Shelagh Robinson gives her personal account of our group – an introduction to us, our aims and ambitions.
So, who are we? Well the most important thing to know about us is that each one of us has a diagnosis of dementia, across the spectrum of diseases. Alzheimer’s; Mixed Dementia; Fronto-Temporal Dementia; Vascular Dementia; PCA and more. Because of our various diagnoses we believe that we are experts by experience, able to tell it like it is, able to work well in a group of people that can be vulnerable at times, but who are best placed to support, understand and help each other.
We hope to become the go-to group for any organisation who need the input of the Dementia Voice, we hope to campaign robustly on the issues that we know, from amongst ourselves and from the increasingly wider membership, matter to those living with Dementia.
The members of the group have an impressive record of Dementia work; setting up support groups, consultative work with government, the NHS and international groups, advocacy around PIP and other benefit applications, work on Human Rights legislation based on deep understanding and experience of the field. Our members have written books, spoken at the UN in Geneva, worked closely with housing groups, campaigned for better end of life care, worked closely to meet the needs of LGBT groups… the list goes on and we hope to bring you more detailed accounts of what we do in future newsletters.
Because we all have dementia, things can go wrong; a bad day, forgetting what we wanted to say, losing our way in the paperwork. Yet in spite of this we already have a list of achievements and hope to go on to many more.
Without our administrator Hannah Fitzgibbon we might be more lost and far less productive, and she has been the most wonderful asset to the group, as have the carers who come to support a friend or family member but are generous with their time and care to any member of the group who needs support, as well as being able to supply the carers’ viewpoint when needed.
I think after our last meeting we all felt enthused and ready to start campaigning and growing the Three Nations Dementia Working Group. United against Dementia? You bet.