Parkinson's UK - Our impact 2010

our t c a p im 2010 1

Contents

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Foreword

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What we do

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Our year in numbers

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Every penny counts

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Our six goals:

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1 No one will have to face Parkinson’s alone.

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2 W e will listen and respond to the needs of everyone affected by Parkinson’s.

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3 We will improve life for everyone living with Parkinson’s.

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4 O ur leadership in research will have resulted in better treatments and progress towards a cure.

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5 W e will raise more than £110million to meet the costs of delivering our ambitious plans.

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6 We will be a united, focused and effective organisation.

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Thank you

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Foreword I wanted to help find a cure and improve life for everyone affected by Parkinson’s.

And so I chose to support Parkinson’s UK, whose vision is to do just that.

For one very memorable week in November, I was fortunate enough to share seven days in one of the largest deserts in the world with a group of like-minded people. This group – of all ages and backgrounds – came together to raise funds for Parkinson’s UK. Some, like me, had Parkinson’s, others were carers or the children of people affected by the condition. Our stories were different but we all woke up one morning to realise that there are a few times where you can make a real difference and help others.

We all want to make sure that there is someone there to support people affected by Parkinson’s. People who might have nowhere else to turn.

We need to ensure that all doctors and nurses understand the complexities of Parkinson’s – through the training that Parkinson’s UK provides. We want to add our voices in the campaign for better and fairer care. And – most importantly to me – we want to help fund groundbreaking research into better treatments, and ultimately a cure.

Every hour someone, like me, is told they have Parkinson’s. Thank you for supporting us and for changing our lives.

Roddy Lee

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o d e w t a wh Our vision

To find a cure, and improve life for everyone affected

by Parkinson’s.

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Our mission There are five key elements of what we do for all people affected by Parkinson’s:

Research

We fund groundbreaking research to advance understanding of Parkinson’s and improve treatments. We’ll overcome the symptoms and find a cure.

Information

We provide information and training on every aspect of Parkinson’s.

Friendship and support

We offer friendship and support to everyone living with Parkinson’s, their families and carers.

Campaigning

We raise awareness, change perceptions and demand better services.

Fundraising

Our work is dependent on voluntary donations. We inspire people to support us.

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Celebrating the launch of Parkinson’s UK on Bournemouth pier

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n n i r a e our y Tens of thousands

72,500 We had an average of 72,500 visits to our website each month.

3,000

of individuals across the UK supported us through fundraising events, by making donations and volunteering their time.

We networked with over 3,000 delegates from all over the world as leading partners at the second World Parkinson Congress.

Facebook group

4,500

Our Facebook group gained 2,600 new members.

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Our expert helpline nurses answered medical enquiries from 4,500 people with Parkinson’s, carers and professionals.

100%

of the care homes and domiciliary care agencies we’ve trained rate our sessions as excellent or good.

Over 1,600 people started following us on Twitter – @parkinsonsuk

TWITTER

s r e b m u n

£8.5m

Our 123 information and support workers helped people claim over £8.5m in benefits.

Clinical studies

of people affected by Parkinson’s we support rate our information and support workers as excellent or good.

five

say we’re making a positive difference in their lives.

94%

82%

We’re supporting 27 clinical studies throughout the UK which people with Parkinson’s can take part in.

Our Parkinson’s training modules remain in the top five most popular provided by the British Medical Journal online.

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y n n e p y r e ev counts

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Dennis

lent of £192 va ui eq e th t en sp e w 10 In 20 ople living with pe 0 0 ,0 0 12 e th of ch for ea ’s over £23million. at Th .

K U e th in s n’ so in Park

This is how Parkinson’s UK supports every person with Parkinson’s – like me.

£24 £13 £38 to support my healthcare team, including my Parkinson’s nurse.

to campaign for people to be treated fairly and to raise awareness of Parkinson’s.

on the support and friendship provided by my local group.

£11 £45 £32 for information resources so that I can find out more about Parkinson’s.

on research into better treatments and ultimately a cure.

so that I have one-toone expert support and advocacy.

£25 £4 to raise more money so that I can continue to have support in the future.

to run a high-quality organisation that’s here for me.

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s l a o g x i our s Goal 1. No one will have to face Parkinson’s alone.

Too many people tell us that when they were diagnosed nobody gave them the information and support they needed. We have to change that.

We need to make sure that health and social care professionals are always aware of what we offer, so they refer people to us as a matter of course.

Goal 2. We will listen and respond to the needs of everyone affected by Parkinson’s.

Our close contact and involvement with people living with Parkinson’s is one of our strengths. We will channel the views and voices of everyone affected by Parkinson’s to improve policy, advance research and secure better services.

Goal 3. We will improve life for everyone living with Parkinson’s.

Everyone affected by Parkinson’s should be able to access health and social care that meets national quality standards. Yet the services people get today depend on where they live. This is unfair and can’t go on. We need to use all possible levers to improve care and make sure everyone can benefit from good services, including support from a specialist Parkinson’s nurse.

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s Goal 4. Our leadership in research will have resulted in better treatments and progress towards a cure.

Innovative research is fundamental to achieving our vision – finding a cure.

By the end of 2010 the charity had spent over £50million on research.

However, it is vital that we increase our investment in research to bring us closer to a cure. We’ll work closely with other charities and governmentfunded research bodies. And improve opportunities for collaboration in the UK and across the world.

Goal 5. We will raise more than £110million to meet the costs of delivering our ambitious plans.

Our local groups and fundraising teams – alongside thousands of supporters and volunteers – have played a key role in providing the firm financial foundations that underpin our work. But we can’t stop here if we are to support everyone affected by Parkinson’s in the UK by 2015.

We must reach out to many more supporters to raise more money to achieve our ambitious plans.

Goal 6. We will be a united, focused and effective organisation.

Our new brand and strategy provide greater clarity about who we are and what we do. They provide a fantastic opportunity to drive the charity forward and make us stronger. Our vision, values and goals will keep us on track and make sure we all share a common sense of purpose.

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Fundraisers Michelle and Emma at a party for Parkinson’s

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Goal 1

of everyone affected

Our free, confidential helpline means that expert information and support is only a call away. Whether it’s a question about benefits, symptoms, or just needing a listening ear, we’re here to help.

In 2010 we had 22,071 conversations with people affected

by Parkinson’s on our helpline.

And 95% rated the service as good or excellent.

And 25,000 people got support as members of our local groups.

Too often people who are newly diagnosed are left without information to make sense of their condition and choose the right care.

That’s why we created a newly diagnosed pack. And we send out 1,270 each month so people don’t have to face Parkinson’s alone.

People affected by Parkinson’s need support locally. That’s why we held 479 information events across the UK in 2010 and signposted 16,319 people to appropriate services.

“You could not have been more helpful, kinder or more efficient at answering my question.”

Helpline caller

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ce Parkinson’s alone. fa to ve ha ill w e on s o n’ N o ns

22,071 We’ve had 22,071 conversations with people affected by Parkinson’s on our helpline.

16,319 people were signposted to appropriate services.

25,000

people get support as members of our local groups.

479

information events were held across the UK .

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Doyle talking to Information and Support Worker Diane

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Goal 2

of everyone affected

People affected by Parkinson’s are at the heart of everything we do.

Our new customer care programme makes sure we take their feedback on board. We’ve recorded 737 compliments, comments and complaints that are really shaping the way we work.

We’re also proud to have received two quality standard awards for our information – from the Helplines Association and The Information Standard.

People with Parkinson’s are core to our campaigning. And together, our voice is getting louder. Our Involving people with the condition campaigns network has grown by is key to delivering the right services. almost 600% to 3,306 members who took 2,090 campaigns actions.

Our information resources are always developed with people Getting good services for affected by Parkinson’s and 90% everyone is a real priority. 14,463 were rated good or excellent. people signed our Fair Care They’re also reaching more people petition, which was presented to – in 2010 we sent out 672,553 the government, to help make – 14% more than the year before. this happen.

“People with Parkinson’s are human beings first. They need the proper support to be able to lead lives as rich as anyone else, because that’s what anyone deserves.”

Care Services Minister, Paul Burstow MP

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to the needs d on sp re d an n te lis ill We w

by Parkinson’s. d te ec aff ne yo er s ev n’ of o ns

672,553 information resources were sent out in 2010.

14,463

3,306

Our campaigns network has grown by almost 600% to 3,306 members.

people signed the Fair Care petition.

737

We’ve taken 737 compliments, comments and complaints.

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Healthcare professionals Harri and Elsie at Central Middlesex Hospital

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Goal 3

of everyone affected

People affected by Parkinson’s tell us again and again that they need a Parkinson’s nurse. There are now 310 Parkinson’s nurses, up from 289 at the end of 2009. This means that 6,300 more people affected

by Parkinson’s can rely on vital nursing support.

Our new Professionals’ Network was launched in July to share best practice and raise standards of care among health and social care professionals.

The network has 948 members who get the very latest information about Parkinson’s.

10,220 professionals completed our online and distance learning programmes. And we educated 14,986 health and social care professionals, reaching 1,262 care homes, 705 domiciliary care agencies and 952 GPs.

“Thank you to my nurse for being there.

If it was not for the help I get I would not have been able to write this.”

Person with Parkinson’s

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everyone We will improve life for s. nson’sliving with Parkinson’

14,986 We educated 14,986 health and social care professionals to national standards.

10,220 professionals completed our online and distance learning programmes.

948

The Professionals’ Network has 948 members who get the very latest information about Parkinson’s.

6,300 more people have access to a Parkinson’s nurse.

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Tilo and Mike carrying out stem cell research at the University of Edinburgh

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Goal 4

of everyone affected

Research is the hope of thousands of people affected by Parkinson’s.

A cure for them and their families cannot wait.

In 2010 we invested £4.6million on new research projects and supported 90 research projects worth over £15million. We also launched the Parkinson’s UK research strategy to give real focus to the research community.

We’re investing in bold new ideas that have the potential to transform the lives of people with

Parkinson’s. Innovation grants support exceptionally original research focused on the causes, treatment and cure for Parkinson’s.

In 2010 we invested £444,000 in innovation grants.

We’ve seen fantastic progress in understanding the causes of Parkinson’s. Exciting new trials exploring cell transplants for Parkinson’s and drugs that have the potential to slow the progress of Parkinson’s are getting underway.

“Research must be done into all those different avenues, all those different possibilities. I have four beautiful sons and I don’t want any of my children to grow up and face what I face now.”

Person with Parkinson’s

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will have resulted in ch ar se re in ip sh er ad le Our towards a cure. ss re og pr d an ts en tm nson’sbetter trea

£4.6m In 2010 we invested £4.6million on new research projects.

£15m ch We supported 90 resear on. illi projects worth over £15m

£444,000 In 2010 we invested £444,000 in innovation grants.

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Going the distance at the Bupa Great South Run

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Goal 5

of everyone affected

In 2010 more individuals, groups and organisations supported the charity with gifts of money or time than ever before.

Compared with 2009, donations from corporate supporters grew by 35% and an extra £250,000 was donated by individuals.

We launched our first legacy marketing programme, through which 500 supporters promised a gift in their Will. And more people than ever left us a legacy during the year – worth more than £9.8m.

More than 4,300 people took part in fundraising events, including the London Marathon – for which we had our biggest ever team of runners.

“I took part in a sky dive for Parkinson’s UK – it was an exhilarating experience.

And I wanted to give something back to a charity that has supported me since diagnosis.”

Len, fundraiser (aged 76)

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10million to meet £1 an th e or m e is ra ill We w tious plans. bi am r ou g in er liv de of nson’sthe costs

£250,000 An extra £250,000 was donated by individuals compared to 2009.

500

supporters now pledge to leave the charity a gift in their Will.

4,300

We inspired 4,300 people to get involved and join in our events.

£9.8m More people than ever left us a legacy during the year – worth more than £9.8m.

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Raising funds at the British Firework Championships at Plymouth Hoe

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Goal 6

of everyone affected

We became Parkinson’s UK in April – with an ambitious new strategy and bold new look. 96% of our staff say we now have a clear vision for the future. And 72% of members believe the new brand will help us achieve our goals.

We’ve formed 20 new local groups so our volunteers now run 350 groups across the UK, offering friendship and support. They help us to campaign, educate professionals and raise our profile locally.

We’re growing bigger. 1,911 more members have joined us. This means 34,000 members are helping to find a cure and improve life for everyone affected by Parkinson’s.

We’ve also trained 29 people affected by Parkinson’s to sit on our interview panels and help recruit new members of staff.

“I spoke to a man with Parkinson’s following the rebrand who said he had never wanted to engage with us before. The new brand made him interested and excited about getting involved.”

Information and support manager

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sed We will be a united, focu . tion nson’sand effective organisa

350

Our volunteers run 350 local groups offering friendship and support.

1,911 more members have joined us and we’ve formed 20 new local groups.

96%

of our staff say we now have a clear vision for the future.

34,000

members are helping to find a cure and improve life for everyone affected

by Parkinson’s.

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u o y k n a th We can only go on making a difference to people’s lives because of the generosity of the thousands of people and organisations who give their money, time and support to our work. Although it is not possible to mention every single person or organisation that has supported our work over the course of 2010, we would like to give particular thanks to: Our Patron

HRH Duchess of Gloucester

Our President Jane Asher

Our members

The size of our membership gives us a strong position to influence decision-makers. Thank you to everyone who joined Parkinson’s UK or renewed their membership in 2010.

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Our volunteers and local groups

Our volunteers bring skills, experience, energy, enthusiasm and commitment to Parkinson’s UK. Our trustees, 350 local groups, fundraisers and volunteer educators are integral to our work. Thank you for everything that you do.

Our staff

Our staff are highly skilled people who are passionate about their work.

Their tremendous effort across the year means that Parkinson’s UK has shown huge progress on all fronts.

Charitable trusts and foundations

We continue to value the generosity of all charitable trusts and foundations that support Parkinson’s UK. Our special thanks however go to the following for making a special contribution to our work in 2010.

Adint Charitable Trust The Alan Edward Higgs Charity The Big Lottery Fund Donald Forrester Trust Doughty Hanson Charitable Foundation The Edith Jamieson Charitable Trust

heartfelt thanks to We would like to give a d to the success of te bu ri nt co ho w ne yo ever .

Parkinson’s UK in 2010

The Eveson Charitable Trust Frank Brake Charitable Trust Garfield Weston Foundation George John and Sheilah Livanos Charitable Trust Harry Bacon Foundation Loseby Charitable Settlement Mazars Charitable Trust The Moffat Charitable Trust The Monument Trust The Peacock Charitable Trust The PF Charitable Trust

Orion Pharma UK Ltd Teva Pharmaceuticals Ltd UCB Pharma Ltd

Those who remembered Parkinson’s UK in their Will

Without the generosity of these people, our work wouldn’t be possible. Legacies are vital to our work – enabling us to carry out our support and research.

Our thanks also goes to these individuals who have made a special Companies and other organisations contribution to our work in 2010.

The support of our partners Mr Nathaniel Allen remains crucial to our success as a Mr Simon Blunt charity. We would like to thank all Mrs Monique Bryers of our corporate partners for their Miss Margaret Chamberlain important contributions.

Mr Eric Parkinson Association for Public Mrs Fiona Wilson Service Excellence Boehringer Ingelheim Limited For further information about our Epsom Coaches achievements in 2010 and plans for Genus® Pharmaceuticals Limited 2011 email hello@parkinsons.org.uk Knowle & Dorridge Lions Club Lloyds Banking Group For personal stories about how Majestic Wine the impact of our work is affecting Medtronic Limited people’s lives, please visit our website Norgine Pharmaceuticals Ltd parkinsons.org.uk

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We’re the Parkinson’s support and research charity. Help us find a cure and improve life for everyone affected by Parkinson’s.

We bring people with Parkinson’s, their carers and families together via our network of local groups, our website and free confidential helpline. Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s.

As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer than ever. We also campaign to change attitudes and demand better services.

Our work is totally dependent on donations. Help us to find a cure and improve life for everyone affected by Parkinson’s.

Parkinson’s UK 215 Vauxhall Bridge Road London SW1V 1EJ Free* confidential helpline 0808 800 0303 Monday to Friday 9am–8pm Saturday 10am–2pm. Interpreting available.

Text relay 18001 0808 800 0303 *calls are free from UK landlines and most mobile networks.

parkinsons.org.uk hello@parkinsons.org.uk © Parkinson’s UK, February 2011. Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom.

A charity registered in England and Wales (258197) and in Scotland (SC037554).