Love me, loathe me, or never heard of me before this is important…

My Fellow [insert your favourite term be it GUCHs/ACHDers/Turnips*], this is one of those times where you can make a real difference.  Not just for yourselves but for everyone who has our condition now and in the future. for now.

The NHS is reviewing how we are looked after. We’re at the stage where you chipping in can be the edge of a lever.  Sticking your thoughts in now can influence the Advisory Group’s thinking before it goes out to formal consultation.

My vested interest, I’m an Advisory Group member.  I’m there as the Children’s Heart Federation representative with a special interest in making sure transition works.  As I hope most of you know I also am a  GUCH/ACHDer/Turnip*.  

 As part of the Advisory Group my job is to make sure the standards make sense, will work for us the patients, and are in my phrase of the day are “pragmatically aspirational”.  I’m geographically neutral, I have to be, the standards have to be and we’re working very hard to make sure they are standards which result in excellent care – not favouring one model over another, but drive standards up for everyone.

Some of you already have contributed, either by email, or by coming along to one of the sessions.

Thank you.

If you haven’t been along, there’s still time – there are sessions in York and London this week (I have advertised them before, sorry if you’ve not spotted them), and as importantly you can send comments into the email address for the process.  Even if you’ve been to the sessions, send your comments in – make sure they get heard.

All of the details are here:

Some of you will be cynical about whether your comments will be listened to. You have my word that I will do, and that I will do my best to get others to listen.  You may not like me; you may not trust me, but I assure you of this – every comment received will be analysed, the Advisory Group will look at them.  Otherwise the Advisory Group will be finding out that I can be even more awkward than I have been to date.  Oh, and they’ve had that lecture already.

This is the 1st stage of talking to people, the chance to get your thinking in early.  The next time you’ll be asked is the formal consultation, so please get in early. Get in with your comments, your thoughts, don’t let others think for you or put words in your mouth.

I have a dream, a National Health Service that supports all adults with congenital heart disease, wherever they are, whatever their circumstances. That service is a genuine health service, not an emergency service. So from when we’re ready to be grown up’s to when we die we are helped, aided and advised on how to live our lives as close to how we want to as possible.

So please, comment on the documents.



*Turnip relates to a long debate about what we as a group are called… Ok if a joke has to be explained its not funny;-)


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