My Volunteer Induction - Parkinson's UK (PDF, 6.3MB)

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ContentsWelcome4Module oneWhat is Parkinson’s?Task one: About Parkinson’sTask two: True or false quizTop tips7791315Module twoHow does Parkinson’s UK support people?Task one: Our vision and valuesTask two: Our strategyTask three: Volunteer cluesTask four: Sharing our achievementsTop tips17171920212529Module threeVolunteering practicalitiesTask one: Things you need to knowTask two: Health and safetyTask three: Being an ambassadorTop tips313133394149Module fourManaging your volunteeringTask one: Managing your timeTask two: Saying noTask three: Exploring stepping backTask four: Identifying when to take a step backTop tips51515360646772Contents 3

Welcome to Parkinson’s UK:volunteer inductionWhether you’re helping out at a one-off event or making alonger-term commitment, thank you for volunteering with us.Everything you need to know about starting your volunteerjourney, from what Parkinson’s is, to how to manage your time, is inthis volunteer induction.“ On behalf of the teamof volunteers who puttogether this induction,we hope you enjoy itand your volunteering.”Suzanne and Frank, Parkinson’s UK volunteers“Volunteers really are thelifeblood of Parkinson’s UKOn a daily basis I am inspiredand motivated by the energy,commitment and drive of ourvolunteers.”Steve Ford, Chief Executive, Parkinson’s UK4 Parkinson’s UK: My Volunteer InductionWhat is the volunteerinduction?The four modules in this inductionaim to help you feel inspired,informed and supported throughoutyour volunteeringHow do I use the induction?Talk to your staff contact to findout which parts to complete foryour role. Send an email tovolunteering@parkinsons.org.uk orcall 020 7963 9328 if you’re notsure who your staff contact is.It’s up to you which order you completethe modules in, and not all of them willbe relevant to what you’re doing.How do I find out moreabout volunteering rolesfor Parkinson’s UK?Change lives, meet new people anddevelop your skills. We have a rangeof volunteer opportunities, just visitparkinsons.org.uk/volunteer or call020 7963 9328 to find out more

Module one:What is Parkinson’s?You might be affected by Parkinson’s yourself and have someknowledge of the condition. Or you might not know much aboutit yet. Each person’s experience of Parkinson’s is different. As avolunteer, it’s important that you understand how the conditionaffects someone so that you can talk about our work and/orbest support people affected by Parkinson’s.“ We hope you’ll find theactivities in this moduleinteresting and helpfulin preparing you to be avolunteer with Parkinson’sUK and in working withpeople with Parkinson’s.”Dick, VolunteerWhat you’ll learnAt the end of this module, you canexpect to be able to: explain that people with Parkinson’sdon’t have enough of a chemicalcalled dopamine because some of thenerve cells in their brain have died list the common symptomsof Parkinson’s understand that everyone’sexperience of Parkinson’s is different interact with people with Parkinson’sappropriately provide our website address andhelpline number for people whowant to find out more about livingwith Parkinson’sActivitiesThis module consists of two tasksand some top tips: Task one: What is Parkinson’s? Task two: True or false quiz Top tipsModule One 7

“ I decided to volunteer for Parkinson’s UK asI wanted to be part of an organisation thathad a strong passion for helping people. Iwas interested in learning about Parkinson’s,a condition I knew very little about.”Amilia, an administration volunteer8 Parkinson’s UK: My Volunteer Induction

Tt\SK ()NE:About Parkinson'sWhat causes Parkinson's? What are the symptoms and how doesit affect someone's everyday life? For an overview of the keyfacts about the condition, please read the information below.Defining Parkinson'sParkinson's is a progressiveneurological condition. This meansthat it causes problems in the brainand gets worse over time.The number of people diagnosed withParkinson's in the UK is about 145,000.That's around 1 adult in every 350.People with Parkinson's don't haveenough of a chemical called dopaminebecause some of the nerve cells intheir brain have died. Symptoms startto appear when the brain can’t makeenough dopamine to controlmovement properly.S ome people can experience symptomsnot related to movement, including: depressiontirednesspainskin, scalp and sweating problemshallucinations and delusionsWhat can you do to help?There are lots of ways to manage theongoing issues and challenges of lifewith Parkinson’s - our website hasplenty of tips www.parkinsons.org.ukThere's no cure at the moment. Butdrugs, which need to be taken on time,and treatments can managesymptoms.What are the symptoms?Symptoms and how quickly theyprogress are different for everyone.Some of the most common symptomsare related to movement and include: tremor or shakingslower movementwalking with small, shuffling stepsstiffness or cramping musclesfreezinglack of facial expressionModule One I 9

What’s living with Parkinson’s like?“ You can freeze to the spot.”Terry “ You can lose the ability to communicate.”Ben “ When I’m anxious, Parkinson’s affects me morethan usual and I really don’t feel in control.”Mark“ Your muscles can get so stiff, it’s hardto even move.”Diane “ You can get very ill if you don’t getyour medication on time.”Phil“ Because of my volunteering, I not onlyknow a little more about Parkinson’sand research, but enjoy very rewardinginvolvement in the work of Parkinson’s UK.”George, lay grant reviewer10 Parkinson’s UK: My Volunteer Induction

Tt\SK TWC):True or false quiz questionsThinking about what you know about Parkinson's and what you'velearnt from task one, decide whether each of the statementsbelow are 'true' or 'false'. Turn over the page for the answers.123.,It5People with Parkinson'sexperience the same symptoms.True/ FalseEvery hour, two people in theUK are told they haveParkinson's.True/ FalsePeople with Parkinson's mayexperience difficulty swallowingfood or drink.6713True/ FalseParkinson's only affects theover 50s.True/ FalseThe main symptoms ofParkinson's are tremor, rigidityand slowness of movement.True/ False9There is no cure for Parkinson's.True/ FalseParkinson's is caused by a lackof the chemical dopamine inthe brain.True/ FalseSymptoms of Parkinson's appearwhen all the nerve cells in thebrain have been affected by alack of dop amine.True/ FalseIf a person with Parkinson's has'frozen', you need to shout atthem to get them to move.1()True/ FalseTo stop symptoms gettingout of control, people withParkinson's need medicationon time, every time.True/ FalseModule One I 13

Tt\SK TWC):True or false quiz answersThank you for completing the quiz. Find out how you did below.123,i.5False. Everyone's experienceof Parkinson's is dif ferent.True. Because we're here, no onehas to face Parkinson's alone.True. Parkinson's can make themuscles in the jaw and faceweaker, which affec ts chewingand swallowing.False. Parkinson's is morecommon in the over 50s butyounger people get it too.True. Some people canexperience symptoms notrelated to movement, such aspain and depression.67139True. But, with your help, we'reworking hard to find one.True. This is because some nervecells in their brain have died.False. Symptoms start to showwhen around 70% of ner ve cellsin the brain are af fected.False. It's best to offer someonehelp and be patient as it maytake them a few moments toget moving again.1()True. Medication forParkinson's need s to betaken on time. This is oneway that people withthe condition can stayin control."The greatest reward is knowing that, asa result of something you've said, life willbe easier for someone with Parkinson's."Bridget, who delivers education sessions in care homes14 I Parkinson's UK: My Volunteer Induction

Top tips123 Makea note of our website parkinsons.org.uk and helpline number0808 800 0303, a confidential service providing support to anyoneaffected by Parkinson’s. Use these to point people in the right directionif you’re asked for advice or information about living with Parkinson’s. your staff contact if you’re not sure how to find out an answer to aAskquestion you or someone you’re helping has about living with Parkinson’s.They can suggest where to find out more.Visit the Information and Support section of our website,parkinsons.org.uk/information-and-support to find out moreabout how the condition affects someone’s everyday lifeand what treatments and therapies exist to treat it. You can also see the fullrange of information and support resources we have, and how to order.“ Through volunteering, I’ve learnt I can makea difference, that Parkinson’s UK is there forus and that every person with the conditionexperiences different problems.”Kim, branch committee memberModule One 15

Module two:How does Parkinson’s UK support people?Why did you choose to volunteer for Parkinson’s UK? That’sa question people might ask you. It’s important you know aboutwhat we do and why. This section will help you understand, andexplain to others, how your role is vital to achieving our vision andhow it improves life for people living with Parkinson’s.“ As a volunteer, you maybe asked by members ofthe public or people whohave Parkinson’s aboutthe different ways thatthe charity can supportpeople, so you need toknow a little bit about it.”What you’ll learnAt the end of this module, you canexpect to be able to: explain the vision and values ofParkinson’s UK understand ways that staff andvolunteers are working together toachieve the charity’s strategicgoals explain how your role is supportingand/or improving life for peopleaffected by Parkinson’sAnne, VolunteerActivitiesThis module consists of four tasksand some top tips: Task 1: Our vision and values Task 2: Our strategy Task 3: What do our volunteersdo? Top tipsModule Two 17

“ Our vision – to find a cure and improve lifefor everyone affected by Parkinson’s – isambitious and volunteers are key to makingit a reality.”Bill, chair of our Bedford and District Branch18 Parkinson’s UK: My Volunteer Induction

Tt\SK ()NE:Our vision and valuesOur values and vision guide our work. To achieve our ultimateambition, we need to work together. As a new volunteer, we needyour support to make our plans a reality.Your taskPlease read our vision and values below. Once you've read them, make a fewbullet point notes about how your volunteer role contributes to our vision. Ifyou're unsure, ask your named staff contact next time you speak to him/her.You'll spot more examples of our values in action throughout this inductionand in your volunteering work with Parkinson's UK.Our visionOur vision - our ultimate ambition - is to find a cure and improve life foreveryone affected by Parkinson's.Our valuesPeople-First. We're a strongmovement for change, informed,shaped and powered by peopleaffected by Parkinson's. We value andsupport each other.Uniting. We're people withParkinson's, scientists and supporters,fundraisers and families, carers andclinicians. We're working, side by side,to improve the lives of everyoneaffected by Parkinson'sPioneering. We innovate acrosseverything we do. Creative, courageousand with pioneering spirit, we strive tocontinually improve.Driven. We live and breathe ourpurpose. We set clear goals and striveto deliver the greatest impact foreveryone affected by Parkinson's."Parkinson's UK is very well organised andprovides a vital service. The more you areoccupied, the less you think about your ownParkinson's ,,Colin, lay grant reviewerModule Two I 19

Tt\SK TWC):Our strategyParkinson's UK has big plans and, as a volunteer,you're a key part of them.Your taskTake time to familiarise yourself with our strategy. We're coming to the endof our current strategy, and preparing for what's next. Can you see how yourvolunteering fits into each of these themes?Our strategy is based on what people with Parkinson's, their families and carerstold us would make the biggest difference to their lives.Our aims include:Finding a cure and developing better treatments:We need to cut the red tape that's slowing progress, make sure breakthroughsare being shared, and think more creatively to open up new avenues ofexploration.Empowerment to take control: Living with Parkinson's can be challenging, andpeople have told us that they want to feel more in control of their lives.Quality services as standard: The right care at the right time is vital, but accessto high quality and consistent services varies greatly across the UK."I started volunteering for Parkinson's UK in themid 1980s when my late husband was diagnosed.The organisation has evolved and become veryuser-friendly. Staff are supportive and keep meon the right track when I organise things."Sylvia, local branch volunteer20 I Parkinson's UK: My Volunteer Induction

Tt\SK THl EE:Volunteers cluesFrom taking photos at events to reviewing research fundingapplications, our volunteers do all sorts of things to improvethe lives of people with Parkinson's.Your taskCan you guess the volunteer role from the pictures below? Turn to page 24to find out if you are rightJ.\I Module Two I 21

Tt\SK THl EE:Volunteer clues - continuedCI)e22 I Parkinson's UK: My Volunteer Induction

Tt\SK THl EE:Volunteer clues - answersHow many volunteer roles did you identify? Find out below.I C)IVolunteer Educators educatestaff in nursing and care homesabout Parkinson's.Event volunteers help witheverything from marathons toconcerts. They might be marshals,run the registration desk or handout water to participants.Regional fundraising volunteersraise money for Parkinson's UK intheir local area. They mightorganise a collection or talk at aRotary Group.EOur local network of branchesand groups provide peopleaffected by Parkinson's withfriendship, support and theopportunity to meet others in similarsituations. Some also offer singing,exercise classes, outings and othertherapeutic and social activities.Lay grant reviewers reviewgrant applications for researchinto Parkinson's. Their experienceof the condition when reviewingThis list isn't exhaustive, we've justresearch bids, helps us choosechosen a few examples andthe right projects to fund.volunteer roles change all the time.By volunteering for Parkinson's UK,you're improving lives. Thank you!"My advice to new volunteers is to find out what'sinvolved in the role you're volunteering for. Do you havethe time and energy to do justice to the role? It helps ifyou have had previous experience of similar tasks."Aneurin, branch fundraiser24 I Parkinson's UK: My Volunteer Induction

Tt\SK FC)UI :Sharing our achievementsVolunteers founded Parkinson's UK in 1969. Since then, staffand volunteers at the charity have worked together, united bya passion to find a cure and improve life for everyone affectedby Parkinson's. You're joining a charity that has achieved somuch.Your taskIt's important that you understand what Parkinson's UK does and what thecharity has achieved. Then you can talk knowledgeably about our work topeople you meet as a volunteer. Some examples of our achievements are onthe next page. Think about which of the achievements you've seen locally youcould mention if the following people asked you about Parkinson's UK.12Someone with Parkinson'sinterested in the charity's work.A potential new volunteerinterested in how they canmake a difference to the livesof people with Parkinson's.3Someone you meetvolunteering at an event whois interested in donating to thecharity.Someone from the local pubwho's interested in selectingParkinson's UK as the recipientof their monthly charity quiz.Module Two I 25

Tt\SK FC)UI :10 achievements123We fund research to acceleratethe development and testing ofpromising new Parkinson'streatments. We were the majorfunder of a clinical trial of GDNF– a treatment with excitingpotential to transform life forpeople with Parkinson's.We have more than370 volunteer-run localgroups across the UK,offering friendship andsupport to everyoneaffected by Parkinson's.Volunteers have ledcampaigns to save Parkinson'snurse posts across the UK, aswell as ensuring vital servicessuch as physiotherapy aren'tlost for people living withParkinson's.26 I Parkinson's UK: My Volunteer Induction i5In 2019 so far, volunteer educators havespoken to over 2000 professionals innursing and care homes - increasingunderstanding of how to care for thoseliving with the condition.From the London Marathon, tothe more than 30 Walk forParkinson's events across theUK, volunteers ensure ourevents run smoothly, andparticipants are supportedevery step of the way.

"I have had the condition for 14 years.Worrying does me no good butvolunteering is a kind of solution to me. Istill feel relevant as a person, because everylittle thing I do can make a difference.”Amparo, volunteer educator678Volunteers are a huge partof Team Parkinson's,showing the world thatwe're one big community,uniting to end Parkinson's.Forever. By spreading theword, you're getting evenmore people involved.Volunteers have helped putParkinson's on the agenda atparty conferences, invitingMPs to learn more aboutParkinson's.Researchers can develop bettertreatments and make progresstowards a cure using brain tissueprovided by our Parkinson’sUK Brain Bank, the largestdedicated to Parkinson’s in theUK. Volunteer fundraising helpsmake this possible.910 More than 6,000 peopleuse our online forum forfriendship and support.This includes those whohave Parkinson’s, theircarers, friends and familymembers, and volunteers. hrough our ResearchTSupport Network,volunteers review grantapplications for researchinto Parkinson’s. This year,one such trial investigatedthe properties of over1,000 approved drugs toidentify 2 with potentialfor Parkinson'sModule Two 27

Top tips1234Sign up to the Parkinson's UK e-news for more information about whatParkinson’s UK is doing and the people you are supporting. Sign up atparkinsons.org.uk/about-us/email-updatesJoin Team Parkinson’s to receive your team toolkit to help raiseawareness of who we are and what we do. You'll also receive ourmembership magazine The Parkinson which has all the latest newsabout what the charity is doing. To sign up, call 020 7932 134 or visitparkinsons.org.uk/joinJoin the mailing list for our free twice yearly magazine Progress about thelatest research into Parkinson’s. Sign up using the above contact details.Like us on Facebook and follow us on Twitter to keep up to datewith the latest news from Parkinson’s UK. You can also watch ourvideos on YouTube and find photos from our events on Flickr.“ My advice for new volunteers is: ‘get stuck in’.Help in whatever way you can and be positive.”David, branch vice chairModule Two 29

Module three:Volunteering practicalitiesYou’ve joined a team of committed volunteers and staff whowork together to find a cure for Parkinson’s and improve thelives of those living with the condition. So, while you may benew to the organisation and are finding your feet, you’re notalone. Parkinson’s UK welcomes, encourages and valuesvolunteers. We do our best to provide everything you need toknow to carry out your volunteering role, from understandinghealth and safety issues to explaining how you claim expenses.“ Even if you’ve been avolunteer for years it’sstill important to do thismodule. This informationis here for you in one place,and you can always comeback to it if you need to.”What you’ll learnAt the end of this module, you canexpect to be able to: know what resources can supportyou in your role and explain whythey’re important an awareness of health haveand safety issues affecting yourvolunteering and explain why some identifybehaviour and decisions can bedetrimental to Parkinson’s UKElisabeth, VolunteerActivitiesThis module consists of three tasksand some top tips: Task one: Things you need to know Task two: Health and safety Task three: Being an ambassador Top tipsModule Three 31

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True/ False Every hour, two people in the UK are told they have Parkinson's. True/ False People with Parkinson's may experience difficulty swallowing food or drink. True/ False . t ,I Parkinson's only affects the over 50s. 5 True/ False The main symptoms of Parkinson's are tremor, rigidity and slowness of movement. True/ False 6 7

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