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/

More than just a T-shirt by Freda Newlands

This time last year I was in Jordan working as a doctor in Emergency Medicine with Medecins Sans Frontieres. Now, back in the Emergency Department in NHS Dumfries & Galloway, I have had time to reflect on choice, selection and how this affects our lives. I have had the opportunity to exercise and walk as much as I wish and sometimes I make excuses not to; it’s my choice. It’s curious how much we miss something when we are suddenly denied the opportunity.

Walking, walking obsessively walking. Since I left Jordan I have walked and walked and walked. I joined my son for about 125km on his Rhine-long walk from Switzerland to Rotterdam, I walk almost 10km daily near home, park the car in the furthest space from the hospital door, walk to buy the newspaper ( 5km ) and hiked in Andalusia, Arran, Tuscany and the Lake District. So grateful am I for my legs and the freedom to use them. The irony of my freedom to walk across Europe with no restriction unlike the felling refugees has not eluded me.

I had walked past a stationary treadmill in the expat house in Jordan at least twice a day for 8 weeks after I arrived in Ar Ramtha but I have allergy to indoor exercise, I mean, why would you do that when exercise is free, right outside the front door?

But then I was in Jordan, where security was an issue at our emergency mission, just a couple of kilometres from the relentless fighting in Syria. We couldn’t forget it, we heard the barrel bombs dropping and witnessed the Syrian people arriving in the emergency department as soon as they were allowed through the border to be treated. Not only had these people lost their homes, families and future, but also their immediate freedom.

Their limbs lost or severely injured, they were treated by the surgical and orthopaedic teams and nursed with tender compassion by the local staff. It didn’t seem very long before these brave people were demanding to go to our step-down rehabilitation ward as they had heard that there was fun to be had, children’s chatter to lighten the atmosphere and general camaraderie to enjoy.

Posters and slogans written in brightly coloured paints share hopes and fears encouraged by our amazing mental health team without whom the healing would take longer.

Occasionally we almost gave up hope for very ill patients, struggling to hold on to life in the intensive care unit (one bed) but then I must tell you about Ahmad.

He was delivered to our Emergency Department on a cold day in January, intubated but with no oxygen supplied to his fading body. His tiny teenage frame, bleeding from the traumatic amputation to his right leg, hardly breathing, fading fast.

We worked hard to resuscitate him and despatched him into the care of the surgeons. Long hours and careful surgical attention gave him a chance of survival and so he was admitted to our one bed intensive care unit. Tirelessly, our anaesthetist and ICU nurse looked after him and tried hard to wean him off his sedative cocktail. Without incubation he didn’t seem able to breathe alone and his oxygen saturations dipped too low for life. With some determination, he shook off urine and sputum multi-drug resistant infections (Acinectobacter Baumonii ) against the odds and eventually survived a tracheosotmy as he had been intubated really too long.

He was moved to the ward and nursed with kindness and great care. Slowly, he began to respond to touch and words and finally opened his eyes and could respond with eye movements. He soon became our most visited patient with every caller giving him extra care and attention. We were worried that his nutrition wasn’t enough through the naso-gastric tube so another surgical procedure was endured to insert a feeding tube into the jejunum.

This he tolerated and fed well.

Everything seemed to be improving, Ahmad was responding to everything appropriately.

I even began to contemplate assessment of his ability to swallow and thought that I might cautiously see whether he might manage without the tracheosotmy. Caution was surpassed by an over-enthusiastic relative who gave him a sandwich… he didn’t choke, the sandwich stayed down and Ahmad thoroughly enjoyed it, smiling from ear to ear!

All previous procedures were reversed and we watched in amazement and awe as Ahmad breathed through his mouth and nose, drank and ate freely, smiled and then, spoke our names.

He went from strength to strength, our miracle patient. Soon to be caught outside in the sunshine, sitting in a wheel chair initially but finally getting a lower limb prosthesis. This young man, given up on by some, given a chance by MSF, would yet again walk. Indeed we both left Jordan within a few days of each other; Ahmad desperate to go back to Syria and me to return to Scotland.

I tried that tiresome treadmill for a couple of weeks and quite enjoyed the challenge of a ‘bit of a work-out’. Then it broke and I felt quite cheated – never satisfied eh?

At least I have the freedom to choose.

http://blogs.msf.org/en/staff/authors/freda-newlands

http://blogs.msf.org/en/staff/blogs/syria-crisis/i-can-smell-syria

http://www.msf.org.uk/

Dr Freda Newlands is a Clinical Teaching Fellow in Emergency Medicine at NHS Dumfries and Galloway

‘How I survived change’ by Kirsty Bell

I read a quote recently that inspired me to write this blog

“It is not the strongest of the species that survives, nor the most intelligent. It is the one that is most adaptable to change”.

That is evolution, and I suppose in my opinion and to be black and white about it, when it does comes to evolution, those who adapt survive and those that don’t – may feel it’s forced, become extinct.

So how do we respond to change? Whatever form that change presents – it changes your life in some way or another.

Change is inevitable throughout our lives. I have gone through various events in the last 5 years which changed my life forever, so here’s some insight into how it effected me but most importantly, how I survived.

I married my first husband Colin in September 2011, a very happy day and one that lives with me every day. Six week later, on my birthday, I had a knock on the door where two policemen presented. Seconds later, they told me my husband had suffered a heart attack and had tragically died; he was only 36, my life changed forever.

And goodness, did my life change. I felt utter fear of what was ahead of me… how will I cope? I don’t want anything to alter or be different, I just want it to stay the same, I need him back, I am just married, it’s a mistake, someone please change it back to how it was, nobody understands…. This isn’t my normal!! This was just to name a few…….

Actually, I think I went into autopilot and wasn’t really aware of how I was behaving as I was more focussed on surviving. So are we working on autopilot when it comes to change and do we recognise how we come across to others?

So to answer my first question; how do we respond to change? – Well obviously we are all different and it varies, some people don’t like change – they like things just the way they are, where others can adapt to change well. We all respond differently and there is no right or wrong in the ways how we react, everyone is an individual.

I also ask myself the question do we respond differently when it’s forced or voluntary change. For me, the death of Colin was forced, however, I had to learn to adapt to the change by relying on support from friends, family and colleagues to ensure that I wasn’t making any major decisions as a reaction to the change (well I tell you that was some task for them), also asking for help and most importantly me accepting it.

Through time I found the strength to actually accept the change and knew who I was again, sorry actually who I had become without Colin. You know, Colin was so full and happiness and positivity, and if you know me, that is certainly the legacy he left with me when he died.

To put into context, I have talked about how I adapted to enforced change but since then I have very much embraced change and moved on. I met my now husband, Ewan in 2014 and at that point, I just knew that is was right and felt so happy, I actually couldn’t believe that I could feel like that again. I embraced my changes I re-married and moved away from my home town. I suppose what I am really trying to say is the changes that I had previously experienced, however hard, really helped me to recognise and adapt to change which made me into a much happier and stronger person.

So following on from this I do believe that we master the art of change over our lifetime of experiences which provides us with a great advantage and more importantly we learn about ourselves and how we respond to change.

I have learnt in some pretty hard lessons in life, and no matter how much we want our lives to stay the same – it just isn’t going to happen, we need to embrace it, become part of it, and make the changes inspire you.

My final word really, if you do feel yourself confused and lost in the process of change. Share any concerns, confusion and talk about it. Remembering it’s an individual’s desire to change that drives them — and that’s how I survived.

Kirsty Bell is the Clinical Change Programme Project Manager for NHS Dumfries and Galloway

“This is doing my head in!” by Harriet Oxley

I wonder how often you’ve heard someone say these words. Every day perhaps? Depending on our circumstances the things that provoke each of us are different. As we become more stressed and pressurized it becomes harder to see the way forward clearly. If we go unsupported and problems start to pile up they can start to bring us down.

Staff listening offers one-to-one support that is confidential and non-judgmental. Each person is supported to talk about issues of concern, deepen his or her understanding and rediscover hope. As a result they are enabled to tap into personal strengths and find a way forward if that’s what they need to do. Staff listening is a service offered by the NHS Dumfries and Galloway’s Spiritual Care team.

I recognise that some people are not sure what spiritual care is or what we do. I notice that some people hear the word ‘spiritual’ and imagine everything from ‘religious nut’ to ‘bible basher’. Others wonder why we need spiritual care in the NHS nowadays.

I wonder if it would help to make the distinction between religious and spiritual care. Religious care is given in the context of the shared beliefs, values and rituals of faith communities. Spiritual care, on the other hand, makes no assumption about personal beliefs or lifestyle. In other words, spiritual care is not necessarily religious and many people with no religious beliefs recognise their own need for spiritual care.

Spiritual care recognises that everyone needs to have meaning and purpose in their lives and fostering this promotes resilience and wellbeing. Spiritual care enables people, whether they’re patients, carers, volunteers or staff, to cope with life transitions, such as illness, loss or bereavement, as well as ethical dilemmas and major life decisions.

The Spiritual Care team consists of self-aware and sensitive listeners who have time to be with each individual in their need. Staff listening promotes spiritual wellbeing by offering a safe space for people to explore their concerns and draw strength from their own inner resources and those of supportive people around them. It is available to any member of staff, volunteer or carer within Dumfries and Galloway Health and Social Care. Equality and diversity is important to us and we welcome everyone irrespective of personal beliefs or life circumstances.

So perhaps you’re wondering what happens in staff listening. Firstly I’d like to point out that our role is not to fix problems or give advice. Instead we listen as each person tells his or her story, ask the right questions and offer support and encouragement. For many people telling their story is all they need to do. To have someone listen to the issues they are struggling with is enough to leave them feeling heard and able to carry on.

Sometimes, in talking about the situation, the person hears themselves say what they need to hear and gains insight just from having put their story into words. At other times the person’s story may be very complex, with many different strands. In such situations our role is to help them disentangle some of these strands, to look at them in turn and perhaps identify what some of their options are.

‘I have just realised what I need to do – I have never thought about that before.’

‘I have just heard the answer to my problem in what I have said.’

‘Saying that made me hear and see my own story differently.’

Space to reflect and talk through issues with colleagues has become rare, yet it is often the very thing that makes a difference in how we cope. If something is troubling you or you’re struggling with a particularly difficult situation, maybe it would help to talk in confidence with someone outside your situation. If so, please drop us an email to: dg.stafflistening@nhs.net

Harriet Oxley

Spiritual Care team

Celebrating Excellence Awards by Susan Coull

I was surprised and pleased to be nominated in the “Improvement to Care and Service” category and even more surprised to have been chosen as the winner. Sitting beside my fellow nominees on the night and hearing of their achievements, I wondered if they had sent the invitation to the wrong person. (Susan Coyle and I are often receive each other’s calls). Dr Ken Donaldson contacted the winners asking us to write a blog about our work and while I do not believe I have done any more than the other specialist nurses in our Health Board, I would like to use this opportunity to raise awareness of Parkinson’s disease and the difficulty people with this condition can face when admitted to hospital.

I began as Parkinson’s Nurse Specialist in May 2009. Dr Rhind (retired Care of Elderly Physician) proposed a business case for the post and with 2 years funding from Parkinson’s UK, the Health Board agreed. I had previously worked on ward 18, DGRI since 2002 and this was where my interest in this chronic neurological condition started. At the time of my starting, Parkinson’s UK (formerly Parkinson’s Disease Society) were working hard to promote their hospital “Get it on time!” campaign as they were consistently hearing of people being admitted to hospital and having their usual medication regimes not adhered to resulting in poor symptom control and prolonged in-patient stay as a result.

Parkinson’s medication is determined on an individualised basis and people with the condition are reviewed by Dr Shona Donaldson (Associate Specialist) and myself usually on a 3 to 6 monthly basis in order to customise their medication to their individual needs. The condition is progressive therefore review of medication is ongoing and as well as clinic review, people with Parkinson’s and their family/carers can access the Movement Disorder Service directly through telephone or email contact, usual working hours. We are in the very fortunate position whereby if I am out the office and not able to take a call, Angela Haining or Ann McCracken (secretaries) can speak to the person calling and very often help with their problem. Angela organises our out-patient clinic lists and this offers a patient-centred approach resulting in very few cancellations or non-attendance.

In an attempt to promote getting the correct medication at the correct time, I initially wrote to each Charge Nurse (including Community hospitals) to identify a Parkinson’s link-nurse and teaching sessions were held for them with the expectation that they would then raise awareness with their colleagues. This helped me to get to know ward staff and hopefully made staff aware there was a Parkinson’s nurse for our area.

The IT department was very helpful with installing an email alert system. This means I am contacted when a person with Parkinson’s is admitted to DGRI or a community hospital. This allows me to check their Parkinson’s regime and help staff to administer medication accurately. We have pill timers which can be helpful when times are out with usual drug rounds. I can also provide staff with information about social circumstances, multi-disciplinary input they made have had and what their usual presentation is. People with Parkinson’s can display considerable variation in their abilities dependent upon numerous factors including change of environment and routine, presence of infection, dehydration, constipation and of course, alteration to medication.

A Self-Administration of Medication policy for people with Parkinson’s was agreed with input from Gillian Burgess (Pharmacist ward 18) and Mrs Alice Wilson (Deputy Nurse Director). With the introduction of HEPMA this will need to be reviewed and updated.

Another area of concern is the issue of Nil By Mouth. Parkinson’s can affect the ability to swallow safely and it is not unusual if a simple swallow test has failed, for a person to be made NBM until their swallow has been assessed by a Speech & Language Therapist. Another scenario we see routinely, are people NBM because of bowel obstruction. If a person has their Parkinson’s medication stopped abruptly, they are at risk of Neuroleptic Malignant Syndrome (symptoms include altered conscious level, pyrexia, muscular rigidity, raised creatinine kinase, fluctuating BP, tachycardia). This condition is potentially fatal and the reason for my concern when a person’s medication is not given. If medication is not brought in to hospital by the patient, it must be sourced as a matter of urgency and cannot wait until delivered by pharmacy. If a person is unable to safely swallow oral medication for whatever reason, then a rotigotine (dopamine agonist) patch 4mg/24hr can be applied as per Clinical Handbook (see HIPPO). Please contact the Movement Disorder Service on 33909 to ensure we are aware the person is an in-patient (can be delay in email notification) and we will review the dose of rotigotine. Symptom control may require co-careldopa suspension via NG tube however the application of rotigotine in the short term, can prevent a serious deterioration in health.

Improvement to Care & Service Award – Sponsored by UNISON
Winner – Susan Coull

The evening of the award ceremony was very glamorous and a lot of fun. I feel very strongly that although I collected the award, it was only possible because of the amazing team of people I work with including Dr Donaldson, Angela, Ann and staff at Nithbank Rehabilitation Unit where our weekly out-patient clinics are held. Unfortunately, the others could not be with me on the night but I had support from colleagues from ward 18 who were nominees in another category.

 

 

World Parkinson’s Day is the 11^th April 2016 and Parkinson’s Awareness Week is from the 18^th – 24^th April. Look out for posters advertising our Cake, Candy and Book Sale on the 15^th April to support Parkinson’s UK and our endowment fund.  

And finally, thank you whoever you are who nominated me, still a mystery!

Susan Coull is a Parkinsons Nurse Specialist for NHS Dumfries and Galloway