Rights, equity and dementia

How long will it be before a CCG is challenged in court under the Equalities Act for discriminating against people living with dementia?

Or the government?

At least ten times more money is spent on research into each of Cancer, heart and lung disease than is spent on researching for a cure for dementia.

There are over 4,500 Macmillan Nurses in the UK providing specialist care for people with cancer.

There are 250 Admiral Nurses in the UK, providing specialist care. For people abd fa,iles affected by dementia.

There are around 2.5 million people living with cancer in the uk.

There are around 850,000 people living with dementia in the uk.

The annual cost of cancer in the uk is estimated at £9.4 billion. £30,000 per person with cancer.

The annual cost of dementia in the uk is estimated at £26 billion. £32,000 per person with dementia.

One third of people living with dementia are never diagnosed.

What would happen if a third if people with cancer were not diagnosed?

One CCG has a diagnosis rate of 60%, another 80%.

One CCG commissions Admiral Nurse services, another doesn’t.

One CCG commissions Dementia Navigators, another does not.

Human rights are not optional. You cannot choose to uphold them. They are rights.

They are universal and cannot be gained or taken away.

The Equalities Act defines nine protected characteristics of people who must not be discriminated against, including disability.

People with a long term physical health or mental health condition fall within the disabled category.

People living with dementia, diagnosed or not, are defined legally as disabled for purposes of the Equalities Act.

People living with dementia therefore have a right to equity of access to treatment, care and support, alongside that provided for people living with cancer, or heart disease, or lung disease.

CCGs are required to carry out an assessment of the equalities impact of what they do. What they commission, and what they decommission. Board reports have to include the equalities impact of what is being discussed. There is usually a report template which contains an equalities impact section.

More often than not these give a bland assurance that there are no equality impact implications.

People who are given a diagnosis of dementia are most often sent away with piles of information leaflets and details of a crisis intervention service.

If they are prescribed a drug they will be seen every six months for review, using a medical review model.

If they are not eligible for medication they will be sent away and not contacted again. They enter a personal black pit and take many months to dig their way out, if they ever do.

People who receive a diagnosis of cancer report that they are swamped with offers of support from many organisations.

There is no cure for dementia, so what is the point of wasting money on people living with dementia?

Dementia is an invisible disease. It can be ignored. Hidden away.


How are we going to change this?

How can we make government adopt and enforce a standard model for supporting all people diagnosed with dementia?

How can we force CCGs to change their spending patterns to support people living with dementia in similar ways to other patients?

At the moment it seems that CCGs have the legal power to spend as they wish, based on evidence of need. So clearly in many places in the UK people living with dementia have no care or living needs, since their CCGs choose not to spend money on them.

It seems to me that we need a test case to go to court under the Equalities Act.

We need to use the law because the evidence is being ignored. A test case challenging a CCG for failing to provide equity of access to care and support for people living with dementia, by comparison with other CCGs, and other diseases, would set a precedent.

Can this be done?

You tell me.

Dante’s Inferno

I have been reflecting on what I do in recent weeks.

I’m getting tired.

It might be just a month or two of something going on with my body that I don’t really understand.

Or it might be dementia.

Or just age and the combined effects of multiple conditions.

Or it might be the continuing frustration that we all face, day after day.

We do everything we can to inform and to influence, to persuade and to cajole, to get change.

Change of attitudes and awareness.

Change in services.

Change in support.

We volunteer our time and energies.

We use our experiences and our difficulties.

We constantly search for and create opportunities to meet those in a position, and paid, to create change.

And again and again we have to bounce back from another knock down, another unfulfilled promise, another closed door.

We have to be impervious to criticism that we do not represent people living with dementia.

We try not to be rude to those who accuse us of being misdiagnosed, because we can speak and act and make choices.

“You don’t look like you’ve got dementia.”

“You don’t look stupid.”

(as Tommy often quotes)

But on and going we remain.

Until we are worn out, ground down, and our disease gets the better of us.

Thankfully we get support from some professionals and from our friends.

We commiserate and we laugh it off.

We always say tomorrow is another day.

There is a worm in our heads and in our hearts, and it keeps wriggling and burrowing, and will not leave us alone.

We cannot rest and ignore it. We cannot excise it and throw it away. It just keeps on burrowing in.

So we start again next day.

Pick ourselves up, dust ourselves off and start all over again.

This is not melodramatic or self pitying.

It is not a cry for sympathy.

It is, though, a cry for understanding and for change.

Every time we meet an influential person who ‘gets’ us, and who says they will help and make something happen we get a rush. We score.

It’s what we live for. It’s what we spend our pensions for. It’s what we give our energies for.

Imagine swallowing that magic, wonderful pill and then…


No one gets back to you.

No updates.

Nothing changes.


Just down and

down and


And next day the sun rises and the worm wriggles and you start again.

I really do not understand why, or how it is possible that, so many professional, well educated, thoughtful people can ignore us. Or dismiss us.

Do we not breathe?

Do we not bleed?

Do we not feel?

Are we not entitled to health and social care as much as others?

Are we morally inferior and undeserving because our disease is invisible in our brains?

Hierarchies of our paid servants sit behind their walls.

Dante’s circles of hell made modern.

Each level ignoring the other, and hoping not to be demoted down into some other, less well paid state.

And there are so many circles, like a five dimensional galaxy, we cannot hope to navigate through them.

They ignore us. The people who pay them to look after us when we need care.

It is our hell.

I hope they read this. Because I want them all to understand and to feel compassion and to take action.

We are not asking for a lot.

We are asking for our lives, and for a little help to live them.

We will die. Our disease is terminal.

Is that a reason to refuse help?