Community Voices (Join our focus group: Bone health and Parkinson's)

Parkinson's UK are currently working on a new information booklet about bone health and Parkinson’s.

Please note the minimum age for this volunteering role is 18.

To make sure we're producing the best information we can, we’re looking for the views of people affected by Parkinson’s and bone problems.

You may have a diagnosis of osteoporosis, which makes bones weaker and more likely to break. Or you may have had a broken bone since your Parkinson's diagnosis.

You may have Parkinson’s and bone health issues yourself, or you could be the family or friend of someone who has. Or you might support a person with Parkinson's who has had bone problems.

You may not have been diagnosed with a bone issue or had a broken bone, but are interested in bone health and how to reduce the risk of bone problems. This could include exercise, getting enough vitamin D or calcium through your diet or supplements, wearing a hip protector or other methods. If this sounds like you, we’d like to hear from you too.

We want to hear about what has helped you manage your bone health while having Parkinson’s.

Your thoughts and experiences will help shape what the new booklet will cover.

This could include:

• why bone health is important when you have Parkinson’s

• diagnosing bone issues

• medication

• preventing falls and what to do if you do fall

• practical tips to help keep your bones healthy

• information about professionals who can help and further support.

What is involved: You can provide feedback by joining an online focus group (using Google meet) or by filling in a short questionnaire in writing.

We’re looking for up to 6 people to attend the focus group and up to 6 people to provide written feedback.

Time commitment: 1-2 hours to attend the focus group, or up to 1 hour to fill in the written questionnaire.

Focus group time and date:

The focus group will be held at 2pm on Thursday 10 April 2025.

We will send some general questions before the focus group to have a think about, but there will be no need for any formal preparation or reading beforehand.

How to get involved

Please click the blue 'Click here to apply' button.

Sign-ups for the focus group will close on 4 April 2025.

If you prefer to fill in the written questionnaire, we will send this to you by email. The date for this to be filled in is Thursday 10 April 2025.

Withdrawing from the focus group

If you sign up to the focus group but later change your mind, you're very welcome to withdraw at any time. You don't have to provide a reason for withdrawing.

Confidentiality

Your written survey feedback will be kept confidential and not shared beyond the Parkinson's UK Health Content team without your permission. All feedback which is incorporated into the new booklet will be done anonymously.

Focus group participants will be asked not to share information shared in the session beyond the group. We will take notes, which will not be seen by anyone outside the Parkinson's UK Health Content team without your permission.

We really welcome you sharing your personal experiences in your feedback. These experiences will not be attributed to you in the booklet, but they will help us make sure that we include the most important topics, and that our information is accurate, relevant and sensitively written.

We will keep your feedback in until the information is reviewed, in 3-4 years time. After that point, it will be deleted. You can ask us to delete your feedback at any point and you don't have to give us a reason.

We will only pass on your information to others if we feel you or any individual are at risk of harm. If this is the case, then we have a duty of care to share that information as per Parkinson's UK's safeguarding policy.

Support for participants

We know that talking about Parkinson's symptoms or bone problems can be difficult.

We care about your wellbeing, so we have extended our Employee Assistance Programme (EAP) to cover volunteers. The EAP includes a helpline, listening service and can help you access further emotional support. There is no obligation to take this up, but it is there if you need it

Thank you for your help in shaping our information to make it as useful as possible.

If you have any questions, please don’t hesitate to ask.

The Health Content Team healthcontent@parkinsons.org.uk