Advocacy for Carers


Today, I want to talk about the many meetings we have with professionals on behalf of those we care for – and how we often leave the meeting feeling completely unheard!

Many professionals set the agenda for the meetings and pay little attention to us as lay people. They use jargon we may not understand and talk amongst themselves with little regard to the importance of the person who is the main carer being in attendance.

Does this resonate with you? How many meetings have you attended where you leave still not knowing what decisions have been made? Where you feel you have been largely ignored or allowed to speak only briefly?

I know from my own experience – before I learned the strategies I am going to share with you here – how I felt after leaving those meetings. I would then spend the rest of the evening replaying the meeting and wishing I had said this or that, it kept me from sleeping at times.

So, what would it feel like to be more in control at these meetings? To lead the proceedings, to hold people accountable and to enter the room absolutely knowing that you would be heard?

These are proven strategies that I have used with carers many times and they are simple to implement once you know what to do and how to carry yourself.


Here are the steps to take:

1.    Firstly, decide the outcome you would like from the meeting. If you are having trouble with your child’s school for instance, brainstorm all the problems that are happening and identify the most pressing issue. The reason this is important is because professionals often have limited time to meet with you and it is important that you are clear on finding resolutions for the biggest difficulty you or your child/parent/partner is having. You don’t want to get to the end of the meeting without having resolved the main difficulty.

Please note that this will work for any meeting with professionals, whoever you care for. I am using the school meeting as an example.

2.    It’s likely that you will have several issues to discuss and you will have put them onto your brainstorming list. This will help you to establish an agenda.

Why is this important? It puts YOU in control of what will be discussed at the upcoming meeting. You will put your main issues at the top of the agenda.

For example: Here is a Draft Agenda for a school meeting with professionals

A.    Diagnosis

B.    Bullying

C.   SEN Provision currently in place

D.    Communication with school

The school may want to discuss some issues too and they can be added AFTER your issues have been discussed, For example:

D.    Behaviour at school/college

E.    Homework

 Then add the following as part of the agenda:

F.    A.O.B (Any Other Business) – anything else that needs to be discussed on either side.

G.    Agreed Action – Who will take the action? By When? How will this be communicated to you as the parent/carer? Ensure you write this down yourself so you have the agreements made documented and can follow them up.

H.    Review date (for what has been agreed at this meeting – it’s so important to ensure that what has been agreed has been actioned and if it is working or if other measures need to be implemented.) You MUST get a date in your calendar for the meeting to review BEFORE you leave this meeting!

Carers Advocacy

 3. Send your agenda to the secretary/teacher/professional and TELL them that this is the agenda you wish to be followed at the meeting. I have not yet attended a meeting as an advocate where our agenda has not been accepted. They may wish to make some amendments, but the main points should not change.

4. Request that notes/minutes are taken of the meeting (before the meeting starts ask “Who is taking notes for this meeting?”) and establish who will be circulating them and when.

Try to attend the meeting with someone who can take your notes and agreed action points – it is often difficult to remember everything that has been said during a meeting, especially when it is about the person you love. Having someone else there means you don’t have to worry about accurate and objective notes being taken. These notes can be compared with the notes from the meeting that you have asked to be sent to you by the lead professional.

5. Following the meeting, email everyone in attendance to thank them and to write out each action that has been agreed, who is accountable for taking that action and when the action will be taken. This ensures that they know you have been proactive in documenting everything yourself and makes it more difficult to deny this has been agreed.

6.   During the meeting, focus on the outcomes you would like – solutions to the issue/s rather than spending your time talking about everything that has already happened. Of course you can spend a few minutes explaining that you are unhappy about what had been happening but try to think about what you would like to change and how you see it happening – what do you want the professionals to do to support the changes you want.

7.    If you are prepared in advance, you will come across as professional and confident. Hold your head up high and have a bottle of water with you. A great strategy is to take a sip of water when asked a question as it gives you time to process the question and think of an answer!

8.   The review meeting agenda will begin with looking at the action points from the last meeting to discuss any changes that have happened as a result of the action taken.

The wonderful thing about this method is that you always have a draft agenda for any further meetings.

I hope you find the above helpful. Please let me know in the comments if you have any questions or would like to send me a draft agenda template to you.