Category: Dementia

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


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


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.

To: Secretary of State for Health and Social Care

Social Care and Dementia

Campaign created by
Three Nations Dementia Working Group

Following the UN Rapporteur’s visit to the UK, where he recognised that 49.9% of funding has been cut to local authorities, according to the Institute of Fiscal Studies, we demand a debate at the highest level of government and a solution to the gaps in social care provision which disproportionately impact upon all people affected by dementia.

Why is this important?

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

According to the Office of National Statistics, people with dementia are dying prematurely as a result of austerity.

Carers are not supported and are overwhelmed by the burden of unpaid care.

‘Local authorities… which perform vital roles in providing a real social safety net have been gutted by a series of government policies… The Government has remained determinedly in a state of denial’ (From the report by the United Nations Special Rapporteur on extreme poverty and human rights in the UK)

Please Sign the Petition


Re-Blog : “She’s still in there somewhere!” Is she? Really?

This article comes from a blog called “Mum has Dementia”

It shows the other side of the lived experience of Dementia.

“As I have said in many forms and guises previously, it is as if mum died a few years ago and as a replacement bus service we have an affable stranger who visits intermittently, a stranger who contributes little but is not a negative presence either.  I feel a sort of ambivalent inertia about the whole scenario.  I think I’ve done my grieving – now I’m just cracking on with the practicalities of another body to feed and toilet in a similar way to a small child or a pet.  Yes, it could be better.  But, it could be worse.”

“She’s still in there somewhere!” Is she? Really?


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


Diary thoughts with dementia

The Importance of Food Shopping


The dreaded foggy day…….


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 ……


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:

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.


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.


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.


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 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.

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