Category: Rant Wednesday

Rant Wednesday

I’m in Brighton for the UK Dementia Congress for 3 days this week and as writing and things generally have been  challenging over the last week or so, for this week, I’ll let the media do the ranting.

Six stories that make you wonder where the Civil Society Government’s are fond of talking about, have gone.

My Dad was taken off in the back of a squad car. His crime? Dementia

‘I go without food’: Struggling pensioners reveal what retirement is like

DWP ignores concerns from disabled people who shun activity over benefit fraud fears

Autistic woman ‘left sick and broken’ by two-year universal credit delay

Atos threatens to call police after claimant questions PIP assessor’s mental health training

Welsh government’s independent living decision ‘threatens support of hundreds’

Hopefully the sea air will put me back on form.

Rant Wednesday

This week I began a series of articles in response to Sir Philip Alstons visit to the UK next month, to investigate the UN’s 80+ concerns about Poverty and Disability abuses in the UK here

Sir Philip’s visit is an opportunity to peel back the facade of what the UK claims to do and what is really happening in the real world in the UK.

It is an opportunity for the UN to reinforce the need for the The United Nations Convention on the Rights of Persons with Disabilities (CRPD) to be fully incorporated into UK law. The UK Government recognises the CRPD as International Law but cherry picks which bits it wants to incorporate into UK Law.

Beneath the surface of the fake news and “Government Initiatives” our rights under the CRPD are being abused as are those living in poverty.

Access to financial support with or without a disability is patchy at best and there is no equality of support and services between conditions.

The proposed Liberty Protection Safeguard and the new BMA guidance being circulated to some members about dehydrating, starving and sedating people to their deaths, but for which there will be no public consultation

The cynical side of me feels that the Recent Global Disability and Mental Health Summits and the coming interim announcement for the Long Term NHS plan which just happens to be being published just as Sir Philip Alston visits the UK, are just a smokescreen to deflect from what is really going on.

Peel back the surface and you will find more barriers than could be found in Paris during the French Revolution.

The ever increasing number and size of forms to access entitlements, the inhospitable assessments carried out by persons who may not have enough knowledge of the conditions they are assessing, who write assessments that bear no resemblance to the person they are assessing and the 1930’s attitudes of the media and society where the young shouldn’t pay for the old, those in poverty and the disabled are a drain on society…

The private companies paid to do what NHS staff are more than capable of doing, which can only benefit the fat cat pay, shareholders and profits of these companies instead of using that money for the benefit of people and the NHS.

The privatisation of the NHS is not a new phenomenon, under Margaret Thatcher, “Care in the Community” led to the selling off of council run care homes and institutions, new Labour introduced a more hostile benefits system with things like the Work Capability Assessments and outsourcing Benefit Assessments, public property is now run for profit.

While prices rise and the number of billionaires grow, more people live in poverty or experience discrimination.

The Disabled, LBGT and BAME communities all experience the abuse of their rights.

The 20th Century could be seen as a time of fighting against injustice, inequality and rights abuses.

The 21st Century appears to be a hostile war led by politicians, media and society against, justice, equality and rights.

Is this really the 21st Century Britain we all want.


Rant Wednesday

There are two things guaranteed in life – Death and Taxes.

In Dementia there is Death and Fees.

It may be controversial reader, but surely we have a right to a good death, if that is our wish.

It is something that Doctors should discuss with us and that we should discuss with our families. We should be able to put our wishes in writing, knowing that our wishes will be respected.

The The United Nations Convention on the Rights of Persons with Disabilities (CRPD) states that people with all Disabilities should have equal access to services, Dementia is a Cognitive Disability according to the United Nations, but does not have equal access to services.

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care.

The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

People living with Dementia, pay for end of life care where some other chronic terminal diseases/disabilities get their end of life care free. Some conditions receive Palliative Care, with Dementia it is unlikely that you will.

As a person living with Dementia who has capacity, I cannot state in the legally binding section of my Lasting Power of Attorney, how and where I wish to die because the Court of Protection won’t accept it, what right do they have to refuse my wishes.

I can only put my choices in the request section which medical professionals do not have to respect.

Why can I not choose, it is my life and therefore my death.

Why should I be subjected to and abused by the pathway of BPSD, the proposed Liberty Protection Safeguards and the new BMA guidance on dehydrating, starving and sedating people to death.

I want to choose where to spend and end my last days.

Some prefer to die in a care home, some at home, that is their right and either way they and their families should be supported practically, emotionally and financially as they would with other chronic terminal diseases.

Everyone should have the opportunity, whilst they still have capacity, whether in good or ill-health, to chose their preferences for a good death, no one should have the right to decide for us or ignore our wishes.


The case for and against assisted dying

Arguments Against the Legal Right to Die and Death With Dignity

Arguments in Favor of Right-to-Die Legislation

Doctors ‘need to start early conversation with patients about dying’

Discussing end-of-life care in dementia

Do We Have A Right To A ‘Good Death’?

A Good Death is an Important Part of a Good Life

Should we be able to choose our own death?

Talking about death isn’t easy, but doctors have to get better


Rant Wednesday

Here we go again, it’s Invisible Disabilities Week in the US, however, in the UK “I” newspaper yesterday Julia Buckley writes about her invisible disability and being verbally abused by train staff because she doesn’t look ill.

How do you treat someone with an invisible disability ?

“One of the last times I got the train home to Cornwall, I was bullied by one of the platform staff at my destination, who then gleefully dared me to report her. I wouldn’t, she implied, because I was gaming the system. My crime? I’d booked assistance to help lift my small case and shopping bag – and I didn’t look ill.”


But You LOOK Good! is a book that gives those living with chronic illness and pain a voice. It expresses how they feel, what they need and how others can be an encouragement to them. Read an excerpt here

On Twitter the hashtag #InvisibleDisabilitiesWeek showcases people comments and experiences this week, there are also tweets from @InvDisabilities, and it’s also worth taking a look at the Invisible Disabilities Project

Even in the UK Parliament, this article from 2015 shows that MPs with invisible disabilities can be abused.

People of all ages face stigma and abuse because of their invisible disabilities even the young.

People with genuine invisible disabilities do not game the system, they will be abused by being unable to access things that should be available to them because they have an invisible disability.

When they do access things, they can be taken away because they begin to live with their invisible disability even though they are things that enable them.

Do we have to have a tattoo on our foreheads to stop the abuse?


Rant Wednesday

Recently, it was the centenary of women getting the vote in the UK, Emmeline Pankhurst was a British political activist and leader of the British suffragette movement who helped women win the right to vote, who with others in the movement were abused and vilified.

The 1930’s, where society and the media, turned on the disabled, Gypsies and the Jewish Community, blaming them for the ills of society, which lead to the Holocaust.

It is also easy to forget that through Hungerhauser and T4, the disabled were the first victims of the Holocaust.

In the 1950’s and 60’s, Martin Luther King Jr. who was an American Baptist minister and activist, who became the most visible spokesperson and leader in the civil rights movement from 1954 until his death in 1968, challenged segregation, inequality and human rights abuses, although they are still prevalent in the US today.

Nelson Mandela, who was imprisoned for 27 years but who campaigned against Apartheid and following his release in 1990, became President of South Africa in 1994, marking the end of “White Rule” and the end of the rights abuses of that regime, again there has been little real change.

Looking back over the last 100 years, as Jayne Goodrick has said previously “Everything has changed, but nothing has changed”.

We have gone full circle, women are still fighting for equality, society and the media continues to blame the disabled for the ills of today’s world.

The proposed Liberty Protection Safeguard and the new BMA guidance, which may or may not come into force, could be compared to a modern day Hungerhauser or Aktion T4 Programme.

In Death by deliberate dehydration and starvation: Silent echoes of the Hungerhauser, John M Dolan writes:

“During the final days of his life, Oscar Wilde, aware that death was imminent, lost interest in food but drank whenever one of his visitors brought him a bottle. In reply to a friend’s warning that his drinking was self-destructive, Wilde said: “You are qualifying for a doctor. When you can refuse bread to the hungry, and drink to the thirsty, you may apply for your Diploma.” 

Wilde was a master of hyperbole. He was, after all, the playwright who assured us that “nothing succeeds like excess”  and who is reported to have declared, while sipping champagne on his deathbed: “I am dying as I have lived: beyond my means.”  His deathbed quip about the ability to refuse bread to the hungry was a preposterous characterization of the qualifications of a nineteenth-century physician; but, incredibly enough, as our own century draws to a close, we have among us individuals prepared to take seriously Oscar Wilde’s specifications of the requirements for a physician’s diploma.

It is a remarkable circumstance that, in a nation whose wealth and resources are so vast as nearly to defeat the imagination, scholarly conferences, articles in learned journals, and courts ponder the question whether we can be justified in deliberately causing death by withholding food and water.

Dostoevsky remarks that one may judge the degree of civilisation in a society by entering its prisons. He measures a society’s civilisation by gauging the fate it accords some of its most wretched members. In the same spirit, others argue that the correct measure of the degree of justice in a society is the lot it accords its least fortunate citizens. Rawls’s theory of justice holds that a just society is one which, in addition to according each of its citizens the largest amount of political liberty compatible with each enjoying the same liberty, also allocates all other goods that arise from social cooperation (wealth, income, privileges, and so on) in accordance with a scheme designed to maximise the welfare of the least advantaged representative persons. And Christ’s teaching was: “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (6)

The present task is one of casuistry. In the case proposed for analysis, certain family members are asking the officers of a nursing home to stop supplying nourishment and fluids to a relative who resides in the home administered by those officers. The relative in question is an unconscious man who has been diagnosed as being in a “persistent vegetative state.” Thus, we have before us someone wholly defenceless and vulnerable. If any one fits the biblical description, surely Mr. Stevens, the defenceless disabled man whose nutrition may be cut off, counts as “one of the least of [our] brethren.” Our assignment is to state principles that should be applied in the case at hand and to recommend a course of action. The next section of this article articulates three principles that bear on the case and draws the conclusions they dictate. The sections that follow examine some of the details involved in the case and express some reflections on the moral climate of a society in which cases such as the present one are viewed as presenting a serious challenge to moral intelligence.

The thesis defended here is that the central question raised by the case under discussion is whether it is every permissible to arrange deliberately for a disabled person who is not terminally ill to die of thirst and starvation. It is worth recalling that the Phoenicians, who devised the method of execution known as crucifixion, originally employed the technique as a method of killing by deliberate dehydration and starvation.

The earliest ‘cross’ was actually just a vertical stake to which the condemned was tied and left to expire from thirst and starvation.

It is remarkable that physicians and laymen are now seriously contemplating adoption of a method of killing that was regarded as particularly cruel and degrading in the ancient world and was, among the Romans, who inherited the technique from the Phoenicians, “reserved for slaves and the worst of criminals. …”

Antisemitism is still prevalent and the LBGTI and BAME communities are still fighting for equality.

They say history repeats itself, surely a civilised society should learn from history and the mistakes of our forefathers.

My references to the 20th century aren’t meant to offend, rather to illustrate that nothing has changed and the lessons of those times have yet to been learnt.

We get told “you don’t look like you have Dementia” or “that happens to me” etc by the naysayers.

No one chooses to be abused by a system that on diagnosis, sends you home to die, a diagnosis which means that you have to fight and pay for your support (when you can find it) and a system that leaves you depressed and abandoned and subjected to the medical model of healthcare.

A system that stigmatises you following that diagnosis, that leads you to be abused by the medical model of BPSD (Behavioural and Psychological Symptoms of Dementia) and dehumanised with the lack of a rights based approach to you care, which discriminates against a person because of lack of capacity or advancing age.

In “Behaviour Change Ahead” on Saturday, I will refer to behaviours as emotions and BPSD (The Behavioural and Psychological Symptoms of Dementia) as ERD (The Emotional Responses of Dementia) until someone comes up with a better term.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.


Why Dementia Must Be seen as a Disability

The Suffragette Movement

Lessons from History

Aktion T4 programme

T4 Programme

Martin Luther King Jr

Nelson Mandela

LGBTI rights, where do we stand


Rant Wednesday

Sadly, the perceptions of our diagnosis has reared it’s ugly head over the last few weeks.

The old chestnut “you don’t look like you have Dementia”

The questioning of our diagnosis.

The media misinformation about cures, how to stop/reverse Dementia 


and advertising campaigns that abuse us by portraying someone with Dementia, hunched over, drooling with wrinkly hands, oh the fear, the dread, the suffering.

With all the negativity that surrounds a younger persons diagnosis of Dementia, the benefit system doesn’t throw bags of £50 notes at us from day one ( I do not receive anything), we do not want your pity, nor do we choose to bring the negativity of a diagnosis to our families.

In 7 Elements of a Proper Diagnosis , Teepa Snow describes what is required to get an accurate diagnosis.

It should also be remembered that there are stages of Dementia, early, middle and late stages for want of a better description.

Each stage has it’s own unique challenges and everyone’s experiences are different.

At diagnosis, we receive

Prescribed Disablement ® (Swaffer 2014-15)
“I believe it happens at the time of diagnosis, not late stage, and that it’s a major contributor to dependence and disability far sooner than they need to occur. Being told to give up living our pre dx life, then go home and get our end of life affairs in order, and no advice to live well is what I mean by PD.” (Kate Swaffer 2018)
In the early and middle stages we do fear and dread the future, we may suffer on the bad days but why on earth can we not be portrayed as fighters.

In the so called end stage, where we become unable to express our needs and subjected to the medical model of BPSD (the Behavioural and Psychological Symptoms of Dementia) which leads to the pathway of chemical/physical restraint, sectioning/safeguarding and involuntary care.

The “medical model”, treats the symptoms of our changes and we become institutionalised into for profit organisations, where we become segregated from our families and society.

Recently “exclusive society” comments have been that:

The young shouldn’t pay for the old

At 40, you should pay more taxes to pay for social care 

A drain on resources

The cause of all the ills of society.

In that case, the counter argument could be that at 40 you shouldn’t:

contribute to education and maternity/child services

contribute to reduced fares and admissions etc

In an “inclusive society” it should be that:

Everyone contributes to everything

Through a fair taxation system, based on the ability to pay

Where everyone is treated equally and given the same opportunities and support

Society contributing inclusively to the needs of everyone:

Regardless of age, religion, ancestry.

Whether they are Heterosexual, LBGTI or BAME

Abled or DisAbled

The “social model” leads us to a pathway of inclusive state funded (via taxation), not for profit, support, services, rehabilitation and financial support, which treat the causes and enables us to live with the decreasing limits of our diagnosis.

People with other chronic terminal diseases are portrayed as fighters and admired.

People with a diagnosis of Dementia are pitied and portrayed as sufferers.

People speak for us and say we are self promoting. 

We speak not for ourselves, but for those that do not have a voice.

People make decisions for us.

We can and should help to make those decisions.

Hold on, you might say reader:

A person with Dementia speaking and campaigning for change, that’s ridiculous.

They are incapable of doing things for themselves let alone be involved in developing the services they need and campaigning for a change in the perception of Dementia.

That’s also the arrogance of some medical professionals, who question our abilities when in fact they are questioning the professional competency of our Neurologists and Neuropsychologists.

In my case, they are not questioning me, they are questioning the competency of 7 professionals involved in my diagnosis.

My GP, the Doctor that evaluated my MRI, the Doctor that evaluated my SPECT Scan, then a Professor and 2 Consultant Neuropsychologists that undertook a total of 7.5 hours of testing over 14 months and finally my Neurologist who gave me the diagnosis.

Then there is also big Pharma and the media, who perpetuate the negative narrative for their own gains, promoting the search for a cure and using the negative narrative of fear and dread.

This might surprise you reader, but we do not choose to have a diagnosis of Dementia.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.


How to spot and challenge negative language in the media

Patient engagement in Dementia: extra support leads to informed contributions

Too tired to blog but too angry and despairing not to

A Few Odd Moments

Human rights do not depend on funding, they are fundamental

Munchhausen by Dementia

Clearly we have much still to do…