Category: Sunday Musings

2019a, Dementia, Sunday Musings Jan 20, 2019Jan 20, 2019

Sunday Musings – 20 January 2018

The smokescreen of the playground politics of Brexit continues to mask the disability rights abuses prevalent in the UK.

We now have the possibility of a second referendum, for gods sake, get on and sort this mess out, one way or the other.

If the result of the first referendum can’t be honoured, who is to say the result of the second one will be. Do we keep having them until the media is happy with the result.

Get a grip May and Corbyn, there are too many other things going on that need sorting out. People are dying and their rights being abused whilst 650 MPs act like Infant School children acting out in the playground.

We have remainer May giving sound bites about respecting the result of the Referendum, playing political football with people’s lives

and leaver Corbyn peering over the wall of decision, generally on a Wednesday at PMQs, like a wartime Chad,

procrastinating, before retreating to obscurity,

whilst there only claim to fame will be destroying our once great Democracy and leaving us with a fractured society

On a more pleasant note, on Monday I was on BBC Radio Sheffield with Donna Chadwick from Young Dementia UK talking about the monthly New Young Onset Dementia Support Group in Sheffield facilitated by Young Dementia UK, the next one now being on the 13th February 2019.

You can hear our interview here

The Sheffield Dementia Strategy consultation finished on Friday but I understand that the CCG has been asked to extend the deadline as it was poorly advertised and there are still many wishing to take part. Hopefully the CCG will make an announcement in the next few days.

With over 7,000 living with Dementia in Sheffield, I am sure only a small minority have had the opportunity to take part. I wonder how many in Care Homes in Sheffield have contributed in line with Article 29 of the UN CRPD.

In The News

Thanks to Nigel Hullah for sight of this article

“Changes to mental capacity safeguards – intended to protect hundreds of thousands of vulnerable people – will hand care home managers and private hospitals far too much power, the government has been warned.”

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

Twitter Chat

The 3 Nations Dementia Working Group Twitter chat restarted after the Christmas break.

It starts from 8pm GMT this Wednesday evening.

Feel free to join in using the hashtag #ask3NDWG

Videos

Peter Berry’s 81st Weekly YouTube Video

Stephen Tamblin’s 36th Weekly Facebook Video

You can also catch Stephen’s 6th YouTube video

Janice Swinks Facebook Video

Betsy e Wurzel’s Caregivers Facebook Video

Blog

“We have a system which has committed all its funding in total ignorance of dementia, in a society which fears dementia above every other disease, and which seems unable to tear itself away from ‘what we’ve always done’.”

George Rook’s blog titled Visions that hide reality

2018, Dementia, Sunday Musings Jan 13, 2019Jan 13, 2019

Sunday Musings – 13 January 2019

On Monday we finally had the Long Term NHS Plan published with a mythical extra £20bn for the NHS.

By Thursday:

Government cuts real terms NHS spending , but boosts cash

Can’t wait to see the promises in the long awaited Green Paper on Social Care, which has no chance of being enacted in this Parliament.

Smoke and mirrors you might say to detract from the damming UN report from Sir Philip Alston.

On a more positive note, the 13 commitments to the Sheffield Dementia Strategy were released to the media this week.

On Thursday, at a public meeting of the Sheffield Clinical Commissioning Group, Governing Body, Tim Moorhead the head of the CCG, Kath Horner chair of Sheffield Dementia Action Alliance, Nicola Shearston from Sheffield City Council and myself all stated the importance of the new strategy and the need for an integrated pathway involving all stakeholders in Sheffield.

The 3 Nations Dementia Working Group Twitter chat restarted after the Christmas break this week with a chat about “Dementia as a Disability”.

It starts from 8pm GMT on a Wednesday evening.

Feel free to join in using the hashtag #ask3NDWG

Fellow blogger Gill rights about Wednesday’s subject today in her blog :

Dementia: a disability?

Videos

Peter Berry’s 80th Weekly YouTube Video

Stephen Tamblin’s 35th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video

Blog

“I can imagine it is very hard to be friends with someone who is losing their mind. Hard to be friends with someone who one minute makes sense, and the next may be babbling incoherently.”

Minna’s blog titled Solitary confinement in the New Year

2018, Dementia, Sunday Musings Jan 6, 2019Jan 6, 2019

Sunday Musings – 06 January 2019

It’s the first Sunday Musings of 2019 so Happy New Year Everyone.

Tomorrow sees the launch of the Long Term NHS Plan.

A small amount of information about what will be included was released yesterday and the media, as usual have gone into overdrive, interviewing so called experts before the 100 or so page document has even been released and they have sight of what the detail of the plan actually is.

The reporting full of doom and what hasn’t been announced, without having seen the plan.

The devil as always is in the detail, facts not fake news.

It will be interesting to see how much of the feedback that was given at the forums including the one in London that I attended, influenced the content of the plan.

The other news was that the Government is halting the roll out of Universal Credit. They will still move 10,000 people onto it but monitor the impact, so hopefully there will be some positive change.

The idea of merging 6 benefits into one, may make sense, but the way Universal Credit has been implemented certainly does not make sense.

Videos

Peter Berry’s 79th Weekly YouTube Video

Stephen Tamblin’s 34th Weekly Facebook Video

You can also catch Stephen’s 6th YouTube video

Blog

“The research aimed to show how older people from different household types acquired food, what food they bought and the people and places they acquired it from. The study was funded by the Food Standards Agency and the Economic and Social Research Council to explore the resilience of older people within the UK food system.”

Raymond Duffy’s blog titled The Importance of Food Shopping

2018, Dementia, Sunday Musings Dec 23, 2018Dec 23, 2018

Sunday Musings – 23 December 2018

Christmas is coming, the fat cats are getting fatter and everything has changed but nothing has changed.

It’s the season of good will to all men and women yet there will be great disparity between the haves and the have nots.

People in their cosy homes with family all around and those that are homeless or have no family to spend with on Christmas day.

The carers who empower people living with Dementia and other chronic diseases to live their lives at home.

The carers who have no support, who do their best not just at Christmas but all year round without a break or the support of family and friends at times to the detriment of their own health.

Where is the community spirit, respect for the older and more disadvantaged.

It’s all lost in a divisive society about me, me, me.

Pick up the phone, knock on a door, do something for someone else.

Spare a thought for those less well off this Christmas.

Videos

Peter Berry’s 77th Weekly Video

Stephen Tamblin’s 32nd Weekly Facebook Video is here

You can also catch Stephen’s 6th video on YouTube

Blog

“If you know someone caring for someone else this Christmas, offer to give them a break. Look after their loved one for a few hours so they too can go and enjoy the festivities. They may just need time to shop, time to ~~wander~~ walk round the shops, time to wrap parcels in peace or do a bit of cooking, or they may just need time to simply be by themselves.”

Wendy Mitchell’s blog titled Thinking of those who Care at Christmas……

2018, Dementia, Sunday Musings Dec 16, 2018Dec 14, 2018

Sunday Musings – 16 December 2018

The last couple of weeks seem a blur.

On Thursday evening after travelling to London, Brussels and Manchester over 10 days, I could no longer concentrate on anything, coordination was lacking and I found myself off to bed around 7pm mentally and physically exhausted.

As many of us have said before, there is a price to pay for all we do and for me the recovery is taking longer.

However, what we do isn’t just for us, it is for those that do not have a voice.

To take Dementia from the dark ages where it was and still is seen as a silent disease.

To challenge old school rhetoric and to show that Dementia has a beginning, a middle and an end.

That depending on when you are diagnosed, that you may be able to live within the limits of your own diagnosis.

That it may not be the end of the beginning, but the beginning of the end.

Videos

Peter Berry’s 76th Weekly Video

Stephen Tamblin’s 31st Weekly Facebook Video is here

You can also catch Stephen’s 6th video on YouTube

Blog

“By putting people with dementia at the center of person-centeredness we are saying that the lens through which we see them, talk about them, support them, etc. reflects how THEY see the world, what is important to THEM, what THEY need. This is where we start. This puts us, as people supporting people with dementia, at the center, WITH them.”

Sonya Barsness’s blog titled I Love You for What You ALMOST Are, Person-Centeredness.

2018, Dementia, Sunday Musings Dec 9, 2018Dec 9, 2018

Sunday Musings – 09 December 2018

This Week

Tuesday saw the first meeting of Dementia Enquirers in London. It is organised by Innovations in Dementia and DEEP UK with funding from the Big Lottery Fund.

Dementia Enquirers is a group of people living with Dementia along with Philly Hare and Rachael Litherland looking at how research can be undertaken by the 100+ DEEP groups.

Wednesday to Friday saw the European Commission-Hague Convention Joint Conference on the Cross-border Protection of Vulnerable Adults in Brussels which I attended along with Kate Swaffer and Julie Hayden.

In a cruel twist of fate, Kate had a poor experience of Assisted Travel at Brussels Airport and Julie had a poor experience at Brussels and Manchester, the only way it could be described is as Assisted Rights Abuse.

More to follow in the coming week.

Apologies reader, as it’s only a short article today as I am recovering from my travels this week.

What’s On

Tuesday 11th December, Sheffield Age UK Dementia Group Sessions

Videos

Peter Berry’s 75th Weekly Video

There are no videos from Stephen Tamblin this week as he is in Hospital, hopefully he will be better soon.

Blog

Shelagh Robinson’s blog Cheese on Toast – or not coping

2018, Dementia, Sunday Musings Dec 2, 2018Dec 2, 2018

Sunday Musings – 02 December 2018

The questioning of people living with a diagnosis of Dementia continues.

In the Australian Journal of Dementia Care, Kate Swaffer, CEO of Dementia Alliance International has written a response in an article here

When will the *Dementia Doubter’s stop showing their ignorance and massaging their ego’s.

December will supposedly bring the Green Paper on Social Care.

At a recent Forum in London, Matt Hancock MP confirmed that he wished to have a minimum level of post diagnosis support that the CCG’s and NHS Trusts cannot cherry pick, Caroline Dinenage MP also confirmed this when she spoke at the Dementia Friendly Awards in London last week.

Jimmy McGovern writes in the Guardian yesterday “We can’t dodge the issue of care for the elderly any longer”

The devil as always, will be in the detail.

The Daily Express article Care: TV drama to reveal anguish of Dementia perpetuates the negative narrative of Dementia using words such as Anguish and Stricken.

With more people being diagnosed at an earlier stage of Dementia, the Media and Dementia Doubters need to realise that you are the same person the day before your diagnosis and the day after your diagnosis and that you can live within the reducing limitations of that diagnosis albeit with an increasing need for support in line with the United Nations Conventions.

The so called end stage of Dementia should be seen as the Palliative stage which would enable us to be receiving inclusive respectful care rather than the abusive involuntary care we are currently subjected to, which ignores our rights.

What’s On

Tuesday 4th December, Sheffield Age UK Dementia Group Sessions

Videos

Peter Berry’s 74th Weekly Video

Stephen Tamblin’s 30th Weekly Facebook Video will hopefully be next week as he has been unwell this week.

You can also catch Stephen’s 5th video on YouTube

Patrick Italo J Ettenes talks about meeting Manchester’s Mayor and funding for some oif the work he is involved in

It’s called Fast Track… Manchester is having their own HIV campaign to bring awareness.

Poetry

Susan Macaulay’s has published a beautiful Poem “An Alzheimer’s Christmas Story”

Blog

Elaine M Eshbaugh’s blog about Sacred Spaces, Being Vulnerable, And Strangers In Your Bedroom In Dementialand

2018, Dementia, Sunday Musings Nov 25, 2018Nov 30, 2018

Sunday Musings – 25th November 2018

The monster of professionals questioning our diagnosis reared it’s ugly head again this week, Wendy Mitchell comments in her blog.

This week saw the first meeting of the Age UK, Sheffield Age Friendly City Project, Steering Group.

Originally, Sheffield Council attempted to make the city Dementia Friendly but appears to have chosen to removed the stigmatising, exclusive label of Dementia Friendly City to a more inclusive one of Age Friendly City.

The Statement on Visit to the United Kingdom, by Professor Philip Alston, United Nations Special Rapporteur on extreme poverty and human rights – 16 November 2018 was published online, a damming commentary on people living in poverty and with disabilities.

Sadly, the Government doesn’t appear to agree with the statement but the facts back up Sir Philip’s comments and hopefully the UN will now put pressure on the UK to fully incorporate International Law via the UN Conventions.

Maybe they will focus less on tax cuts for the rich and crack down on tax avoidance. It was reported this week that footballer Ngolo Kante pays more tax than Amazon or Starbucks, really reader.

The rich are getting richer to the detriment of people living in poverty and with disabilities.

It’s sounds simple I know reader, even Communist Russia had a small minority of fat cats whilst the rest of the population lived in relative poverty, so much for the Communism ethos of all being equal.

Recently, I was at the Royal Hallamshire Hospital about a Hearing Test and Hyperacusis

It is important to remember reader that issues with noise as well as hearing loss can have an effect on the quality of life for people living with Dementia.

Finally congratulations to Rhys Dalton and Kayla Whitten, now Mr & Mrs Dalton, who were married yesterday. Rhys’ mother Maria Turner is a friend and board member of Dementia Alliance International.

Maria arranged for the wedding to be broadcast so that members could attend from UK, USA, Canada, Australia, New Zealand and Canada online.

What’s On

If you are from the LBGT community, have a diagnosis of Dementia and live in or around Manchester, The LBGT Dementia Network have a support Group tomorrow evening, 26th November 19:30 to 21:00. Details here

Tuesday 27th November Sheffield Age UK Dementia Group Sessions

Wednesday 28th November, is a Dementia Alliance International Webinar about “Rehabilitation for Dementia: Evidence & Opportunities” Presented by Associate professor Lee-Fay Low from the University of Sydney. More information and tickets here.

If you live in or around Bury there is the Pride in Caring – Celebrating Older LGBT+ People event at the Town Hall on Thursday 29th November 10:00 to 14:00 details here

Videos

Peter Berry’s 73rd Weekly Video

Stephen Tamblin’s 29th Weekly Video

You can also catch Stephen on YouTube

Blog

Wendy Mitchell’s blog about Professional Questioning

2018, Sunday Musings Nov 18, 2018Nov 18, 2018

Sunday Musings

Things have improved for me Dementia wise as the week has gone on and I am slowly getting down to things that need to be done.

On Tuesday, I was at the Hospital for a hearing check. My hearing is fine, no significant hearing loss, it is just my Hyperacusis that is an issue.

I am going to have some hearing protectors that filter out lower sounds like these

Wednesday, I was in Nottingham for a Trent Dementia event supported by DEEP UK

This week, Sir Philip Alston’s United Nations visit to investigate poverty and disability abuses in the UK has come to an end.

On Thursday, he spoke to Disability News Service more details here

On Friday, Sir Philip gave a briefing Video – Sir Philip Alston Presents the Preliminary Findings of His Investigation Into the UK

We will not know the full extent of the report until June.

Sadly, seemingly there are still those that think things have changed, the government think they are doing a good job but would they walk in our shoes.

Also this week a New Channel 4 Cafe in Bristol run by people living with Dementia started.