This is the text of a talk I was giving to a conference next week. I have filmed it instead.
Could you let me know what if anything you know about Human Rights and how it might be relevant to your daily life
Human rights are rights inherent to all human beings, regardless of race, sex, nationality, ethnicity, language, religion, or any other status. Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more. Everyone is entitled to these rights, without discrimination.
The Equality Act 2010 gives rights to people who have any of nine protected characteristics, to be free from discrimination resulting from their protected characteristic. So people living with dementia, who have a long term disability, have a right not to be discriminated against in how health and social care are provided, either as a whole group or in smaller subgroups (based on geography).
So the simple way of looking at human rights in health and social care is to use the Equality Act framework.
What is their relevance to me?
I believe I have a right to receive appropriate support and care to meet my needs, so that I am able to enjoy my entitlements under human rights and equality laws.
These include freedom from discrimination, the right to family life, and freedom to choose how I live my life. They include therefore those aspects of support and care that I do or will require as a result of ill health.
I believe these rights are fundamental to how health and care should be provided in our country. There should not be a patchwork of support for people affected by dementia, the postcode lottery. There should be equity across the country.
These rights are not optional. There is absolutely no acceptable reason for not enforcing and practising them for everyone. And that includes lack of resources. Resource allocation is a matter of choice, and the choices as to how funds are allocated must not impinge on our human rights.
What do you feel might be the reason for (or be behind) some of the difficulties you face in your everyday lives?
I am still at quite an early stage in my dementia journey, and can do pretty much whatever I choose. Fatigue is a problem, but the other symptoms like memory loss, word finding, doing silly things, hearing loss, difficulty decoding speech, hyperacusis, reduced judgement (eg in financial decisions)..these are not really debilitating or unsafe, just irritating.
So any difficulties I have are not due to at this stage to any lack of my rights being observed.
However, I do not have a meaningful care plan to which I have contributed, or a named health or care professional to support me with living well. And these are the direct result of inequity in service provision across the country, and the lack of any meaningful support where I live.
How much control do you have in overcoming some of the challenges or difficulties you face in your everyday life?
I have pretty much full control over my life. The exception is that I have handed over all finances and decisions to my wife, and I have a small allowance each month. We have ensured that I cannot overspend…because I have done so in recent years.
Away from home, there are situations where I and others, we, are indirectly discriminated against. The Equality Act requires that organisations make reasonable adjustments to ensure people with protected characteristics are free from discrimination.
So for example, in meetings with health and care staff, they often speak too fast, not loudly enough , use jargon, don’t allow us to speak when we need to – so we often forget what we wanted to say.
So I and many others are closed out of discussions about health and care.
Equally, organisations almost always invite the same one or two people to their meetings, because it is easy and quick. They therefore exclude 99.9% of plwds from engagement in service planning and evaluation, AND they don’t get a balance of views.
This is indirect discrimination.
If some things are out of your control, where do you think the power and control lie? Or WHO has it?
When I was diagnosed the dementia nurse told me to avoid taking risks, and to not get tired. She was attempting to control my life. But I refuse to follow this advice.
Of course I get tired. Of course I take risks. We all do. Life would be very dull, and probably impossible, if we did not do so.
My wife has some power or control over me, as I said earlier, regarding money, but I have willingly given her that because I do not trust myself.
I have also signed a lasting power of attorney for when I lose capacity to make decisions.
I don’t feel I am in control of my health and certainly I have not seen any care plan that my GP may have on his computer system. I have not seen it, nor had a review of it. In six years. I am living independent of the health and care systems, except when I need to see a doctor about something other than dementia.
Outside my home, power and control are totally with providers and commissioners of our services. They prevent us asking questions at their meetings in public. They won’t meet us to learn about our needs and their services. And there is nothing we can do. Believe me, I have tried for years. If they don’t want to engage with us there is just nothing we can do. Other than direct action and protest!
What practical things have worked for you or helped you in getting a voice, in being more in control, in being heard?.
I have made deliberate efforts and decisions to be involved in the DEEP network, and am leading a project to set up a dozen deep groups in Shropshire.
I am involved in co-chairing two groups, one local one national, that work to improve services for plwds.
I have continued after diagnosis to work to influence health care and social support for people affected by dementia, nationally and locally. I have taken almost every opportunity that has come along. I have blogged for five years. And tweeted. Spoken at conferences, and on the radio. And just put myself out there.
I have never wanted to shrink away and hide. And I work to help others avoid hiding too.
I write blogs about living with dementia, and about what should be changed to improve services, and to make communities easier for plwds to live well.
I have also started using the Echo Alexa system for reminders and prompts. Really useful for things like taking pills, or not missing appointments.
And of course my trusty ipad. Everything in my life is on it, in the calendar, with notes from meetings so I can remind myself of things. Photographs of people and places, as reminders if I cannot find the memory. Including photos of where I park my car, so I can find it again. I could not have an existence outside my home without it. And inside for that matter!
What does a good service look like to you?
Well, it depends…of course…on circumstances and services…but…
First, the provider staff sit down with you, get to know you, and listen to what matters to you, before designing the service.
Second, they design a service to meet your stated needs, provided in ways that are enabling rather than disabling.
Third, they do not design it for the convenience of their service or organisation, but for the service user.
Fourth, all staff in contact with plwds (could be a bus driver, or physio, or doctor, or shop keeper, or social worker) are appropriately trained to understand dementia, our behaviours, our symptoms, and our needs, and how to work with us.
Finally, that the services are provided in dementia friendly environments.
Based on your experience, what advice or message would you give to someone who is newly diagnosed?
You may have been expecting your diagnosis, or it may be a complete surprise and shock. It often is for many people.
You are not alone. People newly diagnosed feel all sorts of emotions, and often feel very down for a while. That is quite normal.
But remember…you are the same person you were the day before your diagnosis. Nothing has changed other than being given a label for symptoms you have been experiencing. And many people find it helpful to understand why they were having those symptoms.
After diagnosis, people may feel lost and alone, frightened of their future, and reluctant to talk about it to anyone. They may suddenly lose self-confidence.
But it is really important to carry on with life. To do what gives you pleasure, to meet your friends, and just to live as you wish. You are still you. No one has flicked a switch and turned you off!
Go on living just the same as before.
Having a diagnosis has advantages.
It gives you access to support from a number of organisations, like Alzheimer’s Society, Age UK, and your Memory Service. Your family or friend carers can contact Carers support organisations for information too, or attend useful courses fir understanding dementia and caring.
There are also smaller groups that you can go to as well, like DEEP groups.
You can find lots of information about dementia on the internet, and the Alzheimer’s Society is probably the best place to start. They have lots of helpful information leaflets online.
Your life has not ended. You are the same person as before.
Dementia is the name for a physical disease in your brain. It is not mental illness.
There is nothing to be ashamed of.
• Keep active
• Keep engaged
• Keep as fit as you can
Try to go to one or two support groups. They are all different, and one will suit you.
Some offer activities, some are just chat over a drink and cake.
If you don’t feel comfortable at one, try another.
It really does help when you talk to others who have the disease.
Another advantage of a diagnosis is that if you are in receipt of a benefit, such as Attendance Allowance, you will also be entitled to a reduction of half your council tax payment. You will need to claim this. (See the Shropshire Council website.)
You are not alone. Many people understand the disease, and the more we talk about it the less we will fear it.