Because we’re not worth it

I’m still waiting.

For a reply from Shropshire CCG.

A month ago they acknowledged receipt of my letter.

I reminded them a week ago, and they said it would be another week.

So I’m still waiting.

I attended their January meeting, where of course we are not allowed to ask questions or speak. At all.

We have to submit written questions which are answered in writing in the papers for the following meeting.

They keep us quiet because they have had so much s**t thrown at them them in recent years.

Deservedly.

So since they cannot hide in closed meetings, they prevent interruptions and awkward questions.

Democracy in action. Public spending in action. Accountability to those whose health they look after, and whose money pays their salaries.

NOT.

They wrote to me in December that they do not commission health care on the basis of rights, but to meet need. And they did acknowledge that people living with dementia have unmet needs.

Their meeting papers over three years show that they periodically claim they are working on a model to expand the services and support they offer. But nothing ever happens.

They, the GPs, continue to tick the EMIS box that states they have carried out a face to face annual review of our care plans, to get the QOF payment. 80% they proudly claim in their performance reports.

Yet none of us actually have any sort of meaningful support plan that we have contributed to. And Healthwatch Shropshire have proved it in a great piece of research last year.

The truth seems to be…

They don’t bloody care about people living with dementia.

There’s no cure. There’s nothing they can do. What’s the point?

They diagnose because they have a target to achieve. And they claim care planning, because they have a target.

And that, my friends, is that.

3,800 of us in Shropshire get almost no support following diagnosis.

Not unusual, I know. But they are not even trying.

We lead them to water, but they will not drink.

They look at us as if we are irritations beneath their shoes.

I sat through their January meeting with my teeshirt on, in the front row.

No one approached me. They looked from their seats, sniggered a little, and ignored.

Apparently, then, we have no rights in Shropshire.

The Equality Act does not exist, or apply to us.

The Dementia Rights statements? What are they? Never heard of them, and don’t need to here.

They have never carried out an Equality Impact Assessment in relation to dementia. They told me.

Why? ‘Because there has been no need’.

No need?

No bloody need?

Nor have they published an EDS2 statement or assessment in the last four years. No review of whether they are meeting the requirements of the Equality Act.

So I am still waiting for a reply to my letter.

And I fully expect it to be another meaningless, empty, vacuous explanation of absolutely nothing.

What the hell can we do?

How can we stop them from ignoring us?

Do we now have to interrupt their meetings and protest?

We have provided models and evidence for what we need. We have accepted that it cannot be all done at once.

But if you don’t start you never finish.

Perhaps they just know that since there is no cure, we will fall off our perches before they do.

Until there is a target for providing post diagnosis support, according to a specified model, they will continue to use Lansley’s appalling, failed NHS model to ignore us.

Because we’re not worth it.

….

The Dementia Statements

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
  • We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • We have the right to an early and accurate diagnosis, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

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