delirium – Sparklystar55

Find the river

April 2, 2018 clcopeland

I love this time of year. Increasingly more so than Xmas even with all its twinkly sparkliness. Easter is definitely my new favourite. Why? Well, I think it’s the most hopeful time of year. The clocks have just sprung forward giving us lighter evenings. The birds are singing and there’s a general sense of things coming back to life. However it’s the sense of hope that Easter brings that I love the most. And it’s hope that I want to focus on.

I was at church today and as you might imagine everyone was in a jubilant mood (there were three confetti cannons!). I expected the sermon to be equally uplifting so you can imagine my surprise when the pastor opened with how terrible it all was. People were sad, they were bereft, the church was about to get much worse.

I began to wonder if I was in the right place. As he went on I thought about making a sign saying ‘Easter = happy’. Spiritual nourishment it was not. Then he quoted this by Jurgen Moltmann:

‘That is why faith, wherever it develops into hope, causes not rest but unrest, not patience but impatience’

Ok…… This was interesting.

Now I don’t want to get into the detail of the rest of the sermon – it turned out to be one of the most inspiring and uplifting ones I’ve heard in ages. I also think that some reading this won’t be particularly interested in it. So why I am mentioning it? In that moment it challenged every idea I had about hope.

I had always took hope to be this thing that you could hold onto tightly like an unshakeable solid foundation giving you security.

Hope is also something that I have thought to have both spiritual and non spiritual connotations. For example every year I hope that the Pittsburgh Steelers will win the Superbowl. My hope never gives up until its clear they are not in the Playoffs. I digress…. Everyone has something they are hopeful for whether it be a cure for cancer or merely that it won’t snow again. To suggest that it causes unrest and impatience came as a bit of a shock.

In reality this is something I’ve been struggling with recently in my day to day work. In particular the work I’m doing around education. In the main I would consider myself to be a positive person. When it comes to getting things done the hope is to get people to see the why in order to get to the how.

So I was surprised when I found myself telling an audience at a delirium conference that i was getting grumpy and a little fed up. I felt like I was always preaching to the converted. We have yet to see delirium education imbedded into induction programs. It is yet to be made a priority within our clinical governance structures. We also still talk about other quality clinical indicators but not delirium.

This frustration continued into the leadership course the following week where I was challenged to essentially get my own house in order before tackling bigger or loftier projects.

I found myself thinking about a comment from my previous workplace in which I was told ‘you can’t be a prophet in your own land’. Was history repeating itself?

I asked a colleague how they thought I was perceived by others ‘Challenging, very challenging but in a good way!’

I was beginning to loose hope. Not faith but hope that anything I did was ever going to matter or make a difference.

‘That is why faith, wherever it develops into hope, causes not rest but unrest, not patience but impatience’

Today on this beautiful spring day I have renewed hope. A sense that my deep dissatisfaction with how things are done will inspire unrest in others. I hope it will make people impatient for things to be better.

After all we’re closer now than light years to go…….

delirium, Uncategorized

Come into my world

June 12, 2017 clcopeland

What would you like us healthcare professionals to do better?’

The person asked was an older gentleman who had survived several admissions to Intensive Care. On each occasion he suffered delirium.

His answer was simple: ‘come into my world’

For me this summed up the American Delirium Association conference. It was, in every sense, a conference about people and for people.

I had been looking forward to Nashville for many months. The only minor obstacle raising my stress levels was the flight itself. I have a well documented discomfort of flying and this would be my first transatlantic flight by myself.

To make the flight better I had booked a window seat – ironically I do better when I can see the horizon or the ground below. However I’d manage to book the only seat on the plane without a window. What the……?!?!?!?!

I tried to explain to the cabin crew but as the flight was fully booked I had no choice but to go back to my seat, albeit with another glass of Prosecco as an apology.

The lady next to me however had a much bigger problem – her TV wasn’t working. It was at that moment I felt the universe had conspired towards us. We started talking instead. It turned out to be one of the best journeys. Joyce was turning 70 this year and was making the trip home to South Carolina having visited family in England. We talked pretty much non stop the whole way. So much so that another lady came over to join us – she heard the ‘animated’ discussion and wanted to join in. In that 8 hour flight I entered the worlds of two other people. We shared stories, opinions and wine.

Although I didn’t know it at the time it was to set the tone for my whole trip.

After a 7am start on the Sunday I figured I could justifiably spend the afternoon doing a tour of Nashville. To be specific is was a 3.5 hour extravaganza of ‘Nashville the TV show’. It was as amazing! Not only did we go to all the sites they film at but we took in the surrounding area including people’s houses (Taylor Swift, Dolly Parton, Tim McGraw etc) plus we got to go inside the Ryman Auditorium. Hugely exciting! The people on the tour were as friendly and entertaining as our tour guide. Apparently my Scottish accent was ‘awesome’ although by their own admission their impersonations of it were less so… 😀

At dinner that night an older lady clambered up on to a bar stool next to me. Fearing she’d break her hip I offered to help. I was emphatically told ‘I can manage just fine but thank you all the same’.

We got to talking – she’d also been at a family wedding over the weekend but was now intent on ‘partying’ in Nashville. She was 73. She went on to tell me that she was from Colorado. A state, which she proudly explained, has one of the longest life expectancy. Seemingly the thin air makes your body work that bit harder especially with all the ‘outdoor living’ The whole conversation was a testament to positive ageing. Her only gripe was the arthritis limiting her skiing now.

The next 2 days would be jam packed with delirium research, raising awareness and education. The aspiration being to better understand something so complex and yet so simple in terms of its basic management.

As I got on the plane to come home I thought about how fortunate I’d been to meet so many incredible people. Each of them allowed me to enter their world for a short period of time and by doing so they have changed mine forever…..

geriatrics, nhs

Free, free, set them free

June 5, 2017 clcopeland

This week I’m in Nashville for the American Delirium Association Conference (#ADS2017). Day one was heavy on education and although I was familiar with most of the content I always find it interesting to hear how others interpret and explain things. One session on delirium in the Intensive Care got me thinking:

Now when you mention restraints to people in healthcare they will generally think about the kind that have people strapped to a chair or cot side. Thankfully these types of restraints are no longer routinely used in the NHS.

There are some kinds of restraint that can be a good thing for example, the plaster cast that stops a fracture becoming displaced.

However what about the restraints we use by proxy?

As I sat in the lecture I got to thinking about what happens to a person when they are in hospital. Last week I talked about the role of the environment in particular how it can be damaging to the person with delirium or dementia. By making simple changes there is evidence that the person will get better more quickly, so of course the environment was number one on my list.

The #endpjparalysis campaign on social media also highlights it. I recently had a patient comment she would like to get dressed but unfortunately her family had only packed her a nightdress. Most equate a hospital admission with serious illness however the aim is to get the person better as quickly as possible so we do need to see beyond that. One could argue that a person’s dignity is restrained by having them rehabilitate (walk, eat etc) only in nightwear.

Which brings me on to 7 day access to a multi disciplinary team (MDT). We know that early access to physio and occupational therapy can have huge benefits not only on the physical but also cognitive health of a person. Could limited access to the MDT be a restraint by proxy? I’m not so sure. I do think they are spread far too thin. I also think that some of the tasks could be done by others, in particular, our healthcare assistants. I just wonder if they perhaps need to be more empowered to do so instead of just doing unto the patient….?

One thing that does not help in the early mobilisation of a person is the use of sedation. It’s not just an issue for ITU, many of our older people are on medications that actively sedate them e.g. the ‘little sleeping tablet at night’, strong painkillers even some antihistamines. I would argue that Geriatricians in conjunction with our pharmacy colleagues are good at trying to rationalise medications. The community, especially care homes are not quite as good.

So coming back to the hospital setting both in acute and rehab here are a few other things that could be considered restraint by proxy;

urinary catheters
hearing aids that don’t work or are not fitted
no glasses
buzzers that are out of reach
empty water jugs and cups
inappropriate walking aids
no walking aids
no ‘getting to know me’ or ‘what matters to me’ discussions

Most would be horrified at the idea of going back to the use of physical restraints but I wonder if we realise all the other ways we achieve the same effect? Perhaps we ought to reframe the discussion so that as with straps, belts etc other restraints by proxy can become a thing of the past….

Dementia, education, Uncategorized

All that matters to me

May 1, 2017May 2, 2017 clcopeland

This week I was invited to talk to care home staff at Erskine. It was part of a series of talks to raise awareness about delirium, mobility issues in those with cognitive problems and dementia. In addition to these clinical talks were two from a relative and carer perspective. One was Tommy Whitelaw (@tommyNTour) talking about his mum Joan. The other was given by a family member of a current resident.

I must say when I saw that relatives were speaking I thought: ‘Wow! That’s quite a brave thing to do. I wonder how the staff will react?’

I’m all for putting my head above the parapet but not many others are. It can be incredibly difficult to hear feedback, no matter how constructive, without first putting it through a defensive filter.

That said I found what they had to say both incredibly moving and challenging. I don’t mean that critically either. When you work in your own tiny eco system of healthcare you can desensitise or even forgot how a simple turn of phrase can inadvertently upset a person. To hear that your mum is ‘too good’ for a care home after you’ve spent months anguishing over the decision can bring back feelings of guilt.

We were also reminded to take the time to remember that this person is a mum, a dad, a brother, or a sister. This person will never be a resident or a client to a family. They are people with stories and lives of their own.

It was these talks that had the greatest impact for me.

You see we talk a lot about being person centred but if feels like being in an echo chamber at times. What do I mean by that? Well, it tends to be people working in the health service talking about the need to be person centred. I rarely hear the patient or relative perspective in these meetings. It’s also started to feel a little competitive:

‘And the prize for person who talks the most about person centredness goes to…..’

I personally feel that it you were you wouldn’t feel the need to go on about it so much. You would just be.

So what makes the difference then? Tommy and I spoke about some of the people he’s met over the past few years. It’s quite a list although I got the impression that those who have affected him the most are those on the ground, so to speak. For all the pledges and promises of funding from on high it seems to get stuck on the way down to those who need it most.

As Tommy said caring is not seen as a career to aspire to. Even those working in the care home sector will struggle to get access to adequate training and education.

We have created this culture so we alone are responsible for changing it. I don’t want to hear people talking about what they should do. I want to see them actually doing something!

I’ve always been a believer in the concept of small steps of change. You are however investing time and effort in a very distant future so it does require patience.

Looking around the room after Tommy spoke and seeing many in tears, it was clear that a difference had been made. And that’s all that matters……

Uncategorized

World delirium day 2017….

March 20, 2017 clcopeland

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Straight off a weekend of on call I went into prep mode for World Delirium Day (Wednesday 15th March). The idea of doing a day of global awareness had been talked about for a while but only in the past month or so had it really become a reality. We at the Scottish Delirium Association were keen to be involved.

We’d done a similar social media campaign for one of our meetings in June 2016. Myself, Ajay Macharouthu, Alasdair MacLullich and Karen Goudie began a week of tweeting and FB posting which culminated in the live broadcast of the SDA conference via Periscope. I think we were all a bit bordering on delirium ourselves by the end of it. However anything to raise awareness in delirium can only be good thing.

The hub of World Delirium was http://www.iDelirium.org. Using #WDD2017 social media was again used as the driver to advertise and influence. During my weekend on call when I wasn’t seeing patients, I was loading up tweets and FB posts, writing a piece for our Comms department, ordering up more resources to share (thank you lovely OPAC!) and generally trying to do my bit.

Ironically on the day itself I was focused on another aspect of brain dysfunction. We’d had a stroke simulation day in the diary for months and wasn’t one I was about to cancel. Instead everyone got a delirium lanyard and a reminder about what else the brain does.

As the day went on my phone was constantly lighting up either with SDA tweets and FB posts as well as my own twitter feed. My multi tasking brain was kept active until well into the night.

Similar to last year I did have a sense that we need to be moving on from merely raising awareness. We need something more tangible to show for it. This has also been the view of some of my delirium education colleagues. On the back of this we have been developing a sister website to iDelirium to focus purely on education. The www.thinkdelirium.com was launched to provide information for both healthcare providers as well as patients, families and carers. More importantly it is a one stop shop to share educational tools such as slide shares, simulation, videos as well as updating on the latest research and delirium meetings. It’s still under construction but we’re all pretty excited to be able to provide resources to those who are looking to not only learn but educate others about delirium.

We have also submitted an application to develop a MOOCS (Massive open online course) which, if approved, will be the first of its kind in delirium education.

And finally the undergraduate work that myself, James Fisher and Andy Teodorczuk have been writing for the past year looks close to fruition. As does the undergraduate nursing education work.

Events like #WDD2017 are fantastic to raise awareness but I have a sense that people want more. People are no longer content knowing what it is, they want the skills to know how manage it. We need more research to help us better understand delirium so we can develop new management strategies and education tools.

Like a lot of conditions in medicine while we may not be able to entirely eradicate it we will have the power to control it and that’s a pretty worthy aspiration of any delirium superhero…..

Uncategorized

Is Donald Trump’s Press Secretary suffering from an acute delirium?

January 23, 2017 clcopeland

This was one of the questions I asked myself in the week that saw the reality TV star inaugurated as the new President of the United States. As we know during a delirium there is:

1. disturbance of consciousness (i.e., reduced clarity of awareness of the environment)

2. the development of a perceptual disturbance that is not better accounted for by a pre-existing, established, or evolving dementia

These two points came to mind as I listened to the explanation regards the diminished numbers of people who turned out to watch the inauguration.

‘This was the first time in our nation’s history that floor coverings have been used to protect the grass on the Mall. That had the effect of highlighting any areas where people were not standing, while in years past the grass eliminated this visual’

In contrast we couldn’t fit anymore people in at Erskine for the delirium and dementia education day.

The evidence for delirium in care homes is poorly understood. I think a lot of this has to do with the focus on acute care. However there is increasing acknowledgement that care home staff probably care for as many, if not more, people with delirium.

One statistic puts the prevalence of delirium as somewhere between 8 -15% Derek Barron, Director of Care, tried putting that in context for the staff. Erskine Home has 180 beds which could mean 14 – 27 residents could have a delirium right now. More to the point do staff know for sure who those people are?

The reality of caring for people with delirium and dementia is not something I needed to teach the Erskine staff. That would be hugely disrespectful for a start. What I had hoped to get across was some of the understanding around delirium and how to diagnose/manage it. Central to this is my belief that we should be challenging our own behaviours instead of those we believe to exhibit ‘challenging behaviours’ towards us.

This was something Janice McAllister spoke of in her talk on dementia. We are ‘disabling people with our behaviours and attitudes’. Janice was able to help us see life through the eyes of a person with dementia. More importantly she was able to make us realise that it is the simplest of things that can make the world of difference.

Janet, head of physiotherapy, spoke about her approach of ‘do with’ rather than ‘do to’ in those with cognitive problems. The idea that any rehab should be task specific reinforcing the need to know what matters to the person. Not just what we think matters to them…

This theme continued as the daughters of two of the residents shared their perspective on the care their Mums’ received at Erskine. They spoke candidly about the good and the not as good. You could tell it was hard to hear but what came across was their appreciation as well as admiration for the work the staff do.

Something that really resonated with me was the comment that ‘I have known my Mum for 56yrs and you have just met her’. I find myself saying something similar when I meet relatives which is why I am such an advocate for the ‘Getting to Know Me’ document. I have the medical but none of the personal knowledge to help alleviate their loved one’s distress.

Tommy Whitelaw continued to inspire as he spoke about ‘being the one who makes a difference’

The day was summarised for me with Nadine Schofield of ‘Let’s Respect’ when she spoke about the importance of teaching care home staff the 3 D’s

Delirium
Dementia
Depression

Know about them and you’ve pretty much covered all of mental health in older people.

Something may have changed and reality may be to some a distorted nightmare. However on that day I left Erskine with a renewed sense of hope and faith in the goodness of people.

Links:

http://tommy-on-tour-2011.blogspot.co.uk

http://letsrespect.co.uk

https://www.erskine.org.uk

Dementia, Uncategorized

You better think…..

July 25, 2016 clcopeland

First week back at work. Holidays have the peculiar effect of feeling like you’ve been away for ages but also never left. There’s the inevitable gazzilion emails to wade your way trough. Unless of course you set it to auto delete but I gather that’s frowned upon now….

It’s been quite a full on week that started with a presentation at a conference for care home staff on delirium and dementia. Delirium is something I’m particularly passionate about it so it was fantastic to be talking with people who play such a vital role in their care.

Delirium can be a devastating illness that can affect anyone of any age however it affects older people more commonly.

At the start of any presentation I always start with the think-delirium same question: ‘What does delirium mean to you?’ So it was with total dismay and frustration that to area of the media delirium would appear to mean criminal behaviour.

The headline ‘Over-75s perpetrators of NHS assaults’ immediately conjures up images of staff being assaulted in a deliberate act of violence by old people.

http://www.bbc.co.uk/news/health-36829120

The language used to describe the fear and distress of older people without once mentioning the word delirium was particularly upsetting. There are people out there trying to make a difference, educate and change perceptions. An excellent blog written in response to this was by a Geriatric Registrar Dr James Woods (@jmwoods87)

https://britishgeriatricssociety.wordpress.com/2016/07/21/challenging-the-depiction-of-delirium-in-the-media/

One of the ways I try to challenge people in their attitude and behaviour is to talk about ‘Jimmy’. Jimmy is a fictional person but his story is a fairly typical account of the people we see with delirium. I take them through what may’ve caused his delirium and its subsequent effects. I then pause and put up pictures of crying babies. The story is repeated word for word only this time Jimmy is 9 months old. He is frightened. He is distressed. He is alone.

What do we think about Jimmy’s behaviour now? Do we repeatedly tell him to be quiet? Do we tell him to stop moving around? Do as many as 30 different people meet Jimmy but not explain who they are? Do we keep his favourite toy/security blanket from him?

What do you do instinctively for your child and why do we forget the fundamental basics when looking after an older person with delirium?

And l ooking after a person with delirium should be instinctive. It’s common sense and it shouldn’t be that hard.

Going into my on call on Wednesday I knew that the vast majority of the older people I would see would have delirium. I also knew that the families and carers of these people would be extremely worried and stressed about their loved one.

I’m a big fan of open hours for visiting as it’s an opportunity to talk to families and hopefully, to a chance to reassure them. At the very least I try to be as honest as I can. That can be tough though. Sometimes you are the emotional punchbag for a lifetime of family dysfunction and issues that have absolutely nothing to do with you. You just happen to be the person who appeared in that moment of crisis.

As cliched as it may be I honestly think the best thing to do is just listen. After that, give the best care you can. Part of that can be to remind people that ‘bed 6’ has a name or to ask them to pause a minute to think about how they might feel if their mum/dad/husband etc was admitted – what would you want for them?

So it seems crazy to me that we have to teach or even remind people of this. When did we stop doing this?

Kate Granger died today. She spent the later part of her life reminding people of this very thing. The work she did in this was nothing short of amazing but it saddens me that there was a need to do it in the first place.