Today is the last day of Dementia Action Week 2019 in England, Wales and Northern Ireland and there is action you could take.

In the UK there are approximately 7,000,000 Carers, unpaid, unsupported and undervalued, thats around 1 in 10 of the population.

Too often Carers struggle on alone to the detriment of their own health.

They need time away from their Caring responsibilities, there is no shame in that.

No shame in asking for help.

Time away benefits all, recharges your batteries and can alleviate stress.

If you are a carer, make time for yourself.

If you know someone who is a carer offer to help, even an hour can make all the difference.

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MP’s generally seem to be unable or incapable of understanding the challenges people face in their daily lives.

They focus on their political careers and their obituaries, leaving no room for the reason they are an MP in the first place.

Write to your MP, ask them

• What they are doing to better support Carers
• What actions they are taking to introduce state funded universal Social Care.
• What they are doing to improve the rights of persons with Disabilities.
• What they are doing to reduce poverty
• How they are going to reduce the inequality between the lower and higher paid.
• What they are doing to rebuild the Welfare State.
• What they are doing to make the UK a Civil Society

Write to your MP regularly, keep the pressure on, these things may not affect you now.

But in the Future…

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Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as recently, only 18% of respondents were men.

ADI wants to hear what YOU think about Dementia!

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Nominations for the National Diversity Awards 2019

You can nominate here

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Other Nominations

You can nominate here

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Petitions

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

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Newsletters

Alzheimer Europe – April 2019

LEAD Coalition News – April 24 2019

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“How are we going to change this?

How can we make government adopt and enforce a standard model for supporting all people diagnosed with dementia?

How can we force CCGs to change their spending patterns to support people living with dementia in similar ways to other patients?

At the moment it seems that CCGs have the legal power to spend as they wish, based on evidence of need. So clearly in many places in the UK people living with dementia have no care or living needs, since their CCGs choose not to spend money on them.

It seems to me that we need a test case to go to court under the Equalities Act.

We need to use the law because the evidence is being ignored. A test case challenging a CCG for failing to provide equity of access to care and support for people living with dementia, by comparison with other CCGs, and other diseases, would set a precedent.“

George Rook’s blog titled Rights, equity and dementia

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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

Tomorrow is the start of Dementia Action Week 2019.

It used to be called Awareness Week but awareness is fine, take Dementia Friends which is an awareness session NOT training but what is needed now is action to bring the treatment of Dementia in line with other chronic terminal diseases.

It is no longer acceptable for a GP not to refer a patient with Dementia for treatment because it is “not appropriate” or “they don’t understand“.

I have met many professionals who are going out of their way to develop the skills necessary to communicate with people living with Dementia in their clinics because they recognise the benefit to the person, their family and the healthcare system.

The Alzheimers Society Conference is on Tuesday and Wednesday this week at the Oval in London, drop by the 3 Nations Dementia Working Group stand if you are there.

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I started another research study on Friday but at the time of writing this article, I cannot remember anything about it, apart from that the researcher was supportive, maybe some of it will return in the future.

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Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.

ADI wants to hear what YOU think about Dementia!

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Nominations for the National Diversity Awards 2019

You can nominate here

---

Other Nominations

You can nominate here

---

Petitions

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

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Newsletters

Alzheimer Europe – April 2019

LEAD Coalition News – April 24 2019

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“My last post was a ranty one – hands up, it’s a fair cop.  I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief).“

Mum Has Dementia’s blog titled Apologies – many Care Homes are clearly a FORCE FOR GOOD

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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

 

It’s been a busy couple of weeks travelling and attending meetings etc, culminating in being on a panel for an Alzheimer’s Disease International Webinar on Friday.

All smiles, you might say “you don’t look like you have Dementia” reader, but Dementia is a hidden disability.

Behind the facade of smiles, a running battle is taking place, to participate in the webinar and to “appear normal”, whatever that is, for 60 minutes.

Game of Thrones it is not, literally a fight to the death it certainly is.

A battle between a person and an insidious chronic terminal disease, compounded by comorbidities, certainly.

Made even harder by the judgement of others and the continuing abuse of our rights.

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A couple of weeks ago, I met Rachael Maskell MP, chair of the APPG for Ageing and Older people at Portcullis House in Westminster to talk about the Alzheimer’s Society proposal for a Dementia Fund.

I was one of many members of the 3 Nations Dementia Working Group, who have had the opportunity to speak to MPs about the proposal.

I would like to extend my thanks to Rachael for writing and the 68 MPs who have signed an open letter to health secretary Matt Hancock asking for people (living) with Dementia to be given personal budgets, which they can spend on care home costs or home adaptations.

MPs call for Dementia Fund to help people with dementia pay for care

The letter says ‘While people with cancer (and other chronic terminal diseases) have their treatment costs covered by the NHS, those with Dementia struggle to finance the increasing costs of care as council-run social care is cut back.’

Over 60 MPs support Alzheimer’s Society’s call for new £2.4bn Dementia Fund

Currently, they way people living with Dementia are treated can be in breach of International Law via

The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

including Article 25:

“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

c) Provide these health services as close as possible to people’s own communities, including in rural areas;

d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”

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Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.

ADI wants to hear what YOU think about Dementia!

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Nominations for the National Diversity Awards 2019

You can nominate here

---

Other Nominations

You can nominate here

---

Petitions

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

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Newsletters

Alzheimer Europe – April 2019

LEAD Coalition News – April 24 2019

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“Since I got back from holiday mum has been more grumpy than usual. Sometimes she feels she has been wronged, withdraws, gives monosyllabic responses and behaves a bit like a sulky teenager. Not just with me, but with special carers that she normally gets on with. Monday is a good example of life this last week.“

Julia Powell’s blog titled A Day in the Life of Mum, Dementia and Me

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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

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I was in London this week to talk to Rachael Maskell MP at Portcullis House, adjacent to Parliament and I was there with Sam and Laura from the Alzheimer’s Society.

It was a fruitful meeting and it was good to meet someone who understands rights and Dementia.

My friend Patrick Ettenes was there the day before having another fruitful discussion with an MP.

We were there as part of the 3 Nations Dementia Working Group members engaging with MPs to talk about our experiences and improve MPs understanding of the challenges we face.

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I stayed in a Hotel the night before and I went to a local shop to get a sandwich.

On the way back I sat over the road from the Hotel and for the first time, I noticed how noisy London is.

It was strange as I had worked in London for almost 10 years when I left School and been to London, many times since, but this was the first time I noticed how noisy it is.

In the world of Dementialand, we come to find that things can affect us in different ways than before, changing our perceptions and causing new emotions and emotional responses.

This in turn can change the way we interact with those around us, making us appear resistive or uncooperative when in fact we are just trying to deal with our changing perceptions of the world around us.

As our brains slowly die and contract, we go through life with Dementia, pathways die and signals never reach their destination with increasing regularity.

We may not notice the changes as time goes on and they may become part of a new reality.

A reality that insidiously become normal to us but foreign to those around us.

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Alzheimer’s Disease International have a new Survey

ADI wants to hear what YOU think about Dementia!

Do please complete, especially the men out there as so far only 20% of respondents have been men.

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Nominations for the National Diversity Awards 2019

You can nominate here

---

Other Nominations

You can nominate here

---

Petitions

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

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Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.“

Beth Britton’s blog titled Experiences of loss

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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

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Its Easter Sunday, traditionally a celebration of the resurrection of Christ but lately, a money spinning event generating untold amounts of paper and plastic.

Hopefully reader you will dispose and recycle all this packaging appropriately as Mother Nature is slowly being choked by micro plastic and as the forests of our planet being cut down, the lungs of our planet, taking in the carbon dioxide and releasing oxygen, slowly disappear.

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It’s  been warm over the weekend, so the weather app on my phone says however, I have felt cold.

It was the same last summer yet still people make inappropriate comments because the stigma of Dementia still dictates that it is all about memory loss where we are hunched over drooling, with wrinkly hands.

Society and the media need to understand that there is so much more to Dementia.

Behind the façade that we may choose to put up is an invisible disability eating away at our abilities daily.

We are like the egg timers of our Grandparents, our abilities are the sand and our abilities fall through the bottom one grain of sand at a time until all that is left is the shell of the egg timer.

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I saw a comment on social media “Labels are for Jars”.

In this digital age, we are pidgin holed by labels, assigned fields in a database, defined by those labels and ultimately, we can be abused by society and individuals, by those labels.

Labels lead to assumptions about our abilities, our need and our cognition. 

Assumptions are made about how we look and behave.

From experience, using terms such as “behaviour” and “aggression” produce a negative response to a person living with Dementia.

Replacing them with “emotions” and “emotional responses” produce a more positive questioning response.

Positive, because a person living with Dementia will not be cared for negatively.

Questioning, because attempts will be made to ascertain the what, where, why, how of an “emotional response”

To resolve the responses to the benefit of all without automatically resorting to chemical/physical restraint, involuntary care, sectioning/safeguarding.

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I hope you have a good week reader and “Sunday Musings” will be back next Sunday.

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Nominations for the National Diversity Awards 2019

You can nominate here

---

Other Nominations

You can nominate here

---

Petitions

New See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

---

Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.“

Elaine M. Eshbaugh’s blog titled What I Think Care Partners in Dementialand Need to Know

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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

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With the changing of the clocks, the days are getting longer and sunnier, if not warmer.

During this week temperatures were as low as -2c and the occasional frosty morning and chilly wind.

A chilly breeze in the form of the Liberty Protection Safeguard (LPS), via the Mental Capacity (Amendment) Bill, which is back to the House of Lords for a final time, may soon blow a chilly wind across the world of Dementia and other disabilities if it is misused.

Having a diagnosis of Dementia means that we are likely to lose “Mental Capacity” at some point.

What many Councils, Organisations, Hospitals, Care Homes and Professionals do not realise is that although we can lose “Mental Capacity” we can never lose legal capacity and that our rights under International Law and The United Nations Convention on the Rights of Persons with Disabilities (CRPD) still apply and cannot be ignored.

I wonder how many “Best Interest Meetings” document and make decisions that comply with the CRPD.

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This week I began Fundraising for Dementia UK to hopefully finally bring Admiral Nurses to Sheffield.

Please Donate here Thank You

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I hope you have a good week reader and “Sunday Musings” will be back next Sunday.

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Nominations for the National Diversity Awards 2019

You can nominate here

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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

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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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers

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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

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Videos

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Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

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Blog

“Who knows if that was the last walk into town…..at least I had a plan B…….uncharacteristically exhausted after such a short walk, but I did it, and if it isn’t ‘the last’….well that will be a bonus…..“

Wendy Mitchell’s blog titled Was this my last long walk……..?

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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

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Better late than never, I should have posted this yesterday but try as hard as I could the connection from my brain to fingers wasn’t working albeit, I just couldn’t find the words in the first place anyway.

I try to show that there is a life to lead following a diagnosis of Dementia but the insidious way that this disease slowly eats away from my abilities bringing with it new challenges makes even simple things like writing this blog a challenge.

On Saturday I am pictured below appearing via Zoom at the Newcastle University hackathon, being interviewed by Laura Booi

Other than that, it has been a quiet week, with rest being the priority to fight the tiredness and fatigue and dealing with headaches and a foggy head.

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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

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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

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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

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Videos

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Newsletters

Alzheimer Europe

LEAD Coalition

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Blog

“The Alzheimer’s Society has their very welcome campaign: Fix Dementia Care. But where are they? Why do they not resource the Charter process?

Who in a position of influence and power is actually taking responsibility to fix dementia care in hospitals?

The evidence is out there. Dementia care in hospitals is lousy. It takes lives, not saves them.

NHSE…you design the system…where are you?

Commissioners…you buy the services…where are you?

Yet again, it is left to little old you and me, volunteers in a broken system, people living with dementia, carers, to cry out in desperation.

Help us fix dementia care! “

George Rook’s blog titled For crying out loud, fix dementia care in hospitals

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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.

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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.

 

 

 

 

 

 

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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.

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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.

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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.

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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.

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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

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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

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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

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Videos

---

Newsletters

Alzheimer Europe

LEAD Coalition

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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

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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

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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.

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Nominations for the National Diversity Awards 2019

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Other Nominations

You can nominate here

You can nominate here

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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

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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

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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

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Videos

 

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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

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New Resources

Dementia resource for care professionals

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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.

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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

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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

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Videos

Stephen Tamblin’s 44th Weekly Video

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Poetry

Bitter Sweet Success……..Poem

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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

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New Resources

Dementia resource for care professionals

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