Category: 2019

Sunday Musings – 17 February 2019

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.


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


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

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


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.


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

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


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


“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


Sunday Musings – 10 February 2019

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

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


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.


“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… about you?”

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