Category: Rights

So You Think You Have Disability Rights in the UK – Think Again

Well reader, you may have heard of the United Nations Human Rights Convention and the Convention on the Rights of Persons with Disabilities. You may of also heard of the UK Disability Discrimination Act and the UK Equality Act.

You may be surprised to learn reader, that none of these are not fully enforced in the UK, so lets have a look at what has been happening in recently.

Ageism widespread in UK, study finds

Ageism Hurts and it’s Discrimination

Need to use a wheelchair for a Benefits Assessment

Want to appeal a Benefits decision

Need to get a train:

TransPennine Express accused of ripping up disability discrimination legislation

Rail staff told not to help disabled passengers board if it makes train late

Or Perhaps fly:

Four airports found to be failing disabled passengers

Need to get a disability pass and not on benefits or have certain conditions

RailCardBlue Badge, CEA Card,

The new rules announced in January 2018, to make Dementia and Autism eligible for a Blue Badge have yet to be implemented in my area “but are out to discussion”

Need Post-Diagnosis Support, Services and Funding:

The Post Code Lottery

A third of people with dementia in England ‘not receiving full care’

Councils tighten reins on personalised care

Need Assisted Living, say goodbye to money and property

Mum has dementia and now Dad’s dead she will have to sell her home. Why?

Paying for Social Care. There are ways out of our care crisis, if only May had the guts to pick one,

Have Behavioural Issues, Hello BPSD:

Seniors In Pain Being Inappropriately Restrained

Antipsychotic drugs harm older people, let’s reduce their use

At the end We’re told we are a burden. No wonder disabled people fear assisted suicide

Do We Have A Right To A ‘Good Death’?,

Food Poverty

Doctors ordered to recognise the ‘human value’ of patients with dementia as part of a major overhaul of care

Disabled people losing their benefits a ‘scandal’ say campaigners

Why won’t ministers come clean about the impact of cuts on disabled people?

Thousands of disabled people failed by government’s ‘culture of indifference’, report finds

TUC Disabled Workers’ Conference: Government ‘has created hostile environment for disabled people’

Thousands of people with learning disabilities are “trapped” in institutional care and are having their “human rights routinely ignored”, MPs have heard.

Here’s why Human Rights in Healthcare Are Needed More Than Ever

UN denounces British government for failing to protect disabled peoples’ rights

Liam Fox’s Brexit trade bill set to crush disabled people

Talking to persons with disabilities you hear about how they lose support because they can speak at conferences, assessed as fit for work, because they can use social media and the other day someone told me that on more than one occasion, bus drivers have told them to walk instead of catching the bus for one stop to the supermarket, even though they cannot walk that far.

Then there are the perceptions of disabilities, the drooling hunched over wheelchair bound, incapacitated persons with the wrinkly hands, Dementia only affects the old, the old and disabled are a drain on the young and many more discriminating, denigrating comments .

Then there is Disability abuse, the name calling and labelling. The worst for a person with Dementia is “You don’t look like you have Dementia”

There is a slow change but as with the EU Withdrawl Bill, not everything is for the better.

There is now the Inquiry into dementia and disability launched by APPG on Dementia which may be a response to the UN to investigate Tory record on poverty and human rights or may be the experiences of others and myself have made me cynical.

In closing reader, whether Governments and Healthcare systems like it or not, rights based care for persons with disabilities is here to stay.

Care should be inclusive, rights based, equal between chronic diseases, with post-diagnosis support care and funding for the person and their carer/family.

We all need access to these things at some point in our lives, we pay our taxes and in return it is the duty of all to provide the care that we all need. If you are diagnosed with the 3 main causes of death in this country and other diseases, you shouldn’t be left without care or have to jump through hoops to access it.

The history of the 20th Century tells us that all appropriate inclusive care and support, services and funding should be available automatically, from the point of diagnosis upholding our rights in the process so that we never return to those dark days of disability abuses.


D Day, the Post War Settlement and the lessons from history still to be learnt.

Operation Overlord was the code name for D-Day, the largest invasion force in history, on 6th June 1944. It brought together diverse cultures, working to a common goal, the culmination of a world war, that confronted an axis of countries whose ideas were based, to a large part, on discrimination and human rights abuses.

It was to be a time, an opportunity, to learn from the the war and confine the old world order to history, building a new, fairer, inclusive world. the reality was to be very different.

The operation was the culmination of two years of planning and there were around 9,000,000 tonnes of supplies and 2,000,000 allied troops stationed in Britain before the invasion.

On D-Day, an armada of up to  5,000 naval vessels departed English ports with up to 160,000 troops aboard. Over 800 aircraft flew up to 30,000 men into occupied territory from midnight on 6th June 1944.

Also in 1944, the then Minister of Health, Henry Willink,  proposed the formation of a National Health Service.

All of this culminated, 11 months later in peace being declared in Europe and the Pacific in 1945, with the hope that lessons would finally be learned and that a vision of a “Fairer Society” would become a reality.

In July 1945 Labour won the General Election in Britain, starting the rebuilding process and in October that year the United Nations was established. The post war settlement was touted as a new dawn for a civilised fairer society, the reality has become somewhat different, with politics by Consensus.

By 1948, following the Beveridge report, the NHS began to much fanfare but this served to paper over the cracks of the “Fairer Society”. The Windrush generation began arriving in Britain, being one of Attlee’s Government of 1945 – 1951, failings, to give them British citizenship, an unfair mistake that still rancour’s today.

During the 50’s and 60’s, slum clearances and road building amongst other schemes, papered over the cracks of social and disability inequality. In 1957, Harold Macmillan said “most of our people have never had it so good”, which you could interpret reader, from the use of the word “most”, that during this time, governments were aware of inequalities and if things were that good during this time, successive governments failed to improve the funding model for the NHS. During the 1960’s things changed.

During the 70’s came financial crisis and strikes, it became apparent that society wasn’t fair and equal leading to the arrival of Thatcherism of the 80’s and 90’s, the riots, miners strike and the introduction of “Care in the Community” a supposed end to the warehousing of the disabled prevalent for hundreds of years, which again papered over the cracks with inadequate funding, support and services.

Then came New Labour, with their theme song “Things can only get better”, the dubious Iraq war and the failure to Control the banks and we also had the PR wonder called the Minimum Wage and Tax Credits.

Instead of controlling the inflated wages of some, prices, increasing company profits in part paid for by increased prices, tax avoidance and introducing a statutory living wage, we had the minimum wage and tax credits trumpeted as a fairer Britain, more papering over the cracks.

Following the General Election of 2010, the new Chancellor of the Exchequer found a note from his predecessor “There is No Money”, in fact New Labour had turned a budget surplus into a deficit of £1.6 trillion pounds which enabled Austerity and the draconian measures that followed.

With Austerity have come the cuts, the rich keep getting richer, recently it was claimed that 99% of the worlds money is owned by 1% of the worlds population, indeed George Soros recently received a pay settlement of £70 million, who needs that much. He is also a Hungarian born, American citizen, meddling in British politics.

Following the General Election in 2015 and the subsequent Referendum leading to “Brexit”, may be reader, leaving the European Union provides an opportunity to build a “Fairer Society” free from Legislation and interference from Brussels. May be politicians should spend less time arguing over a Referendum, which it was made clear by David Cameron in the General Election campaign of 2005, was a one time vote with no second Referendum.


With the advent of Social Media, we seem to have moved on from papering over the cracks to “rule by division” and the “blame game”, dividing opinion by

blaming one part of society for ills of another,

while playing political football with peoples lives.

Austerity has also led to the out sourcing of benefit assessments undertaken by people unqualified to assess specific conditions, cuts to benefit payments and a lack of funding, services and support for disabilities that a “Fair Society” would surely provide.

There is still no universal access to post diagnosis support for people living with Dementia or other disabilities and their carers, including activities and sufficient signposting to taking part in research.

The abuse of our rights with Dementia and disabilities continues including prescription charges if you are diagnosed under 60 years old and access to transport and the failure to enforce the UN convention on the rights of persons with disabilities, also inclusion, engagement and equality in decision making and services.

The vision of the 1942 Beveridge Report which proposed widespread reform of the system of social welfare to address the five “Giant Evils” in society at that time; squalor, ignorance, want, idleness, and disease, seems to have been lost in a media run era of self interest, where the newsworthy get the lions share of attention.


It seems to me reader that, far from moving toward to a “Fair Society”, we are moving back past Thatcherism to the sectioning and warehousing of people with Dementia. In  Britain it is reported that currently 70% of care home residents have Dementia, what are the figures for Heart Failure and Cancer, the 2nd and 3rd biggest killers in the UK, 2017?

Lately, the blame game has moved on to the increased cost to society of Disabilities. The post war hope of a “Fairer Society” has faded and you may conclude reader, that we seem to be going back to a society that hasn’t learned from the Great Depression of the 1920’s and the subsequent 1930’s, where blaming parts of society for the ills of others and where disengagement and discrimination became the norm and after 8 years of minority Government, the opposition isn’t blameless.

There is too much talk and not enough action by those that can make a difference.


Do Politicians always tell the truth at elections anyway reader, how many times have we heard this or that will change, during an election campaign, nationally or locally, for nothing to change anyway.

They could undertake a social revolution, working together to build an inclusive fairer society, without the influence of big business and self interest, with fair wages and prices, services inclusive of disabilities as the norm.

It could also include making voting in elections compulsory as in Australia, as my Father used to say, “If you don’t vote, you cannot complain” and the NHS becoming proactive rather than reactive.

If the NHS and society were more proactive with appropriate integrated support and services, may be I and many others could lead a longer better life within our disabilities and may be other conditions like my COPD and their co-morbidities will take us before we enter the final stage of our Dementia’s or other disabilities, saving us from the indignities and the suffering of our families that that final stage brings.

I can hear them now chocking on their Lunches in both houses of Parliament and the Lobbyist’s rushing to their phones, David Cameron used to harp on about “The Big Conversation”, well maybe it’s time for it to really happen however, my own experiences of starting a conversation have been on the whole negative.

Whilst the World Cup is on Theresa May, Jeremy Corbyn and Vince Cable, stop playing political football with peoples lives, have a big conversation together, end the Austerity caused by the £1.6 trillion deficit, improve NHS funding, improve support and services for people with disabilities and end the Barbaric systems we have in this country.

No more Guidelines and Awareness, it’s time for Policy and Action


I write these articles in my blog as a record of my journey through Dementia, to comment and hopefully raise some awareness about life with a Dementia. Sadly, the people that have the power to bring change are still unwilling to engage and fail to respect the rights of people with disabilities.

Whilst I write about my experiences in Dementia, which is relevant to my life at this time, it is important to remember that there are many other disabilities and their carers experiencing the same barriers and discrimination as the Dementia community. It is surely time for government and organisations to put aside self interest to build a fairer society, indeed according to Oxfam

The richest 1% now has as much wealth as the rest of the world combined

As I look into the distance, across the long road of Dementia, where my journey is but a few years old, I search for the sunrise through the somewhat gloomy sky, hoping action will bring the sun to our world of Dementia and other misrepresented disabilities and our carers.


21st Century Britain – Society Guardian’s take on Disability Discrimination

In last Thursday mornings Guardian newspaper article The disability system is blocking people like Jaki from their benefits – literally Frances Ryan, tells of peoples experiences in accessing buildings for their re-assessment of Disability Benefits in total disregard for their rights.

From 5 inch steps to intercoms at the entrance that a deaf person cannot use, these people and many others have been deemed fit for work.


As examples:

Article 9 of the United Nations Convention on the Rights of Persons with Disabilities states

1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:

(a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;

(b) Information, communications and other services, including electronic services and emergency services.

2. States Parties shall also take appropriate measures to:

(a) Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;

(b) Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;

(c) Provide training for stakeholders on accessibility issues facing persons with disabilities;

(d) Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;

(e) Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;

(f) Promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information;

(g) Promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;

(h) Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.

Article 28 of the United Nations Convention on the Rights of Persons with Disabilities states

1. States Parties recognise the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realisation of this right without discrimination on the basis of disability.

(c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;

These are just 2 of the Articles that the UK is signed up to and the Department for Work and Pensions has so far failed to comment to The Guardian article.

Equality Act
protect the rights of individuals and advance equality of opportunity for all. to update, simplify and strengthen the previous legislation and. to deliver a simple, modern and accessible framework of discrimination law which protects individuals from unfair treatment and promotes a fair and more equal society. The Equality Act will replace all the previously mentioned Acts.

You may not be able to get access to the place of your assessment, or have assistance of someone to help you with your disability during and assessment, or you may be in hospital unable to communicate or in a Coma, it doesn’t seem to matter, the rules are rigid with total disregard for our rights.

It appears to me reader, that the Department for Work and Pensions is in breach of the UN convention (CRPD) and the UK’s own Equality Act 2010, you may disagree, that is your right.





UK Prescription Charges and Dementia

Alzheimer’s Disease International posted the following on Twitter on Wednesday:

“ADI calls for placement of anti-dementia drugs on WHO Model List of Essential Medicines after French Ministry of Health announces end to reimbursement of four anti-Alzheimer drugs. ADI calls for fair and equitable access to Dementia care.”

Along with this Link.

This got me thinking, I have Dementia and I pay for a Pre-Payment Certificate for my prescriptions. So I looked into it more, as when I rang last year, I was told I didn’t qualify for medical exemption. This is what I found:

In England, Scotland and Northern Ireland, you can get free NHS prescriptions if, at the time the prescription is dispensed, you:

  • are 60 or over
  • are under 16
  • are 16-18 and in full-time education
  • are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate (MatEx)
  • have a specified medical condition and have a valid medical exemption certificate (MedEx)
  • have a continuing physical disability that prevents you going out without help from another person and have a valid MedEx
  • hold a valid war pension exemption certificate and the prescription is for your accepted disability
  • are an NHS inpatient

You’re also entitled to free prescriptions if you or your partner – including civil partner – receive, or you’re under the age of 20 and the dependant of someone receiving:

  • Income Support
  • Income-based Jobseeker’s Allowance
  • Income-related Employment and Support Allowance
  • Pension Credit Guarantee Credit
  • Universal Credit and meet the criteria.

If you’re entitled to or named on:

  • a valid NHS tax credit exemption certificate – if you don’t have a certificate, you can show your award notice; you qualify if you get Child Tax Credits, Working Tax Credits with a disability element (or both), and have income for tax credit purposes of £15,276 or less
  • a valid NHS certificate for full help with health costs (HC2)

People named on an NHS certificate for partial help with health costs (HC3) may also get help.

Looking into the Medical Exemption Certificate I found:

You can apply for a medical exemption certificate if you have one of the following medical conditions:

  • a permanent fistula (for example, caecostomy, colostomy, laryngostomy or ileostomy) which needs continuous surgical dressing or an appliance
  • a form of hypoadrenalism (for example, Addison’s Disease) for which specific substitution therapy is essential
  • diabetes insipidus and other forms of hypopituitarism
  • diabetes mellitus, except where treatment is by diet alone
  • hypoparathyroidism
  • myasthenia gravis
  • myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)
  • epilepsy which needs continuous anticonvulsive therapy
  • a continuing physical disability which means you cannot go out without the help of another person
  • cancer and are undergoing treatment for either:
    – cancer
    – the effects of cancer
    – the effects of cancer treatment

These are the only conditions that entitle you to a medical exemption certificate. If you’re not sure about the name of your condition, speak to your doctor.

Source: NHS Choices Website

So, Dementia is not covered. But in Wales, since 1 April 2007 prescription medicine has been provided free in Wales. All patients registered with a Welsh GP who get their prescriptions from a pharmacist in Wales are eligible.

“We firmly believe by providing people with the medication they need helps to keep them well and out of hospital, thereby reducing the overall cost to the NHS. It should never be the case that people with serious chronic conditions can not afford to collect their prescription.”
“Ensuring patients have the medication they need not only improves their own health and wellbeing, it also benefits the health service as a whole by reducing hospital attendance and placing fewer demands on general practitioners.”
“It is socially irresponsible to charge people with serious chronic conditions for the medication they need. Free prescriptions are progressive and an integral part of our health services in Wales.”
Source: Welsh Government
Dementia is a chronic disease as is Cancer, Diabetes, Myasthenia Gravis but the above terms for exemption may go against the Equality Act 2010, which makes it illegal for people to be treated less favourably because of a range of conditions including disability and the UN Convention on the Rights of Persons with Disabilities (CRPD) recognises Dementia as a Disability.
The UN Convention defines persons with disabilities as including ‘persons with
disabilities include those who have long-term physical, mental, intellectual or sensory
impairments which in interaction with various barriers may hinder their full and
effective participation in society on an equal basis with others.’ There can be little
doubt that persons with dementia are addressed by this definition and are hence
intended beneficiaries of the Convention.
In Harnessing the United Nations Convention on the Rights of Persons with Disabilities to improve the lives of persons with dementia
Neil Crowther, 1 March 2016 writes
The Convention is broad in scope. Of particular relevance to the situations
experienced by persons with dementia are Articles concerning:
• Awareness-raising: The Convention requires that States take action, including at
the family level, to foster respect for the human rights of persons with disabilities.
This includes action to combat stereotypes, prejudices and harmful practices
including those based on age and to promote awareness of the capabilities and
contributions of persons with disabilities. This is particularly relevant to
addressing the stigma, discrimination and social isolation that is a common
experience of many persons with dementia and which acts as a major barrier to
their participation in society and in achieving the social change necessary to
secure their inclusion and wellbeing.
• Equality and non-discrimination, including the obligation to provide
‘reasonable accommodation’
The Convention requires that States ensure that persons with disabilities enjoy equality before the law and to guarantee legal protection against all forms of discrimination. This may include unlawful discrimination by healthcare and other service providers, driving license authorities, insurance companies and employers.
Discrimination includes the failure to provide ‘reasonable accommodations’
– that is, modifications and adjustments that enable persons with disabilities to enjoy or exercise their human rights on an equal basis with others.
I understand reader that you may have to pay for your medicines but in the UK we have the NHS supposedly free from the cradle to the grave.
It is an unequal system and this is just one example where you may have a chronic terminal disease but depending on the disease you may not get free prescriptions, funding and services that you should be entitled to and your own individual taxes have contributed to.
Would you consider this a fair system reader, or one that discriminates, for some diseases against others, the abled against the disabled, I’ll let you decide.