see something urgent needed to be done. We continue to actively campaign to ensure people with MND receive CHC support.

We were pleased to be able to help James and Marie in this very difficult situation. As a charity we are not able to fund ongoing care costs. In this emergency case, however, we were able to make a one-off payment under our support grant programme.

I have never seen a charity step in so quickly to fix a critical situation. I knew immediately I had to start fundraising for them. I have seen how the money is used and the difference it makes.

Wendy Twydell,
Home Services Adviser, Woodland View
Providing people with

the care they need,

when they need it

We know MND can be rapid, so being able to respond quickly and provide people living with MND, the right support at the right time is essential. Last year we were able to greatly increase the support we provide.

MND is a complex condition and requires a co-ordinated approach to care. Research has shown that a multi-disciplinary approach can increase life expectancy and we will continue to fund our MND Care Centre Network to enable as many people living with MND as possible to access this support close to where they live. We supported 3,495 people through our dedicated network. In December 2016, we opened our 20th MND Care and Research Network in Sussex and plan to open our 21st in Norfolk in 2017. The services delivered through our MND Care Centre Network are complemented by our army of care volunteers. Last year we recruited 64 new Association Visitors (AVs) growing our network of AVs to 322, currently supporting 1,098 people with MND. As a result of our support, 92% of people living with MND, who have an AV, feel more supported and 90% feel less isolated.

We provided £1 million in funding for individual support grants and loaned 1,500 pieces of equipment to people with MND. 87% of people with MND surveyed said that the equipment improved their quality of life and 78% reported it improved their independence.

We also provided grants to local speech and language therapy teams so they could provide up-to-date communications to people with MND. MND Connect responded to over 8,400 requests for information and support. We provided more than 26,000 pieces of care information to people affected by MND and a further 41,000 copies of publications were downloaded from our website.

Providing people with care
83% of people with MND

felt their quality of life

had been improved by

the MND Association*
*Improving MND Care Survey 2016

WHAT WE HAVE
ACHIEVED
TOGETHER

NICE guideline on MND

The publication in February 2016 of the NICE guideline on MND (evidence-based recommendations showing what good care looks like) follows four years of campaigning by the Association. We have actively promoted the NICE guideline to hundreds of health and social care professionals at our educational events and multi-disciplinary meetings. To support healthcare organisations to implement and comply with the NICE guideline, we have developed Transforming MND Care, an audit tool designed to help drive improvements in MND care both locally and nationally.

This is useful to benchmark where we are against the NICE guideline and identify where we need to improve.

Clare Davis, MND Nurse Specialist, Sussex Community NHS Trust

Specialist roles to provide direct support

In partnership with the NHS we established four specialist roles to support people with MND. These posts will help reduce unplanned hospital admissions and enable people to stay at home with their loved ones.

Patients have told me about the difference home visits have made on their quality of life. Several have previously been exhausted by short journeys to hospital, so being able to support them at home has made a big difference.

Dawn Bayford, Respiratory Non-Invasive Practitioner

Children and young people

Feedback from families and a review of our support services for children and young people led to us developing a number of new initiatives, including the launch of a Young Person’s Grant and a new guide So what is MND anyway? with a dedicated area on our website and a mobile phone app. We supported 200 children and young people, and provided £48,000 funding through our support grants.

I would definitely encourage people to get the children’s pack and apply for a grant as it gave our family the chance to put MND to one side for a few hours and enjoy just being with each other making a positive happy family memory.

Kerenza Floyd

Increasing access to welfare benefits

Using Ice Bucket Challenge (IBC) funds we piloted projects in Greater Manchester and the East Midlands to assist families in applying for welfare benefits to which they were entitled. The pilot helped 116 families access £335,000 in benefits. In 2017 this new service is being rolled out across the three nations.

The service has made a huge difference to me. It has meant I have gone from merely surviving to having enough to make the most of my life.

William Rosser
You are part of the
history in ending MND

RESEARCH PROJECTS

We believe now more than ever before that achieving our vision of a world free from MND is possible. We intend to be part of the history in ending the disease. Thanks to you, the MND Association is firmly at the forefront of this work, driving forward major new research initiatives.

During the summer of 2016 we saw two exciting new genetic discoveries contributing to a greater understanding of the potential causes of MND. The studies used samples analysed as part of Project MinE, the world’s largest MND gene-hunt. To date we have committed £1.5 million and approximately 1,500 samples from our DNA Bank, to project MinE.

These advances are a direct result of the on-going generosity and support of our supporters, partners and friends. At the end of 2016, our research grant portfolio was £14.6 million, the largest in our history, and is being used to fund 88 projects. During 2016 we awarded 29 new research grants with a combined value of £2.4 million.

I am part of a growing group of international neuroscientists who firmly believe we will make a difference by chipping away at MND with our individual research contributions. People affected by MND are at the heart of this, taking back control that MND has stolen, by taking part in, as well as helping to fund research that will, one day, stop this disease in its tracks.

Prof Martin Turner, Professor of Clinical Neurology
and Neuroscience, Oxford University Hospitals

WHAT WE HAVE
ACHIEVED
TOGETHER

Our largest and most ambitious project to date

We are contributing £2 million to Project AMBRoSIA. This research could help develop a faster process for diagnosing MND and, by using biomarkers, monitor disease progression which may lead to better targeted treatments.

AMBRoSIA is a very exciting, visionary project for MND. It will provide valuable information about the progression of MND symptoms, as well as responses to new therapies.

Prof Dame Pamela Shaw, Director, Sheffield Institute for Translational Neuroscience

Largest ever International Symposium on MND

A record number of MND researchers, clinicians and health and social care professionals attended our annual International Symposium on MND in December 2016. Over 1,100 delegates from 41 countries attended the meeting in Dublin, making it the largest Symposium in our history.

We will beat this disease through global collaboration. Bringing the world’s MND researchers together in one place to share ideas and expertise enables them to go back to their laboratories with new knowledge to complement their own research.

Dr Brian Dickie, Director of Research Development, MND Association

Establishing an MND Register

Work is well underway with the creation of the MND Register for England, Wales and Northern Ireland. In time, the register will collect and store information about every person living with MND. This information will help plan the care of people with MND and tell researchers more about what might be causing the disease.

The MND Register will provide the information needed to understand whether the pattern of MND is changing over time. Importantly, the register will help researchers and people living with MND to connect, improving participation in research.

Prof Kevin Talbot, Director of the Oxford MND Care Centre

Healthcare research projects

We funded two new healthcare projects to help improve symptom management for people living with MND. We are developing a toolkit to manage cognitive and neuropsychiatric symptoms in MND. We are also supporting MIROCALS, a clinical trial of a drug for controlling neuro-inflammation in people recently diagnosed with MND. This is an EU funded project and our support is enabling the involvement of more UK based participants.

MIROCALS aims to provide a new approach to clinical trials to break the impasse in developing new treatments for progressive disorders like MND.

Prof Nigel Leigh, Director of Sussex MND Care Network
GIVING PEOPLE WITH

MND A VOICE

CAMPAIGNING & RAISING AWARENESS

We are the voices
people with MND don’t have.
During the traumatic stages
of MND you may not have the
energy to fight, so that is our job.

Colin Hardy, Volunteer Campaigner

Our voice on behalf of people with MND has to be strong, it has to be direct and it has to lead to action. Our voice is shaped by evidence, authority and insight, targeted at decision-makers best placed to make a difference to the lives of people living with MND. Our voice is also adaptable, through regional staff and volunteers working collaboratively, to find out the issues affecting people living with MND locally, and demanding action from those best placed to find a solution.

Our network of 2,200 campaigning volunteers played a vital role in all our campaigns. Many of them are finding a way to utilise their own devastating experience of MND to help others.

We are in a time of constrained public spending, therefore much of our activity has been focused on improving access to benefits and campaigning hard to protect people with MND from any current or future cuts. Our influencing and campaigning activities helped secure the NICE guideline on MND, providing national guidance on the care people with MND can expect. It also helped to ensure that Carers Allowance was exempted from the benefit cap in the Welfare Reform and Work Act, protecting carers from any potential reduction in their allowance.

WHAT WE HAVE
ACHIEVED
TOGETHER

Champion the Charter

Our campaign calling on councils to adopt the MND Charter to help improve the lives of people living with MND, was adopted by 30 councils.
It also attracted new volunteers to campaigning, especially people with MND.

Our film to promote the Champion the Charter campaign, Lorraine’s Story followed Lorraine Sheahan as she raised the issue of care for people with MND with her local Southwark Council, after her father’s death in 2014. The film has been viewed 9,000 times online.

There has been a lot of ignorance about MND until now. Hopefully, that will change as people gain a better understanding of the devastating effect it has on those living with the disease, and those who care for them. I am glad that Norfolk County Council has embraced the five principles enshrined in the MND Charter. I hope that councils across the country will add their support to this important campaign.

Cllr Brian Watkins, Norfolk County Council

Parliamentary reception

Over 100 supporters attended our parliamentary reception and met 57 MPs including three ministers from the Department of Work and Pensions. Penny Mordaunt MP, Minister for Disabled People, Work and Health gave a commitment that people living with MND should not be called for re-assessments for Employment and Support Allowance (ESA), therefore saving them from unnecessary and intrusive future assessments.

We need to make politicians and decision makers realise how much help people with MND need.

Zabun Nassar, person living with MND

Amplifying our voice

Our June Awareness Month campaign Shortened Stories featured almost 3,000 posters across England, Wales and Northern Ireland. We achieved over 500 pieces of media coverage on TV, radio, press and online.

The total number of people with the opportunity to see our posters and press articles in June at least once, was 29 million, which if we were to buy the equivalent in advertising space, would cost us £457,000.

Check out the hugely powerful #shortenedstories from @mndassoc. Lump in the throat and tears in the eyes stuff.

Clare Lucas, Twitter user

Campaigns targeted at the devolved nations

We ran successful campaigns in both Northern Ireland, Every Breath Counts, and Wales, MND Won’t Wait in the run up to the Assembly elections.

This secured commitments from 115 candidates to be champions for MND if elected, and a third of the members of both Assemblies pledged support for our campaigns.

Having witnessed the devastating effect of motor neurone disease I wholeheartedly lend my unreserved support for this well considered and meaningful campaign.

Northern Ireland Assembly Member
How we spent the

money raised

FINANCIAL OVERVIEW

For the first time since Dad was diagnosed I felt powerful. We couldn’t do anything about the diagnosis, but we could be part of the fight against it.

Elena Luty

Our work is only made possible thanks to the incredible generosity of our supporters. Donations come from a variety of sources, but whether from regular monthly donations, imaginative corporate support or unusual fundraising challenges, please know that your support reaches people with MND, their families and carers and enables us to invest in MND research.

69p

Out of every £1 you raised we spent 69p to fund research, care and campaigning, 13p to fund support costs and 18p on fundraising costs to generate our income.

£3.45

For every £1 spent in the past year on fundraising, £3.45 was raised in return.

£8.4million

We are extremely grateful for the extraordinary support shown by all of our supporters who raised an incredible £8.4 million in 2016. A special thank you to our branches and groups who raised a further £2.4 million through their dedication and commitment.

£5.5million

The gifts left to us in supporters’ wills represent a very important part of our income and contributed £5.5 million.

2016

ACHIEVEMENTS

FUNDRAISING HIGHLIGHTS

Thank you

There are far too many people to thank individually, however, we value and are grateful for every contribution we receive.

Thank you to Martindale Pharma for supporting our Understanding MND training video, our MND education conference and our International Symposium on MND.

Thank you to the Betty Messenger Charitable Foundation for their continued support for the development of an MND Register.

Congratulations to Steven Smith and the whole Rave and Ride Team who have now raised over £150,000 for the Association and secured two Guinness World records in May.

Thank you to our network of 89 branches and groups who provide vital local support alongside raising money and awareness.

Thanks to our 1,400 supporters who took part in a wide range of sporting events raising over £1 million.

Thank you to the Garfield Weston Foundation for their generous donation of £100,000 towards the MIROCALS drug trial.

Our thanks to Chris, Stuart and Gemma Broad, with Rosemary Macdonald, who have raised over £600,000 in five years through The Broad Appeal.

Thanks to the Wolfson Foundation for their grant of £73,000 towards communication aids for local speech and language therapy teams.

Thank you to Credit Suisse for choosing us as their UK Charity of the Year partner in 2017.

Thank you to the directors of the Ashley Wilde Group who raised £26,000 by completing the UK 3 Peaks.

Thank you to everyone who set up a Fightback Fund or Tribute Fund raising more than £1 million, to help fund the Association’s work.

Thank you to the Facilities Management Industry for supporting us at their annual ball and donating over £29,000.

We are grateful to all the people who remembered us in their will, donating £5.5 million.

We know how brutal this disease can be. That is why we need you to continue fighting, alongside us, for everyone diagnosed with MND.

And for next

year...

FUTURE PLANS

Improving care
and support

Our care activities are constantly adapting to the needs of people with MND and aim to match the rapid progression of the disease. We know that people with MND have difficulties accessing welfare benefits, so following our successful pilot, we will be creating a dedicated service to help people claim their entitlements.

We have seen the difference specialist roles can have in supporting people with MND. Therefore we will be establishing a further six specialist practitioner posts to ensure people get the care they need. We will also be using our audit tool, Transforming MND Care to help drive up standards of care people with MND receive.

This is alongside existing activities such as expanding our MND Care Centre Network, funding grants, loaning equipment, providing information and support, as well as educating health and social care professionals, to help them provide the best care to people with MND.

Research

To help accelerate progress we will continue to seek new ways to influence, shape and propel research. We will actively pursue new collaborations and programmes, utilising the resources and skills of research partners nationally and internationally.

Whilst genetics is giving us an insight into the disease, the causes of MND are likely to involve a complex combination of genetic predisposition and environmental factors. Therefore we will ensure future genetic and epidemiological studies are done in combination. The continued development of the MND Register for England, Wales and Northern Ireland will also give researchers the opportunity to explore the environmental causes of MND in more detail, to help understand why people develop MND.

Campaigning and raising awareness

Once again we aim to achieve an increase in the public’s awareness of MND through our June Awareness Month activities, and campaign - The Story Behind The Eyes.

We confidently expect more councils to adopt our MND Charter and will be monitoring its impact in helping people with MND access the best possible support at a local level.

We will continue to be a strong and powerful voice on behalf of people with MND and will be relentless in our pursuit of a system that meets their needs in a fast and effective way.

We want a world free from MND

If you would like to support us in our mission,
you can help in a number of ways

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