Getting back to…normal?

So, back from France, no more a nomad, no more a wanderer.

Back to routines, familiar places and people.

Back to…well, dementia.

For six weeks I forgot about it.

I saw new views,

Said Bonjour to hundreds of unknown friendly faces

Slept beside cows or beaches or huge, beautiful vistas,

Had no anchor, no dead weight.

And it felt good.


And then, quite suddenly, I had to re-learn everything at home.

Where was everything in the kitchen?

How did the cooker work?

How did the other car work?

I couldn’t find my knowledge either, got stuck in conversations about “work”.

Had no idea about things I have been closely involved in for months or years.

And guess what, I got very very fed up.

I mean, really depressed. Crying at times.

What was life looking like then? Miserable, decaying, crumbling away…

Nothing to look forward to but dementia.

I met the dementia community sister. And the practice nurse for my diabetes annual check. Talked to them about it all.

What’s the point in trying to lose weight, drink less, walk more, I said.

They understood and empathised. Perhaps for the first time I felt really listened to by a clinician.

They both proposed upping the antidepressants.

Maybe it’s the pills, or maybe it was talking about it, or just time passing, but now I’m back in a fairly serene state.

My head is in a better place. I’ve got most of the stuff back about work. And I’m eating and drinking more healthily and feeling better for it.

Success breeds success. Feel good and you live better.


Now, let’s look at the lessons from all this.

One, if you don’t use it you lose it, and you may not get it back. I struggled for a month.

Two, you need to have the right people to talk to when you need it. If you’re really down you may not do be able to make that happen so it needs to be easy and quickly available. I was lucky as my annual checks came along together at the right time.

Three, depression needs treatment. Either medication or activity or social contact or a mixture thereof. In my case all three. And it’s got me going again.

Four, why wouldn’t someone with dementia get depressed? It’s shit, as I have said before.

Five, “we” need help and support to live well with dementia. (As do our carers, and family, writ large)

And it ain’t often there.

Six, we need peer and other social contact. That needs a little bit of organising, but it makes a huge improvement in outlook and self esteem.

So, where is this support?

There is an almost complete lack of anything between diagnosis and crisis where I live.

It’s time to change that.




Path thru Loss and Grief … to Choices and Dementia Advocacy

This is another wonderfully piercingly moving account from Tru, about how she (and others) is hit by changing or new symptoms, and how they start and then become regular. Hard to deal with.
I have experienced the same, though less. The other day I fund I could not access my knowledge about a particular subject and could not therefore talk about it and join in a discussion. It just had disappeared and I foundered. I was upset all day. Was it the start of another phase?

Read it.

Truthful Loving Kindness

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Tru here. 

Looking at my wardrobe doors this morning reminds me.

Earlier this month I was standing in the bedroom wondering what clothes I have, and where they are located.  Since wardrobe doors were closed and clothes were not visible at that moment, I was stuck.  “Don’t worry about it; you are just over-tired.”  Then it happened again yesterday  — and I was not over-tired.

I remember the first time I was stuck on filling my cup of coffee.  I was sick that day, and pictured mug full … but could not remember the first step for the process.  I was stuck.  That was the first time, and I rationalized that I was sick … and tired.  But it happened again about a month later.  And about a month after that it started happening every few weeks.  Now it is every couple weeks and it is no longer so shocking.  It is…

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National Dementia Strategies and Guidelines

This is excellent, if depressing. For us with dementia it seems like nothing is happening post diagnosis, until we hit crisis. What has improved in the last ten years? A question to be debated at the November international dementia conference in Telford. I’ll be speaking too!

brain treeAustralia, and many other countries have until recently had no national guidelines for the post diagnostic support of people with dementia, which I see as more than a failing, but as unethical. However it is encouraging to be able to report that the national clinical guidelines recently drafted went out to the public for comment before they are to be finalised, hopefully by October later this year. They are, disappointingly, I believe, still lacking in the prescription of authentic and comprehensive brain injury style rehabilitation and other proactive interventions and disability supports for people with dementia.

Many countries do have national dementia strategies, including Australia. Scotland of course has a National Dementia Strategy, and is often ahead of the rest of us. And talking of things Scottish, I refer you to an interesting article written by a Psychiatrist in Scotland, Dr Peter Gordon, Early detection of dementia: RCPsych result, for further reading. The UK of course, also has a

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Robert Jones and Agnes Hunt

Today I am going to write a piece about my work as a patient activist, and in particular about my nearest hospital.

I’ve been a member of several patient involvement panels in Shropshire for a few years. I’ve enjoyed this work, getting to know more detail about how the Trusts work, what they’re good at and what they need to improve. I’ve joined other working groups about dementia, safe care, clinical audit, patient engagement, quality accounts, patient stories, sit and see, and other things.

I reckon I know these Trusts pretty well.

In the last year I’ve become increasingly frustrated by the slow pace of change accompanying the work that I and many other patient representatives and activists do. I don’t expect everything to be suddenly changed because I and others say so. But in six years I would like to have seen more change to improve certain areas of health care here than has happened.

And I would dearly love to see real commitment through action to implement effective co-production with patients. Working with us throughout all stages of design, implementation, evaluation and redesign of care. Meaningful involvement of patients in their healthcare is lamentable still, with just a few patches of growing good practice.

So, the focus of this piece is the Robert Jones and Agnes Hunt Orthopaedic Foundation Trust (RJAH). This hospital is deeply revered in Shropshire, Powys and surrounds by those who use or visit it. Indeed, it has been the centre of excellence for spinal and other orthopaedic treatment innovation for decades.

But this is a Trust whose executive directors have lost sight of the purpose they are paid a lot of money to look pursue, the provision of the best possible treatment and care for the patients who are referred to them.

What I say here is entirely backed by fact. It is not libellous or slanderous, as it is fact and it is in the public interest for the public to know this. The facts are contained in a report by Deloittes, following an investigation this Spring, which was tabled publicly at the Trust Board meeting at the end of July.

My reason for writing about this is to bring these facts into the open so that the executive directors responsible for the situation have action taken against them and so that they cannot continue to ignore the Nolan rules for public life and the rules underlying the CQC Fit and Proper Persons guidance.

In 2012 I discovered, with help from NHS Gooroo, that RJAH had very odd referral to treatment (RTT) published data. I put this to the then Director of Operations who admitted that mistakes had been made in the Trust. The published waiting times excluded hundreds of long waiting patients through “stopping their clocks” on the waiting list at 17.9 weeks. This meant that the Trust, which had applied for Foundation Trust status, was shown to be meeting waiting targets.

That Director soon retired, and the Trust was subjected to a recovery plan/regime to recover the waiting times to within target. Remember, these were patients waiting for treatment for painful, debilitating orthopaedic conditions which can severely affect quality of life.

In 2014 I became aware that the Trust might again be adjusting waiting times in order to allow it to publish data showing it was meeting RTT targets. I met the Director of Operations, the new one, and after lengthy explanations was assured that the trust was complying fully with all RTT rules. I also received three emails from the Trust, including from a Director, stating categorically that the Trust was complying fully with RTT rules.
I assumed these assurances were true.

In early 2015 I noticed that published RTT data was suspiciously consistent at or around 17.9 weeks, just inside the 18 week target, over a number of months. At the same time I found out that a whistleblower at the Trust had discovered that incorrect RTT data was being submitted to NHSE, and had been for many months.

At that point the Trust commissioned their auditors, Deloittes, to investigate this matter, and concurrently the whistleblower informed Monitor.

The report by Deloittes reveals that RTT data was manipulated from December 2013 to January 2015 for submission to NHSE, with the effect that the Trust met the RTT target each month. Hundreds of waiting patients were excluded from the submitted data every month.

The Trust thus avoided penalty fines from the CCG and critical attention from Monitor for what really were waiting times well in excess of the RTT standard.

And patients continued to wait longer than they should for treatment of debilitating orthopaedic conditions.

The Trust Chairman and Chief Executive have said that the Trust has corrected the procedures for data submission and that they are looking to the future to ensure that data is correct. They say that the waiting lists have been brought back to 92% standard RTT times during their recovery plan up to the end of July.

But no one seems to be prepared to accept responsibility for this manipulation of data. Deloittes are carrying out a second investigation at the Trust into the culture and leadership, especially looking at how these events happened

At the July Board meeting, in answer to my suggestion that the Board had been putting balance sheet and reputation before patients’ timely treatment, the Chairman said very strongly that this had not happened and would never happen at the Trust.

So how do we explain what has gone on for the last five years?

Three Directors of Operations in five years have been involved in submitting false RTT data. Why did they do this? Did they all just think, independently and alone, this would be a good idea. And I won’t tell anyone else at the Trust that I’m doing it. The second Director started false submissions only a few months after the first episode had been put right.

At the May Board meeting I was assured by the Chief Executive that the Trust’s internal data was correct, and the then unexplained “anomalies” were only in submitted data. So the Trust Board knew that the true waiting list was far longer than that published. I cannot believe that the Board executive directors never once were told about, never found out about, and never talked about their published RTT data compared to their internal waiting list data. (I have to assume that non-executive directors simply were never shown the internal waiting list data.)

I asked the Board in July why no action had been taken to address their lengthening waiting times from December 2013 onwards. After all, if their internal data showed the true picture why would they not want to take action to ensure that patients did not have to wait other than appropriate for treatment? The Board did not answer this question.

Indeed, the Chairman told me that he did not wish this “game of ping pong” with me asking questions at Board meetings about RTT times to continue as it did not serve a useful purpose. He also said if I wanted to support the Trust I should not ask questions like these in front of the press.

Is this a Chairman, and a Trust, that is displaying Nolan principles and values? Transparency? Openness? Moral values?

Is the Chairman holding the Board to account for the manipulation and submission of false data? For deliberately choosing to allow hundreds of patients to wait months longer than they should for treatment? And for lying about this?

My take on what happened is based on inference and experience. Three operation directors were pressurised by the Chief Executive to find ways of ensuring that published RTT data showed the Trust was meeting the standards.

Once they started they could not go back, as the waiting times would then mushroom. So it went on.

The executive directors must have seen internal data and discussed their waiting lists. They all must have known what was being done. But once in they could not get out. And one person must have made sure no one jumped ship. The chief executive. She is the common factor in all this.

The non executive directors were undoubtedly kept in the dark about all this throughout both these episodes. Their job is to challenge executives but how could they do this without knowing what was going on. But, why were they not able to get hold of the internal metrics? These must have been hidden, so that only manipulated data was shown to them and published in papers. I know that at least one non-exec asked about waiting times in 2014 but he must have been unable to find out the truth.

Who hid the data? Who but the executive directors?

Back to the underlying reasons for falsification. In 2012 it was to prevent the Trust from breaching RTT standards, which might have prevented it from being approved for Foundation status.

In 2013-15?

Well, we don’t know why waiting times started to lengthen in late 2013. Referrals must have outstripped Trust capacity. The Trust did not want to turn away business, but nor did it want to, or perhaps could not, expand its capacity. What was it to do?

This is a Trust run as a business, with balance sheet and reputation dominating high level decisions. Of course they deny it, but they chose not to take action to enable patients to have timely care and treatment. They could have refused referrals. They could have paid for out of Trust treatment, like they have had to do this year. They could have improved their booking and scheduling systems to increase patient throughput.

But no, they chose to make patients wait longer, to avoid penalties and preserve their reputation.

These are directors of a public body within the NHS. They have professional memberships and are expected to abide by professional regulations and rules. They have to abide by the Nolan principles for pubic life. They have to be fit and proper persons to be directors of an organisation providing registered care.

They are also paid a lot of money to run the Trust: salaries of £110k to over £150k, plus pension contributions.

Should these people be running a Foundation Trust?

When will the Chairman and non-executive directors take action to rid itself of these people and recruit Directors who will change the culture of the Trust? Putting patients at the forefront of the business of the Trust!

I repeat, this article is entirely based on facts in the Deloittes report, and dealings I have had with the Trust over six years. The facts cannot be challenged; my interpretation could be.

If the executives did not know about all this they were inept and possibly absent without leave. If they did know they are not fit to be directors. Either way, patients deserve better.