I was in the pool changing rooms this week, and I overheard two women talking. One was strongly encouraging the other to go back to the GP to seek more help for a family member. Her advice seemed to boil down to ‘make out that it’s much worse than its is’ to ensure referral and progress.
It made me think.
Is this an effective strategy, beyond securing an initial GP appointment?
And just like that, in true Carrie Bradshaw style, I decided to explore…
‘What is an effective way to advocate for your child?’
Here are my suggestions-
1. Speak with your child and discuss what they are feeling
What would they like to happen, and what they definitely don’t want, or worry about? Make a list.
It is really important to work as a family team and be consistent.
Discussion will continue to be crucial at every stage of the process, to make sure you as a family provide a clear message to health care workers and therapists about what your aims are.
You may not completely agree on what the issues are, but that’s ok, and very common. The key is to have a shared aim.
Agree if your child/ teen will speak (supported by you), or if you will speak for them (this will be age, and problem dependent)
2. Make allies (not enemies)
Remember that the GP, the school staff, counsellors and so on are there to help you, and are usually keen to sort things out with you. It may not always feel like that, because they can be constrained by the systems they work within, but they should be eager to support you, so work with them to overcome obstacles, and make them part of your team.
Assume the best of people, but if they are not helping, find someone else.
3. Treat the challenges as a project to be managed
Gather information, be organised, prepare for appointments and meetings, and keep all the paperwork/ emails in easy to find files. This may also help to keep some of the emotions under control. It can be a stressful process.
Anything you can do to help the process by sharing documents with the professionals (emailing them copies of reports/ summaries/ next steps) is useful. Don’t contact them too often though.
4. Do your research but be realistic about what may be available
It is fine to become an expert parent/ carer but try to be understanding of the fact that the professionals you come into contact with will not know as much about your child as you do, or about all the various options for treatment available. What you may want may not be available in your area, so be open to considering alternatives.
What you may suggest is helpful may not actually be right for your child, so try to be open minded about therapeutic options.
Challenge and question what you read online- there is a lot of misinformation out there, and of course you want the best for your child, so it can be tempting to feel hopeful about treatments that promise a lot... dig deeper.
Whilst it is their job to listen and support you, the professionals cannot know everything about everything, though they should know a little about lots of things and be open to learning more.
Be tolerant of their gaps in knowledge and suggest sharing your resources or information in a thoughtful manner. They will likely be grateful for the resources and for not being judged.
5. Make sure you have support for yourself too
Join a Facebook group of likeminded parents, or ones who share your situation. Consider volunteering with a relevant charity to learn more. Ask questions about what helped other people, and what to avoid. Bear in mind that everyone is different, of course, so stay open minded about therapies.
Ask for help for yourself if you need it from your GP.
Check out local charities that provide parent support groups or phone lines e.g. Young Minds, Anorexia Bulimia Care, Beat.
Talk to your friends, family, and people who are positive and compassionate. Avoid those who criticise, drain, or undermine you.
Do nice things to distract yourself and relax (like watch a fun boxset).
Being an advocate for your child or teen is not easy. You have to balance their needs with their wants (what they want may not be what they need), as well as your own emotions, and the expectations of everyone around you.
In summary
Navigating complex health and welfare systems is stressful, and you can feel alone, but the good news is that you are NOT alone. Help is out there, and hopefully these few suggestions will get you started on a useful track.
And to go back to that lady’s comment in the pool changing rooms - no, I don’t think it’s necessary to make things out to be worse than they are - just tell your story, be clear about what you hope for, and work with all the resources out there to get what you need from what is available.
For more information about being an advocate there are also some great online resources. Check them out and be the best ally you can!