Who Will See the Whole Person?
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The second appointment this week.
The lilac wall opposite is filled with the usual posters. A picture of a smiling nurse on one, another calling for patient participation, another reminding us to have our flu and COVID jabs. The Patient Information Screen is broken again!
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I am here with my daughter. We sit and wait.
Around us, people come and go. Nurses appear at doors and call names. Somewhere a telephone is ringing. There are conversations at the reception desk and the constant movement of people going about their working day.
I have seen this so many times before, in other waiting rooms, in other medical facilities.
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For my daughter, however, this is not simply another appointment.
There have already been other waiting rooms, other nurses, other doctors and other specialists. Some faces have become familiar. Some are faces she is pleased to see because she knows them and they understand her. Others are faces she would rather not see again.
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And then there are always new faces.
This cannot be easy for my daughter. She has a complex disability: Fetal Valproate Spectrum Disorder (FVSD). Like so many others, she has a severe anxiety disorder and other neurodevelopmental challenges. This must sometimes be frightening for her. My heart swells. I think she is so brave.
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We had ENT earlier this week. Tomorrow there is another appointment to refit her boots and assess her splints. I hate weeks like this.
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Mental health is another part of the picture. Her sister attends a peer-support group with MIND, but for my other daughter, whose needs are more complex, accessing appropriate support is, to say the least, difficult.
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My daughter's day is a monster. She cannot put her heels down; it is just one consequence of the musculoskeletal problems she lives with. Every day she has exercises to do. She is an adult now, and finding ways to encourage the exercises and activities she needs is not always easy. I won't pretend I am always successful.
Always appointments to attend, questions to ask and questions to answer, and information to take home.
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Later we will have a coffee at her favourite coffee shop near the hospital. Each hospital seems to have acquired its own favourite place for coffee and a chat.
We see so many different people, each with their own area of interest. Yet these different people often do not talk to one another.
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When my daughters were younger, I felt like the go-between, trying to tie all these separate pieces together into something coherent.
Today I sometimes feel like the expert, coordinating these services.
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But I am her mother.
I do not have the medical training to do this. My daughter needs a multidisciplinary team. Both my daughters do.
Everything comes into the room with her
Perhaps this is where the problem really becomes visible.
When my daughter walks through the door for an appointment, she doesn't leave the other parts of herself in the waiting room.
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If today's appointment is about her physical difficulties, she still has her hearing impairment.
She still has difficulty remembering verbal information.
She may still be anxious about the appointment or frightened about what is going to happen. She may be struggling with depression. She may already be tired from everything else she has had to do.
She may be asked questions that require her to remember something accurately. She may be given information verbally that she is expected to understand and remember. She may be given new exercises to do at home, on top of those she already has.
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And there may be a new face explaining all of this.
None of these things happens separately.
They all come together in that one moment.
I know many of these things because I am her mother. I have watched her throughout her life. I recognise when she is becoming anxious. I know when something has not gone in, even though she may appear to have understood it.
But even I cannot know exactly what that moment feels like to her.
And that matters.
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Because if we look only at the reason written at the top of today's appointment letter, we may completely miss the person who has walked through the door.
Who will see the whole person?
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Today, all of this matters to me more than ever.
I am getting older and, like many other parents of adults with complex disabilities, I think about what will happen to my daughters when I am no longer able to do what I do now.
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For years I have carried information between appointments. I know their histories. I know the things that frighten them and the things that help. I know when something isn't quite right. I know which information needs repeating and which questions need asking.
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I have begun trying to put more of this into care plans. Even that can sometimes feel like a negotiation.
But a care plan cannot simply be another form to complete. My daughters' needs are too complex for a series of boxes to capture who they are.
One specialist may see hearing.
Another sees feet and mobility.
Another sees mental health.
Another sees neurodevelopment.
Another sees medication.
Social care sees something else again.
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But my daughter does not experience herself in separate departments.
She is one person.
That is why multidisciplinary care matters so much to people with complex disability like FVSD. It should not simply mean having a long list of professionals involved in someone's care. It should mean those professionals communicating, sharing knowledge and understanding how one part of that person's life and health affects another.
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For now, I am still sitting beside my daughter in these waiting rooms.
I can still explain. I can still remember. I can still ask the questions and carry information from one appointment to another.
But I will not always be able to do that.
And that is what frightens me.
When I can no longer be the person trying to hold all these pieces together, who will see the whole person?