Module 3: Volunteering practicalities

At Parkinson's UK, we're committed to promoting equality and valuing diversity in our work and organisational culture, including volunteering. We welcome volunteers from diverse backgrounds and work to ensure equal opportunities for all.

As a volunteer, you're also responsible for creating this culture of inclusion at Parkinson's UK. So, signing up to become a volunteer means carrying out your volunteering in a way that reflects the organisation's approach to equality and diversity.

More about equal opportunities and diversity

Equal opportunities and diversity policy (PDF, 248KB)

Through volunteering you may come into contact with information about those you engage with, whether that’s an email address, photograph or a person's name. It's important you're confident in identifying personal data, understand how we need to maintain confidentiality and what to do to raise any concerns about data to the charity.

The role you play in data protection is vitally important to ensure we maintain the highest standards regarding Data Protection and avoid the consequences of non-compliance. These consequences can be loss of trust, through to high fines. Some volunteers will need to complete more advanced Data Protection training. Your staff contact will let you know if that’s you.

Getting to know the basics

Personal data is information, which if put together with other information available, will identify a specific living person. Personal data types are names, addresses, email addresses, photographs, IP addresses, location, online behaviours and profiling data.

How we collect, manage and work with this information is covered by the General Data Protection Regulation (GDPR). Even though the UK has left the EU, GDPR has been retained in UK domestic law, renamed as ‘UK GDPR’. This means the key principles, rights and obligations remain the same. 

As part of the UK Data Protection Act 2018 and UK GDPR, there are seven key principles surrounding the use of personal data. It must be:

1. Processed lawfully, fairly and in a transparent manner: so we’ll tell people what personal information we want to use, why and how long we’ll keep it. 
2. Collected for specified, explicit and legitimate purposes and will not be used for a different purpose other than which we have told you. This means we can't collect your personal information for one reason, and then use it for something else. 
3. Adequate, relevant and limited to what is necessary for the purpose for which it was collected for. We must only collect the minimum amount of personal information necessary for the reason we want it for.
4. Accurate and, where necessary, kept up to date: any personal data we collect must be checked regularly to make sure it’s not wrong or out of date. 
5. Not kept for longer than is necessary: so we’ll delete it as soon as we no longer need the personal information. 
6. Processed in accordance with the rights of the data subject: We'll all have legal rights that we can use to limit, restrict or prevent organisations using our personal data. This means if someone acts on one of these rights, Parkinson’s UK is required to keep records and evidence to prove we’re complying with the law and have procedures in place to respond. 
7. Compliant with the data security principles set out in the updated GDPR legislation: the law states we must keep your information secure whilst it’s under our control. If personal information is lost or shared improperly, this is a data breach. 

There may be occasions where sensitive personal data is shared with you. Sensitive personal data includes race, religion, political opinion, trade union membership, sexual orientation, sex life, gender identity, health information, biometric data and genetic data. This could potentially be used to discriminate against an individual if used incorrectly. 

Data breaches

You should ensure any data you are collecting is stored securely. If data leaves the control of the organisation or person to whom it is trusted this is called a breach. Breaches can occur through deliberate action, for example a data theft or hack, or by accident through leaving registration forms on a bus or misplacing a laptop. If you think there has been a data breach regarding information entrusted to Parkinson's UK, please contact [email protected]. We have a set timeframe to report any breaches so your swift action is greatly appreciated.

We ask that all volunteers are mindful of when they come into contact with data about another person and ensure they are adopting safe practices. Specific examples are provided in this Data Protection briefing or the Advanced Data Protection training. If you are in any doubt about how to manage data you come into contact with, please stop and clarify with your staff contact.

If anyone asks about their rights to understand how the charity works with their data, please signpost any enquiries directly to our data protection officer: [email protected]. 

The charity owes a legal duty of confidentiality to the people we hold information about. That means restricting access to information to those who 'need to know'. Parkinson's UK does not sell personal data, and in general does not share it with third parties unless it is legally obligated to or has someone's consent.

Confidentiality is also an essential principle of the services we provide. So, to ensure that the people and organisations we work with trust us, it is vital that you understand what information we can and can't share.

As a volunteer, someone might share personal information with you in the course of your role. For example, a carer could discuss their finances. You must be careful not to share this information with others who don't have a strict need to know as it can easily become gossip.

Confidentiality is still important even if a situation might seem informal. Your staff contact can help with anything that you're concerned about around this issue and other formal support is available to volunteers in certain roles.

If your volunteer role involves handling confidential information, we'll ask you to sign a confidentiality pledge. If this applies to you, your staff contact will let you know, or you will see this on your volunteer record in Assemble. 

Do report confidentiality-related incidents to your staff contact as soon as possible so that any adverse effects can be minimised. Speak to them if you have any questions or concerns about this issue.

We take people's safety very seriously at Parkinson's UK. That means everyone who works or volunteers for the charity, or represents us, needs to show care and integrity to the people we connect with.

Safeguarding is about keeping vulnerable people safe, especially adults at risk of abuse, while protecting and supporting those who work and volunteer for us. It is important that you are aware of what to look out for and what to do if you're concerned about someone you meet through your volunteering.

Please read our safeguarding volunteer guides for more information about what to do if you become aware of a safeguarding issue:

• Safeguarding volunteer guide - England (PDF, 2.7MB)
• Safeguarding volunteer guide - Northern Ireland, Scotland and Wales (PDF, 2.7MB)

Talk to your staff contact about who to call in your area if you have a safeguarding concern.

If you are unable to reach them, or you are not a volunteer or group member and have any safeguarding concerns, please contact the designated protection officer on [email protected] or call 0344 225 9853.

We don't want your volunteering for Parkinson's UK to disadvantage you in any way, including financially.

So we'll reimburse all reasonable expenses that you incur when you carry out your volunteering activities for Parkinson's UK, according to our volunteer expenses policy.

Ask your staff contact for a volunteer expense claim form and submit your receipts with it.

More about expenses

• Volunteer expenses FAQs (PDF, 249KB)
• Volunteer expenses policy (PDF, 500KB)

If you are claiming state benefits, inform Jobcentre Plus about your volunteering. We can provide a letter confirming you are a volunteer if you need it.

In most cases, state benefits should not be affected if you are a volunteer. If you're claiming state benefits, you're allowed to receive expenses as long as they only cover out-of-pocket costs. If there's any kind of profit, your benefits could be reduced or suspended.

Speak to your staff contact if you would like to know more.

We hope that you won't experience any problems while you're volunteering, but know that issues can arise sometimes. For example, perhaps you're experiencing a problem involving another volunteer or are struggling to carry out your role.

Our problem-solving policy and procedure provides a framework for how we try to solve problems involving volunteers in an open, fair and timely manner.

Speak to your staff contact to find out more about how we can support you to resolve any problems you're having in your volunteering role.

More about problem-solving

Problem solving policy (PDF, 208KB)

We want to hear all your feedback, whether it's positive or negative.

You can give us your comments, complaints or compliments about anything to do with Parkinson's UK, in the following ways:

• Email [email protected]
• Call us on 020 7963 9324
• Write to us at Head of Involvement and Inclusion, Parkinson's UK, 215 Vauxhall Bridge Road, London, SW1V 1EJ

We hope you enjoy being a volunteer for Parkinson's UK. However, we know that sometimes people want to move on from their volunteer role, for a wide variety of reasons.

If you want to do this, please inform your staff contact, giving as much notice as you can. You will be asked to complete a moving on questionnaire to help us to learn from your experience.

There may be times when Parkinson's UK will need to end a volunteer role because of changes in circumstance, funding or organisational structure. If this happens, you'll have as much notice as possible.

You will also have the opportunity to discuss how you feel with your staff contact. Where possible and appropriate, you will be offered an alternative volunteer role.

You can find out more about moving on in module 4.