Yesterday I had a meeting with Michelle Cooke, the Assistant Director of Community Services and Older Peoples’ Mental Health within our Trust and Janet Woodhouse. I’d been invited by Janet , Nurse Consultant for the area who I’ve been involved with at Beverley Community Hospital to make the environment more friendly Janet though it might be a good opportunity to talk about the lack of support in the East Riding for younger people with dementia, and the experience I had when I first moved here.
We’d arranged to meet at the Community hospital and since the village bus would have made me late, I decided to walk as it was a nice morning.
Janet is passionate about improving the lives of people with dementia in the area so is a good person to have on your side. She met me in the hospital café and got me a cuppa so deserved a brownie point immediately as we walked through to the offices.
Once we’d done the introductions, I talked Michelle through my experience and lack of any personal contact from the team when I first moved to the area. My point wasn’t the rubbish process of being referred back to my GP, my point was that, due to the lack of anyone actually speaking to me, no one would know whether I was coping or whether I was in crisis. I didn’t fit their criteria due to my age so they made the decision to close the case and refer me to the care of my GP……..
They both agreed that this shouldn’t have happened this way and I at least should have had contact with someone to explain the situation and at least make sure I was ok.In many cases I would think that no further action would be taken as it was a tick box exercise but I trust Janet and if she says she’ll do something I believe her. Again my aim isn’t to beat anyone with a stick – it’s just that lessons need to be learnt so it doesn’t happen to someone who is desperate for help…..
The aim of the meeting was to discuss the best way to lobby local commissioning groups in order to change the current situation and to highlight the needs of people with young onset dementia. We all agreed that we have to get all specialties and voluntary organisation together to see how they can work together to get the best value for money under the current financial restraints. They’ve asked me to meet various people and attend meetings with them so that’s a start.
What was also apparent was their desire to make sure I was ok and whether they could help in any way, which was a pleasant surprise. It’s so difficult when I’ve spent the last 2 years looking into how best to support myself that everything I do, I do to ensure others are supported as I usually know far more than those who would be sent to help. However we did agree that we would meet with a local person to see if there was any help I was missing. I’m not used to being helped, apart from my support groups in York, so that was really nice and totally unexpected……..