Last review date: 20 August 2018


We want to make sure that everyone has the best possible experience of using Join Dementia Research. We take complaints about our work, staff and levels of service very seriously.

We hope you will have a positive experience using Join Dementia Research, but if you would like to make a complaint, please follow the processes below. We will work to resolve your complaint as quickly and effectively as possible, and learn from it to improve the quality of our service.

We also value feedback about our service, whether positive or negative, as well as suggestions for how we can improve it. You do not need to use the complaints procedure to give us feedback and suggestions, but you can simply contact us on the usual details.

Complaints we can and cannot deal with

✓ Any user of Join Dementia Research can make a complaint.

We will help you progress any complaint, however we cannot resolve:

✗ Complaints about a research study or the study team staff involved in the study. Please follow the procedure in Item 1 to find out how to raise this type of complaint.

✗ Complaints about the telephone helplines. Please follow the procedures in Item 2 to find out how to raise this type of complaint.

✗ Complaints about your clinical care from your healthcare provider. Please refer to these useful links:

How to raise a complaint about Join Dementia Research

1. In the first instance, complaints should be informally raised with the member of staff concerned, at a local level. In most cases, they should be able to resolve your complaint quickly.

2. You can raise your complaint with the Join Dementia Research Manager:

  • in writing: If you would like to put your complaint in writing, you can either send this:
    • via email to
    • via post to Join Dementia Research Manager c/o NIHR CRNCC, Minerva House, 5 Montague House, London SE1 9BB.
  • over the telephone: If you want to speak to someone about your complaint, you can call one of the telephone helplines, who will forward your complaint to the Join Dementia Research team. However, this may take slightly longer to resolve due to the transfer of your complaint between the helpline and the central Join Dementia Research team.

Please note: it is advisable to put detailed complaints in writing, where possible, to ensure your complaints are comprehensively covered.

What information we will need from you

It would be helpful if you can provide:

  • Your full name and Join Dementia Research username, if you have it. You can make an anonymous complaint if you would like, but we will not be able to investigate your personal experience without this.
  • Your email address and/or postal address (so we can reply).
  • A clear, detailed description of your complaint. Please avoid sharing sensitive personal data wherever possible, to protect your personal privacy.
  • Copies of any letters or emails related to the complaint.
  • How you would like us to resolve your complaint and improve for the future.

We aim to respond to complaints within 10 working days. If we cannot progress your complaint within this time, we will let you know when to expect a reply.

What happens next?

When you have made your complaint, we will:

  • Send an email to you to let you know that we have received your complaint (if you have provided an email address).
  • Investigate your complaint thoroughly, fairly and quickly, while working to an agreed outcome.
  • Handle your complaint in a systematic, sympathetic and proportionate manner.
  • Resolve your complaint using a method of resolution agreed with you.

If your complaint describes a fault with both the Join Dementia Research team and the telephone helpline, then your complaint will be shared with the telephone helpline complaints team to allow investigation. A joint response to your complaint will be provided in such instances.

All complaints will be treated with an appropriate degree of confidentiality, and information will only be shared with staff as necessary to the investigation.

The purpose of this complaints process is to be able to resolve your dissatisfaction and where necessary, improve the quality of the service. Join Dementia Research will make every effort to resolve your complaints, including providing an appeals process.

What to do if you are not satisfied with the outcome of your complaint

If you are not satisfied with the outcome of your complaint, you can appeal by contacting the Director at the following address:

c/o Director Of Stakeholder Engagement and Communications, Join Dementia Research Complaints, NIHR CRNCC, Minerva House, 5 Montague House, London SE1 9BB.

Correspondence Guidance

To ensure that we can reply to your request, please ensure that you include your contact details such as a valid email or postal address or if you prefer, a phone number.

Although we aim to answer everything we receive, we are unable to provide a response if your correspondence:

  • Asks questions about topics outside of the Join Dementia Research responsibility
  • Contains offensive language
  • Is illegible or cannot be read
  • Is selling or promoting a product.

For independent advice on data protection and privacy

For independent advice about data protection, privacy and data-sharing issues, you can contact:

Item 1

How to raise a complaint about a research study or study team staff

Instructions on how to raise a complaint about a study or study team staff are in the Information Sheet that you will have been given when enrolling into the study.

If you cannot find your Information Sheet, or have only had discussions with study team staff through Join Dementia Research, you can email the Join Dementia Research team on or using our online feedback form.

Please provide the name of the study your complaint relates to and we will inform you how to raise your specific complaint

Useful links:

● NHS Choices: What is PALS (Patient Advice and Liaison Service)?
● NHS Choices: Find Patient Advice and Liaison Services (PALS)
Patient Advice & Support Service in Scotland
Community Health Council, Wales
Northern Ireland

Item 2

How to raise a complaint about the Join Dementia Research telephone helplines

The telephone helplines are provided by the three charity partners of Join Dementia Research: Alzheimer’s Society, Alzheimer’s Research UK and Alzheimer Scotland.

If you have a complaint about the service you have received from the helpline services then you will need to raise your complaint directly with the relevant charity using their own procedures:

● Alzheimer Scotland – Complaints Procedure.

● Alzheimer’s Research UK – please follow their Complaints Procedure, addressing your complaint to Claire Lucas.

● Alzheimer’s Society – Complaints Procedure.