If everything was perfect I would have nothing to say

I do worry sometimes that when talking about our Dementia journey I don't know all the facts but then I remind myself that I don't need to know all the facts to know that our journey as a family hasnt been easy.

I don't need to know all the facts to know that the diagnosis process took too long.

I don't need to know all the facts that there was and still is a lack of support in mum's hometown.

I don't need to know all the facts to know that we have felt we have battled against authorities instead of feeling supported.

I don't need to know all the facts to that this journey should have been different from day one.

I spoke at a Dementia Cross Party Group at parliament once about how mum didn't get a proper examination when in hospital at the start of the year. Someone replied to me saying 'why didn't you ask for it' to which I replied I didnt know she was entitled to it.

There is a lot of chat in the Dementia world about knowing your rights - but not everyone is capable or had the time to learn every policy etc. I still believe we shouldnt have to as these polices and aids should be offered out to us instead of us having to hunt them down.

Why are we still fighting for help and feeling like we are the nuisance by seeking help and support?

Families should be free to continue being a family and have the support chapping at their doors not the other way around.

If all was OK in the world of Dementia then there would be no need for the likes of me and many others to raise awareness through blogging.

There would be no need for Charities to support carers and those diagnosed speak up.

There would be no need for conferences to discuss how we can improve things.

Are the people at the top of the food chain becoming too complacent in believeing that everything is OK? Maybe they need to spend some time on the ground and see that their policies and shiny brochures arent being put into practice.

I know this isn't the story for everyone but even if its just happening to one person its one too many.

So yes I may not know the names of all policies, I may not fully understand what we are entitled to but I will continue to speak up untill I see changes so that maybe one day there wont be a need to speak up and all we need to concentrate on is raising money for a CURE!