I thought I would give a heads up for my Dementia UK Congress speech on Wednesday.
I know many who look at my blogs may not be attending, and others will choose different sessions on the day. And, well, I just want to get this OUT THERE.
We need to work together.
All of us.
To get what we all want.
A consistent model of diagnosis, care and support for people affected by dementia across the UK.
Care that does not depend on where you live.
Support which is tailored to meet your needs, not those of others, or guessed at by a manager at a desk.
And health and care staff who are ALL fully trained (level 2) in how to support people, living with dementia.
As I write there is another outbreak of canceritis. Liver cancer death increases this time. And yes, they need attention. And much of that needs to be a proper, effective public health approach which provides alternatives to excessive alcohol consumption.
But I am not going to preach on this, as I live in a greenhouse.
No, what gets me, more each week that passes, is the utter refusal or inability of many healthcare commissioners and managers to (want to) work to really provide good, appropriate support for people living with dementia.
Commissioners cannot possibly (or legally) argue that dementia is a local issue with a need for local tailored solutions for their own CCG, ie that dementia in one CCG justifies more support than in another.
Dementia in general varies very little, and then only due to population demographics. Thus, Shropshire should be spending more than average on dementia related support and care. But no…not in this particular wood neck.
People are paid sizeable salaries to manage our healthcare systems, and to ensure that within available resources, and making best use of these, the population is provided with the best possible care.
So I find it utterly repulsive that in some areas we who are affected by our or others’ dementia are ignored, pushed out of the door, and locked out of participation and discussion.
As someone else is recorded as saying,
If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?
Do we not have a disease?
Do we not warrant care and support?
Liver cancer? Oh God! Yes, we must get on with improving diagnosis and treatment, now, goes the cry. Again. Canceritis.
But, back to working together.
There are many organisations in the third sector that work to raise awareness about dementia and to improve support and care. I will not list them here, even if I could.
But I am struck that some notable ones find it hard to agree to work together. There is a sort of charity testosterone that flows through some organisations which creates misplaced arrogance and competitiveness and prevents partnership.
There are of course the requirements of charitable status and aims. There are also the Daily Mail front page fears, which can create severe risk aversion.
And of course there is the need to create good data on beneficiaries and achievements for the next funding application.
But come on folks, we are pretty much all working for the same thing. Aren’t we?
The best support and care that meets the needs of people affected by dementia?
Every good idea needs to be supported.
Every effort to influence change supported, added to.
And no claims that our idea is best and the only one we will support, or nicking others’ ideas!
Who should we put first?
Who should be at the head, the centre and the whole of what we all do?
Not our trustees, not our staff, not ourselves.
Not our targets, not our funders, not our commissioners.
Those for whom we exist, people living with dementia, and those providing unpaid care.
You are saying I am unrealistic and unreasonable.
That I am living in a precious, intellectual bubble not of this world.
Looking through rose tinted spectacles.
Well, yes and no.
I have worked for a very large charity, and I know how they get stuck in their institutional ruts, and find other people’s ideas hard to swallow. And I know about targets and funders.
And I know that the best trustees want to bend and flex to meet beneficiaries’ needs. And most staff want this too.
I know that there are organisations out there that want to work together. And others that are frightened or arrogant.
So let’s do something about this.
Let’s work together, join forces, harness all our combined passion and resources.
Let’s get change.
Let’s put those who need us before our own needs.
Because if we all work together we will win… for those who need us.