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For caregivers

As a friend or family member acting as a caregiver to someone, you may find yourself asking lots of questions around the clinical trials process, including what your role would be and what help there is available to you. While your focus may often be on supporting your loved one, it is important that you also take time to understand your own needs.

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How can I provide support?

Throughout the clinical trial process, you are likely to be providing more emotional support along with practical day-to-day help. 

If you are interested in helping your loved one find a clinical trial, you can support them in speaking to their doctor, who can try and help find a trial. You can also use our finder to search for a Galapagos clinical trial.

The clinical trial process will involve lots of information being provided. You can support your loved one through listening carefully, taking notes during appointments and keeping relevant files organized. You may also want to prepare by asking a list of questions, and feel free to speak up and advocate for your loved one if they are not able to.

While many of the questions you may want to ask are similar to those your loved one would ask, you may have some additional questions around your role, the support you would be likely to provide or where you can access help. Your doctor, or clinical trial coordinator where relevant, should be happy to answer all of these questions.

Your loved one will have numerous check-ins throughout the clinical trials process and will need to attend regular check-ups at the clinical trial site. As their carer, they are likely to rely on you to help maintain these visits – you may want to take responsibility of your loved one’s diary to help them keep track of appointments. 

While your loved one will have regular check-ups with doctors to check on their health and look for any side effects, you can help support the clinical team by ensuring they adhere to their treatment. It is also important that you are aware of any side effects to look out for so that you can discuss these, as needed, with the clinical trial team.

What support is available to me?

Caring for someone can be challenging and it’s very important to access support. Within the clinical trials process there are a number of ways you can get support:

  • Speak to a close family member or friend who you trust to ensure you’re talking about how you feel and sharing any practical responsibilities where possible.
  • Talk to your loved one’s doctor (or clinical trial coordinator) to discuss any specifics around the clinical trial if you are concerned. If your loved one gives consent, the doctor will be happy to talk to you about other aspects of care and practicalities around the clinical trial process, or to refer you on to someone appropriate.
  • Talk to your own doctor if you are struggling and need further support. They can refer you on to other professionals if you would like, such as a counselor.
  • Look up a local patient association. They often have support services and may have specific help and advice for carers.

I spoke to the health care professional about what I could do and how I could support my husband on the journey, and made it very clear that I saw this as us taking part in it, not just him"

Maxine, caregiver

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