The forum rules lay out how members relate to one another in our community. They relate to the discussion forum and the personal messaging service. Please read these along with our website terms and conditions and our forum terms and conditions.

What is the forum for?

Our forum is a place where people affected by Parkinson’s can share experiences, exchange views and support one another.

Who is it for?

The forum is here for anyone affected by Parkinson’s as long as you’re over 18. This means people with Parkinson’s, families, friends and carers. All are welcome to join.

Be respectful

  • Remember that people on the forum may be having the best or worst day of their lives. Don’t attack or abuse others or inflame situations.

  • Disagreement is fine but harassment, intimidation or verbal abuse isn’t. Don’t treat people on the forum with less respect than you would if you were standing in front of them.

  • Don’t misrepresent yourself or pretend to be someone else. It breaks trust and hurts the community.

  • Don’t be hateful. Respect the gender, religion, ethnicity and race of others. This includes threats, harassment, incitement, abuse, swearing, etc. Parkinson’s UK has the right to unpublish any content of this nature.

  • Don’t use bad language. Parkinson’s UK has a profanity filter set up to unpublish strongly offensive words. However, if a member is found to be swearing during their conversation, the moderators reserve the right to edit the thread, without warning and suspend the member until further notice. While some words will be treated as context specific, Parkinson’s UK does not condone swearing or any inappropriate word usage on the forum.

  • Give others the benefit of the doubt. If you’re offended by a post, consider whether the person who posted it meant to be offensive. People may be tired, stressed out or having a bad day.

Think before you post

  • Remember that everyone is entitled to their opinion. Before making a post, consider that people interpret things in different ways and what may be innocent to one person could be offensive or upsetting to another. Similarly, you might disagree with something someone has posted, but that does not mean they’re wrong.
  • If you respond to an post you find offensive, read your response before you post it and consider whether it is reasonable or whether it will make things worse. You always have the option of reporting it to the forum team. Arguments on the forum upset other users, not just those involved.


  • Use CAPITALS sparingly. Using capital letters in posts is considered to be shouting. They can also be difficult to read. Only use bold, italics and underlining to highlight parts of your post.

Don’t advertise or do research

  • While people on the forum may want to share information about products and services that have worked for them, the forum is not intended as a marketplace. We do our best to make sure that you are not bothered by spam. But we ask at the same time that you do not use the forum to sell products and services.
  • If you receive personal messages from anyone trying to sell you something or recruit you for a study or media campaign, please contact the Forum team.
  • We have a Research team who love to hear about new studies. If you [would like to approach the community to get involved in your study, contact them first. You can reach them at [email protected].

Keep it relevant

  • Be sure to post in the correct section of the forum and, if you must use links, make sure that they are relevant to Parkinson’s. Keeping to the correct section means that your post is likely to be read by those who are interested. You’re also likely to get more responses. We sometimes remove links that have nothing to do with Parkinson’s.
  • Don’t post the same message in more than one section. In most cases, this stops the flow of conversation and can be quite boring for those who are looking through the latest activity. Still, there are times where this might be appropriate.
  • If you think this is something that you would like to do but you’re not sure whether it breaks the rules, contact the Forum team for advice.

Stay safe

The forum is public and everything that is posted here can be found on search engines. People are not necessarily who they say they are on the forum. Keep yourself safe by sticking to the following rules:

  • Don’t use your real name or email address as your display name when you set up your community profile.
  • Don’t give out your real name or personal contact details in your forum posts or when messaging others.
  • Don’t share your passwords with others.
  • Forum members sometimes arrange to meet each other. If you decide to do this, do meet in a public place and use caution. Always make sure someone knows where you are.

Be legal - read the terms of use

The terms of use of this website set out your legal obligations that you agree to when using this site. Be sure you know what they are. The document is long, but you’ll only have to read it once. Only post content that you have written yourself. If you would like to share the work of another person that may be relevant, be sure to only use a short excerpt of the material and acknowledge the person who wrote it. If you would like to share the entire work, include a link to a place where other members can find it.

We will remove posts that breach copyright immediately. We really don’t have a choice on that.


Our team of moderators check the forum regularly to ensure that we are keeping to these guidelines and the terms of use. Where we can, we will try to moderate in a way that doesn’t interrupt the flow of conversation.

When you write to us - either by clicking on ‘Report post’ or by emailing [email protected] - we will get back to you as quickly as we can. During weekdays, this will normally be within five day. Note that if several people report a post using the ‘Report post’ link, we will only respond to the first person.

How to complain

Forum members sometimes prefer to complain about (or compliment) the charity using the forum. It is valuable to some users to know that others are aware of their complaints. But this isn’t the best way to contact the charity about these issues.

We have a dedicated feedback department that can address your comments, compliments and complaints:

Keep talking to us

We do our best to moderate the forum according to these guidelines and the terms of use but we sometimes miss things.

We rely on forum users to help us by letting us know. Email us at [email protected].