Human Rights do not depend on funding. They are fundamental.
I am trying to get my head around what support should be provided for people living with dementia. What will help us? What we have a right to. And why this is justified.
I’ve looked at some of the guidance and pathways from NHSE and NICE.
I’ve looked at guidance about cancer pathways too.
But I can only find documents relating to prompt diagnosis and treatment. Not post diagnosis support.
Most dementia documents, including the prime minister’s 2020 challenge, also refer to diagnosis, or at least the start of testing, within six weeks of GP referral. They steer clear of what is to be provided afterwards, other than care planning, and advice and information about keeping engaged, and obtaining benefits.
When I spoke to the GP chair of our CCG last month, he said they didn’t have any money for more dementia services. They have two pilots for dementia navigators, till next year. Evaluation pending.
And funding to support Alzheimers Society activity locally is being cut each year.
With cancer, you get the diagnosis, you get treated, often for years, you recover, you live in remission (with the fear at the back of your mind)…although around half will die within five years.
With dementia you get a diagnosis, you may be eligible for a drug to reduce the effects for a while, and you live on, slowly (usually) declining.
So what is the difference, and why do we want more?
A person with cancer…except brain cancer…usually retains their cognitive capacity. They can manage their lives in the same way as before, though with probably changed emotions.
A person with dementia is losing their cognitive capacity. They therefore cannot manage their lives in the same way as before the disease, and they therefore require help to continue to do so.
This is the key. It isn’t that post diagnosis support is sort of nice if we can afford it… It’ll just help people who get upset at times…
Post diagnosis support is what enables plwds to continue to live their lives as they choose, to navigate the complex world around them which they are losing capacity to deal with effectively.
It will help them live their family life, find happiness, do what gives them pleasure, and get the support that makes life possible. And these are fundamental Human Rights. Not optional.
That is the bit that all these pathways leave out.
Except two, published by the government itself.
What to expect from health and social care services following diagnosis. This document uses the word “should” throughout, not “must” or “will”.
And the Prime Minister’s Challenge 2020, Roadmap to Delivery.
Both of these pathway documents include Dementia Navigators or Advisers.
Essential people who know local systems and services and communities. Who know the people they support. Who are available for a chat, or advice, or support. Who remain with you for years. To support you when you need it. Who help you navigate systems and benefits.
There’s no mention of Admiral Nurses, although the documents do refer to specialised support.
So what is it that we need, that we have the Human Right to receive?
- Early Diagnosis, at any age.
- Information about LOCAL services and groups.
- Dementia Navigators throughout our journeys.
- Shared living planning, owned by us and our families, contributed to by all our health and social care professionals and others.
- The services of GPs, Occupational Therapists, Physiotherapists, Bereavement Counsellors, and others, when we need them, not when it’s too late.
- The social care and health care staff who work with us must all be trained to level 2 of the training standards
- Admiral Nurses, as and when we and our families need them to avoid crises.
- Personal health and care budgets to enable us to live as we choose.
- End of Life planning, starting soon after diagnosis.
- And of course support to remain living where and how we choose (social care, assistive technologies)
I think this would be a good system, though there is a lot of detail beneath each element, and delivery would vary according to local geography and demographics.
There are a million people living with dementia, and the same again of family carers. This is not a tiny little minority group. Though that would not alter things one jot. Human Rights are not just for the many.
There must be no choice for whether local commissioners provide this model. It must be consistently provided everywhere. Human Rights are not optional. They apply to every individual, always.
Lack of funds is not a defence. Human Rights do not depend upon funding. They are fundamental. In actual fact, evidence shows that the elements in this model would save the country more than they cost.
The law needs to be changed so that CCGs cannot escape their responsibilities to implement this model. NHSE and Government must be able to require by law that this model be implemented everywhere.
I call for action across the countries of the UK to demand that parliament change the law to insist that this model of support for people affected by dementia is implemented throughout and in every corner of our countries.
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.