1Fundraising Group Handbook

Handbook

Fundraising Group

2 Dementia UK

Contents1. Welcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

2. Setting up a Fundraising Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42.1. Fundraising Group Agreement2.2. Name and status2.3. Roles

3. Banking and cash handling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

3.1. Paying funds in3.2. Records3.3. Expenditure3.4. Restricting income3.5. Cash handling

4. Support from Dementia UK . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74.1. Insurance and risk4.2. Materials4.3. Resources

5. Fundraising . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85.1. Fundraising ideas5.2. Holding an event

5.2.1. Things to consider5.2.2. Venue and equipment5.2.3. Food safety5.2.4. Legal considerations5.2.5. Publicity5.2.6. Fundraising materials5.2.7. Health and safety5.2.8. Non-permissible events5.2.9. During and after your event

5.3. Sponsored challenges5.4. Collections5.5. Gambling5.6. Local companies5.7. Ethical considerations5.8. Charitable Trusts5.9. Managing donation5.10. Gift Aid

6. Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 136.1. Brand6.2. Media6.3. Digital

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7. Data Protection (GDPR). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147.1. Data protection law7.2. Personal data7.3. Processing of data7.4. Gathering consent7.5. Legitimate interest7.6. Contacting local companies7.7. Privacy Policy7.8. Holding data securely7.9. Keeping appropriate information7.10. People who don’t want to be contacted7.11. Reporting loss or theft of information

8. Dementia UK . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178.1. About Dementia UK

8.1.1. Vision and Mission8.1.2. Strategic Priorities 2017-20208.1.3. What does Dementia UK do?8.1.4. What is an Admiral Nurse?

8.2. Information about dementia8.3. Other ways of supporting Dementia UK

8.3.1. Legacies8.3.2. Regular Giving8.3.3. Volunteering

9. Honorary organisers and additional Fundraising Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

4 Dementia UK

1. Welcome Thank you for supporting Dementia UK by setting up a Fundraising Group in your local area. We are delighted to have your support and look forward to working with you. We are here to support you in your fundraising and awareness raising, as well as providing you with materials, information about the charity and the latest developments in new and existing services.

By helping spread the word about Admiral Nurses and Dementia UK, and fundraising to support the charity, you will be helping us in our goal to have an Admiral Nurse for every family who needs one.

This is your Fundraising Group Handbook which is full of information about Dementia UK and Admiral Nurses. It contains ideas for how you can get involved, guidance on how to run events, plus practical information such as how to pay in funds and request and correctly use fundraising materials. It also explains what we expect from you as a Group and what you can expect from us in return.

As a Fundraising Group for Dementia UK you are a part of the charity (as soon as you sign and return the Fundraising Group Agreement) and will be required to abide by certain rules and procedures.

Any questions you may have (that you can’t find the answer to in this handbook) can be referred to your contact at Dementia UK, who will be more than happy to help. You can find their details on the business card which is included with this pack.

Thank you once again for forming a Fundraising Group – your support means that we are able to be there for more families affected by dementia.

2. Setting up a Fundraising GroupThis section of the handbook will give you more details on the practicalities of setting up a Fundraising Group.

2.1. Fundraising Group AgreementAs well as your handbook, there is also a Fundraising Group Agreement, which will need to be signed by both the Group and Dementia UK. This agreement makes the Group a part of Dementia UK, showing you agree to be bound to Dementia UK’s policies and will follow charity law, the Institute of Fundraising Code of Conduct and the Fundraising Regulators Code of Practice, in relation to all fundraising activities.

Once signed by both parties, the Fundraising Group can officially fundraise for Dementia UK. The partnership will be reviewed annually to ensure that both the Group and Dementia UK are happy with the way things are working. If issues do arise there is a formal conflict resolution process that will be followed.

2.2. Name and statusThe name of the Group should include Dementia UK in its title, for example, ‘Preston Friends of Dementia UK’ or ‘East Sussex Dementia UK Fundraising Group’.

The Fundraising Group does not constitute a separate charity, and it should not be implied that it is such, or a local branch of Dementia UK. The Group are volunteers who undertake voluntary fundraising (and awareness raising) activities in their local community, on behalf of Dementia UK.

2.3. Roles It is up to the Group whether it adopts a formal or informal structure. However, both structures have certain rules which will need to be followed to comply with both Dementia UK protocol and charity law.

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Formal StructureWe would recommend adopting a formal structure, as this helps provide clear roles and responsibilities for Group members and helps ensure tasks get done. A formal structure will have members appointed to the roles of chair, treasurer and secretary. There can be additional roles, for example a social secretary, who organises events for the Group, or a publicity officer who is responsible for promotion.

Chair: The chair of the Group is responsible for chairing meetings, being the main contact for Dementia UK and encouraging and leading the Group in their activities. The chair should ensure Dementia UK is informed of any events coming up, be aware of brand guidelines and ensure any materials produced are sent to the charity for proofing before they are printed.

Treasurer: The treasurer is responsible for keeping well-documented, accurate accounts and providing details of any payments made to the charity. The treasurer will provide Dementia UK with information regarding donors for the charity to use to claim Gift Aid from HMRC – including Gift Aid envelopes or sponsorship forms which include Gift Aid declarations.

Secretary: The secretary is responsible for taking minutes of Group meetings and keeping a record of these, as well as any other administrative duties required for the Group. It may be that this person is responsible for overseeing data protection, but if not please nominate someone else to take on this responsibility.

Informal StructureThis structure doesn’t require the appointment of the three roles listed above, however there must still be someone who is the main point of contact for the charity, as well as someone who is responsible for the finances and someone who is responsible for data protection.

In a nutshell• Sign and return your fundraising agreement• Decide on your structure and roles

3. Banking and cash handling3.1. Paying funds in:

Funds can be paid to Dementia UK:

at a NatWest Branch: We will issue your Group with a paying in book – please ensure you use this.

online or by phone: Please use the following bank details and it is important to use your Group’s reference:

Account Name: Dementia UK Community Fundraising Groups

Sort Code: 60-04-24

Account Number: 10389784

Reference: __________________________________________________________________________________

(This is a designated account for our Fundraising Groups and will enable us to track and restrict your funds where agreed).

Please tell us when you have paid in funds so we can track this and allocate accordingly.

by Cheque: Made payable to Dementia UK and sent to Dementia UK, 1 Aldgate, London EC3N 1RE. Please always include your reference with any cheque.

Please do not send cash in the post. If you collect cash please pay it in at a NatWest branch or pay it into a Group member’s personal account and then transfer it using your reference so we know it’s from your Group.

6 Dementia UK

3.2. RecordsPlease keep a record of what your Group has raised using a Cash Control Form (Appendix 1) when counting up funds and recording total funds on the Income and Expenditure Return Form (Appendix 2), so we can cross reference it with our records and ensure they match up for our auditing purposes.

3.3. ExpenditureThere may be occasions where you require some funds for expenses relating to an event - for example, a deposit for a venue. In this instance, please fill in an Expenditure Request Form (Appendix 3). Dementia UK’s fundraising team will evaluate your request and ensure that it meets certain criteria e.g. will produce an appropriate return on investment. We are unlikely to be able to consider requests over £250. If your request is approved, the company providing the service can invoice us directly or we may be able to pay over the phone using our organisational credit card.

It is also possible for you to pay for expenses out of your own pocket and reimburse yourself out of the profit made, but please be mindful that fundraising events should always have a return on investment of at least 2:1 i.e. for every £1 spent £2 is raised.

Please do not pay any significant amounts (over £100) out of your own pocket without checking with us first, as we have experience around which activities are most likely to successfully yield funds, and may be able to advise you.

3.4. Restricting income Dementia UK will confirm in writing where funds raised by your Group will be allocated in advance of you signing the Fundraising Group Agreement. This may be to establish new, and/or maintain existing Admiral Nurse services in a specific county. If your Group is raising money for a restricted fund, or is ring-fenced to a certain area, then the following strapline should be used on all materials and press releases: ‘Raising funds to support the services provided by Admiral Nurses in [your agreed area]’.

Funds cannot be restricted without the agreement of the senior management team at Dementia UK, who will make their decision based on the priorities of the charity at the time.

For further details and information around the restriction of income, please see our Restricted Income Policy (Appendix 4) or get in touch with your Dementia UK contact.

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3.5. Cash handling Cash counting should be done in a secure space with at least two people present, and ideally should be counted using our Cash Control Form (Appendix 1). If you do not have a secure space available, you may wish to make contact with a local NatWest branch (Dementia UK’s bank) who may allow you to use their premises. Funds paid into the bank in cash should, where possible, be taken by more than one person and be paid in within three working days of the event. For your safety and to reduce risk, please travel by car or taxi to a secure destination when carrying significant amounts of cash.

Please ensure that you keep good records of where the cash has been raised and if anyone needs to be thanked for their involvement, either by the Group or the Charity.

In a nutshell• Keep detailed records of income and expenditure• Always count cash in pairs

4. Support from Dementia UKThere are a number of ways we can support you, including providing information to ensure your Group is complying with Dementia UK policy and charity law.

4.1. Insurance and riskThe Group’s activities will be covered under Dementia UK’s public liability insurance (please ask for a copy if you require it) but please note that:

• Dementia UK must be notified of all fundraising events

• third parties are not covered e.g. entertainers or musicians, so if someone were to have an accident as a result of their actions we would not be insured. You must ensure any third parties have their own public liability insurance and that you have a copy of this on file

• the Group must not sign any contracts without seeking the agreement of Dementia UK

• the Group must take a proactive approach to risk and complete a Risk Assessment (Appendix 8) for all fundraising events, which must be kept on file and made available to Dementia UK and other parties where necessary

• the Group must notify Dementia UK immediately about any accident or incident – including any loss or misuse of personal data

• our insurance policy currently covers storage of up to £500 at a Group member’s home

4.2. MaterialsAs a Fundraising Group for Dementia UK, you have access to a range of fundraising and promotional materials to use at events, as well as information to distribute in the community, to help raise awareness of the charity and the support available to families affected by dementia (see Appendix 5 and 6).

Once your status as an official Dementia UK Fundraising Group is confirmed, we will send you a ‘starter pack’ containing a number of these materials.

8 Dementia UK

4.3. ResourcesWe can send regular e-newsletters to keep you up to date with organisational developments: the Dementia UK e-news and the Community and Events Fundraising newsletter. These can be sent to the whole Group, or the chair to distribute, please let your Dementia UK contact know which you would prefer.

In a nutshell• Notify us about all events• Always complete a risk assessment for events• Make use of Dementia UK’s promotional and fundraising materials

5. Fundraising5.1. Fundraising ideas

There are many ways that you can fundraise for Dementia UK. For tips and inspiration, please see our fundraising guide enclosed.

Your Dementia UK contact will support you and work with you on fundraising and event ideas that can work for your Group.

5.2. Holding an eventHere are some of Dementia UK’s top tips for a fundraising event. Please notify us as soon as possible of any events that you plan to hold using an Event Notification Form (Appendix 7).

5.2.1. Things to consider• planning: Firstly, decide what you want to achieve from the event; is the main focus to raise funds, or are you

also hoping to raise awareness? Are you looking for donations at the event, or will the fundraising come from ticket sales?

• choose a realistic target: How many people do you want to attend? How much do you expect to raise? You can use this figure when working out the cost of the event, to make sure you’re staying on track. We ask that you ensure that no more than 50% of what is raised is spent on costs

• logistics: Where and when will your event take place? Always give yourself lots of time to arrange it. The date can be crucial to ensure good attendance, so check - are there other big events happening in your community? Be careful not to clash with these. Is it in the school holidays, when people might be away?

• write down your plan: Set a timeline with deadlines and targets to make it a manageable process; it can help to work backwards from the date of the event

5.2.2. Venue and equipment Once your plan is in place, the first thing you should arrange is your venue.

The venue needs to be fit for purpose. If you are planning on serving food and drink, you will need to ensure there is a kitchen and fridge. You will need to find out if the venue requires you to use their catering staff or if they will allow you to bring in food and drink. Many venues will waive the room hire fee if your guests are buying food from them– but you will need to work out the cost benefits of this. If you have entertainment planned, enquire what audio/visual support the venue offers, and at what cost.

Your venue should be easy to find and accessible to all of your guests. Choose your venue carefully based on the guest numbers you can realistically expect. Too many and you need to restrict attendance; too few and it might affect your profit.

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5.2.3. Food safetyEnsure that food provided at events is clearly labelled for allergy and dietary information, and stored correctly (in fridges if needed). The Food Standards Agency has guidelines on preparing food for charity and community events which you must read carefully before running events involving food, you can find the relevant link on the www.food.gov website or via our Fundraising Groups Hub.

5.2.4. Legal Considerations All events run must state clearly that they are in aid of Dementia UK and use our ‘in aid of Dementia UK’ logo which you can ask your Dementia UK contact for. Our charity number should be in small print on all printed materials: ‘Dementia UK is a registered charity in England and Wales (1039404) and Scotland (SC047429)’.

You may need to apply for permissions or licenses (for example, for collecting funds or raffles.) Investigate this early on in your planning and speak to your Dementia UK contact for advice.

5.2.5. PublicityPeople need to hear about your event if you want them to turn up! Start by telling your friends, family and colleagues, and ask them to spread the word. Contact local businesses and community centres, and ask if they would put a poster up. We can supply some ‘empty belly’ posters that can be tailored to your event.

For your poster, think about why people would want to attend. Is it at a unique venue? Will there be good entertainment? Is there an interesting menu? The cause itself is important so make sure posters and advertising materials make it clear your event is for Dementia UK.

Use social media to spread the word about your event, making sure again to prominently mention Dementia UK. Create an event on Facebook, invite all of your contacts, allowing them to invite others. You can ask your Dementia UK contact for advice about posting on social media.

5.2.6. Fundraising materials Ask your contact at Dementia UK to email you an ‘in aid of Dementia UK’ logo JPEG or you can find it on the Fundraising Group Hub. You can use this on posters, tickets and any other materials, but please send materials to us for approval before printing.

We have a small number of roll up banners for large events, which we can send out to you. You will need to return the banner to us within one week of your event.

5.2.7. Health and Safety It is important that health and safety is considered at all events, and that every care is taken to keep attendees safe. Our risk assessment will prompt you to consider trip hazards, fire safety, electrical safety and so on. Please make sure you complete a risk assessment in advance of all events and follow the processes necessary to be covered by our insurance (see 4.1).

5.2.8. Non-permissible events Given the link between alcohol and dementia, it is not appropriate to organise any events or activities where the excessive consumption of alcohol is a primary purpose e.g. a pub crawl. It is fine to have alcohol served or sold at an event e.g. a pub quiz.

For insurance purposes we need to know if alcohol is being consumed at any event you run; there is space to note this in the Event Notification Form (Appendix 7).

There is also a link between head injuries and dementia, it is not appropriate for a Group to put on an event that involves boxing; this includes boxing using head guards.

10 Dementia UK

5.2.10. During and after your event

On the day Ensure you have enough volunteers to help out at the event. Ask us if we have a Volunteer Ambassador in your area that we can put you in touch with. If you wish, Volunteer Ambassadors may be able to give a talk about Dementia UK at the event.

Is your venue easy to find? Consider putting signs up outside the building.

Put any cash donations on the day somewhere secure – a sealed fundraising bucket or tin is advised. Ask for cheques to be made payable to ‘Dementia UK’ or your Group bank account name.

Take lots of photos. Try to get Dementia UK branding in as many as possible.

After the eventShare your success with the local press by writing a press release and sending them your photos. This will help inspire other people to do the same as well as raising awareness about your Fundraising Group and Dementia UK. Speak to your Dementia UK contact for tips on how to do this, or to be put in touch with our Media Team.

5.3. Sponsored challengesA great way to raise funds can be through taking on a challenge. Dementia UK has a wide range of sporting and challenge events including walks, runs and cycle-rides that will appeal to a cross-section of abilities; for more information visit our website or get in touch with your contact. Please note, if you are undertaking a challenge event that Dementia UK has bought a ‘bond’ place for, we will not be able to restrict the funds raised to your local area; this is because those places have costs associated with them and are budgeted to raise money for our core services.

Alternatively, create your own challenge. This could be learning a new skill, giving up chocolate for a month or taking part in a ‘yoga-thon’ or sponsored silence.

Setting up an online fundraising page is the most effective way to raise sponsorship. It is important to tell your story; what is your personal motivation for raising money for Dementia UK and why you are undertaking this particular challenge. There are several online giving sites, the most popular ones are JustGiving and Virgin Money Giving, and, if needed, we can help you set up a fundraising page. Once your page is ready, send it to your contacts by email and share it on social media both before and after completion of the challenge. Funds come to us directly, so please let us know when pages connected to your group are set up and we will ensure the money is correctly allocated.

Some employers will match fund their employee’s fundraising totals, so it is worth checking whether this applies.

5.4. CollectionsHere is some information on the different types of collections and the permission that is needed to carry them out safely and legally.

Private collections – Held on privately owned land, e.g. a shopping centre, café or pub. You will need the permission of the landowner/manager who may ask to see a letter of authority from the charity, confirming that you are collecting for us. Ask your contact at Dementia UK for this.

Street collections – Speak to your local authority for permission to collect in the street. Each council is different and will require you to fill in their application form. We would encourage collectors to wear a Dementia UK t-shirt, and it is a legal requirement to have a letter of authority from the charity, which

11Fundraising Group Handbook

you will need to keep with you on the day. You will need to report back to the local authority after the collection with details of how much was raised and when. Failure to report back can lead to future applications being refused so it is important to do so in good time. Please read and sign our Street Collection Guidelines and Agreement (Appendix 9).

House-to-house collections – Dementia UK asks that you do not carry out house-to-house collections.

Static box collections – This means leaving a collection tin in one place i.e. a local shop and it would be a great help if your Group is able to aid us with this. You will need the permission of the owner/manager of the site to do this, and please ensure that you are able to go back to collect the funds. You may then be able to replace the tin or reseal it to be used again. Please read and sign our Collecting Tin Agreement (Appendix 10).

All of these collections require you to follow these rules:

• make sure you have the right permission for the type of collection you are holding

• you must inform Dementia UK of all collections in advance

• all collectors must be volunteers (i.e. not paid for taking part in the collection) and should be over the age of 16

• all collectors should carry a letter from Dementia UK confirming they have permission to collect on our behalf, as well as a copy of the license/permission to collect that has been granted by the landowner/manager or local authority

• all collection buckets/tins should be official Dementia UK items and clearly labelled as such. These must be securely sealed with official seals from Dementia UK

• collectors must not cause an annoyance or inconvenience to the public and this includes shaking or rattling tins and buckets. However, it is important to smile and engage with the public, and to let them know that you are supporting Dementia UK. As representatives of the charity, it is important that collectors have a basic knowledge of what the charity does (we can provide you with a crib sheet if needed)

• please see section 3 on cash handling

5.5. GamblingRaffles, lotteries and bingo nights are all forms of betting and are strictly regulated by law. Dementia UK does not have a lottery license; please do not apply for one on our behalf.

It is fine to do a raffle, sweepstake or tombola at an event. The expenses deducted from the proceeds must not be more than £100, and no more than £500 can be spent on prizes.)

The Group is responsible for fulfilling all gaming legal obligations and responsibilities. Further information can be found at the government website, this can be accessed through Dementia UK’s Fundraising Groups Hub.

If you have any questions or concerns about any of the above then please get in touch with us.

5.6. Local companiesYou might know of local companies, or local branches of national companies, who have Charity of the Year partnerships i.e. choose a charity to support for a year or sometimes more, or who give one-off donations. You could also invite local companies to get involved in your fundraising activities, for example:

• corporate sponsorship for an event

• employees attending a fundraising event

12 Dementia UK

• employees organising their own fundraising event

• matched fundraising

• providing a gift-in-kind e.g. prizes or refreshments for an event

Consider getting in touch with your local contacts e.g. the bank manager, to ask about these possibilities.

Please do not approach any national companies or branches of national companies without checking with your contact at Dementia UK first. We might have an existing relationship with them already, or we might be working on a partnership approach and need to avoid any duplicate approaches or potential conflicts of interest. Please get in touch and we will advise on this.

5.7. Ethical considerationsThere are a few sectors and events that Dementia UK and Groups / individuals fundraising on our behalf cannot work with, as these conflict with the charity’s mission, vision and objectives. As mentioned in Section 5.2.8, these include boxing events and events which take place with the primary purpose of excessive alcohol consumption.

Please see our Ethical Policy (Appendix 11), and if in doubt please get in touch.

5.8. Charitable TrustsPlease do not apply to charitable trusts for grants. We carefully research and plan applications to trusts, which need to be co-ordinated by our head office.  If you have any contacts at trusts or foundations, please do get in touch to discuss them.

5.9. Managing donationsIf you are given donations directly, please ensure that you:

• send a letter of acknowledgment to all donors, using Dementia UK’s letterhead (a sample letter can be found at Appendix 12), making it clear you are writing on behalf of the Group (by signing off with your name and position in the group) within five working days

• keep accurate records of donations received and details of thanks sent

• use a Cash Control Form (Appendix 1) to total up funds and pay these funds into the Dementia UK account or your Group’s account

• do not retain supporter contact details for longer than is absolutely necessary and ensure that these are held securely. Please see section 6 for information on data handling

• In Memoriam donations should be sent directly from funeral directors to Dementia UK. Please do not collect In Memoriam donations or contact funeral directors yourself, as we have a relationship and systems set up with a significant number of them

• we will provide you with thank you cards to pass on to people who have made donations. If appropriate we are also happy to thank the donor for their support, just let us know about the donation so that we can do this

5.10. Gift AidGift Aid is a valuable additional income to the charity. Dementia UK can claim an additional 25% of the donation back from HMRC, at no additional cost to the donor/fundraiser.

There are strict guidelines around what is, and isn’t, eligible for Gift Aid (for example, entry tickets and raffle tickets are not eligible). These guidelines need to be followed to ensure we are able to make a successful claim. Please note we are unable to restrict Gift Aid to your area. Please do not contact HMRC yourself; we will keep you updated on any claims. Please see Appendix 13 for guidance on Gift Aid eligibility.

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6. Promotion6.1. Brand

We have included a copy of our brand guidelines for Groups (Appendix 15) with this booklet.

The ‘in aid of Dementia UK’ logo, and our charity number ‘Dementia UK is a registered charity in England and Wales (1039404) and Scotland (SCO47429)’, should appear on all materials promoting an event fundraising for Dementia UK. As mentioned earlier, please send materials for us to approve before printing. The value of a strong brand is to build trust with supporters and also families living with dementia to help raise more vital funds to support our work. It’s important that the materials we create are authentic and consistent in tone and style.

Dementia UK’s logo should not be used by third parties without our permission. If anyone asks you about using our logo, please put them directly in touch with us.

6.2. MediaLocal media coverage is a great way to encourage support for your Fundraising Group, events and, of course, to raise awareness of Dementia UK and the work of Admiral Nurses. Keep the contact details (and deadline dates) of your local newspaper and radio station to hand in case of big events that you would like to inform them of.

Speak to our media team before you approach your local media, your fundraising contact can put you in touch with them. They can give you up to date information on Admiral Nursing services, as well as tips on doing interviews and writing press releases. If you would like to take part in media training, which will help increase your confidence in speaking to journalists, then please let us know.

We are able to provide you with:

• sample press releases

• sample photo calls

• sample letters to the editor

• information on what to include

• information about Dementia UK, Admiral Nurses, our national Helpline, and dementia more widely

6.3. DigitalWe ask that you do not set up a separate website for the Group. We can discuss the setting up of a Group page on Facebook with you, and will work with you on this.

Please remember that you are representing Dementia UK in social media posts from the Group. Here are some things to be aware of when using social media for your Group:

• you are personally responsible for the content you publish online. Everything you post will be visible and searchable for a long time. Think about what you want to say in advance

• please post meaningful, respectful comments when discussing Dementia UK and your volunteering work. Avoid remarks that are off-topic or could be perceived as insensitive by others

In a nutshell• For all events do a detailed plan with timelines• Always consider food safety and the health and safety of the general public• Be aware of the rules around collections, raffles and lotteries

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• keep it appropriate and polite if you disagree with someone’s opinions. If you find yourself in an antagonistic online situation, disengage from the dialogue in a calm and polite manner

• double check your posts and comments for typos before you post

7. Data Protection (GDPR) 7.1. Data protection law

Data protection has for a long time been an important issue for charities. As a Group affiliated to - and acting on behalf of - Dementia UK, it is important that Fundraising Groups act in accordance with our guidance. It may be that you are approaching friends and personal contacts to support your activities, but nonetheless all data needs to be managed in a way that is compliant with legislation.

New EU data protection law, known as General Data Protection Regulation (GDPR), is now in force. It enhances regulation and is policed by the Information Commissioner’s Office (ICO). The aim of this law is to ensure that organisations treat the personal data of individuals with respect and to strengthen trust between organisations and individuals. In essence, it must be made clear to people what we are doing with their data and why we are holding it.

Charities that do not process data lawfully and do not hold it securely risk a very significant fine (a number of charities have had large fines as a result of previous breaches), as well as reputational risk. As a Fundraising Group connected to Dementia UK it is essential that you follow our data protection rules and procedures to protect the Charity and the Group. We suggest the Group secretary or someone else is nominated to take on responsibility for overseeing data protection. We know that this may sound daunting, but we are here to help and advise you with this process.

7.2. Personal dataWhat is personal data?‘Personal data’ is information relating to a living individual and includes anything that can make the person identifiable such as their name, address or email address.

‘Sensitive Personal Information’ relates to information including ethnic/racial origin, health, political affiliation and so on.

7.3. Processing of dataWhat is data processing?‘Processing’ means any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, including collection, recording, organisation, storage and erasure.

How Groups may wish to use dataYou might wish to hold the names, addresses and contact details of people who:

In a nutshell• Always use the ‘in aid of Dementia UK’ logo and our charity number

on promotional materials• Local newspapers and magazines can be a great way to generate

publicity, as can social media. Please follow our guidance

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• are or have been a Group member

• attended or were approached to attend an event

• have requested to be kept up to date with your Group’s activity

• made a donation to your Group/Group’s event

• contacted you with an enquiry or question

You might want to use this data to:

• invite them to participate in local events and activities, or make a donation

• update them on your Group’s activities

• let them know when you achieve key milestones

How to manage dataThere are a few key things to think about when holding and processing data:

• purpose: Are we clear on why we are holding data and is it justified? Is any of the data sensitive? If so, is it absolutely necessary to hold it? Can only those who need to see it access it?

• transparency: Have we made it clear to the person what we are doing with their data?

• consent: Do we have consent to make contact again?

• legitimate interest: If we do not have consent to contact someone, can we use legitimate interest? (More information below).

• security: Are we holding personal data securely?

Also, it is important to note that additional rules apply to email. Contacting individuals by email is covered by PECR (Privacy and Electronics Regulations) and therefore getting consent from individuals to use email as a means of contact is particularly important as we/you aren’t able to contact individuals by email without consent (companies or organisations are not covered by PECR, see section 7.6.)

7.4. Gathering consentIf someone gets in touch to tell you that they are doing an event or activity in aid of your Group, you do not need consent to contact them again regarding this particular event. However, you would need consent to email them about other activities, even if they are similar, or to provide them with general email updates.

Consent can be verbal or in writing depending on the circumstances, and people need to ‘opt in’ to communications (it is not appropriate to assume someone is happy to be contacted if they don’t ‘opt out’). You will need to keep clear records of the consent given including the date it was received and what exactly you have received consent for; a template has been supplied to help you gather data effectively – you can find this on the Fundraising Groups Hub or your Dementia UK contact will send you a copy. We have also provided you with a form you can use to gather consent and the wording to use to get consent from people that you are already in touch with or to give them the chance to opt out of further contact (Appendices 14a and 14b). Please note that it is fine to also get consent verbally, please just use the same wording.

Individuals can opt in to hear from your Group and/or Dementia UK. If someone opts in to hear from Dementia UK, please send their details to your contact at Dementia UK who will action this.

7.5. Legitimate interestIf you don’t have consent to contact someone but you feel it is in the Group’s and the person’s own interest to hear from you, then subject to doing a Legitimate Interest Assessment it may be appropriate to contact them by post or phone, as long as their number is not registered with the Telephone Preference Service. For example, if

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someone has taken part in a fun run the previous year and you are running the same event again. It would only be appropriate to contact someone once using legitimate interest. For further guidance on this please get in touch with your Dementia UK contact.

7.6. Contacting local companiesCorporate email addresses do not come under PECR (see 7.3.), therefore, if you do not have consent you can use legitimate interest to contact companies by email when their contact details are on their website. For example, you see on a solicitor’s website that they like to be involved with local charity events, so you approach their Office Manager to advertise your quiz night to their employees, or you contact a local supermarket to donate food to a local event.

You need to make sure the individual that you are contacting knows that they can opt-out of communication at any time, and also that they are aware of our Privacy Policy.

7.7. Privacy PolicyA Privacy Policy declares what information you collect and what you do with it. Dementia UK’s full Privacy Policy can be viewed on our website at www.dementiauk.org.uk/privacypolicy

It is important for Groups to make their supporters aware of how data is being used and stored. The consent form (Appendix 14a) has a privacy notice (a short statement which, depending on the space available, summarises our Privacy Policy and directs to it) and it is important to make sure that you always act in accordance with our policy and do not share a person’s data with any third parties.

7.8. Holding data securelyPersonal details of donors should only be recorded and held for a clearly identified purpose e.g. someone has supported you already and expressed an interest in hearing about future events.

Details should not be kept unnecessarily e.g. if someone has not responded to a few approaches such as invites to attend an event or requests for support, it is probably appropriate to remove them from your contact list. The right time to remove somebody is a judgement call you will need to make – do check with Dementia UK if you would like some guidance.

Details of donations made should be kept for six years and it may not be appropriate to keep them beyond this period, especially if further donations have not been made.

Electronic data should be held in password protected documents (i.e. Excel and Word) and hard copies in locked drawers. If you need to email a document, please make sure the password is not included and that this is shared in a different way e.g. by phone or text.

When data is no longer needed please double delete this from your computer (i.e. make sure you delete it from the recycling folder/trash) and shred any paper records.

7.9. Keeping appropriate informationOnly keep appropriate information: you should not hold any information that is sensitive or not directly relevant to the purpose for which you are holding it. You should be aware that we may need to share the information that you hold on someone should they make a ‘subject access request’ i.e. an individual is entitled by law to request to see all the information that is held on them.

So, it may be appropriate to record topline information relating to why someone is fundraising for you if the person openly shares this e.g. their mother has dementia, as this may help you give them the support and encouragement they need around their event. However, it would not be appropriate to store specific details relating to the medical condition as this would be sensitive information and not necessary for the purpose we are using it for.

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Also, please avoid storing any personal information that is picked up, or comments regarding an individual’s personality or likelihood to give in the future etc.

If you do get a ‘subject access request’, please refer this to your contact at Dementia UK immediately and do not delete any information or emails relating to the person.

7.10. People who don’t want to be contactedIf someone asks not to be contacted again, please mark ‘do not contact’ against their name, and ensure they are not contacted again. Please make sure you pass this information on to Dementia UK within a week so we can also update our central records.

The risk of being removed completely could be that they are contacted again in the future as no record is held of their wish not to be contacted. If they do want to be removed completely please do so and again please ensure Dementia UK is informed promptly so that we can update our records.

7.11. Reporting loss or theft of informationIt is essential that you look after data as best you can and store it as securely as possible. If any data is lost, stolen, damaged or used unlawfully please immediately notify your contact at Dementia UK and we will determine the best course of action, as it is a requirement to quickly report any significant data loss to the Information Commissioner’s Office.

In a nutshell• It is important groups are compliant with GDPR• Only hold data you really need• Make sure all data is held securely• Do not hold sensitive information

8. Dementia UK8.1. About Dementia UK

8.1.1. Vision and Mission

Our VisionSpecialist and compassionate dementia support for all families that need it.

Our MissionTo lead and deliver high-quality expert and accessible dementia care through Admiral Nursing.

8.1.2. Strategic Priorities 2017-2020: 1. Increase Admiral Nurse coverage across the UK, so that all families who need an Admiral Nurse can get one

2. Raise awareness and understanding of Admiral Nursing throughout the UK to enable the charity to further develop services and support

3. Provide robust evidence for the effectiveness of Admiral Nursing

We will measure our success by:

• increasing the number of Admiral Nurses by 50%

• increasing the number of people contacting the Admiral Nurse Dementia Helpline by 50%

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• Admiral Nursing being nationally recognised as essential to the dementia pathway

• families receiving the support of an Admiral Nurse expressing a high level of satisfaction with the services provided

8.1.3. What does Dementia UK do?Dementia UK offers specialist one-to-one support and expert advice for families living with dementia.

When things get challenging or difficult for people with dementia and their families, Admiral Nurses work alongside them, giving the one-to-one support, expert guidance and practical solutions people need. They were named by the family of Joseph Levy CBE BEM, who founded the charity. Joseph had vascular dementia and was known affectionately as “Admiral Joe” because of his love of sailing.

The unique dementia expertise and experience an Admiral Nurse brings is a lifeline - it helps everyone in the family to live more positively with dementia in the present, and to face the challenges of tomorrow with more confidence and less fear.

We believe passionately that everyone who needs the support of an Admiral Nurse should get one – that’s why we’re working hard to increase the number of nurses across the UK.

8.1.4. What is an Admiral Nurse?Admiral Nurses deliver specialist dementia care to people with dementia and their families.

Admiral Nurses have significant clinical experience in working with people affected by dementia before coming into post; and once in post they are expected to continually and systematically develop their knowledge and skills in dementia care, and demonstrate this through use of an ‘Admiral Nurse Competency Framework’.

Admiral Nurses:

• provide specialist practical advice and emotional and psychological support from diagnosis to post-bereavement, helping people affected by dementia to deal with their feelings and learn coping strategies

• act as a single point of contact, helping to join up different parts of the health and social care system, and meeting people’s needs in a co-ordinated way

• give knowledge to understand dementia and its effects, and have the skills to improve how to communicate with someone living with dementia

• offer advice on referrals to other services and liaise with health and social care professionals on a person’s behalf, sharing best practice so they get the best care possible

• support people at difficult times in their dementia journey, including when the condition progresses, or when tough decisions need to be made, such as moving a family member into residential care

Admiral Nurses’ work is complex and requires them to be highly-skilled practitioners operating within an advanced level of practice, often working autonomously, but also sitting within a wider team or service with other healthcare professionals.

You can find out more about our work on our website www.dementiauk.org. You can also direct people to our website if they have any questions about areas that our Admiral Nurses operate in, including a map of our services, as well as information about the Admiral Nurse Dementia Helpline – our national telephone and advice service.

8.2. Information about dementiaDementia is a term that is used to describe a collection of symptoms including memory loss, problems with reasoning and communication skills, and a reduction in a person’s abilities and skills in carrying out daily activities.

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There are many different types of dementia including:

• Alzheimer’s disease

• vascular dementia

• Lewy body dementia

• frontotemporal dementia

It is a progressive condition and, although there are some treatments that can slow progression, there is currently no cure.

We’ve included more detailed information about dementia and the different ways that people can be affected in the appendices.

8.3. Other ways of supporting Dementia UKThere are lots of other ways that people can support Dementia UK.

8.3.1. Gifts in Wills Supporters may wish to remember Dementia UK in their Will. If you come across anyone who would like to do this, please let us know and we can ask our Gifts in Wills Manager to contact them if appropriate. We may not be able to restrict legacy income to the area that the rest of the funds go towards, however we are able to recognise the amount in the Group’s fundraising total if the legacy giver acknowledges the Group in their directive.

8.3.2. Regular Giving Supporters might like to make a regular donation to the charity and we would be very grateful if they were to do this. We are able to set up regular monthly, quarterly or annual donations at the charity’s head office. Please instruct supporters to get in touch with our Supporter Care team on 0300 365 5500 to arrange this over the phone, or they can go to www.dementiauk.org/donate to do this online. Please note regular gifts cannot be restricted to your area.

8.3.3. Volunteering Dementia UK has a network of Volunteer Ambassadors who carry out a range of activities on behalf of the charity, including delivering talks, attending cheque presentations, and raising awareness of the charity and the services that our Admiral Nurses provide. There may be a Volunteer Ambassador in your area who can help with any events that you arrange, including talking about dementia and the charity. There is no obligation to invite any local Ambassadors along but it may be worthwhile working together where appropriate. If a member of your Group would also like to be an Ambassador please do get in touch.

9. Honorary organisers and additional Fundraising GroupsHonorary organisers are individuals who act on their own, raising funds for Dementia UK, in the same way as larger Fundraising Groups. If there is a Fundraising Group and an Honorary Organiser in the same area, you may wish to join forces, but equally, you are more than welcome to operate independently. If there is more than one Group/Honorary Organiser in an area we will give you different references for payments so that we are able to keep a record of what has been raised by whom. We will ring-fence the fundraising from these Groups/Honorary Organisers together so there is a full total for the area, but will be able to record the income separately.

The contents of this handbook are applicable to Honorary Organisers, but some of the procedures may need adapting.

Dementia UK is a registered charity in England and Wales (1039404) and Scotland (SC047429)

www.dementiauk.orgfundraising@dementiauk.org

020 7697 4052

We receive no government funding and rely on voluntary donations, including gifts in Wills. For more

information on how to support Dementia UK, please visit www.dementiauk.org/donate or call 0300 365 5500.

dementiauk dementiauk DementiaUK1 dementia_uk