Dementia Awareness by Julie Garton

Dementia Awareness Week runs this year from 4 – 10 June. There are lots of events across the region supported by a wide range of individuals and organisations. This year, I’ll be promoting the use of a document called ‘This Is Me’ within acute hospitals and asking Dementia Champions and other colleagues across NHS Dumfries & Galloway settings to join in.

When someone with dementia comes into hospital, a care home or is receiving care at home, they and their family/friends may be asked if they have a ‘This is Me’ document.

What Is ‘This Is Me’?

‘This Is Me’ is intended for use by anybody with dementia, delirium or other communication impairment.

It aims to provide important personal information about the person from their perspective and those who know them best (family/caregiver) to help enhance the care and support given when the person is in an unfamiliar environment.  It’s crucial that we understand the person as an individual and take their personal history into account, helping us to communicate and engage with the person, which in turn can help us to prevent/alleviate stress and distress.

What are the benefits of ‘This Is Me’?

For the person, their families/caregivers – if the person with dementia has memory and/or communication problems, then a ‘This Is Me’ guides and supports staff to provide care in a way that respects the person’s choices, preferences and routines. ‘This Is Me’ can be a great opportunity to ask and find out information, that as family members we may not know – provoking good memories and conversation. In addition, a ‘This Is Me’ or similar may reassure people with dementia and their caregivers that we see behind the dementia and respect that person.

For staff – for professionals, it can help us deliver person centred care, and importantly, reduce the times we ask for the same information – the detective work has already been done.

Where can ‘This Is Me’ be used?

‘This Is Me’ can be used anywhere, in hospital, care homes, in primary care, respite care and is offered during Post Diagnostic Support.

When should it be completed?

‘This is Me’ always offered during Post Diagnostic Support but can be completed at any time.

Are there issues around confidentiality/sharing this document?

The document is the property of the person and/or their main care giver – it is not a clinical document and does not belong to any professional or service, the person/care giver decides what information is included and shared.

Once completed, the document should be kept in a place that is easily accessible for those providing care, for example, at the bedside, in a care plan. The information can help staff understand the persons’ baseline abilities, lifestyle, routines, likes/dislikes and gives great opportunities for conversation and engaging with the person.

What happens to the form if/when the person is discharged or transferred?

As it belongs to the person, it should go with them on discharge/transfer, and it’s also useful to check with the person and /or their main carer that the information remains up to date and relevant.

Living Well with Dementia

It’s important to understand that many people are able to live well with dementia, leading active and fulfilling lives for years after they first experience difficulties and receive a diagnosis, but coming into hospital can be daunting for all of us, and for people with dementia , this can be a frightening experience.

Whilst these days, a person with dementia may only be in hospital for a short time, how we communicate and support them will have an influence on the impact of the whole care experience and how quickly they can return home. We know that older people with dementia are more likely to be discharged to a care home than older people without dementia, have longer hospital stays and experience more falls and pressure ulcers.

We know that in Scotland around 93,000 people are living with dementia and we think around 25% of all acute hospital beds are occupied by people with dementia (Alzheimer’s Research UK, 2018), yet mostly, people arrive into our services without a document such as This is Me even if they have one at home.

“This is Me gives me golden information about an individual. The nuggets of information are priceless in helping to smooth the way to getting to know the person behind the dementia”

Gillian, Staff Nurse

‘This Is Me’ is just one of a range of tools that can support centred care, Getting to Know Me, Life Story work and a wide range of personal profile tools are available, many online, helping professionals to see the person, not just the patient.

I ‘m keen to hear about your experience/s of using This Is Me in your workplace – please contact me or, if  you would like more information about This is Me or would like a copy, please contact me at jgarton@nhs.net or 01387 246981.

Julie Garton, Alzheimer Scotland Dementia Nurse Consultant

Cathy’s Journey by Amy Conley

Friday night, admissions unit is where we first met Cathy……

I say met; we heard her before we met her – Cathy was shouting out, incoherent, clearly agitated. In her room, we found a tiny lady lost in a huge nightie, scrunched up on the bed, clinging onto the bedrail.  Cathy was 95, frightened and distressed.

Cathy had been transferred from another hospital, for assessment of pain.  It was impossible to know if Cathy was in pain or not – she couldn’t tell us.

We looked at her notes…

With a diagnosis of dementia and arthritis, Cathy had been living fairly independently with carer support, hadn’t been in hospital for some years.

A few weeks before, carers worried that Cathy may have fallen, an ambulance was called.  Cathy went to ED – no broken bones, but concern that Cathy couldn’t mobilise safely resulted in admission.

Over the next 6 weeks, Cathy was moved seven times between three different hospitals, from community to acute and back; staff worried about pain, falls and possible injuries, worried they were missing something, worried that more tests were needed…

Over this time, staff reported increasing difficulty with Cathy’s behaviours and confusion; she was distressed, agitated and uncooperative. Other patients were frightened.  Staff felt unable to manage.  Cathy was prescribed sedation.

Cathy by now was very confused, unable to communicate what she needed, not eating, not drinking.  She had become incontinent.

Back to Friday night…….

The sight of Cathy was heart-breaking; crying out, unable to tell us why, unable to understand what we were doing. She was dehydrated, in pain and encumbered by various medical contraptions.

We talked to Cathy’s family.  We decided that Cathy didn’t need any more interventions or hospital moves.  We did our best and made her comfortable.

Cathy died six days later…

 

Cathy, like many people admitted to hospital, was frail; she was frail before she came to hospital that first time.

If we had recognised her frailty at the hospital’s front door and intervened, well, perhaps Cathy’s story might have been different – different conversations, different interventions, different decisions and different plans made.

We talk a lot about frailty but it’s not always easy to explain or to understand.  Frailty is one of those words that get bandied about but what do we mean when we call someone frail?

The dictionary definition is “the condition of being weak and delicate”, something we all feel at times, but not really helpful in identifying frailty in our patients.

Within medicine, after years of vagueness and uncertainty, we have defined frailty as “the reduced ability to withstand illness without loss of function”.

 So……

A minor illness or injury, that would be no more than troublesome to you or I, affects a frail person more profoundly, leaving them struggling to walk, to wash or to dress, to eat or to communicate.

In reality though, how do we recognise the frail patient?  Does it matter?  Does it make any difference?

Age alone does not make people frail – people don’t become frail simply because they live too long.  Frailty doesn’t come with a diagnostic test, but there are signs we can look for – older people, with cognitive problems, mobility problems or functional problems, people on many medications or who live in care homes.  People who present to us with falls, incontinence or confusion.

“Frailty is everyone’s business”

The population is getting older and frailer, particularly here in Dumfries and Galloway.

Older, frail people have higher demands on health and social care services and more unplanned hospital admissions.  Once admitted, frail people are more susceptible to hospital-acquired infections, delirium, nutritional problems, falls and skincare issues.

In comparison to other patients, frail elderly patients are more likely to have prolonged hospital stays, to lose their mobility and functional abilities; they are more likely to be admitted to residential care, more likely to die.

I am a geriatrician.  I’m not at the glamorous end of medicine and I don’t have a bag full of fancy equipment, tests and treatments.  But within our medical specialty, we do have one intervention that has been shown to improve outcomes for the frail elderly –Comprehensive Geriatric Assessment

CGA means that frail older people are much more likely to be well and living at home 12 months after admission, and much less likely to be admitted to care homes or to die within those twelve months.

CGA is a multidisciplinary assessment of a patient and their physical, psychological and functional needs.  It allows us to develop a personalised, holistic and integrated plan for that patient’s care, now and in the future.  We think about how patients walk, talk, eat, drink, see, hear, think, remember, socialise, mobilise, and take their medications.  We think about how we can make all of those things better and easier for frail elderly people and their carers and families.

We all need to understand and recognise frailty.  Think about it, see it and talk about it, and allow a person’s frailty to influence decisions for their care and future.

Over 18 months we are working collaboratively with other health boards and Health Improvement Scotland to improve recognition of frailty at the front door.

Hopefully, if we get it right we can influence a better outcome, one that recognises and considers the specialist needs of our frail elderly people, one that supports them to continue to live happily and safely in a place that they can call home…

 

“We’ve put more effort into helping folks reach old age than into helping them enjoy it…”

Frank A. Clark, American Politician 1860-1936

 

If you have an interest in frailty and want more information or to become involved in our project please contact   amy.conley@nhs.net or lorna.carr2@nhs.net

Amy Conley is a Consultant in Geriatric Medicine at Dumfries and Galloway Royal Infirmary.

 

 

 

 

To Err Is Human by Maureen Stevenson

‘To Err Is Human’, to cover it up or fail to learn unforgiveable

It is now nearly 20 years since the Institute of Medicines (IOM) seminal work ‘To Err is Human: Building a Safer Health System’, raised our collective conscience about the scale of harm in healthcare and that the majority of factors that give rise to error are systemic in nature.

As we take our first tentative steps into 2017 and begin to think about how we might improve our work, work off those excess pounds and gain a new level of fitness and wellbeing (or maybe that’s just me!) it is important to reflect what has been achieved and what we will take forward into 2017:

• A new Hospital
• Integration of Health and Social Care
• Development of a local Quality Improvement Hub

Whilst these might be strategic in nature there are many equally worthy service, team and individual achievements to be proud of, each one of them contributing to the wellbeing of many thousands of people, families and communities.

On a personal note I was very humbled to be able to accompany my Mum to an Alzheimer’s Scotland Christmas Tea Dance. In my head I had so many other callings on my time and attention, I rushed from a meeting straight into ‘the hokey cokey’ to truly learn ‘what it’s all about’ – people, compassion, caring and having fun. Wouldn’t it be lovely to retain that special feeling all year and to remember why we do the work that we do?

My blog today is about Human Factors. Human Factors (Ergonomics) i.e. the study of human activity (inside and outside of work). Its purpose as a scientific discipline is to enhance wellbeing and performance of individuals and organisations. The key principles are the interactions between you and your environment both inside and outside of work and the tools and technologies you use.

In my role as Patient Safety and Improvement Manager I have the great privilege of supporting individuals and teams to develop the capability to improve the quality, the safety and effectiveness of care. However, I also oversee our adverse event and learning systems which all too often highlight the failings in our systems and in our interactions with those sometimes very complex systems. Human Factors and ergonomics offers an opportunity for us to understand the interactions of humans working within often imperfect and messy systems. People who most of the time make the correct choices and decisions in difficult situations with incomplete information to help keep patients safe.

New thinking suggests that we should look at the actions and decisions that help keep patients safe and not only those that result in harm. If we were to support teams to understand the thinking and the behaviours that keep people safe we might enable a more resilient workforce able to vary their response to challenging situations.

Often the design inputs and processes related to the workplace fail to adequately take account of human abilities and characteristics, making it inevitable that failures will happen (and happen again). We know that many patient safety incidents across all health and social care sectors are directly related to a lack of attention to Human Factors issues such as the design of everyday work tasks, processes & procedures; equipment and technologies, organisation of work and working environments.

We would all agree that safe care delivered to a high standard is what we look for in a health and social care setting, and most of the time we achieve just that. Tremendous gains have been made in eliminating infections from our Intensive Care Units by standardising work practices and improving team communication. Improvements in Medicines Reconciliation have been seen across Primary and Secondary Care and work is currently underway to reduce pressure ulcers across our care system but how can we simultaneously improve efficiency and effectiveness and care that is delivered in a way that considers the needs of the recipient and the caregiver. Might a review of Human Factors help?

Human Factors (Ergonomics) can contribute to achieving this as it involves learning about our characteristics as humans (e.g. our physical size or strength, how we think and how we remember things), and using that understanding to improve our well-being and performance through the type of work we do, the tools and equipment we procure to do it and who we do it with.

The environment, the culture, our communication processes and leadership impact on system performance as they impact on how people perform. Understanding how improvements in one part of our system might be spread elsewhere will require careful attention to all of these factors.

To achieve a culture that is just and fair we have to take account of Human Factors, we need to understand what safe, effective person centred care looks like and be able to replicate the conditions that enable it to survive and thrive.

I’d like everyone’s Mum to experience the joy of care, apparently effortlessly given that accounted for her health, her care and her emotional needs. I’d like to extend a huge thank you to all the health and care staff and volunteers who together make that possible in very difficult circumstances.

My ambition for the year ahead is for us to become more proactive in our pursuit of safety , to understand what we might learn from when things work well and how that might impact on how we support individuals and teams to learn and continually improve. Safety II as this shift is being referred to will require a shift in our thinking and in how we behave. The table below highlights how we might begin that shift from Safety I to Safety II.

As humans we bring our whole self to work, so let us use all of our resources and resourcefulness to enhance the safety and the experience of care. Nothing is more satisfying than bringing joy to those you work with whether they be your co workers or the patients and their families you care for.

Maureen Stevenson is the Patient Safety & Improvement Manager at NHS D&G

 

Losing Grace by Robyn Langton

“A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.”

Who remembers that mad feeling of excitement when you were told as a child that you were going to stay with Granny and Papa? As a child growing up, I was very fortunate to have wonderful grandparents around me to support my parents, provide me with unconditional love – and lots of sweeties on the sly. Along the way, as is life, I have lost all of my beloved grandparents, my Granny Grace being the last, saying goodbye at the age of 77. Some people are not lucky enough to know their grandparents, however more and more are able to enjoy them for longer as demography changes and people are living longer. My Granny was incredibly independent, never relying on health or social care apart from the odd trip to her GP and was still going swimming twice a week and ‘raking around’ in her 70’s. Grace was one of life’s treasures, incredibly sweet and kind to everyone around her.

In summer 2010, my Granny began to change and not quite seem herself. Living just up the road from us, she regularly popped in to visit (and secretly do some of my chores Mum had left me) and I distinctly remember one day when she left, she lost her balance on the steps and I watched as she slowly made her way back up the street. Another incident happened when she fell backwards over into the bath (thankfully empty!). These incidents seemed to be happening more and more often and Grace consulted her GP several times; without any diagnosis or medication being prescribed.

It got to the point that my Granny’s loss of vision and mobility was so severe that it made it unsafe for her to be at home. When the family took her up to the hospital to get checked over, Grace was almost blind and needed to use walking sticks. My Granny was admitted to the ward in September. Lying in her hospital bed she was no longer the chatty woman that went out of her way to help everyone else, she was in desperate need of support herself to get changed, move around, go to the toilet, and she had to be fed. A very fit and healthy lady had suddenly turned into a frail, dependent ‘patient’ at DGRI in Dumfries and Galloway. It was terrifying watching the person we knew and loved so much slip away so quickly – we were losing our Grace along the way. Eventually we were told that Grace had developed a neurological condition and they thought this could be something called Creutzfeldt-Jakob disease (CJD) but couldn’t be sure. A specialist team from the National CJD Unit in Edinburgh came down to undertake tests, and confirmed that my Granny had sporadic CJD.  My Granny died less than 4 months after first displaying the symptoms, in November 2010.

CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, causing 1-2 deaths per million worldwide every year. I always said my Granny was always one in a million.

Symptoms of CJD include:

• loss of intellect and memory
• change in personality
• loss of balance and co-ordination
• slurred speech
• visual disturbance and blindness
• abnormal jerking movements
• progressive loss of brain function and mobility

It was a difficult and distressing time for the family, as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due to it being so uncommon. This was also not helped by the stigma attached to this disease.

There are various strands of CJD. CJD is caused by an abnormal protein, called prion, which contaminates the nervous system. Variant CJD may have been passed to humans through beef products infected with bovine spongiform encephalopathy (BSE). However, there are four different types of CJD and infection is not always the cause of this condition. For example, the cause of sporadic CJD, which accounts for 85% of all CJD cases (and the type my Granny had) still remains unknown.

The world is an amazing and fascinating place, however it can also be filled with lots of unknowns, and some scary illnesses. We need to make more of the unknowns known; and support the fantastic work of all our world researchers out there spending their days doing exactly this.

Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly turned into a nightmare. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so people and their families are more supported and informed and can have an agreed care plan in place.

Five years after my Granny died, I decided in November 2015 that I was ready to start talking about the disease and raise awareness amongst health professionals and the general public. Having only ever run as far as 5K, I decided to take the plunge and sign up for the Dumfries Half Marathon. I have been training for the past few months in preparation for the run on Sunday 25^th September to run 13.1 miles. It has been a bit of a bumpy ride, with several trips to Physiotherapy, Podiatry and Sports Therapy, however I figure if Grace could swim 50 lengths of Dumfries swimming pool twice a week at 75 years old, this run will be a doddle.

Any support would be greatly appreciated. Thank you.

www.justgiving.com/robyn-langton
Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd

http://www.nhs.uk/Conditions/Creutzfeldt-Jakob-disease/Pages/Introduction.aspx

Robyn Langton is an Integration Support Officer for NHS Dumfries and Galloway

“One Small Step for Dumfries and Galloway, one giant leap for Scotland” by Wendy Chambers

The occupational therapy mental health service is stepping forward this week and sharing their implementation of the Home Based Memory Rehabilitation (HBMR) programme for people with dementia at a National event in Edinburgh.

The event “Connecting People: Connecting Support” is showcasing occupational therapists contribution to dementia post diagnostic support, with the Home Based Memory Rehab programme centre stage, primed for a roll out across 5 other Health Boards in Scotland in the coming months.

Local occupational therapy staff Wendy Chambers and Alison McKean will be presenting during the morning live link session, and also leading along with Lynda Forrest in the afternoon workshop with the 5 Health Boards. The aim is for consistency of delivery for this evidence based occupational therapy intervention across Scotland, contributing to the developing evidence base and promoting best practice in post diagnostic dementia care

The event is being live-streamed and can be watched again at the following link

• video3uk.com/actionondementia
• Click on the EventCast Tab and follow the link called “Connecting People: Connecting Support. Home Based Memory Rehabilitation”

Speakers in the morning also include Mary McGrath, Advanced Clinical Specialist Occupational Therapist from Belfast; current work in Scotland with HBMR is firmly based on Mary’s original research (McGrath and Passmore 2009)

A video of servicer user feedback and opinion of the HBMR programme is also being shown on this day and a link to this can be found at

• https://www.youtube.com/watch?v=VNg5HrFi4_M

This work is also being showcased on the ‘Let’s Talk About Dementia’ Blog:

• www.alzscot.org/talking_dementia

Wendy Chambers is an Occupational Therapy Team Lead at NHS Dumfries and Galloway

 

 

 

 

 

Changes in place of death in Dumfries and Galloway By Prof David Clark

When I first came to work in Dumfries and Galloway, a rural area in the south west of Scotland, I began to explore the local healthcare scene and was told by several people that our region had a high rate of home deaths. Some reported that everyone wishing to die at home was able to do so. One person told me with confidence that the rates of home death were increasing here, against the general pattern elsewhere.

Of course, the researcher in me was interested in such claims and in due course it proved possible, with colleagues,  to conduct a study to shed more light on where people die in south west Scotland. The results of that work have just been published in the journal Palliative Medicine and can be read in full on open access to anyone.

The paper contains a lot of detail and some of it may be open to differing interpretations. But it sheds some light on the various statements made by my informants and is a warning to those who play fast and loose with their claims.

What we found

We examined 19,697 deaths of residents of Dumfries and Galloway occurring over the 11 years from 2000-2010. In that whole period, home deaths averaged 26.5% – above the average for the United Kingdom.

But we also found that the proportion of home deaths was in decline. Fewer people in Dumfries and Galloway died in their own home in 2010 (23.2%) than had done so in 2000 (29.6%).

Now in England and Wales between 2004 and 2010 the proportion of home deaths rose – from 18% to 21%.  But still to a level lower than in south west Scotland.

For me, a fascinating finding of our study was that between 2007 (when new recording procedures were introduced) and 2010 an increasing proportion of deaths occurred in the eight bed specialist palliative care unit of our main acute hospital. The proportion of all deaths in the region that took place here went up from 6% to 11%.

Compare that to a recent increase in England and Wales in the proportion of deaths occurring in hospice: from 4% to 6%.

We also found that where a person dies is in some measure determined by the cause of their death.

People with dementia and those who had experienced a stroke were very unlikely to die at home, and much more likely to do so in a care home. Almost 44% of people dying with heart disease did so at home but an almost equal proportion (41%) died in hospital – something worth investigating further. Most cancer patients (52%) died in hospital but almost 28% died at home.

Where next?

We have shown that the likelihood of dying at home is reducing in Dumfries and Galloway. Elsewhere that trend seems to be ‘bottoming out’.

Will we observe the same thing for the period after 2010? And what would the results be like if we did this study for the whole of Scotland?

Researchers are rarely satisfied with their results. The urge to better explain and extend the range of our studies is ever-present. But findings such as those from this new study in Dumfries and Galloway can upset prevailing assumptions. They give us a chance to look at trends and their causes. And if we are advocating for more specialist palliative care resources they show clear evidence of an increasing workload.

David Clark is Head of the School of Interdisciplinary Studies, University of Glasgow Dumfries Campus and a Wellcome Trust Senior Investigator.

Predictors of place of death in South West Scotland 2000–2010: Retrospective cohort study, Heather Black, Craig Waugh, Rosalia Munoz-Arroyo, Andrew Carnon, Ananda Allan, David Clark, Fiona Graham, and Christopher Isles. Palliative Medicine, 1-8, February 2016 (currently available online until 23 February 2016)

In the media:

• Proportion of home deaths falls in South-West Scotland, University of Glasgow news, 9 February 2016
• Palliative care study finds decline in number of people dying at home despite wishes, The Herald, 9 February 2016
• Deaths at home falling despite most wishing to end lives there, Lizzy Buchan, The Scotsman, 9 February 2016
• David Clark interview on Good Morning Scotland, BBC Radio Scotland, 0745 9 February 2016 (available online until 10 March 2016)
• Study finds fall in proportion of home deaths in south west Scotland, Tom Moran, ehospiceUK, 9 February 2016
• Home death figures down, Sharon Liptrott, Dumfries and Galloway Standard, p9, 11 February 2016
• Drop in deaths at home, Dumfries Courier, p15, 12 February 2016

(media reports updated until 17 February 2016)

Reproduced from the blog http://endoflifestudies.academicblogs.co.uk/changes-in-place-of-death-in-dumfries-and-galloway/

The art of dying well by Margaret McCartney

Do we want to live as long as modern medicine allows us, or only so long as life is sweet?

Death is our only shared destiny, but we are in a new era; it’s not unusual to have 70-year-olds looking after a 90-year-old parent. A few years ago we had to reorganise the shelving in the general practice where I work in order to accommodate the notes of our octogenarians and nonagenarians. In 1917, King George V sent out 24 messages to people having a 100th birthday. In 2011, the Queen sent 9,736.

This is worth celebrating. Just before Christmas, I was languishing in a long queue at the Post Office where a 93- and a 94-year-old were holding court, debating the standards of humour in the greetings cards display to such uproar that the postmistress had to pause to wipe tears of laughter away. Age does not mean a loss of fun, vivacity, or pleasure in living.

But age is still the most potent risk factor for death, and many older people at the end of life have its quality impaired by loneliness and, frankly, too much medicine. If we want good living right up until we die, we should be examining what makes it good — and what stops it being so.

At the heart of the problem is the difficulty in predicting death. There is good evidence that doctors overestimate how long people who are known to be terminally ill will survive: we have libraries stuffed with research papers, but no crystal ball. This matters because medicine is often conflicted over the question of preserving life at the cost of its quality. Treatments in hospital might reduce the size of a cancer, but prevent the patient from going home, where she’d prefer to be. Medication for the heart might cause fatigue or dizziness but give extra weeks or months of life. But if this means less walking and independence, is it worth it?

Death is inevitable, but frequently seen as an inadequacy in medicine or treatment. Harpal Kumar, the chief executive of Cancer Research UK, said on the radio recently that his aim was to ensure that no one died of cancer any more. But we are still going to die, so what are we to die of? Is every death to be fought back with all of medicine’s might, and to be always considered its failure?

Surprisingly, in older people, frailty is a bigger risk factor for death than cancer, organ failure or dementia. Frailty is a relatively new concept in medicine, though William Shakespeare described it well in As You Like It:

the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side,
His youthful hose well sav’d a world too wide
For his shrunk shank; and his big manly voice,
Turning again towards childish treble, pipes
And whistles in his sound

Frailty is often rapidly recognisable: low levels of activity, a loss in muscle mass, weakness, falls and easy tiredness. The months and weeks before death in an older person are frequently characterised by a series of crises, caused by something as seemingly small as a urine infection or a trip. But the background of frailty means less recovery each time, and a slow, or stepwise decline. If ageing is the cause of frailty, how can we treat it? Medicine has moved into a new era of riskfactorology. We are no longer concerned about people who have a disease, but people who have a risk factor for a disease. We search for blood pressure or cholesterol levels which are deemed high enough to then lower, to try to prevent heart attacks or strokes. We look for bone-thinning, in order to prescribe medicines to attempt to strengthen the bones and prevent a fracture; we offer flu vaccination to everyone over the age of 65.

All this results in more medicines being prescribed and taken. This might sound so reasonable that the mechanism GPs work to (monetary carrots for adhering to targets and shameful sticks whipped out by the Care Quality Commission when we fail to reach them) seems OK. But our riskfactorology results are for the risks and benefits for populations, not individuals, and the result is thousands of people being prescribed medication that they will never benefit from.

Take the medications designed to prevent osteoporosis, tablets called bisphosphonates, such as alendronic acid. These are taken by over a million people in the UK, usually once a week. Ideally, they prevent hip fractures or collapses of the spine. Hip fractures in frail older people can precipitate death, and are to be taken seriously. However, these medications usually don’t work. For example, the independent Cochrane Collaboration has found that for women with low bone density, or who have already had a fracture in the spine, long-term use of alendronic acid can cut the risk of hip fracture from two to one in 100. This is only a small reduction, although it can be described as a ‘halving’ of risk.

What about side effects? Some women will get none, others will feel sick and nauseated. Some women dread the day they take the tablet and feel they have to write it off. Some will consider that a price worth paying, others will not.

However, people aged over 65 are on an average of two drugs, and 10 per cent are taking five or more. In medical terms, this is an alarm signal — is this combination of medicines really doing more good than harm? Older people are chronically under-represented in clinical trials. So there might be trial data to show that a drug works pretty well in a 40-year-old — but will it have just the same effect in an 85-year-old? Our kidneys and liver — which metabolise our medication — tend to work less well as we age, meaning that standard doses can become toxic. And the drugs can interact with each other. Our nervous system is partly composed of unconscious nerves, controlling our heart rate, digestive systems and blood pressure. Many drugs have an effect on these nerves — from antidepressants such as trazadone, to medicine for diarrhoea like loperamide, to oxybutynin, for the bladder, and many antihistamines. The effect can be cumulative, risking falls and memory problems.

It’s this constant play of harm versus advantage, pro versus con, that characterises much medicine, taking in Shakespeare’s sixth and, then, seventh stages of life. Frailty is a risk factor for death, but most frail patients will not die that year. As a doctor trying to decide which prescriptions are worthwhile and which are not, I’m also keen that I try to understand what matters to patients. Is this side-effect worth it? Is this medication keeping you well or causing you problems?

Medicine can do great things — joint replacements can add life to years, heart attacks are treated with swift declogging of arteries, HIV can be managed long-term. But life through a medical prism is prone to give a medical answer to social problems. Loneliness is one of the biggest. Up to 16 per cent of our elders describe themselves as lonely. I’ve come across patients where the only conversation they’ve had all week has been with the doctor. People who are lonely are more likely to use NHS services, and loneliness is a risk factor for depression and earlier death, as big a risk factor as obesity or high blood pressure. Research points towards social interaction being protective against memory loss. Good health at the end of life is not just about medicine; it is about social activity and networks.

So where do doctors fit in? Just before Christmas there was a sudden (and, sadly for me, temporary) lull in the demand for appointments. Instead of the usual ten, I could spend 20 minutes with just one patient. I had a joyous couple of days, because I could look away from the computer, relax and listen without the constant narking pressure of running late. Suddenly, there was time to talk about what really mattered. With this illness, what are you thinking about the future? Is there anything that is worrying you? What are you enjoying just now? What do you hope for? Unleashed from the tickbox demands of the contract we GPs work to, general practice is fascinating, uplifting and profound in its humanity. Listen, and people talk.

It’s clear from the research that the vast majority of people with life-limiting conditions want their healthcare professionals to play it straight — most people want honesty. This does not mean that people should be told brutal truths in one unexpected sitting. It does, though, mean that talking about death and what quality of life means — for you — should be an unfolding, commonplace conversation.

This is hard, not just because it can feel awkward or upsetting. But the problem is plain. Medicine has a habit of almost unstoppable escalation. One treatment leads to a side effect, which can lead to another treatment, which can lead to another side effect: we can end up chasing tiny odds of benefit while the problem, staring us in the face, is that death is going to happen at some point no matter what we do. Too much medicine is capable of changing a peaceful death into a medical battleground, a peaceful death surrounded by family at home into a death in the bright lights of intensive care. Stepping off the medical escalator may take courage, not just for patients and families but also for doctors. Until we value a good death as much as we value a good life, we will fail to serve people well at the end.

This article was published in The Spectator on October 24th 2015. The original version can be found at http://www.spectator.co.uk/2015/10/the-art-of-dying-well/

Dr Margaret McCartney is a GP in Glasgow and writes regularly for the BMJ and other publications.

 

Top of the Pops (My Top Ten) by @gbhaining

This blog is to celebrate the fact that after twenty seven years I have taken the life changing decision to retire from NHS Dumfries and Galloway. I have had the honour and privilege of being the Alzheimer Scotland Dementia Nurse Consultant for the past two and a half years.

This is an effort to describe some of the work undertaken during my time as nurse consultant and I had an idea that I’d try to link it to popular songs thus the rather dated Top of the Pops theme.

I must say that I’ve gone with the titles in the hope that some of the lyrics reflect my comments.

So let’s begin. 

10. Another Brick in the Wall (Pink Floyd). I was delighted to be appointed as Alzheimer Scotland Dementia Nurse Consultant for NHS Dumfries and Galloway in December 2012. This was a new post and with the support of others I pretty much developed and evolved the post in keeping with the national standards, strategies and drivers. I believe I have built the foundations required to take this agenda forward.

 

9. We are the Champions (Queen). In the past two and a half years I have had the absolute privilege of leading and supporting Dumfries and Galloway’s Dementia Champions. I have to say they work extremely hard advocating the best care for people with dementia when they have to be admitted to our acute and community hospitals. This is one of the pieces of work that I am extremely proud of and I want to thank each and every one of them for being so motivated, enthusiastic and most of all for engaging with me.

 

8. Long and Winding Road (The Beatles).This journey has been challenging however I have built up some excellent professional relationships. I have flown the flag for dementia and I truly believe there is a far greater understanding of the needs of this group of people. I believe we have turned some of the corners and I’m sure as an organisation we will continue to do so.

 

7. Feeling Good (Nina Simone).I think that there is a great willingness to work together to make services person centred and to deliver care at the right time and in the right place. This fills me with pride and optimism.

 

6. Funny How Time Slips Away (Willie Nelson).Personally it feels like yesterday I was starting my nurse training and trying to figure out how to put my nurses’ hat together! I’ve had a fantastic career and learnt so much over the years. I’ve worked with some fantastic people who’ve encouraged, nurtured and seen my potential. That’s something I will be eternally grateful for. We all need to do this and help people develop and reach their maximum potential.

 

5. 9-5 (Dolly Parton). Although it should read 8.30am – 5pm there will be no more “Working 9-5” for me!

 

4. 40 Hour Week (Alabama). Time now to rest, relax and enjoy my family life, catch up with friends and find time for all those things I’ve always put off.

 

3. It’s Five o’clock somewhere (Alan Jackson and Jimmy Buffet). Self explanatory I think!

 

2. When All Is Said and Done (ABBA).I hope that I have left the beginnings of a legacy for people living with dementia, their families and carers and that they will recognise a change as this work continues. We never know the time when we, our families and friends will require services and I’m sure we will continue to strive to deliver the best standards of care for all our citizens.

AND NUMBER ONE THIS WEEK IS !!!!!!

 

1. So Long, Farewell (Rogers and Hammerstein – The Sound of Music).I officially retire on the 28^th August. I wish all my colleagues and friends well and want to say thank you so much for everything!!

Gladys Haining is an Alzheimer Scotland Dementia Nurse Consultant for NHS Dumfries and Galloway.

 

 

 

 

 

Mental Health Change Programme by Ian Hancock

Government policy, changing demographics, epidemiology, health inequalities and increasing public expectations services, requires NHS Scotland to flex and bend to meet healthcare needs of the Scottish public.

The challenges faced by NHS Dumfries and Galloway Mental Health Service Directorate are no different from the national perspective, and have required innovative thinking which have seen the development of better ways of working.

The demographic changes facing Scotland are well documented, with the number of people in Scotland aged over 65 projected to increase by 22% by 2020, and by 63% by 2035. The over 75 population is predicted to increase by 23% and 82% over the same period and the over 85 population will increase by 39% by 2020 and 147% by 2035. Our current service will need to adapt to meet the healthcare needs of this growing population

We all recognise the benefits of keeping people at home, or within a homely setting, as close to their family, friends and local community. The Mental Health Service works closely with patients, carers, statutory and third sector colleagues to provide services that, wherever possible, prevent unnecessary hospital admission. There are, however, times when admission to a hospital is necessary and with this in mind, we have been developing our services over a number of years, and have seen a huge shift from hospital based care to community settings. We need to capitalise on our previous successes and have identified ways in which we plan to move ahead over the coming years.

The Mental Health Service Directorate comprises of four large component service teams (Mental Health, Learning Disability, Substance Misuse and Psychology) and within these teams there are a range of individuals from different professional backgrounds (nurses, AHPs, administrative staff, HCSW, Medical Staff, Psychology, and workforce business partners from Workforce Directorate, Finance). We have 2 in patient units based in Midpark, and in Darataigh in Stranraer, and have numerous community bases across all 4 localities

Over the next few years, the Mental Health Directorate will continue to strive to provide care that aligns with contemporary healthcare policy and legislation, and do this in a collaborative way with our stakeholders. In order for us to ensure appropriate services are being delivered, and that will meet the health needs of the general public of Dumfries and Galloway, we will continue to focus on a number of specific areas.

We will consider ways in which our inpatient beds are configured and consider opportunities to improve individual’s experience of in patient care, whilst developing inpatient services in line with our changing demographics. Services will be based on patient need rather than age.

We will support and evaluate the current 24/7Crisis Assessment and Treatment Pilot Service (CATS), based in the Out of Hours/Accident and Emergency Unit

We will develop our IDEAS (Interventions for Dementia, Education, Assessment & Support ) Service, a team designed to enhance skills in statutory and non statutory services specifically for individuals with a diagnosis of dementia.

We will develop a model of care that takes into account the challenges associated with our more remote and rural areas.

We will develop services which provide early interventions for people with memory problems, and develop Health Care Support Workers to work with families living with dementia.

This is an exciting time with significant challenges to face. We think, however, that we can offer a modern and effective service, within budget, but that such successes will inevitably rely on continuing to build strong working relationships with our service users, carers, and families, colleagues from all health and social care settings, and third sector partners.

Ian Hancock is the General Manager for the Mental Health, Learning Disability, Substance Misuse and Psychological Services Directorate

Dementia Champions in Dumfries and Galloway by @gbhaining

Who are we?

Across Dumfries and Galloway there are currently 116 dementia champions on our register. We come from a variety of professions and backgrounds including:-

• Nurses
• Allied Healthcare Professionals
• Social Work
• Care at Home
• Chief Executive Offices
• GP Medical Centres
• Community Nursing
• General Hospital
• Mental Health Hospital
• Community Hospitals

How do we become a dementia champion?

As dementia champions we have attended training either locally or nationally. The training provides us with knowledge of dementia, some of the complications and the impact a physical illness can have on a person living with dementia. Listed below are some of the topics included in the training:-

• Understanding dementia
• Communication
• Environment
• Promoting person and family centred care
• Community connections
• Working with families and friends
• Promoting health and well being
• Stress and distress
• Sexuality
• End of life care
• Supporting and protecting people’s rights

We are keen to stress that this training does not make us “experts” but gives us a greater understanding of dementia.

Our Charter.

As dementia champions we have developed and agreed a charter which outlines how we plan to promote our role and support people with dementia and their carers when we are delivering care.

How can you (our colleagues and teams) help us to help you?

If a person living with dementia or cognitive impairment is admitted to hospital or being seen by services check whether they have a copy of “This is Me”. This document can provide us all with very important information and can assist us to make sure we are supporting each person in the best way possible.

Effective use of “This is Me”

• If the person doesn’t have a copy of “This is Me” offer them one to complete along with their family and friends.
• “This is Me” can contain information which is not always readily available at first point of contact.
• Encourage all those working with the person to read “This is Me” and talk to them and their family about the person’s preferences.
• “This is Me” should be easily accessible and ideally left with the person to allow them to share with staff working with them.
• Sign the document after reading as this allows families and carers to see who is involved in the delivery of care.
• You must also make sure that “This is Me” goes back home on discharge as this document is very important to the person it belongs to.

You will see from our charter that we are striving to introduce ourselves to people with dementia, their families and carers during episodes of care. The ward or department may not always have a dementia champion on duty but you can assist us by making sure that everyone in the area knows who the dementia champions are and how to contact them.

We all wear badges as a means of identification so make sure you know who we are!

We will do our best to help, support and answer any queries you may have, however, as we’ve previously said, we are not experts! If we can’t advise you we know who to go to find out.

Development and Training.

We keep ourselves up to date by attending at least one of four development sessions organised for us each year. Our charter states we have to attend a minimum of one development session annually but we are encouraged to attend as many as possible.

These sessions cover a variety of topics but all help us to understand how we can best support people with dementia, their relatives and carers. The sessions are facilitated by Gladys Haining our Alzheimer Dementia Nurse Consultant and Alice Wilson Deputy Nurse Director. As dementia champions we are involved in decision making around specific topics we want to further our knowledge about. These sessions also give us an opportunity to discuss our role, share examples of good practice and discuss some of the challenges we face as dementia champions.

We rely on you as our colleagues and managers to facilitate out attendance at these sessions and your support is greatly appreciated.

To summarise:

• We, given the opportunity, can support and advise you on aspects of dementia and how to support people with dementia during episodes of care.
• We may not always be around, but, please make sure your department has up to date information about the dementia champions, who we are, when we’re on duty and how we can assist both staff and people with dementia.
• If we can’t assist you or answer queries we will seek help and support from some-one who can.
• We want to be able to help and support you as much as we can, so make sure you utilise the skills and knowledge we bring to the team.

If you require more information about dementia champions please contact:

Gladys Haining
Alzheimer Scotland Dementia Nurse Consultant

Tel: 01387 246981 Email: – ghaining@nhs.net Twitter @gbhaining