Lets all work together

I was fortunate enough to be up in Telford for the 10th National Dementia Congress this week.  The theme that stood out was the need for us to work jointly alongside people with dementia, to make the changes needed in how we support people.  I came away feeling very positive, even though many challenges remain.  The involvement in previous congresses from people living with dementia did feel as though it had really shifted to more than involvement, with real leadership from them.

Many hundreds of thousands of people with dementia continue to be voiceless, alone, isolated.  The very elderly and frail people who live with dementia and those who care for them continue to need advocation on their behalf.  There is still much to do.  In the words of a person I met recently 'I'm old and unimportant'.  Professor Graham Stokes suggested that the difficulty is dementia attracts the stigma of mental illness and many who live with it are subject also to ageism.  This may well be true.

So on with the positive then, else the challenges above will remain unresolved....

Jeremy Hughes, leader and CEO of the Alzheimer's Society stated in his key note address that there must be efforts on the part of us all to work in collaboration.  He also referenced the precarious position of Adult social care, stating that there must be more from Health Services too.  These are welcome remarks, as this is recognition of what we in the NHS can offer people if we are supported to do so.  The case for more specialist nurses was heard loudly at this congress, directly from people living with dementia and carers, from those nurses themselves, and from many of the speakers throughout the three days. 

Keith Oliver, living with dementia reminded us all very aptly that tokenistic consulatation of people with dementia, to 'tick the box', is the biggest threat to the ability of health and care professionals to working truly alongisde people with dementia.  The NHS can be a very hierarchical place, with a certain 'way of doing things'.  We can work with people we support without insisting they come to the 'steering group', we can ask them directly what our care environments and services should look and feel like.  We don't have to pass people from service to service.  Yet we did hear lots of discussion around the fact that this is still happening, quite a lot of the time. 

Larry Gardiner, living with dementia says 'Don't spend months worrying and arguing about what the memory problem is.....help me with the memory problem!!  That's as pointless as trying to argue that a duck is not a duck'  Common sense indeed!  Larry's words struck me profoundly, we in the NHS are just a little bit silly sometimes....we don't mean to be, but the systems in which we operate render us less able to do things differently. 

Larry Gardiner, second from left...speaking with colleagues on what we professionals can learn from people who live with dementia.  It was a really well received session.

So back to working together then.  We can do that.  I work very much in partnership with local colleagues from the Alzheimer's society.  I work with Admiral Nurses who work in a different trust.  I work with Dementia Support Workers closely.  I work with commissiomers and managers at varying levels.  The key to this is respecting the hierarchy but not fearing it, and not being afraid to ask why we can't do things jointly. 

Nationally, people like Jeremy Hughes are uniquely placed to advocate for joint working, by recongising the value of services like Admiral Nurses, by acknowledging no organisation or indiviudal is better than another.  We all in the end share the same common aim of wanting to help people with dementia.  As Larry Gardiner says, that's the great thing....and the problems come when we don't work well together.

On the final day there was a workshop around the use of poetry as a way of communicating and connecting.  I'll be honest....I wondered if it might be a bit fluffy, quite nice but not really something that would really help, would it?

Words are powerful, poetry is rythmic, some words can trigger memories and feelings.  Used in the right way, poetry is a really important form of self expression.  Just before the congress started, an occupational therapist I have the pleasure of working with sent me a poem she had written.  The words are those that came to her, as she was trying to place herself in the shoes of a person  with dementia, so that she might do more to help. 

The poem really moved me, and with her permission I share it here.  The words remind us why it is so important to get it right for people living with dementia.  The dementia congress was about the very same thing, and this poem seems a fitting way to conclude my own reflections.

Dementia Song by Louise Argyrokastritis, Occupational Therapist

Can you spare the time

To listen to this song?

Not frown and turn away

If I get the words wrong.

They sometimes get lost

Between my brain and my tongue.

It wasn’t always like this

When I was young.

 Can you spare the time

In your busy day

To step closer to me

Not just walk away.

A thought, a smile, a touch.

Understanding from you,

That means so much.

 I sometimes remember

What it was like…

When thoughts were clear

And memories bright,

But now it’s like someone

Turned out the light.

It’s dark and frightening,

Can’t you see?

Trying to make sense

Of your reality.

 I can’t keep pace

With your eloquent speech

Meanings dance

Just out of reach,

And just when I think

I’ve got the gist,

They disappear back

Lost in the mist.

 I don’t understand

When you turn away

From my nightmarish world

That I live in today.

You’re scared of the future

That is to come.

I’m scared of the present

And who I’ve become.

 Can you spare the time

To listen to me.

To feel someone cares

Means a lot, you see.

I may not remember

Your name or your face.

I’ll never run again

In your rat race.

 I’ll wait for a smile

To turn darkness to light.

A familiar song

That makes memories bright.

It won’t last forever.

It will fade away.

But help my journey

To be less grey.

 

 

And so the music plays........

Several months ago we arranged screenings of the documentary film Alive Inside to NHS and social care colleagues, as well as members of the public.  The aim was to use the messages about the potential power of music in making a connection with a person living with an advancing dementia.  We hoped this would help health professionals think about how to use music in the care settings in which they were based to help start interactions with people they were supporting.  We hoped that people working in the dementia care field would meet other interested colleagues, get talking to members of the public who came, and share experiences and ideas.

I know, from working alongside people with dementia and their carers as I do, that music can be emotional.  However, reconnecting with these emotions triggered by hearing a favourite song or piece of music is indeed so powerful it can actually bring someone back to reconnecting with who they are. 

Over 500 people attended the screenings, and we received hundreds of 'pledges' from people letting us know what they might do to bring more music into the lives of people living with dementia.  This included a local care home investing in personal music players for residents, and a local community choir going into local care homes to sing with people (Note the sing with / not for)  This was all about music with people with dementia, and making it personal.

At around the same time, Wishing Well Musicians in Health Care, a local progranme delivered by Rhythmix music charity had begun to work with people with dementia in hospital.  This project was supported by the Dementia Care Team at the hospital, and had a small amount of funding.

I met with Jo White from Wishing Well, and quickly came to the realisation I had to do whatever I could to support this project, and make it count.  Hospital can be a difficult place for a person with dementia, and this was something that could lighten the mood, and change the space. 

We were so moved by the impact the sessions have had on the people who have been involved, people living with dementia and those caring for them, we decided to make a film about it!  Sarah West , a local Brighton based film maker agreed to help us, and the people you see in the film were very generous in allowing their experiences to be shared.  You can watch the film here  

Projects like these can only be continued where there is funding to support them, and the sad fact is there is just not enough music playing in the lives of people with dementia, particularly those people who can no longer always rely on spoken words.

The impact of music seems to be such that it enhances wellbeing.  Music as a recognised intervention for communicating with a person with dementia, is an area that requires ongoing research and evaluation.  It may then become clear how using music in the right way helps make better outcomes for people.  As the evidence base grows, so does the case for bringing music into hospitals and care homes routinely. 

No one should be denied the opportunity to  reconnect with their own personal playlist, which is the soundtrack to our feelings and memories - The Wishing Well Project can do much more with the right support to make it happen.

Please watch the film!  Get in touch if you'd like to know more, or have an idea to share.

The Wishing Well Project Manager, Jo White, can be contacted via the Rhythmix office:
Phone: 08701 417 484 ext 4
Email: jo@rhythmixmusic.org.uk

Thanks to all who have been involved with, and supported the Wishing Well Project.

My Nursing Day: For International Nurses Day.

 

I never know what a day is going to bring.  That's one of the things that is so exciting about nursing, every single day offers something new.  I gave up trying to predict the course of a day a long time ago!  It's not easy to be a nurse at the moment, you cannot give everything to the people you look after that you would like to.  That said, I do like to give it a darn good go!  

I have written this blog post inspired by the brilliant +Teresa Chinn who is the force behind @wenurses.  I thought, in additon to tweeting, I would write some more about my own nursing day.  
 
Working with people with dementia and those who love and care for them brings a new level of unpredictability - you have to be ready for any situation at any time.  Tuesday- international nurses day was no different.  My day started with a handover in our Dementia Specialist Care Space, an acute medical ward specifically set up to look after people with dementia who need hospital care.  I'm sorry to say that many of my colleagues did not know it was international nurses day.  The day on a medical ward is always very busy, and the reality for nurses out on the wards is inescapable and the demands are high.  Taking a few minutes to appreciate that was important. 

 Colleagues in morning handover (Team Emerald)

 

On next to a meeting with colleagues in another organisation about the new Admiral Nursing Service being set up in our locality.  Brighton has around 3 and half thousand people who live with dementia.  The waiting times for memory assessment remain longer than they should be, and the community dementia care services are overwhelmed.  

The discussion was around how to use such a valuable resource as Admiral Nurses and get them to the people most in need. What can they do to help other health professionals?  Loads is the answer.  As a dementia nurse specialist - the educational aspect of the role has been one of the things that has made the biggest difference.  Every single day - I see a person with dementia and family carer who experiences needs that could be met by an Admiral Nurse.  The Prime Ministers Challenge on Dementia 2020.  does not go far enough to endorse the commissioning of Admiral Nurses or Dementia Specialist Nurses.  As long as I am working in this field, I will keep pressing for this. 

Back to the main hospital site.  A 92 year old who has been living with dementia for 5 years has been referred to me.  They have pneumonia, which has occurred several times in the last few months.  They aren't able to swallow very well any more, and food and fluid are aspirating into their lungs.  They are frail now.  They are cared for at home by a family member, who wants very much to keep doing this until the end.  I advise the ward team about anticpatory care planning, the use of a pain assessment tool that might help, and I talk to the nurses about communication on a very sensory level. 

I spend some time with the person, and arrange to meet with the family carer later that day.  They have a lot of questions, and we will need to think about the support they will need too over the coming weeks. 

Back to the office.  I make bookings for dementia education days running up to the end of the year and design a poster to advertise them.  The one day programme is always popular and getting some dates booked has been on my 'to do list' for a while now. 

A phone call from a family carer, they were worried by a call from the ward about their parent.  I listen to the concerns, and agree I will visit the ward and discuss with the ward manager to help smooth over the worries. 

Next, it's off to see another person who has been referred to us.  They are in hospital after a collapse at home.  They do not have a diagnosis of dementia but there are obvious concerns.  It is not always right to make a diagnosis of dementia in hospital, but equally it is wrong to not make a diagnosis if it is appropriate and assessments can take place sensitively.  I will support and work with the person now over the coming days.  The family carer wishes for their loved one to move into a care home and wants us to 'Get ***** in somewhere'.  

I have a conversation with the family carer and social worker about what we can do to help this person return to their own home.  It is true that the support and care that's available at home is far from perfect, but a person with dementia should be in the first instance helped to stay at home.  In the words of the person themself, 'There's no place like home'

I have to advocate for the people I support.  The hardest thing is when a person with dementia and a family carer do not agree about what is needed or they have different wishes.  The dynamics of this, the high emotions, the complexity of person and carer needs, the web of different services we might need to think about mean I need many skills.  I refer to my earlier point about the absolute need for dementia specialist nurses, but I won't go on any more I promise! 

Back to the office - I start to look at the 'Dementia Competencies' for nurses that I have been tasked with drafting - This is a big thing - deciding what nurses should be competent at in terms of dementia care.  That's a whole different blog - but I spend an hour on this. 

On to meet with the family member who is looking after a loved one as their experience of dementia nears its end.  They ask me why the swallow reflex stops working - I carefully explain.  They ask me about hospice at home care - We explore how they can help.  I explain the decision to stop Aricept and why this was done.  They ask me 'How long?'  I explain that we think their loved one may be at the last 2 or 3 months of life.  I won't lie, I always feel tears in my eyes when I have these conversations - but I think to myself that the day I don't is the day I shouldn't do this anymore.  That day hasn't come yet.

Back to the office again - It's 6 30pm now.  I update my 'Caseload List' (There are 74 people at present who are having dementia team input)  I send this to those who need to see it (My Head of nursing, bed managers, medical colleagues etc) 

I leave thinking about the family carer I have just spoken to and how sad they were.  It hurts to face losing someone you love, so I feel glad I was able to be there to help in just the smallest way.  That was the most important thing about #MyNursingDay.


 

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

The Tea and Biscuit Challenge!

 

(Chocolate biscuits and Garibaldi's!)

For the most part, a cup of tea and a biscuit is a simple comfort, a few moments respite from a busy day.  Part of my work as a dementia specialist nurse is to see a person who has been referred for an assessment for a possible dementia diagnosis.  You might call this routine.  Dementia is never routine in the way it comes blasting into someone's life, a most unwelcome guest. 

I sat down yesterday with such a person, for an initial assessment.  It was a busy day, I had been asked to see a number of people across different areas of the hospital.  This person found it a little hard to understand why I was there.  It seemed like they could not understand why I might be there, wanting to talk, ask questions.  Why am I interested?  I suppose I could have recorded a view that this person was 'Reluctant to engage' - That gets written a lot about someone with dementia.  'Withdrawn'? Maybe not, maybe it's just they need more of a reason to let you into their private world. 

A health care assistant came over to us.  'Sorry to interrupt, but I wondered, would a cup of tea help?'  A smile, 'Yes please'.  To me 'Would you like one too?'......'No, I've not long.....Actually yes, I would love one - Thank you'.  I was going to say no, thinking that I should not appear as if I had time to sit and have tea - This is a busy day after all.  Then I realised how showing the person I had the time to be with them for a few minutes more.  I wanted to do that. 

The tea arrived, with biscuits, custard creams in this case.  The person I was with, for that 'assessment' smiled, raised their cup to me in a gesture of 'Cheers'.  The person who was not seeming to want to say much spoke a little more, of their loved ones, of home, of 'feeling lost'

This is no revolutionary idea of how to engage a person in conversation about something as important as dementia, or indeed a new theory of 'engagement' with a person with dementia.  This is the realisation that this simple few moments of enjoying a cuppa with someone made the connection.  It made a reason for sitting together.  The conversation, the dialogue even, it felt more worthwhile and valid.  In a few minutes of sharing tea and biscuits, the person generously shared their memories, and also a sense of how things actually feel in their own here and now.  That's so important if we want to understand how a person we are caring for might be feeling. 

Nurses are busy people,and sadly there are still too many horror stories, of relatives going to buy teabags for loved ones, of cups of tea left to turn cold at the end of the bed table of a frail and helpless person.  I have heard ward staff telling people to 'Wait until the trolley comes, its not time for tea yet'.  

So here it is, a simple ask:  Calling all nurses.....Make a pledge to spend five minutes to have a cup of tea with someone you are caring for (You could go all out and have a biscuit!). Ask them how they are, share an interaction in those few precious minutes.  Yes, we are all busy, very busy, but this is just an ask for five minutes of time with a person who might just really appreciate it.  

It wasn't until I arrived home last night, reflecting on the events of the day, I realised this 'little moment of humanity' was in fact, largely down to that cup of tea and a custard cream.  A nurse responded to a tweet I had posted this morning, and was brave enough to suggest it might also be good for nurses too!!  So go on, make your next working day (or night) the shift that you take that five minutes.  It would be great to hear how it goes!!  Share your tea and biscuit moment, you never know what it might bring you and the people you are caring for.

Just to illustrate the point.......

(Mr Marsters enjoying the tea and biscuit challenge)

So why do we need Dementia Nurse Specialists?

Again the months have run away with me since I last posted.  I enjoyed writing the guest blog for the Chaplain's Blog series recently.  It even came back to me that one or two people enjoyed reading it!  So the compulsion to write comes once again.  

Why do we need Dementia Nurse Specialists?  Why do we indeed?  There is the Alzheimer's Society, and other groups in this sector doing vital work.  The ground level work going on in the locality I work in from dedicated dementia support workers and information from dementia adviser is invaluable.  The information available to Internet savvy carers is brilliant.  dementiachallengers.com is one excellent example.  Carer designed, carer led.  We need that. 

People living with dementia are finally starting to make their voices heard.  Dementia Mentors is an emerging forum.  Today was my first look at the site: Link here: dementiamentors.com 
Graham Browne, represents people with dementia in our organisation.  The most important thing about that, is his views are respected and truly listened to.  There can be no room for mere tokenism in the involvement of people living with dementia in the development of support for people with dementia.  Support.  There is that all important word.  Support is what it seems is still sadly lacking in too many instances.  I'm happy to be told by people living with dementia what they want.  As a nurse I am also an advocate to those I am so lucky to support and help,  

I asked the question today 'Why do we need Dementia Specialist Nurses?' via Twitter.  Hardly a scientific or controlled data collection exercise of course, but a sense of some initial answers in the here and now.  Ken Clasper was kind enough to answer.  He lives with dementia so this is an expert view.(https://twitter.com/ken_kenc)  He said 'people who really understand what people are going through and are caring and understanding.' I completely agree. Of course this applies to all who help people with dementia - but lets not forget dementia specialist nurses. Lets make a very clear case as to why people with dementia need what they can offer.

Person centred care, needs led care, person focused care.  All these terms essentially mean that care and support is provided in a way that responds to an individuals needs and feelings.  Tom Kitwood knew this in 1997 - 'It is not enough to simply diagnose a person with dementia, and then leave them to their own devices'.  This is absolutely true, and the book from which this came: 'Dementia Reconsidered' continues to be very relevant today.  All these terms can be found in glossy care home brochures, in training manuals etc.  We in the NHS talk of person centred care all the time.  Why? Because it's the kind of care we would all surely want.  

If you start to think more deeply about the meaning behind person centred care, You start to realise it is more than an approach, more than a ' model of care'.  Now, we all know that there is a case not to over -medicalise dementia, not to confine it to to being the core business of health professionals.  Indeed we should not, but that said, it is very important that people have access to a dementia specialist nurse should this be needed.  This should be as PART of other support and resources offered.

Dementia, of any type is by nature a health condition that will progress over time.  Living with dementia means coming to terms with a diagnosis, understanding the lifestyle changes you may need to make, and learning to cope with and manage a massive range of symptoms and changes to your mind and body.  You are still you, but you now have a long term health condition.  There are more than 3000 Macmillan Nurses for people living with cancer in the UK (Macmillan.org.uk).  There are no where near this number of nurses dedicated to helping people with Dementia.  Yes, it is a blunt argument, and of course the numbers of people with cancer are higher.  The Admiral Nurse role, dedicated to helping people living with dementia through long term support for their carers is a model focused on relationship based, anticipatory care and support.  There are 127 Admiral Nurses in the UK (www.dementiauk.org)

The Admiral Nurse Model is perhaps the most famous of ways of working.  But I would suggest that most people have heard of Macmillan Nurses - I'm often asked 'What's that?', when I first mention Admiral Nursing.  Dementia UK are developing the role, and the impact of Admiral Nurses cannot be overlooked - Th,ere are a number of carers who speak publicly about the benefits.  There are also carers who speak publicly about their sadness at not having been able to access an Admiral Nurse.  Sally Ann Marciano is a vocal advocate, after her father's experiences of dementia. (@nursemaiden)

In case you hadn't noticed, I am a dementia nurse specialist.  I'm hospital based, but I'm able to work closely and directly with people with dementia. I am part of a small team.  We offer a range of support and promote person centred care,  You can read more about what we do here:  We wrote a report about it!!  http://www.kssahsn.net/images/pdfs/dementia/DementiaCollaberative6March14/The%20impact%20of%20the%20Dementia%20Champion%20Role%20at%20BSUH%20.pdf

There are other dementia nurse specialists emerging above the metaphorical parapet.  Valerie Freestone is one of them.  You can find her on Twitter as @dementia_nurse.  Val was also quite quick to respond to my question.  She said 'We have a quiet passion and vocation to make things better for all touched by dementia.'  This struck a chord with me.  Not because I am quiet! It struck a chord because it is that is possibly one reason why dementia nursing is so 'undersold'  I do know there are dedicated, passionate dementia nurses out there.  They are quietly advocating, gently disrupting less person focused ways of caring, and giving invaluable support.  I'm pleased that Val was recently listed in the HSJ Inspirational women list. How fantastic to see a dementia nurse acknowledged in that list.  There are many many community mental health nurses helping people with dementia.  They have very large numbers of people to see and look after.  Too many some might argue.  A specialist dementia nurse could step in where the need is most intense. 

Dementia Nursing IS a skilled specialism.  During a recent interaction with a family carer, I reflected afterwards how, during that interaction, I had to call on many of those skills.  I listened, I assessed, I helped unpick each and every difficulty.  I responded with empathy where it was needed, words where they were invited, silence when it felt right.  I provided answers to questions, and helped to give clarity to a situation that felt anything but clear.  To do this, meant using a range of nursing skills, and knowing a thing or two about dementia.  I don't live with dementia, so I cannot call myself an expert.  However I do know and understand very well the needs, that the people I look after present with.  I can laugh and cry with them, and I can use my knowledge and skills to help change a situation for a person with dementia. 

A dementia specialist nurse can teach the essence of person centred care.  You can share with others how to be led by the person with dementia, to feel your way to the words you need to say when they ask for a long deceased relative.  You can work with a person with dementia to work out what that unmet need is.  Education as a key part of the nurse specialist role is evident should you carry out a quick search of the literature.

'Dementia Nurses are expensive, and the model is unwieldy'.  This has been said, to me, and no doubt to others.  Dementia Nurses cost no more than diabetes nurse specialists, no more than Macmillan Nurses, no more than heart failure nurses.  I have not heard anyone say recently that we do not need those specialisms.  The instinctive wish for many nurses to be holistic and give care in this way is an opportunity to take the 'medicalisation' out of dementia health care.

Wider access to dementia specialist nursing may help to avert a crisis, help a person to come to terms with a diagnosis, it may help someone find the support they need to go on living.  A dementia nurse can help guide the way along a road that can feel uncertain.  They can offer in depth knowledge and skills that mean the right care is planned.  Needs can be assessed fully. 

 It feels as though I have merely scratched the surface of possible answers to this question, but I would venture to suggest that the answer is 'YES' - We do need dementia specialist nurses.  We need all those with Val's 'Quiet passion' to articulate it in the form of evidence of the good outcomes a dementia nurse specialist can help to achieve.  

The recent All Party Parliamentary Group on dementia document 'Building on the national dementia strategy' did not make mention of the need for dementia specialist nursing care in its recommendations.  I hope that this changes soon.  

Thanks to @Aspirantdiva; +Ken Clasper; @alisonleary1; @JohnMinihan; @SheelaghMachin and to all who offered thoughts and insights.