I’ve been on my travels this week to London and Milton Keynes.

For three days I was able to give the appearance of some normality but the rapid use of my cognitive reserves told by Thursday.

We choose to put up a façade of normality as a sort of comfort blanket for ourselves and our families and talk about what we can do, not to belittle the experiences of others but to offset the abusive stigma that we face that can lead to disablement at the point of diagnosis and beyond.

Behind closed doors, the reality of living with Dementia takes over, it’s no party, I can tell you, mourning for a life that is slowly disappearing, losing control of who we are and being challenged by the person we are becoming.

---

The Brexit Smokescreen

The smokescreen of Brexit continues, passed the 29th March, as while MPs and the media focus on Brexit, more important concerns such as poverty, disability and rights are pushed ever further to the back of their consideration and action.

Since Sarah Newtons resignation as the Minister for Disabilities, no one has been appointed in her place, leaving a vacuum in Government for the representation of people living with disabilities.

Tory Vice-Chairman says there will be no Minister for Disabled People until Crisis Resolved

The situation is further exacerbated by the Shadow Disabilities Minister, Marsha De Cordova, who seemingly talks more about what she is doing in Brixton than the potential rights abuses of the Mental Capacity (Amendment) Bill and the rights of people living with disabilities under the United Nations Conventions.

 

 

 

 

 

 

---

The Secret Facebook Group

I liken the House of Commons to a secret Facebook group, cut off from the rest of Facebook.

Anti-Democratic, anti-rights, anti anything that doesn’t fit with their own personal self interest.

I also liken the leaders of the Political parties to Neville Chamberlain, appeasers, waving their order papers and scanning their mobile phones in the chamber whilst,appealing to the majority of their party and big business,  oblivious as the anger of people on both sides of the debate rises.

Also to Nero, fiddling with indicative votes whilst Democracy burns a slow death in the UK.

---

The Future

We need the unifying words of Churchill and the Social conscience of Lloyd-George.

Not the aggressive policies of Thatcher and Attlee who used force to further their interests.

As in 1945, we need a Caretaker Government, a Government of National Unity with a cabinet from the four corners of the Union to re-enfranchise the people of the union.

We need a Carbuncle to fight the disease of self interest and anti-Democratic, anti-rights, anti anything democratic.

To elect MPs that have long left behind the infant school playground and have learnt the skills of debate, compromise, democracy, social conscience and to be held to account by their local party.

Who listen and act on the concerns of the people they represent, thereby upholding their rights and the democratic principles they serve.

To once again be the servants of the people not their own, big  business and their National Party’s self interests.

---

The Oxford Living Dictionary defines a politician as either:

1 A person who is professionally involved in politics, especially as a holder of an elected office.

1.1 A person who acts in a manipulative and devious way, typically to gain advancement within an organization.

---

Vacuum

The way the House of Commons conducts its business currently is leaving a political vacuum that the far-right and far-left are waiting to fill.

We only have to look back 100 years or so to the history of the 20th Century to realise that there may be a Lenin or Hitler, waiting in the wings, with their final solution to the Constitutional crisis that we now face.

Like Dementia, their rise to power over the individual is insidious, until one day they take control of us, stripping us of all humanity and choice.

---

Nominations for the National Diversity Awards 2019

You can nominate here

---

Other Nominations

You can nominate here

---

Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP

---

Consultations

Consultation – Learning disability and autism training for health and care staff

Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

New General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

---

Survey

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019

---

Videos

---

Newsletters

Alzheimer Europe

LEAD Coalition

---

Blog

“In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.

So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.

Here are some dos and don’ts for practice staff. No doubt you can add more…”

George Rook’s blog titled Mr Kipling’s general practice

---

New Resources

Dementia resource for care professionals

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia

---

---

 

 

 

 

Today is the second Anniversary of my original Dementia diagnosis.

It has been a hard road to travel, with it’s ups and downs.

Not made any easier by the negative comments of some on social media and elsewhere, which continue today, in response to an newspaper article.

“I’ve yet to meet a patient or family affected by dementia who regard the diagnosis as a “gift”. An alien narrative about living with dementia is being promoted by some individuals and charities that is upsetting and offensive to those of us who work in the field and our patients.

Which was responded to as

I HATE the disease ,I hate what is done to my dad and how it’s split my family but I’m happy for folk that are able to make the most of it and admire those that can live in the moment .The public need to know both sides of the coin though.

My response being:

Thank you, a voice of reason, no one living with Dementia says it is a bed of roses, we are fed up with the stigma perpetuated by the media and some professionals…

…There is a life to lead within the reducing limits of this cruel disease, we need to be enabled not disabled by a system that only sees Dementia in the palliative stage…

…your experiences of Dementia are no less valid to ours, Dementia is a chronic terminal disease the same as Cancer Heart Failure etc, but people coping with those diseases are not questioned as we are…

…because that is all we are really doing – Coping. We do our best to get through each day, some of us try to encourage others to live within their limits, not to abuse the experiences of care partners such as yourself…

…All of us living with Dementia are so grateful for the sacrifices that our care partners such as yourself make often to the detriment of your own health, even if we are unable to express it.”

Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write articles to hopefully enable some who follow, receiving their diagnosis.

---

Nominations for the National Diversity Awards 2019

---

Other Nominations

You can nominate here

You can nominate here

---

Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP

---

Consultations

Consultation – Learning disability and autism training for health and care staff

New Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

New Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

---

Survey

New Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

New Tell us your experience of living with Dementia

New Sheffield CCG – Urgent Care Review 2019

---

Videos

 

---

Blog

“A statistic haunts me as I search for a new care home in preparation for mum’s final move. On average, residents of care homes get only two minutes of social interaction with staff a day.

While this statistic is based on a sample of homes in England, I fear it sums up the quality of care in the UK. The randomised control study found that increasing interaction to 10 minutes a day improved residents’ wellbeing. Of course, 10 is better than two, but is 10 minutes enough?”

Julia Powell’s blog titled Desperately Seeking a Good Care Home

---

New Resources

Dementia resource for care professionals

---

---

 

The shame of the sad events at the Mosque’s in Christchurch, New Zealand on Friday, underpin how society is becoming more divisive.

In the 21st Century, people have become media victims, where their looks, thoughts and actions are being controlled and manipulated by a media, hell bent on selling copies and profits to the detriment of all.

They present a perfect human being, through looks, employment, hobbies, relationships etc that leaves no room for all the differences that make us all human.

They preach intolerance of how we look and act which spreads into other aspects of society such as race, religion and disability, leading to the hate of that which is different to their perceptions.

Nostradamus predicted that a Third World War would come from  the east and with the continued inequalities and intolerance in society it is not hard to imagine a time when those discriminated upon, turn against the haters.

Many civilisations such as the Romans, became preoccupied with looks and money to the detriment of those who didn’t meet society’s norms and those less able and look what happened to them.

Friday’s article The Times They Are A-Changin’ – Part 2 was an attempt to redress the balance of the stigma of some professionals and care partners, that question the diagnosis of Dementia at a younger/earlier stage.

These experiences of those professionals and care partners are undoubtedly negative, who mainly experience the negative side of Dementia through the emotions and emotional responses of the person they care for in the Palliative stage.

But there are three main stages to Dementia, early, middle and Palliative, like Cancer which has 4. You do not hear comments that someone with stage 1 to 3 Cancer, doesn’t have cancer because they don’t look like they have Cancer, they still work, drive, speak at events, campaign etc.

As with any chronic terminal disease, the challenges of each stage, differ and increase through the stages.

It has never been the intention of people living with Dementia to say that the perceptions and experiences of professionals and care partners of the Palliative stage are wrong.

However, because all you see in the media is the Palliative stage of Dementia, as I know from my own experience, that narrative has a disabling effect upon diagnosis and there is a need to redress the balance to show that a diagnosis need not necessarily be

The beginning of the end, but the end of the beginning with an earlier diagnosis.

That there may be a life to live within the reducing limits of a diagnosis, when diagnosed at an earlier stage.

That we do however recognise and even fear the challenges of the Palliative stage of Dementia.

---

Nominations for the National Diversity Awards 2019

---

Other Nominations

You can nominate here

You can nominate here

---

Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

New Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP

---

Consultations

Consultation – Learning disability and autism training for health and care staff

New Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

New Study Title: Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

---

 

Videos

Stephen Tamblin’s 44th Weekly Video

---

Poetry

Bitter Sweet Success……..Poem

---

Blog

“I first met James McKillop back in 2001, not long before the publication of his book, ‘Opening Shutters, Opening Minds’. We shared a love of photography and had a similar sense of humour. It was James who introduced me to the Scottish Dementia Working Group (or Working Party as it was called then).”

Alzheimer’s Society Scotland’s blog titled Journeying through Dementia Designing Post Diagnostic Support with People with Dementia

---

New Resources

Dementia resource for care professionals

---

---

 

It’s been a foggy few days.

Friday and Saturday passed unnoticed, even forgetting to post an article yesterday.

People living with the early stage of Dementia, may not look like they have Dementia but beneath the façade they put up are increasing challenges which we can still recognise even if we cannot recognise those challenges in a daily basis.

We can still recognise at times that we are not the person we once were and that the changes happening over time are not normal.

From childhood we develop life skills which become a normal part of daily life but when those skills begin to disappear and challenges increase, those changes are not normal.

Becoming reliant on technology and those around us is not a choice we make but a necessity thrust upon us by an insidious invisible disease.

This week was International Women’s Day, a day celebrating the true value of women.

For too long they have been seen as inferior yet they are the backbone to Society.

My Mother didn’t believe in the stereotypes as I was growing up, I had to learn to cook and sew, clean and washing etc.

As for many Men, wives become carers to their children, parents, husbands and partners,  to the detriment of their own health

---

Skydiving

Anna Harrison, Rachel Niblock and Wendy Mitchell should have been Skydiving in aid of Young Dementia UK yesterday, however the weather caused it to be postponed.

Rachel Niblock’s next attempt will be this Friday, I am not sure when Wendy and Anna’s next attempt will be but probably next weekend.

In the meantime, there is still time to sponsor them. details on how to sponsor them is here

---

Nominations for the National Diversity Awards 2019

You can nominate here

---

Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

---

Consultations

Consultation – Learning disability and autism training for health and care staff

Consultation – Have Your Say on Sheffield’s End of Life Care Services

---

Videos

---

Blog

“… How I wish I had someone who could actually sit and do these things for me, or with me.  I am understanding that it may be time to de-clutter massively ready for when I progress.  Time to get a cleaner to help me keep my home clean and tidy.

In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.“

Gill Taylor’s blog titled Dementia Friendly Communities

---

---

 

A busier week this week.

Talking to Masters in Dementia Studies students at Sheffield University, Making a Video for Sheffield CCG and numerous online meetings including one for the “Crystal Clear Advisory Group” where people living with Dementia advise organisations on the language, documentation, website and leaflet layouts.

I have added a second blog to this weeks musings, George Rook’s “Fake news: lies, damned lies, and statistics” talking about Service Commissioners (CCGs) making decisions, this time in Shropshire, completely ignoring our rights under the United Nations Conventions and International Law:

For us, Without us

Deciding what we want, ignoring our needs

It is time for people to stop making decisions for us, to involve us in service provision  and development, to learn and implement into decision making process such United Nations conventions as the Human Rights Convention and the Convention on the Rights of persons with disabilities and to realise that if they do not

they are in breach of International Law as recognised by the UK Government

Would they treat people living with Cancer, Heart Failure, Stroke, Diabetes etc the same as they treat people living with Dementia, of course not, the public outcry would be enormous, so why does society let these people and organisations get away with it.

In time the old guard of the dinosaur medical professionals who only see Dementia in the Palliative stage will be extinct.

A new generation of medical professionals are coming, that get there are 3 stages of Dementia, that the challenges and needs in each of those stages differ, that there is a person inside the fossil of Dementia and that while there is no way currently to divert the asteroid of Dementia wiping away the person over time, there may be some sort of life to lead.

Mother nature rebuilt life on Earth, modern professional are beginning to rebuild the lives of people living with Dementia and their families with new innovative sometimes simple or obvious ways of enablement, upholding their rights and involving them in developing new systems, services and treatments rather than the caveman sledgehammer to crack a nut.

I managed to learn how to put links to video, to click and play rather than having to go on a separate page, in my articles this week.

The simple solution would be to ask someone but I chose to “Google It” as my Grandson Lucas would say, partly in the hope that I may remember what to do better but also giving myself a sense of achievement, learning something new without assistance.

---

Videos

 

---

Blog

“In the cold light of day, I have some advice for myself. Stop panicking for a minute. Really listen to and understand what is behind mum’s agitation. Remembering advice from Penny Garner, of Contented Dementia, I plan to spend more time noting mum’s questions, trying out different responses and evaluating what works. 

I also need to get better at joining mum in her reality.”

Julia Powell’s blog titled Caring in the Face of Physical Distress and Overwhelming Anxieties

---

Blog 2

“These commissioners and providers still act as Gods who believe they know what we need and decide what we can have.

It is appalling that they can ignore national models of good practice. Ignore the people who have the disease. Ignore research evidence. 

We have a disease that cannot be cured, or even slowed. The only thing that you can do for us is help us to live well while we can, to not withdraw, to be able to engage in our communities, and to do what makes us smile.”

George Rook’s blog titled Fake news: lies, damned lies, and statistics

---

---

This week has been tiring and at times busy, but it has also been a time of reflection.

A lot has happened and a lot has changed over the last five years or so.

But in many ways, nothing has changed.

The Mental Capacity (Amendment) Bill, the Long Term NHS Plan, The Green Paper on Health and Social Care all fall short on what is necessary to alleviate the concerns of people living with Dementia, other Disabilities and the United Nations.

The lack of post diagnosis support services and assessments from the point of a diagnosis is still lacking especially if you are under 65.

Equality of services is another issue that needs addressing as is the involvement of the LBGT and BAME communities in bringing about change, to better the lives of people living with Dementia, other disabilities and their care partners.

Removing stigma and ignorance of professionals and society as a whole.

Changing the narrative of the media to be more enabling rather than disabling.

Whether any of these can be achieved in my lifetime is unknown, as many things are still as they were 40 years ago.

Hopefully in another 40 years, society will look back in shame at the way people with Dementia and other disabilities are treated.

But that will be too late for many of us.

---

Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

---

Consultations

Consultation by the UK Ministry of Justice on the Mental Capacity (Amendment) Bill

Consultation – Learning disability and autism training for health and care staff

---

Videos

Peter Berry’s 85th Weekly YouTube Video

Stephen Tamblin’s 40th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video

BBC Video How to talk about disability without being awkward.

---

Poetry

This week I had a go at some poetry – see what you think

…What life’s really like, Living in Dementialand.

---

Blogs

“So, there is a lot you can do to make it easier for your patients who live every day and every hour with their dementia to get the help, care and understanding they need and deserve in order to live as well as they can.

And remember: 25% of people with dementia only leave their homes once a month. There’s a good chance it will be you who they visit. Make it a good day for them.“

George Rook’s blog titled Be A Dementia Friendly General Practice

Also:

“There is a growing movement of people with dementia with a new (or a louder) voice that is now seeking, rightly, to take ownership of research under the ‘nothing about us without us’ rallying call. Indeed, as my friend Paul, a member of York Minds and Voices, said several years ago now, ‘If you’re doing research about dementia and you don’t include people with dementia, then you’re wasting your bloody time’.”

Damian Murphy’s blog for Innovation in Dementias CIC titled Comfortable

---

---

 

It has not been too busy this week with a research appointment on Monday and talking to Sheffield Health and Social Care staff on Thursday.

The daily challenges of life with Dementia continue.

But sadly, the challenges of the UK Government continue to affect people living with Dementia and other disabilities continue, to divert us from a path to enablement and the removal of the view that we are a burden to society.

The Mental Capacity (Amendment) Bill and Social Care are two issues of great concern at this time.

They have the potential for conflicts of interest and rights abuses

That which is morally wrong cannot be politically right

(Sarat Chandra Bose)

Which is why these issues should be challenged.

Spending time in silent reflection and Mindfulness this week, I came across a quote in some old notes by William Penn, which for me sums up Dementia Advocacy and awareness raising.

“I expect to pass through this world but once.

Any good therefore that I can do …

let me do it now.”

---

Consultation by the UK Ministry of Justice on the Mental Capacity (Amendment) Bill

The Mental Capacity (Amendment) Bill is currently going through Parliament and following increasing concerns about this legislation the Ministry of Justice has opened a consultation that runs until the 7th March 2019.

The bill is an attempt in part, to replace the Deprivation of Liberty Safeguard (DoLS) with the Liberty Protection Safeguard (LPS).

Increasingly, concerns are being expressed about how the LPS will work including:

Care Home managers being able to instigate an LPS

Hospital Administrators being able to instigate an LPS, which potentially if someone is in Hospital, fit for discharge but no Social Care available, the can be forced into a Care Home, to free up a bed against stier wishes.

The apparent lack of advocacy and representation.

The use of the term “Appropriate Person”

Replacing the term “Mental Disorder” with “Unsound Mind”

Increasingly, the bill is seen as a way of removing the rights of people with Dementia and other Disabilities which is why it is so important for DPOs, NGOs, other organisations, professionals and people affected by Dementia and other Disabilities, to take part in this consultation.

Link to UK Ministry of Justice Consultation

---

Petition from the 3 Nations Dementia Working Group

---

Videos

Peter Berry’s 84th Weekly YouTube Video

Stephen Tamblin’s 39th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video

BBC Video How to talk about disability without being awkward.

---

Blog

“Kindness costs nothing and can make someone’s day. Harsh words cost nothing and can throw someone’s world into disarray……I know which I like best…..how about you?”

Wendy Mitchell’s blog titled Our own Solitary Bubble……