I do think that it’s time for those with dementia in England, to get together and form a new Living with dementia working group, so that we can inspire others to get up and realise that you can still have an active life after the diagnosis.There used to be two wonderful working groups in the UK, and both did so much to raise the profile of the illness.
Both the Scottish Dementia Working Group and the Alzheimer's Society's Living with Dementia Working Groups had a really positive role in raising awareness and campaigning in the past.
However these days we are only left with the Scottish Dementia Working Group, and the Living with Dementia Group has disappeared completely, through what many think was purely political purposes.
The reason many people think was because the Alzheimer's Society wanted full control over them, and many within the group thought it was wrong. It also cost a fair bit of money to run, but I do think that this part was not done properly at times, and this let to problems. There were also concerns that people were told what they should and should not say at times, something which took away our freedom to speak from the heart if it conflicted with the Societies views
The Scottish Group is independent of the Scottish Alzheimer's Society, although it retains strong links. This group is funded separately and works well with the Scottish Parliament, in campaigning and working on projects which need government support, and they are well respected around the world.
I have many friends within the Scottish Group and have admired them for a long time as they really get things done, to improve the lives of all with dementia. Like the Living with dementia working group they set out to inspire others with the illness to go out and help others while at the same time proving that you can enjoy life and live well with dementia.
As I was told at an early stage, when I went to the first UK Convention for people with Dementia, there is still a new life after the diagnosis, and with help and support you may well find it.
Since that event I have learnt so much and met so many new friends around the world, and life has taken on a new meaning.
So why can we not have the Working Group back in England. Well I suppose to do this properly it must be funded separately from the Alzheimer's Society and must be allowed to work independently, but that will possibly mean being funded by a large company as the public purse is running out.
But providing that company does not have too much baggage attached to it, I see no reason why this should not get support.
We are at the end of the day trying to get people inspired to campaign, and work for others, and if the Alzheimer's Society does not want this to happen then why not let someone else do it, providing it’s well organised and run.
This has to be done one way or another and with the support of the Joseph Rowntree Trust we may well see something happen as this group is independent of the Society and they want to see things change for those with the illness
However I do feel that the way forward is for charities, to encourage people with dementia to get involved, and feel wanted.
Those with dementia know what its like to live with the illness, as they have it, and other people should not assume that they know all about it. So by inspiring us to get up and help others we are also helping ourselves and all who follow us in the future.