Being heard

Most parent carers will know how it feels not to be heard. Perhaps it has been in getting a diagnosis, trying to explain symptoms that get brushed aside, or in navigating a system that has been designed with the funding available in mind, ahead of the actual need.

I have been lucky enough to have become involved with some brilliant opportunities which have enabled me to get my voice heard and also to bring about change. I’d like to encourage other parent carers to consider doing this too.

This blog is of course one of those opportunities. Firefly has used its channels to provide a platform to parent carers. I’d like to see more companies doing this, especially those that work in the disability sector. Many of us will have seen adverts flying around for opportunities to get involved in research from universities, or to feed in our lived experience to improve services from local authorities.

Here are some of the things I have learnt / experienced since being involved in this sort of stuff.

This is just my take, and it is not for everyone, but by sharing my experiences, I hope I can help others understand what getting involved may look like.

It can be hugely validating to share personal experience, get heard and see changes made as a result. I have sat on consultation groups and seen researchers take on board my suggestions and make changes. It’s a powerful feeling in a life where I can so often feel powerless. We as parent carers hold knowledge that can change the course of research and services.

There is normally a group of people with lived experience involved on projects. Meeting people with similar lived experience can feel great. I have often found myself wishing we had more time to chat and connect. I have seen some research projects build in time for this.

All good research projects will be clear about the fact that you will likely be sharing personal experiences. This can often feel hard, and it’s worth thinking about how you may feel doing this.

All research projects inviting public involvement should be paying for your time. No-one does this for the money (it’s only a token payment / voucher) but it is vitally important that our contribution is valued as everyone else’s is. Our experience is often painfully won and to share it is a big deal. That needs recognition.

Being involved in these opportunities has been a great learning experience in working with academics and meeting new people from different backgrounds.

Most opportunities these days are online meetings, this can be much more practical than travelling to a meeting for a parent carer.

The more people that get involved, the greater impact of the parent carer voice. I’d encourage anyone to consider it next time one of these opportunities crosses your path.