Helpline and Parkinson's advisers

They can help if you:

• have just been diagnosed and are looking for advice and information 
• are looking for tips on how to deal with the day-to-day impact of Parkinson's
• need support with caring for a partner, friend or family member with Parkinson's
• need emotional support
• want to find out more about the services available in your area
• want to learn about your rights and entitlements
• need help navigating the benefits process
• need information on where to find grants and financial help
• are looking for support on employment issues
• need support with anything else relating to your life with Parkinson's.

You can contact our free helpline:

• Call on 0808 800 0303
• Email: [email protected]
• Send your question: general enquiry form
• NGT Relay: 18001 0808 800 0303 (for use with smart phones, tablets, PCs and other devices. For more information see www.ngts.org.uk)
• Write to us: Helpline, 50 Broadway, London SW1H 0DB.

Our helpline can put you in touch with a Parkinson's adviser if you need more in-depth support. 

The helpline can get very busy. We answer as many calls as possible, but if you can't get through, please leave a message with your name and phone number.

Unfortunately, we can't return calls to numbers that bar withheld or anonymous numbers.

If you contact us by email or online, we'll come back to you within 5 working days. If you'd like a speedier response, it may be quicker to phone us.

If your email is complex, for example about medical issues or benefits entitlement, we'll do our best to answer it fully. However, it's sometimes easier to speak to you on the phone to make sure we have all the details we need to help you.

We know that there can be times that you might need information and support when our helpline is closed.

Our forum community is here for anyone with Parkinson’s, and the people who love and care for them, at any time. You can share information, experiences, and sometimes a virtual cup of tea.

If you're finding it difficult to cope and need emotional support, there are helplines and services that can provide help and support, at any time.

• Samaritans provide confidential, emotional support, 24 hours a day, 365 days a year. Call Samaritans on 116 123, or email [email protected].
• SHOUT is a free, confidential, text support service available 24 hours a day. Text SHOUT to 85258.
• Call 111 to get NHS mental health support. 

Always dial 999 in an emergency. 

We offer advice to people in the UK whose first language is not English, using a telephone interpreting service covering over 170 languages.

You can call the helpline directly on 0808 800 0303 and request an interpreter.

Healthcare professionals can also contact us, with their client's consent, and arrange for a helpline adviser and interpreter to call the client.

We are a member of the Helplines Partnership and our service has been accredited to the Quality Standard. This means we have demonstrated that we are committed to quality and offer a professional service.

Calls are free from UK landlines and mobile networks.

The helpline is able to offer information and support. It should not be used for diagnosing or treating a health problem or as a substitute for legal advice.

If you have, or suspect you may have, a health problem you should consult your doctor or specialist nurse.

Helpline calls are subject to monitoring by managers within the Telephone Services team and on occasion calls will be recorded.

We do this to train staff, motivate the team to adopt the highest standards of customer care, and to monitor and evaluate the service.

Our call recording policy is available on request.

Overview

We will only hold identifiable information when you access our service after explicit consent has been gained through a verbal confidentiality agreement.

If you do not wish to have a client record with identifiable information held on you we will still support you with your enquiry. However, there will be limits to the service we will be able to provide you. For example, we will be unable to arrange a home visit for you.

The confidentiality agreement exists between you and Parkinson's UK as a whole.

Identifiable information will only be passed within the charity as required for the management of the service or to meet your explicit needs.

Statistical information relating to clients is collected for managerial and supervisory purposes and may be shared widely, however this data is anonymous.

Your data will not be passed to external organisations without clear written or verbal consent.

However, there are certain circumstances in which we may be obligated to disclose your information to other organisations. See below for further information.

Confidentiality may only be broken when

• A client is perceived as a serious and immediate risk to themselves by information and support staff. This may include being actively suicidal.
• A client is perceived as presenting a serious and immediate risk to others.
• A client seems to indicate abuse to children or vulnerable adults.
• A contact indicates possible terrorist action.

What data we hold

We will only ask you to supply information that we need in order to provide the service you have requested. We will normally ask you to provide us with:

• Your name.
• Your contact details.
• Date of birth for identification purposes.
• Notes on your call and any relevant background information needed to support you effectively.

For monitoring purposes it's helpful for us to know what year you were diagnosed in, what your ethnicity is and how you heard about us.

We may also request other information where it is appropriate and relevant. For example, we might need your national insurance number to support you with a benefits claim.

Access to the information we hold about you

You have the right to request a copy of the information that we hold about you. Contact the Telephone Service Manager if you wish to do this.

Keeping personal data secure

We take our obligations to keep your personal data safe and secure very seriously.

• Your information will be held on an electronic client record system in accordance with the data protection law. Access to the system is tracked and monitored. Inappropriate access to a client record could be a serious breach of the charity's IT policy and may lead to disciplinary action.
• To enable us to deliver a high quality information and support service we hold both personal and sensitive data of clients of this service. We do not use this data for marketing purposes without consent.
• Sensitive personal information will only be kept on our client record system for as long as it is necessary. This means that non-financial data will be removed after 3 years if you have not had contact with Parkinson’s UK information and support. Any financial data we hold will be safely stored for 7 years.
• To ensure the confidentiality of people contacting us for support we will not leave answer phone messages when returning calls unless we have been explicitly told that this is OK. Phone numbers are withheld by information and support staff when making outgoing calls to clients.

The Parkinson's UK helpline 0808 800 0303 aims to provide a high quality service to people with Parkinson's, their families and carers, and to professionals working with them.

It's important that we know about any problems so we can deal with them quickly and effectively.

We recognise, however, that there are times when our services may not meet people's needs or expectations, and that occasionally things do go wrong.

When this happens it is important that we know about it so that we can deal with any problem quickly and effectively. It also helps us to continue to improve the quality of services that we offer.

If you have a complaint or would like to raise any issues informally, please contact us. All complaints are treated confidentially.

Informal complaints

As a first step, please contact the helpline on 0808 800 0303 or email [email protected] to see if the problem can be resolved.

All team members will do everything they can to put things right.

Formal complaints

If you are not happy with the response, do not feel comfortable approaching a member of staff directly, or you feel that the matter is a more serious issue, you may wish to make a formal complaint either by telephone or in writing.

Your complaint will be acknowledged in writing within 48 hours. Where possible, the investigation will be completed with 14 days.

If you are unhappy with the response you receive, you have the right to appeal. Details of how to do this will be included in the initial letter we send to you.

To make a complaint, or to get a copy of the full complaints procedure, please get in touch:

• Email: [email protected]
• Call: Kiran Chohan, Head of Shared Adviser Services, on 020 7963 3956.
• Write to: Kiran Chohan, Head of Shared Adviser Services, Parkinson's UK, 50 Broadway, London SW1H 0DB.

We also welcome all general feedback about the helpline whether comments or suggestions.