Why should I consider taking part in a clinical trial?

Why should I consider taking part in a clinical trial?
There are many reasons why people agree to take part in a clinical trial. The important thing is that they understand the trial and give their consent to take part, whatever their reasons.

Whatever your reason for thinking about joining a clinical trial, it is important that you talk to your doctor or healthcare team, to discuss the possible risks and benefits and to make sure that you understand what the trial will involve before you join. This discussion may take place over several appointments, and might include discussion of the Informed Consent Form, which is the formal document that you would sign if you decided to join a clinical trial. The Informed Consent Form can be quite long, as it is important that all of the information about the trial is explained clearly. You should have the opportunity to read the document carefully, discuss it with your doctor, and take some time to think about your decision before you sign the form.

• Helping future patients – Many people agree to take part in a clinical trial to help progress medical science. Clinical trials make a huge difference to the lives of patients further down the line and some people like to know that something positive can come out of their illness.
• Personal benefit – Many people also join a clinical trial in the hopes of personal benefit. Some patients may hope that the new drug can help them if all other options have been tried. Other people join to learn more about their condition or because they feel that a trial will give them faster access to specialised healthcare.

It is important that people consider the possible risks of taking a new drug, as well as the possible benefits. There is no guarantee that the new drug or new treatment combination will be any better than the standard treatment and the side effects could be much worse. A clinical trial is run to find answers, such as whether a new drug is better or safer, so there are some questions that cannot be answered until the trial is complete.

How can my family, friends and carers support me?
When you are diagnosed with a serious illness, it is hard for family, friends and carers to know what they can do to help. There are a number of ways that they can support you, so you can get the most out of your treatment.

Not everyone looking after somebody with a serious illness sees themselves as a carer; instead, they can see themselves as ‘just doing their bit’. However, recognising that they are a carer can help them to get the best support. Some examples of how your family, friends and carers may want to support you are:

• Helping you to understand the clinical trial – going into appointments and taking notes, talking through the consent form.
• Travelling to and from appointments – helping you to work out whether joining the trial will be possible.
• Finance – helping you to manage your money to decide if joining the trial will be possible, providing financial support, or helping you find out what benefits may be available to you or if you can receive travel compensation.
• Childcare during treatments, or checking up on your house if you are in hospital for a long period of time.
• Helping with shopping/cooking/cleaning/personal care if you are not well enough to do this for yourself.
• Helping with taking medicines.
• Helping to manage any side effects – cooking easier/smaller meals, making sure your bedroom is suitable for sleeping, helping you to find a comfortable position.

Help for carers can include the assistance of nurses, hospices, or residential care for you. As carers, people may also be entitled to receive benefits if their role affects their job/childcare.