As part of the 'Engaging Young People in Healthcare' series, Chelsea shows the significance of involving young people in healthcare planning and how that will improve our confidence in taking control of our health that aligns with our goals.
Healthcare planning is essential to improve the overall health and wellbeing of young people, as well as the quality of care we receive. Ensuring young people are informed about available healthcare services and resources and involving us in this process will allow us to manage our own health and wellbeing. To achieve this, healthcare professionals should support us in various ways.
To start with, healthcare professionals should assess how much and how able we are to get involved. Check in with us about this periodically, as it might change as time goes on. For example, at the start of our diagnostic journey, we may not want to be as involved because we are still learning new information. Once we know more, that may change how we feel about our involvement.
Talk to us, as well as our parents
If we are still young enough to have our parents in appointments with us or we want them there, ensure we have the choice to be part of the discussion if we would like to be, addressing us, as well as our parents. Sometimes, it is automatically assumed that parents will be the point of contact due to their authority, but we may just want the comfort they can bring into what could be a stressful environment.
Strategise with us, not for us
Explain how what we are doing will help in the long-term. Having a rare disease can be overwhelming, but if we know why we are taking a medication, why we have to have certain appointments, tests or scans, we will understand how this all helps with our condition, motivating us to make informed decisions about our own health.
Find out the best way to strategise with us by considering how we learn. Some of us may be visual learners (if, for example, we prefer something colourful), or prefer audio (if maybe staring at a screen can hurt our eyes), or words (if we like reading). By knowing the best way we absorb information, healthcare professionals can tailor this to the patient, which will make us more engaged; we will be more willing to take on new information if it is in an accessible form.
Involve us in the decision-making process
Decision-making is a huge part of healthcare planning. There are several choices we must make and we must also be happy with them. The only way that can be done is if healthcare professionals give us that choice. All information should be laid out, including the benefits and risks. This will allow us to make an executive decision based on what you’ve told us, such as whether we want to try a new medication or treatment.
Consider telling us who our key contacts are and the best way to contact them, when our care will be provided to us and when there are any changes to our care plan, as well as whether our data will be shared with anybody else. All this information is vital.
Ask us questions
As much as appointments are for us to ask healthcare professionals questions, ensure you also ask us questions. Start a conversation with us. Rather than just asking how our symptoms are, actually ask us how we are doing as people. If we are in education, ask us how we are getting on with our course. If we are working, ask us whether our employer has been accommodating or whether we need any help with doctor’s notes. This will provide a safe setting for us, which can help us feel more comfortable and help us open up.
So, ask whether we are comfortable in our current healthcare setting, and if our options were explained clearly. Asking these questions may also be a conversation starter and make us think of questions that we may not have thought of before, which will make us more involved in what is going on in our bodies.
Direct us to advocacy or patient engagement groups
It is the job of healthcare professionals to use their expertise to help us; however, other groups and organisations may be beneficial in other ways. Engagement groups, for example, can be useful in helping us find a community who are affected by the same condition. Living with a rare disease can be isolating, so they provide comfort and relatability, making us feel less alone.
Charities can also provide useful tools and supportive resources which can be extremely beneficial as they are specific to that condition. Charities normally aim to support research, but they also connect people with others with the same condition, bringing hope and comfort within the community.
Lastly, advocacy groups can be very beneficial because, for the most part, we must be our own advocate. Joining advocacy groups gives us a place to be open about what we are going through and spread awareness to others who may not know what it is like to live with our condition, and to find people who relate to what we are going through.
Request feedback so you know how we felt after the appointment
After the appointment is finished, ask how we are feeling, because living with a rare disease and going to all these appointments can be extremely stressful. This shows you care about us and don’t just see us as patients.
Find out whether the information you provided us made sense as overloading us with so much information can be overwhelming. Ask us whether we got everything out of our appointment and whether there was anything else we wanted to discuss. It may also be worth asking us what we would like to discuss in our next appointment, so we can prepare before it.
If we are uncomfortable about providing feedback in person, allow us to do so anonymously, so we don’t lose that valuable opportunity.
Overall benefit of being involved in healthcare planning
If young people are involved in their own healthcare plans, we tend to care more and we find the most relevant support systems that align with our own health goals. Having control of our bodies can be challenging when living with rare diseases, so being able to have some control over healthcare planning helps us make informed decisions regarding our health and how to manage it. Giving us the confidence to do this will make us happier and help us to live our best possible lives.