Dementia Action Week 2018 – Post-Diagnostic Support – A Human Right

Human Rights

Whilst there is integrated post diagnosis support for some chronic terminal diseases, for others there is none. In the UK there are around 4,600 MacMillan nurses who provide support from the point of Cancer diagnosis and locally including Stroke, Heart Failure, Stoma, Diabetes, Eating Disorders and Spinal Injury specialist nurses but for Dementia there are none, not even Admiral Nurses, in fact there are only 226 Admiral Nurses for the whole of the UK at last count.

For me the experience of Dementia and post-diagnosis support extended to only what my Neurologist could do within the confines of her role, the support of friends, family, at work, on Twitter and a feeling that I had stepped off a cliff into a deep black hole, which was my world for nearly a year.

It was only through Twitter that I was able to access the A Good Life with Dementia Course in York. This has meant a weekly journey of 130 miles by taxi and train from Sheffield.

So what about Sheffield now. There has been no interest from the local CCG, Council or NHS to date, the funding my Neurologist had to start a similar course was cut several years ago.

There is interest from some organisations and there is a desire in the Dementia community to see this type of course worldwide. There has been recent interest from the East Riding of Yorkshire, Cambridge, Cornwall, Exeter, Kent, even USA and Australia.

The CCG’s, Councils and Government here in the UK cannot see the cost benefit in integrated support, the saving in hospital admissions alone would outweigh the cost of integrated post diagnosis support.

So, what about our rights:

The Articles in the United Nations Declaration on Human Rights include:

2. Human Rights for All. These rights belong to everybody, whatever our differences.

3. Life, Liberty and Security. We all have the right to life, and to live in freedom and safety.

6. Legal Recognition. You Have Rights No Matter Where You Go. I am a person just like you!

7. Legal Equality. We’re All Equal Before the LawThe law is the same for everyone. It must treat us all fairly.

8. Legal Assistance. Your Human Rights Are Protected by Law. We can all ask for the law to help us when we are not treated fairly.

13. Domestic & International Mobility. Freedom to Move. We all have the right to go where we want in our own country and to travel as we wish.

22. Social Security. We all have the right to affordable housing, medicine, education, and childcare, enough money to live on and medical help if we are ill or old.

25. Health, Wellbeing and Security. We all have the right to a good life. Mothers and children, people who are old, unemployed or disabled, and all people have the right to be cared for equally.

28. Social & International Order. A Fair and Free World. There must be proper order so we can all enjoy rights and freedoms in our own country and all over the world.

29. Communal Responsibility. We have a duty to other people, and we should protect their rights and freedoms.

30. These Rights are Indisputable. No One Can Take Away Your Human Rights.

The United Nations Convention on the Rights of Persons with Disabilities sets out specific Dementia rights.

How many of us with Dementia and other Chronic Diseases can say these are all upheld.

Do local and National Government uphold our rights

Should it not be our right to access Post-Diagnosis Support at the point of diagnosis and for that support to continue to enable us to live our lives within the confines of our individual Dementia’s.

6 thoughts on “Dementia Action Week 2018 – Post-Diagnostic Support – A Human Right”

  1. I came here via Wendy and wove my way through your posts to this point. I was particularly asking Wendy about different from od dementias especially front temporal in its changeability of personality, but the rest of this comment is about support systems, as i have a suggestions. As I am an ex optometrist and retired rehabilitation worker for the visually impaired, you may find it useful to consider as well as your courses, the position of dementia clinic liaison worker. (not a natty description, but it parallels something that has taken off in the eye clinic areas)

    Eye clinic liaison officers have a fairly short accredited training, and serve those recently diagnosed with a impairing condition, who at that point usually have just had eye drops so unable to drive home for a bit if at all, and are facing difficulties not only coming to terms with a diagnosis but also accessing information as they essentially can’t see it and being older (with respect) may not be IT literate to find information, and won’t have discovered maybe how to access it by voice or using the whole gamut of computing using assertive technology.

    But My point is like Macmillan and so on ECLOs set s precedent for personal information direction and support at point of diagnosis. Some are nurses seeking change, some retired folk with interest and capability for empathy for client and family, as its hits each one differently as you can imagine. They can arrange another time to explain all the consultant was trying to say, and bit by bit develop a rapport and leach out appropriate information about varied styles of supports that the individual can put in place or which can be good in other ways.

    As you and Wendy know its not the end more a new and confusing beginning or the rest of your life, and similar is true for visual impairment whatever the cause or age. Its not going to kill you just yet, and life has to be lived.

    You may find you have one in your areas who could see the parallels and talk with her consultant totally with your consultants about how well it works so they realise its a small step which can have huge positive effects and assuage the need which i do comprehend for professional dissociation. Being able to reference someone on to positive support is enabling, everyone feels better, and proportionately the cost is not huge fore the training or the volunteering or employment.




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