Why bother with Dementia Specialist Nurses when you can have the Gas Man?

This week has been a little bit unusual.  As a dementia nurse specialist, and 'Champion' for dementia in the NHS Trust in which I work, I deliver education to other hospital staff.  That's a key thing us Dementia Clinical Nurse Specialists can do you see - Educating others properly is what will lead to the improvements in care we all want to see for people living with dementia.  So far not so unusual. 

I teamed up with my colleague and Friend,Rachel Mortimer to deliver education to 1200 'patient facing staff' - That was the target set to us by the educational body overseeing the NHS in Kent Surrey and Sussex.  We decided to run a number of screenings of the film 'Alive Inside'. Watch the trailer here  To be honest, initially as an afterthought, we opened these screenings up to the general public. 

It turns out quite a few family carers, interested community colleagues, and even a few people living with dementia were keen to be part of this.  So this is where it becomes a little unusual - Hospital staff training that the public are keen to come to!!  Just a word about Rachel's work: What she does so expertly is deliver approaches to helping people with dementia through 'Ignite' sessions, through her vision to create actual culture change, and stepping bravely into the machine that is the NHS - with only an aim of helping people.  

We opened our first screening with a talk from Graham Browne, who lives with dementia.  He very honestly shared with those in the room how he is very much still 'Alive Inside'. 

A galvanisation in the room could be very tangibly felt.  Pledges to share

 the film at their own workplaces.  People made pledges to bring music players / i pods to care homes.  

I've always struggled a little bit with the term 'Dementia Friendly communities'.  What does it really mean?  Is it that the supermarket worker will have patience for the person who cannot manage the chip and pin machine due to worsening memory?  Is it the bus driver knowing to prompt the lady who looks lost - They know her regular stop - she gets the same bus every day.  Is it the parent who answers honestly to the child who asks why that old person over there looks 'really scary'?  Is it the dropping of dementia from the unofficial 'Dirty word' list that we all store in our heads. 

Surely it should be the case anyone with any kind of disability or long term condition has a right to access the community and be a part of it just as anyone else does?  After all, we don't have 'Cancer friendly communities' or 'Heart failure friendly communities'.  Yet people with dementia are often isolated, often alone, often ignored.  People still joke about dementia.  How many times do I tell someone what I do - They say 'Right, I know where to come when I loose my marbles then' before guffawing loudly at their own quip.  I don't hear anyone make jokes about HIV or other serious illnesses.

A dementia friendly community is something that becomes such from within itself.  It may take a push from members of that community with a passion and energy to bring dementia awareness to a town or a city.  There is a project in Kent, the SILK team (Social Innovation Lab Kent) who have really worked WITH local people living with dementia.  The result?  Dementia Diaries - A really brilliant way of raising awareness and getting people talking about dementia.  It is no coincidence that Kent has more admiral nurses than anywhere else in the Kent, Surrey, Sussex region.  

A community that is friendly towards those people with dementia is also a community that includes support from a dementia nurse specialist.  Well, it is in my view anyway.  Though it seems to be the case that still this is not recognised or accepted.  There is emerging evidence to strengthen the case - but it is slow to be accepted.  This key report came and went with very little noise.  RCN and University of Southampton Report on Dementia Specialist Nursing  The Royal College of Nursing's 'Triangle of Care' - A great model seriously under-promoted and under evaluated.  Why? 

I attended a conference this week - A regional conference linking people working in the dementia field.  Obviously there were only 2 people with dementia there - Why bother to involve those who actually live with the condition after all??  Still, an improvement on the none of last year.  A new medical director is in place with regional leadership for dementia.  He told us pushing up diagnosis rates is the 'new priority'.  

I  commented, when questions were invited that this is not new and actually those of us working directly with people with dementia need to see a focus on CARE after diagnosis. The gentleman told me it is new for him, and that no one has really taken notice of increasing diagnosis before.  I considered asking him if he was aware of the 2009 dementia strategy but decided perhaps not.  His comments were a stark reminder that the policy is still very much - Diagosis Diagnosis Diagnosis.  

This was followed with comments from a 'Dementia Friendly communities Officer'  (Yes, this is the job title - I have not made it up) who talked about a project to make several businesses in their area 'dementia aware' through Dementia Friends.  I am not opposed to dementia friends, awareness is to be celebrated.  Having a gas man(Or lady!) who is a dementia friend could be a real help.  The point put to us at the conference was a project to make all the gas engineers dementia friends.  There is no Dementia Specialist Nursing Support in the area this is taking place.

 It is not however, a replacement for a skilled professional who can guide and support through the maze that is health and social care.  The places dementia takes a person and a carer to can mean that very skilled psychological and emotional support is needed.  This is why you need a dementia specialist nurse - not just the gas man.  The Alive Inside Project has meant that I have been able to take what I know and understand about dementia, back out into the local community.  It has helped hospital staff think differently about a person with dementia.  If that helps to improve the care someone in hospital might get, so much the better.  I've been able to learn about what really makes a community evolve into one that is dementia friendly. 

Yesterday, I spent time with a family right at the moment of diagnosis.  Then followed a conversation with the daughter of the person who lives 300 miles away, but love and worry travel endless distances.  I listened, I explained, I made sense of the emotions flooding out.  I answered the questions, I talked about what will happen next.  I made a plan to meet again early next week.  I used a variety of skills, counselling, assessing, judging need, actively listening, empathising and facilitating.  I used my nursing and clinical knowledge of dementia to give the person and their family the personalised support they needed.  I'm fairly sure I'd be rubbish at fixing a boiler, so I'll leave that to the gas man.

A patient for a day

This blog post makes reference to the #hellomynameis campaign and the work of Dr Kate Granger.  I would like to dedicate this blog post to that campaign, and also to acknowledge the bravery and courage of Dr Granger.  This post is really a series of reflections on my own recent admission to hospital for a small operation.  As I wrote, I realised that many of these reflections are about what can happen when hospital staff do not introduce themselves.  Given that #hellomynameis is very much in the news today, it seemed fitting to share those messages here too.

Having already got slightly lost finding the ward, I pushed open the door.  A nurse in a royal blue uniform looks my way, looking slightly surprised to see me.  The letter said to arrive at 7 30am, I look at my phone and see it is 7 27am.  'Yes?' the nurse says, staring at me quizzically.  'Erm, I'm sorry, I'm due to be here for my operation today, the letter says to report here at 7 30'  I wonder to myself why I'm apologising to her.  More of that later.  

I had already noted a sign on the door saying that patients are prohibited from being accompanied, unless there is a 'Social or caring reason why you need someone with you'.  I think to myself its a good job I don't feel terrified or confused at this point - If I did I would have felt worse after reading that.  Of the many signs I have come across in the NHS in the fifteen years I have worked in the organisation, this is one of the more memorable.

The nurse looks the other way at a dimly lit semi circle of chairs and says 'Sit over there'.  Seemingly almost as an afterthought she asks, 'Name?', I tell her, and I obediently go and sit down.  The nurse does not introduce herself, ask me if I am okay, or offer any other opportunity to interact with her.  I'm already aware of a feeling that whether I am okay or not is really unimportant.  

A few minutes later, other people, quite a few with nervous faces file through the door.  A ward clerk greets every arrival with a 'Clean your hands with the gel please'.  I notice a young girl, with a woman who I assume is her mum.  She is tearful ' You have to leave now' says the ward clerk to the woman.  She turns to the girl ' You will be fine'.  I sit there, imagining I would feel anything but fine if I were that girl.  Royal blue nurse ushers her along, the girl is still crying.

There is a sign at the desk promoting the hospitals version of 'This is me' for a person with dementia.  It doesn't say where to get one or who to ask about it.  I wonder about having a sign on the front door of the ward, alerting family carers to this information.  Hang on, I' m not at work now am I! You can take the dementia nurse out of the hospital and all that......

An older gentleman asks where he might be on the list because he is diabetic and is worried about his blood sugar levels.  The nurse asks him if he took his insulin.  He says no and she says 'Well that's fine for you to wait then'.  I asked later in the day about operation list orders that patients with diabetes are usually prioritized.  Why could he not be reassured of this I wonder?  A health care assistant hands him a gown and tells him to change.  I notice that he looks very forlorn before the curtains are pulled around his cubicle.

I sit for 90 minutes, I've come prepared, I watch a documentary I had downloaded onto my tablet to distract myself.  A man comes over and introduces himself, and shakes my hand warmly.  He is the Anaesthetist.  He smiles, explains fully what is going to happen.  He says I am last on the list and jokes that someone has to be!  I don't mind that, but I would have possibly liked to have been told already - 90 minutes is a long time to sit in a hospital ward before ANYONE comes to talk to you!!  He tells me as I'm last on the list I can have a cup of tea.  45 minutes later the tea comes - I had asked if I could make it myself at the drinks station but was told curtly that there was 'no need'.  I'm called into another cubicle space to see the surgeon - She is nice, very nice.  She introduces herself, explains everything very well and reassures me it will all be fine - She seemed to sense the worry I was trying to hide!

I return to my seat in the waiting area and think to myself that the doctors seem much warmer and kinder than their nursing colleagues.  I immediately feel slightly ashamed that I'm even having such a thought, I am a nurse after all, I feel slightly treacherous towards my profession, but annoyed at the same time!  What is it that is making the nurses seem unable to share just a little kindness!  Not one nurse has introduced themselves!

Many of you will know about #hellomynameis, founded by Doctor Kate Granger - I think about her as I sit there, and the campaign she spear-headed for health professionals to start an interaction by simply introducing themselves.  It really does make so much difference.  I also for possibly the first time if I'm honest, feel the power of the very simple message of hellomynameis, and how if it doesn't happen, the relationship between professional and patient is already flawed.  Dr Granger.  I realise that I am really not enjoying being on this side of the fence, being a 'patient', because I feel so dis-empowered,  I feel I am not important to the nurses who are looking after me - I want to be important to them.  Is it wrong to think that? 

What Dr Granger has done, by so generously sharing her own experiences, is that she offers us a chance to learn how simple things can help us make our patient's feel that they are important.  EVERY single health professional or health care worker should take heed of this.

Another hour goes by, I feel a bit worried now - I know I'm only having 3 teeth removed, but this will be painful, and I'm worried about the bruising on my face.  I remember last time I had an anaesthetic, and how sick it made me.  My imagination is going into overdrive now, I feel a bit panicky.  I tell myself I'm being silly.  My mind also crosses back to work - How on earth do people with dementia cope with hospital environments when I'm feeling like this?  I make a mental note that this is something really important for me to remember.

I'm called in to a cubicle by the health care assistant.  She introduces herself and tells me to wait 'a bit longer for my checks'.  Opposite me in another cubicle, an elderly lady is being prepped for her operation.  A nurse asks her 'When did you last have a drink?'  The elderly lady isn't sure, she says maybe 10pm last night.  The nurse asks her to take her jewellery. The lady starts to cry and says she feels 'naked'.  The nurse says 'I'm sorry' in an attempt to comfort her.  I want go and comfort this lady, or go and reassure her.  I don't.  I feel like I daren't move from my little cubicle.  Why do I feel like that?  I realise that even in this short time I have absorbed myself into the 'sick role' - I can't go anywhere unless I'm told to.  I start to think about how dehumanised I feel already.  I know that's a strong word to use, but it is the word that came to me as I sat there waiting. 

The lady then says that at least she got her cup of tea this morning.  The nurse's tone changes and she says 'You told me you last drank at 10pm, now it's this morning - Which is it? I will ask you again, when did you last drink?'  She sounds irritated.  The lady pauses, says 'Did I have tea this morning? I don't know, no...I was so worried about today'.  She sounds tearful.  'Right, well lets go with this morning shall we, as you are not sure' the nurse says, more gently, but I can't help but feel myself bristling and feeling a sense of discomfort at the interaction I have just listened to. 

My turn to be prepped next.  Its the same nurse who prepped the lady opposite me.  She tells me her name after I ask her.  I say I'm feeling a bit fed up, I don't know why I'm telling her.  She says that 'Someone has to be last and I'm afraid its you today'.  I know that - I don't know why she is saying this.  I think what would have helped was a few short conversations with the nursing staff - to be kept up to date, to know who they were!!!  As a patient we share so much of ourselves with the people caring for us - the very least we can do as health professionals is share who we are!!!  Maybe then I would have felt able to ask for other information - If you know a person's name it can help you feel more able to approach them!!  Dr Granger's message is absolutely correct in every sense. 

I walk into the operating room, by which time I am in floods of tears.  The surgeon actually sits and holds my hand and reassures me!!!  I don't know why I was in floods of tears, perhaps it was the whole morning of feeling mostly like I didn't really matter.  Every single patient matters - That's why as a dementia nurse I am so vocal about person centered care - because that is how you help a person to feel as though they matter.  

As I came around, I was looked after by a lovely nurse, who asked me gently what pain relief I needed, and explained what was happening.  A senior nurse (a matron I think) came to speak to me - She was very kind, though I can't remember too much of that conversation thanks to oromorph!! 

There were pockets of kindness throughout my experience as a 'patient' for a day.  Those people who showed that kindness were the ones who know it matters to say 'hello my names is'....the rest flowed from there.  The difficulty for me is that the moments of kindness felt not the norm but the exception.  Being a senior nurse in the NHS, I'm not naive, I know the challenges that face us and the pressures we work under.  I also know that these challenges and pressures do not need to be barriers to our responsibility and indeed our desire to show people we look after the kindness they deserve.  Asking a person if they are okay, telling them who you are, thinking about the distress a person might be feeling - these are all things we CAN DO.  These are the things that will make a difference. 

References: 
#hellomynameis: http://hellomynameis.org.uk/

'This is me': http://alzheimers.org.uk/thisisme