Are your marbles sparkling?

What am I thinking?

Just now, my thoughts are jumping around.

Like a bag of marbles dropped on a stone floor, they bounce around, knock into each other, scatter, and then lie still in little groups or pools.

Until someone disturbs them and sets up another knock and scatter, and they settle again, in a different pattern.

I remember playing marbles at school, ooh probably aged ten. Rolling them across the rough playground asphalt, trying to knock the others out. Winning. Losing. Beautiful roughly round glass baubles, with curious star shaped colour within.


Did we disturb the marbles?

Well I kicked mine around a bit.

Stepped away from chairing two groups.

Started a local project to establish a dozen DEEP peer groups around Shropshire.

Started a research project about how much Admiral Nurses and DEEP groups know about each other.

Re-launched and co-chairing our Shropshire and Telford Dementia Steering Group.

Continued to co-chair Dementia UK’s LEAP group of people with dementia and family carers.

Hassled the local acute NHS Trust to start implementing the Dementia Friendly Hospital Charter.

Joined their new Equality and Diversity User Group.

Hassled the local community health NHS Trust to restart a dementia steering group.

Blogged, tweeted, spoke…

And every one of these activities brought me together with wonderful people who are a delight to work with.

Their marbles sparkle!

My collisions with them set off cosmic sparks of pleasure and inspiration.

Together we are more.

And together we will achieve more.

And that is why I do these things.

I am no more special than anyone else.

My comrades in Riversiders DEEP group are all special. And they have grown their voices, and their passion to see change. And they too are hell raisers.


The election campaign is now done.

Christmas is near, and then…


More flicking and kicking around marbles.

Nothing from the new government about restoring cuts to social care. Just a vague commitment to work with other parties to find a solution.

Another one! We already have Dilnott. Do it! Don’t dilly dally again.

Nothing about dementia care. Or preventing postcodery.

The extra funding for the NHS is welcome and overdue, but a lot will disappear into historic budget black holes and repairs.

It’ll take years to recruit and train more nurses and doctors…and let’s not forget the extra allied health professionals we need too…Physios, OTs, Speech and Language, Pharmacists, Radiographers…

And social prescribing ‘agents’. In all GP surgeries.

We will all keep firing off marbles and sparking fires.

For me it will be more local than national. And social media.

Raising hell. Lighting fires. Fanning flames.

Making people talk about people living with dementia and carers.

Making those who hold funds and make decisions account for what they choose…because choices they are. And making choices for us is their (well paid) job.

Holding their feet to the fires.

Invest to save. Prevent high cost treatments and admissions. Keep people where they want to live, their chosen home.

Give better quality of life. Wellbeing.

So let’s rest for a couple of weeks. Be in the moment. Get outside to the park, or the hills, the woods or the fields. Remember the beauty and tranquility of the natural environment. Treasure it. Lock it in your hearts and minds for the coming months.

Do what makes you smile, inside and out.

And good luck to all of us in 2020.

Happy new year.


So here it is. Four days away. Five years of…what?

I have been asking the three main parties in England, every day since the campaigning began, what they would do for those of is affected by dementia.

38 tweets so far, some in several parts. Mostly retweeted each day too, by me. To get maximum exposure.

And to try to get a response from the parties.

Boris Johnson, Jeremy Corbin, Jo Swinson, Matt Hancock, Jon Ashworth, Luciana Berger…

I have tweeted directly to all of them.

To the Conservatives, Labour and the Lib Dems.

What will you do about post diagnostic support?

What will you do to introduce a consistent model of care…everywhere.


What will you do about support and respite and benefits for unpaid family and other carers?

What will you do about the £12bn cut from social care funding in nine years?

Why should we vote for you?

We are legion…we are 1.35 million.

We could swing seats.

We could choose the next government.


And the responses I have received have been staggering

…ly non existent.

I have had an average of 15 retweets a day.

140,000 impressions over 28 days.

I have reached a lot of people. And each retweet has gone to those party twitter accounts.

But, no, they have not replied.

And, which is much worse, and much more depressing, the parties have said almost nothing about dementia.


Conservatives say they will double government funding for research. [Pharma may carry out the research; pharma will reap any income from treatments.]

And put £1.5bn into social care (after their £12bn cuts), though with no mention if dementia care. And work on a plan for social care in the future.


And sometime in the next five years no one having to pay for care will have to sell their house.

[Watch those weasel words…should they have added ‘during their lifetime’?]


Labour will make social care after age 65 free, with a lifetime cap of £100,000.

I don’t understand this. Why charge under 65s? As if they have a choice. £100k will bust them.

Labour will repeal Lansley’s Health and Care Act which created independent local healthcare systems/CCGs. They will deliberately create single models or pathways across the country, which would be good for dementia care, as long as the model is appropriate/right/co-designed.


Libdem policy seems to be, like the others, to simply (‘simply’?) put somewhere between £30-£40bn into the NHS.


So which proposals relating to those affected by dementia should we vote for?

Up to you!


But let me just add…

I read a cartoon by an Australian recently (in the Guardian). Aussies would apparently kill for some of the stuff Labour is planning. And the cartoonist could not understand why anyone would choose more austerity and poverty and lying buffoonery over fairness and justice and equality.

And I agree.

Hold your nose if you have to…but vote for what is right.