We have been waiting for an appointment to see the cardiologist from Great Ormond Street Hospital since Boo's operation was cancelled, and today an appointment letter arrived in the post.

The consultant only visits our local hospital once a month so i was expecting to wait quite a while for the appointment.
So when the appointment arrived this morning I was really pleased.

But, low and behold, the appointment we have received is not correct.


The hospital have sent us an appointment to see a Neonatal Intensive Care doctor!

Boo is 12 years old (!!) and wasn't even in NICU as a baby!




It feels as though this is becoming all too familiar at the moment.


Constantly slipping through the net and being left without support.

Emotionally exhausted and no where to turn.

Left feeling frustrated and isolated.


I honestly feel I would be completely lost if it weren't for the support of the SEND blogging community.

Often they are the only people I can turn too when something goes wrong.

They are the ones who understand.

Most of them have been there in one way or another.

And you know what? As grateful as I am for the support of these amazing people it really SUCKS that it should have to be like this.


Parents of children with disabilities and special education needs are fighting a constant battle to be listened to by health care professionals instead of having their concerns being brushed to one side and being made to feel like they are being unnecessarily anxious about the care their child is receiving.

These health care professionals make assumptions about our children after spending mere minutes with them, and we are expected to trust their judgement when it comes to medical decisions even when they often seem unconcerned with listening to the information we want to give them regarding our children, such as their individuality's and 'quirks',


You may have met 100 children with ASD but no 2 children out of that 100 would be exactly the same.

Yes, there may be similarities between them, but you can't make medical decisions about these children under the assumption that they are all the same when the Autistic spectrum is so incredibly large,


Add to that the fact that Boo has a rare genetic disorder and things become even more complicated,

Doctors don't know enough about his condition and so we are often left without answers or a plan of~
 action and this just isn't right.

It is a reality that parents of children with disabilities are facing every single day.


Trying to give our SEND children the best care possible should never EVER be this difficult.


How can we be expected to trust health care professionals to do the best for our children if they can't even get a simple appointment right?!


Missy x


**Update**

Since writing this post, and being in contact with the hospital, we have been told that the appointment we were sent is in fact correct.

Boo needs to see the NICU consultant for an ultrasound scan of his heart.
Apparently the NICU consultant works in connection with the cardiologist from Great Ormond Street Hospital. They will do the ultrasound and then confer with the cardiologist from Great Ormond Street Hospital to establish whether or not he needs to be seen by them.

The hospital would save a lot of frustration and confusion by purely putting a small paragraph on their appointment letters explaining this.

I wonder how many phone calls they receive from parents who assume they have received the wrong appointment, or even missed appointments because they just assume the appointment is incorrect?!

Although our appointment is correct, I still feel the same.... frustrated, let down and without support.

The lack of communication is really not acceptable.