The Multi-Disciplinary Meeting

I was 36 when Daisy was born.  I already had seven years of parenting under my belt.

I was acutely aware that in many ways I had so much more in my favour than many other parents embarking on the journey of caring for a complex child.  I was probably closer in age to many of the professionals treating my daughter over the years, I had reached a high level of academic attainment in my own chosen field of expertise, I spoke fluent english and I had the support of one of the best management development coaches in the business, my own husband.  I knew how to negotiate, I knew how to manage complex projects.   

Yet despite all of that, entering a room full of professionals who were all gathered to discuss the fate of my child was one of the toughest things I have had to do.  Nothing in my previous life could prepare me for it.  I felt disempowered and vulnerable.

The multi-disciplinary team meeting (MDT) is commonly called when children have very complex needs.  The objective is to discuss plans for care and management and to ensure that everyone is on the same page in terms of what can and cannot be done and what the options are for ongoing care.

Sometimes parents are invited into the MDT, sometimes they are not.  I have so many memories of MDTs for Daisy.  Local ones where professionals dialled in from other hospitals, central London ones where I sat outside the meeting room for what seemed like an eternity before being summoned in, meetings where I was not involved and had to wait for hours at Daisy's bedside until someone came and told me what had been discussed and meetings where I was invited to participated at the beginning.

Always to talk about Daisy, what could and could not be done for her.  Thoughts on her prognosis, thoughts on how pain management regimen, thoughts about whether a surgery could help her or not, whether trialling a different drug might make the difference, how far should intervention go.......

Memories of those MDTs came flooding back when I watched the Channel 4 Documentary My baby's life, who decides?.  The cameras were allowed to film an MDT meeting.  They showed the doctors and professionals discussing the child's case and the prognosis, then they showed the parents being brought into the room.  I was taken right back, to that moment when you walk into a room, sometimes there were well over a dozen professionals, all looking at you, all knowing what you were about to be told.  About your child.  Thank you Channel 4 for showing this, and also more importantly showing the doctor in tears after the parents had left the room knowing that no more could be done..

You can sit through all the business meetings in the world, have all the management skills available but nothing will ever equip you for sitting in a room full of professionals knowing that your child's future is in their hands.

Many times I had to do this on my own.  Andy was running a business and if he didn't work he didn't get paid.  We had three other children at home who, in the early days were too young to be left.  With no extended family nearby we had to juggle all of these responsibilities.

I hadn't really thought about how hard it was to go into those meetings while Daisy was alive.  As I so often did I had to bring down the emotional shutters and try and be objective and logical.  Objective and logical about my child's life?  It's the preservation mechanism we special needs parents rely on to be able to stay intact and to keep functioning.

If I could go back, if I could advise another mum like me, this is what I would tell them:

  • Ask if you can come to the meeting.  Sometimes the professionals need to meet to ensure they are all in agreement and have a plan before meeting with parents but ask if you can come in at an appropriate time to put your case too.

  • If it's not possible for you to come to the meeting then write a letter to the members of the team and ask for it to be read out.

  • Alternatively ask for an advocate to represent you in the meeting.  You could approach the Patient Advice and Liaison Team (PALS) to request this or a named nurse.  Someone professional you trust to ensure your views are represented.

  • If you do get to go into the meeting do not do it on your own.  I wish I could take my own advice on that!  I went to countless meetings on my own because, with three other children and bills that needed to be paid, that was often the only way we could make it work.  You may think it will be OK but years later the emotional impact will hit, just as it did for me when I watched the TV the other night.  Take someone you can trust to support you.  They don't have to speak, they do need to be strong.  As them to take notes.  Go out for a coffee with them after the meeting to talk it over and make sure there is clarity on the plan.
  • Take a picture of your child to the meeting.  This is my advice for ANY meeting you are invited to where your disabled child is being discussed.  I did this for EHCP meetings about my boys and for meetings about Daisy (in fact often Daisy was just outside the room being looked after by a nurse while I was in the meeting).  While everyone is trying to be calm and rational they still need to be reminded that there is a child at the centre of the discussions.

Multi-Disciplinary meetings can be really invaluable when a child is medically complex.  They can help ensure everyone is in agreement and a plan for management is agreed.  They can also be highly emotional, it's your child's life that's up for discussion.  Just because an MDT has been called it doesn't mean that the team is considering withdrawing care/palliative care it just means that with so much going on it's important to ensure that everyone knows that is going on and a plan is agreed.

For me it was all about having a collaborative relationship with everyone involved in Daisy's care.

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