Gold Standard

This has been a long time coming.

I want to share this because I think it’s an important part of life that many, if not all, of us experience in different ways.

Niamh will turn ten this year. She was diagnosed with Rett syndrome around the age of three.

In situations like ours, families and children are allocated doctors for “support.” In many cases, they are also assigned other team members to help with the child’s and family’s health and wellbeing.

As families, we put our trust in the “system” and in these doctors to ensure that we are made aware of, and directed toward, all the help and support available to us.

Not only this, but in certain cases like Niamh’s, an EHCP (Education, Health, and Care Plan) is put in place. This is a legal document that outlines everything related to educational goals, issues, therapies, and healthcare needs. It’s designed to ensure that the child receives the support needed to thrive.

The purpose of the EHCP is to make sure we can give Niamh the best life possible—to optimize her health and wellbeing.

As her mother, I have made it my mission to ensure that Niamh is as healthy and comfortable as she can be while living with Rett syndrome. This has meant countless hours of research—reading PubMed articles until my eyes burn, delving into anything and everything related to Rett syndrome, genetics, and treatments. This includes conventional (allopathic) medicine as well as alternative health approaches.

Before I go on, I want to acknowledge that the allopathic system in the UK is very restricted. Doctors are trained in one way, and they follow the framework they are taught. Exploring alternative medicines or treatments is often left to their own initiative. Day-to-day, they are working from one hymn sheet. And that’s fine—but it’s also incredibly limited. I imagine many doctors feel quite restricted by it.

On top of that, the system is incredibly oversubscribed and poorly managed, with giant holes in its structure.

When you interact with this system frequently, its flaws become painfully obvious. And quite quickly, it chips away at your trust and respect for it. That’s sad, isn’t it?

Niamh’s EHCP is three years out of date. This doesn’t even include the two years before that, during which they ignored my requests to update it properly.

For two years, I’ve chased the EHCP department for a review, receiving little to no communication in return.

Only after some absolutely glorious people I know—who happen to work in neighboring departments—offered to intervene did I finally get a response and a meeting.

The catch here is that Niamh is currently schooled at home. When a child on an EHCP is educated at home, the council has zero responsibility to fund it or provide support.

One less hassle for them.

Charming, isn’t it?

How are you supposed to trust and respect a system that is so appallingly run?

Short answer: you don’t.

Sadly, this is also true of the NHS systems I deal with.

If I request anything, it’s met with long queues and poor communication. People in the system seem to take a lot of annual leave. Yet, if *they* request something from you, they expect you to drop everything. It’s amazing how quickly they can arrange a meeting when it suits them.

Once again—zero trust or respect.

If you’re going to have a meeting or work with someone dealing with a rare genetic disease, it’s common sense to research the condition beforehand.

Especially if you’re working with them long-term.

I know this all sounds pretty negative, so I want to add that there are always a few people in the system who are absolute gold.

Those are the ones you trust. Those are the ones you turn to. They are the ones who truly feel like part of your daughter’s team and who *get it*.

We’ve become too used to accepting less than the best.

We’ve become too used to substandard care.

My children deserve the best care, the best quality, and the best people.

All of our children do.

And that includes us, as parents.

Our children deserve the best from us.

I could write about this forever. This is merely skimming the surface.

Maybe I sound rant-y—I know I have that tendency—but please know it comes from a place of passion.

You cannot trust or respect people who don’t communicate or bring their best—especially not in this situation.

You cannot work with people who aren’t willing to learn, continue researching, and explore every option.

You cannot respect that , that  doesnt respect for you.

That’s not how it’s built.

I have, and will continue, to dedicate my life to curating the best lifestyle for Niamh to support her health and wellbeing. I think it shows. But that effort needs to be met with the same commitment from everyone else involved.

Three specialist doctors have told me, “You are the specialist. You’re the most qualified in this. You live it. You know.”

But there are those in the system that don’t always understand this.

A mother knows her child better than Any other person on this Earth.

This is what I’m trying to say though,

Don’t settle for less in any area of your life.

Fight the good fight.

Try not to get rant-y like me.

Let your rage out to music when its all too overwhelming.

Cry.

But for the love of god, do not settle for anything less than gold standard.