Today’s article is a guest blog by my friend Julie Hayden.
Julie lives with Dementia and is co-founder of Young Onset Dementia Alzheimer’s (YODA) group in Calderdale, UK.
In Sheffield where there are no Admiral Nurses or support provided by the NHS or local Council, especially if you are under 65, yet there is an Admiral Nurse 17 miles away in Doncaster that we cannot access.
In Calderdale the situation is the same as Sheffield, yet the situation is different in neighbouring Kirklees.
So, on to Julie’s article.
- NHS funded Specialist nurses
- NHS funded Rehabilitation services
- NHS funded Palliative Care
- NHS funded Local support services specific to a person’s health need
- Acceptance of diagnosis unquestioned by all professionals
All of the above are covered if you happen to have cancer, heart disease and stroke along with many other conditions which are defined as having a medical root.
Dementia is also a medical condition, being a degenerative, neurological disease. In the UK it is also THE biggest killer of women, over and above that contained in the above list. It is the 2nd biggest killer of men.
According to Government statistics, in 2017 the top 3 causes of death were:
2 Heart Disease
Why then, when we are needing the above support, is it so often denied to us!
I live in Calderdale, whose local health authority works in partnership with it’s neighbouring borough of Kirklees.
Within Kirklees there is a designated dementia care service, inclusive of an established Admiral Nurse team. The team includes a group of 4 workers specifically to support those with early onset dementia.
This provision is inaccessible to those who live within Calderdale. Here we have no defined dementia care services.
When diagnosed, whatever your age, you are dealt with by Older People’s Services, which is already starved of funding. We are passed around general health practitioners, neurologists and psychiatrists, often falling into cracks in the system, resulting in our needs being unmet.
People living with dementia and their carers are being continually given short shrift.
Wanting and willing to fight for an increase in available services (though why should we have to expend our limited energies doing this?) we have made enquiries as to how we can campaign for Admiral Nurses within our borough.
For this to happen we were informed that it would necessitate our fundraising to employ a band 7 nurse (who would manage the service) plus two band 6 nurses to form a basic team.
The overall amount needed for this would be £90,000 to cover the first 2 years, a sum which would have to be matched by our local health commissioners (CCG). Our only way around this would be to fundraise for a monthly drop in clinic run by a visiting Admiral Nurse.
In this way we could run a sample service which could be used to demonstrate in real terms to our CCG the demand for a regular team to be established (though no guarantees that this would prove effective). The cost of this would be around £500 per clinic. Can you imagine someone living with cancer being asked to do the same thing before being allowed access to MacMillan Nurses?
There would, rightfully, be a public outcry, yet for those living with dementia and their carers this seems to be the accepted pathway, leading to a disparity of services across the country and a clear breach of our human rights.
Looking at Article 25 of the United Nations Convention on the Rights of Persons with Disabilities:
“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”
It is obvious to many reader, that services in Calderdale, Sheffield, Shropshire and many other areas, do not comply with the UN Conventions, which are International Law and recognised as such by the UK Government.