Rights based care?

When will brain disease get parity with cancer?

I’ve written before about Dementia not being a mental illness, and arguing therefore that dementia should not come under mental health providers.

The memory service. Aargh. I hate the name.

Equality and Diversity law requires that people receive equity of access to healthcare and support regardless of ethnicity, gender, disability, sexual alignment, etc, ie the nine protected characteristics.

Neither should equity of access to healthcare and support depend on where you live.

There will be differences in delivery models, based on geographical location, community assets, and funding, not to mention other resources like staff and transport.

But given that there is a national funding formula (not perfect but consistent) for health and for social care, why do we not have consistent models of care and support?

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Why do we have some areas with admiral nurses, and others without?

Why do some areas have six week waits for assessment by the memory service, and others sixteen weeks (and more)?

Why do some CCGs spend five times more than others on services for people living with dementia?

Why do CCGs and providers not carry out full Equality Impact Assessments on their commissioning and services and find that actually people living with dementia and their family carers are often implicitly discriminated against?

Why, when the number of people living with Dementia is rising dramatically, when well over 25% of patients in hospitals live with dementia and have stays of 21+days compared with 4-7 days for others, why are so few people in CCGs doing anything positive and realistic to provide better care and support?

It’s an epidemic.

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It’s costing the country around £23bn a year.

Care homes are going out of business so less places are available for those who need specialist care. Or just somewhere they can be looked after.

During this NHS crisis (summer and winter…it’s continuous) specialist staff in Dementia teams are being taken away from their work to provide cover in ED and on wards, or corridors.

Guess what? Patients living with dementia, get less good care, have worse experiences and worse outcomes, and more of them end up in care homes when they could have returned to their own homes.

Are staff being taken away from cancer teams?

Are patients being denied chemotherapy because staff have to go to ED?

No, and rightly so.

Dementia is everyone’s job! In and out of hospital.

But we seem unable to see this and respond to individual patients’ needs. We treat their immediate disease, their cancer, their prostate, their hernia…but we lose sight of the other bits that make them who they are, including their brains!

And we seem unable to grasp the essential irony, that if you don’t look after the person with dementia as they need to be looked after, they will “go wrong”, and block your beds! And cost you a lot of money which you could have avoided spending.

In these days of STPs, with footprints that are bigger than CCGs, and which will probably take over from the CCGs soon, and become great big accountable care organisations (ACOs), what will happen when one half of an STP provides admiral nurses, while the other half doesn’t?

That will be straight out of the Equality and Diversity playbook!

Politicians and NHS national leaders talk about national strategies, locally delivered. National models tailored to local needs.

The current NHS architecture was set up in 2010 because apparently GPs knew the local needs best and would commission services in accordance for their populations.

So why does one set of GP commissioners (CCG) in Telford (for example) identify a need for admiral nurses, and dementia support workers and dementia companions for all its area and pay for them, while an older, larger population next door apparently does not have that need so the CCG does not commission them (in Shropshire)?

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In actual fact Shropshire includes around three times the number of people living with dementia than live inTelford. Where does that leave local GP knowledge of local need?

Oh and Shropshire CCG has just not replaced its commissioner for dementia services. That’s a great demonstration of commitment. Not.

The law says people living with disability (including long term conditions such as dementia) must not suffer discrimination as a result of their disability. We must not be adversely and disproportionately affected by commissioning decisions over our health care, compared to other people without the disability. Or compared to people with the same disability living elsewhere, I would suggest.

I wonder whether this can be legally challenged? Why should one CCG (and I’m sure there are many others) choose – and it is a deliberate choice – to ignore a large group of several thousand people living with a brain disease?

Not only ignore, but actually decide that their lives and their “suffering” are unimportant and they do not deserve support and care.

If they chose to ignore people living with breast cancer, or brain cancer, and to withhold care and support, what do you think would happen?

If it’s rationing because CCG staff cannot reorganise/reprioritise funding and spending choices as health needs change, say so. But it’s still illegal.

It’s discrimination.

It’s not fair. Not right. Not legal. Not humanitarian.

When will we challenge this?

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….

These are the five Dementia Rights 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.

6 thoughts on “Rights based care?

  1. Hi George, always love your blog, so informed and well written. Can I just say that here in Herefordshire we are just about to get our first Admiral Nurse. At a meeting with the Admiral Nurse that sets up when a Nurse is taken on, she told us that they are paid by the charity Dementia Uk, at what point does the CCG get involved in the appointment of an Admiral Nurse and why if the cost is not appointed to them? The first Admiral Nurse was appointed 30 years ago, again here we are this far along this journey, as if it a new disease and that Admiral Nurses a new invention.

    Liked by 2 people

    • Hi Terri. I think you’ll find that DUK contributes part of the cost for two years, but the host has to commit on paper to continuing the full funding for the post afterwards.
      The CCG pays the provider to provide services, and decides what the services should be. If they choose not to pay for admiral nurses they will not be appointed by a provider. So the CCG has the control and decision.
      A trust could use its funds to buy an admiral Nurse, without the Ccg providing funding, but this is unlikely given the state of trust finances.
      The CCG is the body that is appointed to decide which services their population needs and will get.

      Like

      • Thanks George, I new you would know the answer, we only get told the bit that looks good for them, so complicated this NHS. Keep up your good work.

        Like

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