Sheffield UK, Porter Valley Dementia Cafe, Tomorrow

Porter Valley Dementia Cafe opened on the 6th December 2018 for patients of the 5 GP practices in the Porter Valley area.  This cafe has been funded by the NHS Sheffield Clinical Commissioning Group (CCG) for patients living with Dementia in the Porter Valley neighbourhood of Sheffield.

It is held at the Bents Green Methodist Church 172 Knowle Lane, Sheffield S11 9SJ.

Cafe’s take place on the first and third Thursday of each month.

It is open from 2pm to 4pm.

dementia cafe poster

dementia cafe



 

In The Blogs – January 2019

2019

Diary thoughts with dementia

The Importance of Food Shopping

FALLING WITH SOMEONE IN DEMENTIALAND

The dreaded foggy day…….

BBC BLOGS – ABOUT THE BBC – PANORAMA – LIVING WITH DEMENTIA: CHRIS’S STORY

The Release of the NHS Long Term Plan

Solitary confinement in the New Year

Dementia: a disability?

Not bored, just stagnating……

Christmas – Ba Humbug.

Visions that hide reality

From medical appointment to new medication ……

Crash…

Occupational therapy- moving from too little, too late to right time, right place

Why are we deemed so worthy of so little….?

Do people still talk to you?

Psychiatric detention under the Mental Capacity Act 2005



 

 

 

 

In The News – January 2019

Firstly, a reminder that today is World Cancer Day


The Mental Capacity (Amendment) Bill

Mental capacity law reform: threatens human rights

The current version of the Mental Capacity (Amendment) Bill will strip essential legal protections from the most vulnerable – Mind

Government amendment removes users’ rights to information before deprivation of liberty authorisation in DoLS replacement bill

Mental capacity changes give care homes too much power, critics say

Vulnerable dementia patients could be locked up for three years without review under ‘rushed’ government reform

Government deprivation of liberty ‘definition’ added to DoLS replacement bill but criticised as contrary to case law

DPOs call for support in battle to make ministers think again over attack on rights

Other News

‘This is a must’ – your support as sisters call for dementia rights charter in mum’s memory Read more at: https://www.sunderlandecho.com/news/health/this-is-a-must-your-support-as-sisters-call-for-dementia-rights-charter-in-mum-s-memory-1-9521951

Less than half of eligible over-40s take free dementia health check

End ‘inequality’ of terminally ill dementia patients paying for their care, says report

Ministerial disability group met just three times… and then was scrapped

OBE ‘is overdue recognition of importance of inclusive education’

“I forgot why I was in London”: former Selfridges worker, 35, is living with dementia

Rudd has not delayed roll out of universal credit, DWP confirms

Bungling DWP announces seventh review of disability benefits errors in a year

Bursack: Dig deep to find source of pain for mother with dementia

Equality watchdog needs further legal powers, MPs are told

DPOs call for support in battle to make ministers think again over attack on rights

Shock and anger at government’s failure to invite DPOs to disability workshop

Surprise PIP report raises concerns over ministers’ spending plans

Rudd accused of misleading MPs on universal credit by exaggerating jobcentre visits

Lobby aims to persuade MPs that DWP must First Do No Harm on assessments

Wanting to die at ‘five to midnight’ – before dementia takes over

“You feel really isolated – like you are the only one’ – the dementia cafes helping patients and their carers live well with the disease

‘What my dad’s dementia taught me’

DPAC warns Labour to rethink support for universal basic income

Last-ditch appeal to new Welsh first minister over independent living scheme

Minister seeks recruits for new disability network… but refuses to pay them

Cross-government suicide prevention plan ignores DWP

Capita closes PIP claim after woman complains about use of 25-year-old report



 

Sunday Musings – 03 February 2019

The last 6 or 7 weeks have not been without their challenges.
The fog of Dementia has been a constant companion bringing with it challenges old and new.
Dementia is a cruel disease, apart from the physical damage to my brain, the gradual unpicking of me the person, slowly overtime, can release anger, anger at what is happening to me, anger at what my beloved family face in the future.
But Dementia has shown me a positive side to humanity, new friends many of whom, were like a beacon lighting my way out of the darkness of my diagnosis, through their videos, blogs and showing what can be achieved.
The last few days have seen me turn off social media after harmfull comments directed at people still able to live within the reducing limits of their diagnosis and to question many things and search for some inner peace and some clarity.
Having always planned for the what ifs in the future, spending time sat in silence while my wife was at work, gave time to reflect, draw a line on the past and to reflect on an uncertain future.
The loss of my Grandparents and Parents had a profound effect and sense of loss as did my diagnosis, each one bringing a period of mourning and questioning.
While in Brussels in December I visited the Cathedral there and lit candles for them, sat there in the relative silence, memories of attending mass in my younger days returned but also the realisation that the return to the smells and bells of Catholicism, after a couple of decades, would not bring inner peace.
The day before travelling to Brussels, I had stayed at the Royal Foundation of St Katherine in London, we had spent the evening in quiet reflection, for a while listening to a Piano and Organ recital, finding some inner peace, a beautiful moment in a hectic week.
To reduce the future to tomorrow, which is in itself an uncertain beast but one that can be planned with some certainty, is a plan for now.
The search for some inner peace will continue, I may never be at peace with the future, but finding peace in the here and now may bring some comfort moving forward.


Videos

Peter Berry’s 83rd Weekly YouTube Video

Stephen Tamblin’s 38th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video

BBC Video How to talk about disability without being awkward.


Blog

We need to talk, to let out how we feel, what we fear, and what we enjoy. 

There is no reason for you to be afraid of us or catching our disease.

Take time to talk and listen. It’s good for both of us.

“It’s not what you say that matters; it’s how you make the other person feel.”

George Rook’s blog titled Do people still talk to you?



 

LBGT History Month 2019

February each year is LBGT history month in the UK.

Whilst I am not part of the LBGT community, I have had many friends over the years who are and who have faced the stigma and rights abuses that society perpetuates.

Nor could I fully understand those stigma’s and rights abuses from a personal perspective.

Over the last couple of years, I also have gained friends from the community who also have a diagnosis of Dementia and who face the additional stigma and rights abuses of a Dementia diagnosis.

To be human is to be different.

If we were all the same we wouldn’t have known Albert Einstein, Oscar Wilde, Dr Martin Luther King, Sir Ian McKellen, Nelson Mandela, Derek Jarman, Neil Armstrong, William Shakespeare etc.

With our media oriented society, there seems to be a need to pigeon hole people into labels that can have a positive or negative effect on individuals.

Nobody is perfect and therefore have the right to judge others.

English poet Alexander Pope wrote in the poem An Essay on Criticism, Part II , 1711

“Ah ne’er so dire a Thirst of Glory boast,
Nor in the Critick let the Man be lost!
Good-Nature and Good-Sense must ever join;
To err is Humane; to Forgive, Divine.


LBGT History Month website states

It is now LGBT History Month 2019. This year our theme is Peace, Activism and Reconciliation.

To get involved:

There is more. If you:


The Proud Trust

LGBT History Month is celebrated in February in the UK. Each year, The Proud Trust teams up with Schools OUT UKand LGBT History Month to write a simple, easy to use, education and resource pack. Free to download on this page, we also have a limited number of printed packs available to buy through our online shop each year.

LGBT History Month 2019
Theme: “Peace, Reconciliation and Activism”

We are absolutely thrilled to bring you the LGBT History Month Resource and Education Pack for 2019, in conjunction with Schools OUT UK. The theme this year is of such great importance, exploring LGBT+ activism in the year marking 50 years since the Stonewall Riots, a pivotal moment in LGBT+ rights and history. It is crucial that the struggles and fights of others, to give us the lives we have today, are recognised. It is also so important that we understand the fights that are still continuing to happen, and still need to happen, to give folk liberation and peace.

Our thanks are extended to Phyll Opoku-Gyimah, founder of UK Black Pride, who has kindly written the thought provoking foreword to this years pack.

This four session pack will help you bring LGBT+ awareness into your youth groups or classrooms, and could be delivered as part of PSHE or history!

 


LBGT History Month Scotland states

To mark the 50th anniversary of the Stonewall uprisings in New York, and the birth of the modern Pride movement, the theme will be CATALYST: 50 years of activism.

We want to look at the people who kick-started change and the events that were the turning points along the way. We also encourage you to look at the activists of today, including the people changing the future for trans people and the intersectional activists who speak to the myriad of LGBT experiences.

As always, if you are planning to hold events, host exhibitions or create digital content, you are welcome to disregard the theme. LGBT History Month is created by the community, and we don’t want to stifle your creativity.

CATALYST.png

If you do want to embrace CATALYST, we hope you can use it as a… well… catalyst for idea generation and to frame your event. Over the next few weeks we’ll be assembling a resource pack of posters, digital graphics and a guide to how to maximise your audience when February arrives. We will also shortly be opening submissions for our website event listings at www.lgbthistory.org.uk.If you would like to have a chat about your idea in the meantime, don’t hesitate to get in touch.

We can’t wait to see what you come up with. It’s a big year for LGBT history and culture and we know you’ll find exciting ways to celebrate that.



The Journey Continues…

After the first 4 years of my journey with Dementia, 2018 marked the beginning of change in my journey with Dementia.

As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities

By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself.

By the end of June, I had climbed out of the metaphorical Dark Hole  and begun to leave the black hole behind.

 

 

This article will be gradually updated over time.

Rant Wednesday

So the challenges of my Dementia continues to increase.

The foggy head since before Christmas is now compounded by increased tiredness and fatigue.

Hours into days, days into weeks

A side effect of this has been the increasing challenge to write these articles.

Normally ideas would come along and gradually over days form into an article but there may be nothing there but silence.

I peer into my thoughts and find nothing but the whiteness of the fog all around a bit like being in a soundproof room and shutting the door.

There was a time when thoughts and music would be running round in my head incessantly but for now there is silence.

Information goes in but disappears through the fog quickly forgotten.

If I don’t write it down, it is soon forgotten.

People say “I’ve already told you that” or *you don’t look like you have Dementia”

I try not to look and act like I have Dementia.

To ward off the stigma and maintain my self esteem.

To reassure family and delay the time when my Dementia will severely impact on them.

Yet there is still a lack of understanding of a diagnosis of Dementia at an earlier stage.

Still there is the stigma.

Still there is the ignorance.

Still there is the questioning.

Still the comments on social media (again this morning)

People receiving a diagnosis of Cancer do not all get diagnosed at stage 4.

People with Heart Failure do not continually have Heart Attacks.

Many people, following a Stroke, continue to live their lives within reduced limits.

How can someone from Old Age Psychiatry question the diagnosis of people under 65.

There is a big difference between the early stage and Palliative stage.

The younger Doctors understand the difference, older ones are stuck with 40 year old attitudes.

How can I travel alone, they ask

I am not hunched over, drooling and chemically restrained yet.

To travel takes a lot of planning with technology as my aid.

Assistance from the organisation I am travelling to.

It is my right to do so.

I have the right to make mistakes, even if they have negative consequences.

I have the right to take part in public and political life.

I refuse to sit by and watch the rights of people with Dementia and other disabilities being eroded.

I’m damned if I am going to sit at home, sat in the corner, hunched over and drooling, deteriorating and becoming a burden to my loved ones and society.

I’m damned if ignorance is going to stop me having some sort of life, to take part in my community and family life

I’m damned if the discrimination, defamation, libel and slander of others is going to submit me to a life of rightsless abuse.

I am not a burden.

I do not choose to have Dementia

I am a human being, diagnosed not by guess work or Munchausen, but by a Neurologist and Neuropsychologist, evidenced by an MRI and  SPECT Scan which clearly shows my Dementia.



 

Petition – Make DLA/ PIP Assessment Companies Liable for Wrongly Rejected Claims

  • Created by : Mrs Sophie Goodwin
  • Deadline : 19 March 2019

“Countless disabled and individuals severely in need are not being awarded what they are rightly entitled to. Furthermore, those already in recipient of DLA/PIP are having their awards completely taken away. Companies must be fined when appeals succeed to make them assess claims properly.

Daily, there are numerous reports of wrongly rejected claims. These awards are often taken away or not awarded at all because PIP assessment companies don’t take their responsibilities seriously. Reports are showing consistent similarities – What a claimant has said and what a medical professional who knows them personally, is not being taken into account. In addition to this, assessors are writing claimants have shown examples of doing things that contradicts the truth entirely.”

 

Sign this petition

The Power of Words – Positive and Negative

To start with reader,  lets look at some images containing negative words:

language 1.1

language1.2

language1.3

Now some with Positive words:

language2.1

language2.2

language2.3

Which would you rather be used to describe you reader.


Words have power.

The power to have a negative effect on people and society.

The power to have a positive effect on people and society.

Throughout history, the power of words has been used to suppress sections of society, to encourage hatred of others, to promote nationalism, to show that one cause is right and another is wrong.

The use of words to burn people as witches, Apartheid, the Holocaust, the Crusades and religious persecution are just some of the examples.

The use of words can also detract from peoples rights.

The use of negative words can portray a negative, disabling future when someone is diagnosed with a chronic illness, that the end of life comes the day of diagnosis, that there is no future.

The use of positive words can portray a future when someone is diagnosed with a chronic illness, that it may get worse over time BUT that there still may be life to lead, memories to make, dreams to fulfill.

We are the same person the day after a diagnosis as we were the day before.

In a BBC article and on Sky News today people with a diagnosis of Cancer question the use of words.

Simply by replacing “the right to” with “the cost of” for example, is one way of not upholding people’s rights.

To make people feel worthless and to give up on life.

Labelling Dementia a “Mental Disorder”, when it is in fact a “Cognitive Disability” leads to a wholly different treatment of people with Dementia, another way of not upholding the rights of people living with Dementia and to perpetuate the stigma.

A disability need not be disabling, it is a DisAbility


Resource

Deep UK Guide about Language

BBC – Cancer cliches to avoid: I’m not ‘brave’



 

Sunday Musings – 27 January 2019

Today is Holocaust Memorial Day

A time to remember and remind the younger generations of the atrocities of the Second World War.

It is estimated that six million members of the Jewish faith were brutally slaughtered during World War II as well as millions of other ethnic minorities including gypsies and the disabled.

Shortly after coming to power the Nazis began a propaganda campaign against mentally and physically disabled Germans. They did not fit into the Nazi stereotype of the pure ‘Aryan’, that is physically fit with an obedient mind to serve the Reich.

In addition, the Nazis viewed disabled people as a ‘burden’ on society, and said that they were ‘unable’ to work and ‘drained resources from the state’ and sadly these comments can be heard today.

As early as July 1933, the Nazis passed a law that allowed forced sterilisation of 360,000 men and women, who were deemed likely to produce ‘inferior’ children to prevent “hereditary diseased offspring”.

On July 14, 1933, the German government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law called for the sterilization of all persons who suffered from diseases considered hereditary, including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism.

With the law’s passage the Third Reich also stepped up its propaganda against the disabled, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

The law allowed forced sterilisation of 360,000 men and women, who were deemed likely to produce ‘inferior’ children to prevent “hereditary diseased offspring”.

A diagnosis of “feeblemindedness” provided the grounds in the majority of cases, followed by schizophrenia and epilepsy.

Forced sterilization in Germany was the forerunner of the systematic killing of the mentally ill and the handicapped. In October 1939, Hitler himself initiated a decree which empowered physicians to grant a “mercy death” to “patients considered incurable according to the best available human judgment of their state of health.” The intent of the so called “euthanasia” program, however, was not to relieve the suffering of the chronically ill. The Nazi regime used the term as a euphemism: its aim was to exterminate the mentally ill and the handicapped, thus “cleansing” the “Aryan” race of persons considered genetically defective and a financial burden to society.

The idea of killing the incurably ill was posed well before 1939. In the 1920s, debate on this issue centered on a book co authored by Alfred Hoche, a noted psychiatrist, and Karl Binding, a prominent scholar of criminal law. They argued that economic savings justified the killing of “useless lives” (“idiots” and “congenitally crippled”).

Economic deprivation during World War I provided the context for this idea. During the war, patients in asylums had ranked low on the list for rationing of food and medical supplies, and as a result, many died from starvation or disease. More generally, the war undermined the value attached to individual life and, combined with Germany’s humiliating defeat, led many nationalists to consider ways to regenerate the nation as a whole at the expense of individual rights.

In 1935 Hitler stated privately that

“in the event of war, [he] would take up the question of euthanasia and enforce it” because “such a problem would be more easily solved” during wartime.

War would provide both a cover for killing and a pretext–hospital beds and medical personnel would be freed up for the war effort. The upheaval of war and the diminished value of human life during wartime would also, Hitler believed, mute expected opposition. To make the connection to the war explicit, Hitler’s decree was backdated to September 1, 1939, the day Germany invaded Poland.

For instance, after the Nazi invasion of Poland, the Nazis murdered thousands of seriously ill Poles in hospitals.

The experience gained as a result of the euthanasia programme was also put to use from 1941 as the Nazis sought to murder the Jews of Europe.

Systematic Killing of the Handicapped Five handicapped prisoners photographed at Buchenwald concentration camp for propaga...

Systematic Killing of the Handicapped Five handicapped prisoners photographed at Buchenwald concentration camp for propaganda purposes. 1938 – 1940 Hartheim Castle was a euthanasia killing center where people with physical and mental disabilities were killed by gassing and lethal injection. Hartheim, Austria

Fearful of public reaction, the Nazi regime never proposed a formal “euthanasia” law. Unlike the forced sterilizations, the killing of patients in mental asylums and other institutions was carried out in secrecy. The code name was “Operation T4,” a reference to Tiergartenstrasse 4, the address of the Berlin Chancellery offices where the program was headquartered.

Physicians, the most highly Nazified professional group in Germany, were key to the success of “T-4,” since they organized and carried out nearly, all aspects of the operation. One of Hitler’s personal physicians, Dr. Karl Brandt, headed the program, along with Hitler’s Chancellery chief, Philip Bouhler. T-4 targeted adult patients in all government or church-run sanatoria and nursing homes.

These institutions were instructed by the Interior Ministry to collect questionnaires about the state of health and capacity for work of all their patients, ostensibly as part of a statistical survey and were responsible for at least 70,000 deaths.

People with Disabilities <ul><li>Mentally disabled people were identified by a black triangle with the word “Blod” sewn on...

The completed forms were, in turn, sent to expert assessors physicians, usually psychiatrists, who made up “review commissions.” They marked each name with a “+,” in red pencil, meaning death, or a “” in blue pencil, meaning life, or “?” for cases needing additional assessment. These medical experts rarely examined any of the patients and made their decisions from the questionnaires alone. At every step, the medical authorities involved were usually expected to quickly process large numbers of forms.

The doomed were bused to killing centers in Germany and Austria walled-in fortresses, mostly former psychiatric hospitals, castles, and a former prison — at Hartheim, Sonnenstein, Grafeneck, Bernburg, Hadamar, and Brandenburg. In the beginning, patients were killed by lethal injection. But by 1940, Hitler, on the advice of Dr. Werner Heyde, suggested that carbon monoxide gas be used as the preferred method of killing. Experimental gassings had first been carried out at Brandenburg Prison in 1939. There, gas chambers were disguised as showers complete with fake nozzles in order to deceive victims — prototypes of the killing centers’ facilities built in occupied Poland later in the war.

To a certain extent both the Protestant and Catholic Churches in Germany protested against the euthanasia programme. In July 1941 a letter from the Catholic bishops was read out in all churches, declaring that it was wrong to kill.

Opposition to the programme increased amongst the Catholic population of Germany. During July and August 1941, Bishop Clemens August Graf von Galen, a Catholic Bishop issued three sermons condemning this practice; he sent a telegram of the third sermon to Hitler calling on him to “defend the people against the Gestapo”. This third sermon was also reproduced and sent all over Germany to families, and even to German soldiers on the Western and Eastern Fronts.

Fearing a public uprising across Germany, Hitler ordered a stop to the killings.

The Murder of the Handicapped

However, the policy continued in one way or another through to 1945.

Between the middle of 1941 and the winter of 1944-45, in a program known under code “14f13,” experienced psychiatrists from the T-4 operation were sent to concentration camps to weed out prisoners too ill to work. After superficial medical screenings, designated inmates Jews, Gypsies, Russians, Poles, Germans, and others were sent to those “euthanasia” centers where gas chambers still had not been dismantled, at Bernburg and Hartheim, where they were gassed.

At least a further 250,000 disabled people are believed to have died between 1941 and 1945.

Wartime, Adolf Hitler suggested, “was the best time for the elimination of the incurably ill.” and the murder of the disabled continued until 1945.

It is important not to repeat the mistakes of history, yet further genocides have continued worldwide, including in Rwanda and Bosnia.


You would think that society would have learned from the past reader but a quick search on Reddit shows a darker side to society.

The developmentally disabled are a burden on society

I believe severely mentally disabled people are nothing but a burden and a waste of everyone’s time.


The Bundestag voted in November 2011 to erect the memorial in honor of the victims of the Nazi’s so-called euthanasia program – code-named T4 – for Germans who were not considered “useful,” such as those who were physically handicapped, or psychiatric patients deemed unworthy to live.

At the unveiling of the memorial in Berlin, the then German culture minister, and Klaus Wowereit stated:

“We often forget that even today, around 10 percent of the people in our country live with mental or physical disabilities,”

“Our society has a social responsibility to these people… No life is unworthy.

You have our solidarity, our encouragement and our empathy.

You have the right to an equal life in our society.

Because only by caring is our society worth living in.”

In 21st Century Britain reader, everything has changed, or has nothing really changed…


It’s been a quiet week, a time to rest and recharge the batteries before the challenges that lie ahead.

The rights of people living with Dementia, under the United Nations Conventions and therefore International Law, will play an ever increasing role in advocacy in 2019 and beyond.

Decisions will more and more be challenged under these Conventions.

The decisions of so called “Best Interest Meetings” will be challenged more and more to show that their decisions comply with the United Nations Conventions and International Law.

CCG’s and Health Trusts will be challenged when they do not provide equal services between conditions.

The services that are provided for conditions such as Cancer, Heart Disease, Stroke, Diabetes etc, must be provided equally for Dementia under the United Nations Conventions and International Law.

Legislation such as the Mental Capacity (Amendment) Bill will be challenged where they have the potential to remove peoples rights under the United Nations Conventions.

As will transport companies who fail to provide adequate assisted travel and the lack of reasonable adjustments under the Equalities Act 2010.

Around the UK, there are small pockets of good practice.

But generally, everything has changed and nothing has changed.

The need to challenge rights abuses and learn from the lessons of the past is even more pressing.

Dementia and other Disabilities will no longer sit at the back of the room silently and passively as everything about us, is without us.

The lessons of the past, should not haunt all our futures.


Videos

Peter Berry’s 82nd Weekly YouTube Video

Stephen Tamblin’s 37th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video

BBC Video How to talk about disability without being awkward.


Blog

“Above all, we need to change the way we do dementia in this country.”

George Rook’s blog titled Visions that hide reality