To those who can make change happen……
So here we are again, my fourth experience of World Alzheimer’s Month since I received my diagnosis 4 years ago.
I must confess that ‘dementia’ hadn’t entered my vocabulary before the diagnosis. I knew little about it and I had no experience of it in my family. Now it is all consuming and with me twenty four hours a day.
When I was diagnosed I consumed everything before me, written by others living with the condition. I noted their resilience, their campaigns, their desire for change. So why, four years down the line, am I too writing about the same need for change, writing about the same subjects, writing about the same as was written about long before my diagnosis?
If I’d been diagnosed with cancer, the phone would have been ringing – a pathway would have been agreed and services would have kicked in. So why when diagnosed with dementia does the phone remain silent. Why when the consultant gives the diagnosis do they discharge you as there’s no more they can do?
Wouldn’t it be wonderful if social care was a job of choice, with recognition, status, and a value placed on the skills of the staff?
Wouldn’t it be nice if individuals were treated as simply that, individuals with individual needs?
Wouldn’t it be nice if policy makers actually listened to the people that mattered and had most knowledge?
“Nice’ is a strange word in these circumstances. Surely it should be a necessity.
Just because we have dementia doesn’t mean we don’t have Rights…
For so long people with dementia have been shoe horned into the general services which others believe is our need instead of individually assessing need. Now we’re beginning to rise in numbers and TALK in public, there’s a realisation of the individuality of ‘need’ – we don’t all ‘fit’ into current services provided.
It’s almost as if it’s too late for all those of us currently living with dementia, both in the early mid and late stages and all stages in between. It feels like we’re the guinea pigs being used to try to sort out this mess so future generations can benefit.
If everyone currently living with dementia, in whatever stage, has to be guinea pigs for change to happen, then so be it, but change there has to be. No more silence, no more voices of the few, no more talk and good intentions – there has to be actions.
In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.
We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater. In my mind this should naturally lead clinicians to use social prescribing instead of automatically looking at the medical model and then discharging us.
We need to be realistic though and also examine various ways to fund this enormous need – what should and shouldn’t be funded – as we all know there is no infinite money in the pot.
Yes it is a daunting job to transform social care, but then surely it was a daunting job to create the NHS in the first place, but it happened.
When I was diagnosed, I was fortunate, I was resilient …I knew how the system worked. Many others would have sat at home waiting to die, not knowing which way to turn or where to look for support.
There are tiny pockets of good support, tiny pockets of good care in hospitals, tiny pockets of good care in care homes. But why tiny?
More than anything we need consistency. The post code lottery that currently exists is shameful.
Let’s not rely on the medical model of care any more and instead focus on the social model that will impact far more on resources in the long run. For far too long services wait for the crisis to occur, wait until families can take no more before intervening. If people are supported with emotional, financial and practical advice from the point of diagnosis, they would be more educated on what they can do for themselves. They wouldn’t head to their Gp with depression – not only the person with dementia, but families who can’t cope.
If care homes were more educated on how to detect conditions in people with dementia that they could then avoid, there wouldn’t be a need for unnecessary hospital admissions.
We are at a crisis in the NHS and Social Care services. If you don’t listen now and Act now, the situation will simply get worse as the ageing population creeps ever higher putting even more pressure on services.
But there is light because there are ways to avoid this crisis – yes, a mammoth task ahead, but what’s the alternative to not dealing with it. Not dealing with it won’t make the crisis go away.
I don’t want my children to be faced with the chaos of care when I can no longer care for myself and I’m sure you wouldn’t want your children to face that challenge either.
Regards from someone who doesn’t have time on their side……