I want to see a specialist by Michael Stewart

I’ve read a number of books over the years and something stands out to me: a great number of them tell the story of travels, of lands distant and of journeys of lifetimes. From Gulliver’s Travels to Around the World in 80 Days to The Lord of The Rings, most of my favourite books seem to be telling me that great worth is to be found through travelling to far off countries and experiencing different cultures. Although they were (probably) originally written purely as a form of escapism it seems to me that the unintended effect of such stories has been to glorify Leaving to the detriment of the appreciation of Staying.

I write this to appreciate those who stay put.

Let me give a true but extreme example of an all too common mindset: when I was in my final year of uni I was speaking to a friend of mine, Laura (fake name), about how our placements were going. Laura had been in a GP surgery for 7 weeks in a rural town in Grampian where she’d spent a lot of time getting to know the GPs and the locals. She told me a story of an Old Lady in her 80s who was nearing the end of her life and still lived in the house that she’d been born in, and whilst telling me of this lady Laura, quite matter-of-factly, said, ‘what a waste of a life, there’s so much she hasn’t seen.’

Is it really a waste of a life to stay in one place? I don’t think so.

I’m going to pause now and state that I’m not arguing against the flux of peoples across borders: here’s a reason why, other than that I haven’t stayed put. I once watched a documentary about how the invention of the safety bicycle (known more commonly these days as ‘the bicycle’) changed the world by enabling travel between villages and allowing exchange of ideas and body fluids amongst previously distant peoples to bring the human race to the path of ever moving technology on which it now walks. We effectively started cross breeding to create more advanced peoples. The modern situation of travel just extends that exchange to an international level from a local or national one. And of that I thoroughly approve. To put it another way I should say that without the input of people from other nations I believe that the NHS would fall apart and/or would not progress.

Anyway, back to the point. I think to some of the staff that I’ve met in DGRI who are from these parts and how they have benefitted both patients and me in my time here. Where new ideas and different expertise may come with those from elsewhere a deep local knowledge is of immeasurable value and as important if not more so. I’ve a couple of times had patients who have been known to nursing staff and my consultation has gone that much more smoothly because of a gift piece of advice, ‘Michael, that gentleman’s wife recently died of disease X so be careful what you say’, ‘The ambulance is coming from Moffat so they’ll probably be here in about 40 minutes’. It makes my day run that bit more cleanly and lets me feel closer to my patients through a connection which I haven’t been here long enough to share.

In addition to the work-based benefit of local informants I have benefitted massively from extra-curricular hints and tips. Right back at the beginning of my time here it was the local members of staff who told me about the Lockerbie Jazz Festival and the Local Whisky Festival (drink responsibly). These little pointers have made me enjoy my time here so much more than I may otherwise have because I’ve been able to jump feet first into the regional culture and not wasted any time looking.

When my friend told me that that Old Lady had wasted her life I got to thinking: we’ve glorified GPs. It has become cool to spend a little time everywhere at the expense of truly being the specialist of the place that you live. It’s people like Laura that can refer you to a place that you may love, but it’s the people like the Old Lady who really make it worthwhile going.

Michael Stewart is a Foundation Year 1 Doctor at Dumfries and Galloway Royal Infirmary

“My Neonatal Journey” by @GillyMoffat

This time last year I arrived for a night shift to be met by my manager who wanted to send me to Glasgow on a course. To be honest I didn’t even hear what the course was going to be about, all I heard was a night away in a hotel, on my own, away from my lovely (but always up before the crack of dawn) boys!!! Well the answer was a loud “YES” from me. However, what I didn’t appreciate on that night was how involved I was about to get or how passionate I was about to feel around the subject of Person Centred Care.

My journey started in 2001 when I qualified as a Midwife and came to work in Dumfries and have been here ever since. In 2004 after working in the neonatal unit for 2 years I gained a further qualification to become a Neonatal Midwife. I did not find university easy and through both times I will openly admit I have struggled. The only answer I have come up with is that I am a people person, definitely not academic and never will be. So, I thought people at the centre of health and care as the perfect subject for me but I will now go onto tell you how there have been times recently when I have thought otherwise and the reasons why I will continue.

I have now attended 2 out of the 3 collaborative sessions at the SECC in Glasgow with the next one happening at the end of May. There have been moments of laughter during these sessions and moments of inconsolable crying (not sure if that was just me as I was hiding behind my tissue) but overall the principle message is one that we are all potential patients and we should treat everyone the way we would want to be treated. Yes, I know this is one of the oldest cliché in the book but I think taking time to reflect on this will make us all better carers. Hearing first-hand accounts of poor care during what is the hardest of times is not easy but to know that the person carrying out this mistreatment is working in the caring profession is disgusting and unforgivable. So the question has to be what can we all do to make our services better? I have heard lots of buzz words/phrases like “listen to hear not to reply” and “nothing about me without me” and for once they actually make sense to me.

I feel the message is very clear, the first step to improvement is to ask our patients and their families what it is that they want and stop assuming that we always know better. This is where I started. My manager gave me a copy of an email she had been sent with an attachment called my neonatal passport. I began to adapt it to fit in with where I work then I can only describe it as my obsession began. I have asked parents, friends, colleagues, really anyone who will listen to read and comment on every version I have made (and there have been many!!). The title has gone from “My Neonatal Passport” to “My Neonatal Journey” and changes to the content have been carried out due to my most recent small test of change and I am now ready to try out the next test.

The booklet is designed to give parents a record of their stay in NNU. The information they need to gain confidence and knowledge to care for their baby while in NNU and on discharge. It will replace the parents’ information folder we have at the moment which I am told very few parents read. Each day the nurse/midwife is allocated a baby to look after, time will be taken to go over the pages designed to be signed by staff and parents. My hope is that by doing this any issues that arise can be dealt with and communication will be encouraged. Something that comes up time and again in complaints is lack of consistency in information given I believe that through time we can use the booklet as a reference point so we are all saying the same thing.

There have been times since I took on this project that I have felt it is too big a mountain to climb, when a small test of change highlights the booklets failings or I have realised that I am not being successful in communicating my vision to my colleagues it has been hard. I want more than anything for this to be a success although I have no doubt that I am still a long way from the finished product.

Before I started this project I had never heard of a “pdsa” or a “driver diagram” and to be honest I am still struggling at times. I know what I want to achieve but making it clear on paper is so difficult. I have spent so many hours working on “My Journey” that I can’t tell whether or not it makes sense so I rely on my colleagues in the neonatal unit. Thankfully I am lucky that I know they are behind me and will put up with my endless pleas for it to be read and re-read.

I am now looking forward to the next learning session in May, now, not only for the night away and a lie in past 6am but to hear examples of what others are doing around Scotland. Maybe even come away with inspiration for my next obsession, sorry meant project!!!    

Gillian Moffat is a Neonatal Midwife at Dumfries and Galloway Royal Infirmary                                                                                                                                                                                                                                                                                                                                                                                                       

 

 

 

“What’s meant for us won’t go by us” by Gregor Purdie

After 30 years in General Practice, I’m now retiring and will be spending more time on my area of special interest of chronic fatigue.

This blog tells the tale behind how this interest developed and covers a number of factors that shape the pattern of our lives. Why do we do what we do? Who has encouraged and supported us to get there? What has been the spur to follow things through?

I can say exactly when my interest in chronic fatigue was aroused and how it impinged on my clinical practice.

When I was a resident – as we were called in those days – in 1979, I was working for Dr RW Strachan,(see left) Consultant Physician in the Infirmary. A patient was admitted with an illness where fatigue was a major symptom. Dr Strachan considered that this could be “Royal Free Disease”. This was named after the London hospital where much research had been undertaken into the illness which would become known as ME – myalgic encephalitis. Dr Strachan encouraged me to investigate thoroughly the patient and write up a report to send to the Royal Free.

The lessons learned from this exercise stayed with me and I began to note symptom patterns consistent with what is now called ME-Chronic Fatigue Syndrome in patients I saw in general practice.

One thing led to another. I was invited to meet with the local support group. One of my patients met with Thea Stein, our then Director of Planning, and I was asked to be clinical lead for ME-CFS.

This has taken me down a very interesting road over the years and has opened many doors. To mix my metaphors, it has not always been plain sailing. ME-CFS is an ill understood condition. There has been great debate and difference of opinion. It is a multi-factorial condition that can affect many systems in the body. It is characterised by fatigue and particularly post exertional fatigue. It is also characterised by joint and muscle pains, sleep disturbance and cognitive problems often termed “cognitive fogging” where people report that their ability to think things through can be lost through fatigue. There are bowel symptoms akin to irritable bowel syndrome.

We will all have experienced the fatigue after a viral illness and the time taken to recover fully from it. In some people that recovery does not seem to take place. Post viral fatigue is the commonest cause but there are other triggers which will need to be better identified.

Having seen patients in my practice who were fit and well and suddenly see a change in their functioning level after the index viral illness, I do believe that there is, as yet an unknown mechanism that triggers this condition. This can make a profound difference to people’s lives.

At one end of the spectrum there are the me-sceptics who do not believe that there is a physical element to the illness. There are patient groups who are certain that their illness is purely physical with no emotional or psychological element. Once when I spoke as a GP that I aimed to practice medicine holistically, I was told that that meant that I did not believe that ME was a physical illness and the holistic care was a way of doctors saying that it was a psychological illness.

In general, though, this road has been positive and very interesting and allowed me to become involved in research and development at a level unimaginable to me when I entered general practice.

What has been achieved? There is now much more awareness of the condition. I find that when I speak to friends and colleagues, often there is a keenness to speak about someone they know with the condition. I’ve had the privilege through Alex Fergusson MSP, to bring this condition to the attention of the Scottish Parliament. I have developed links with both local support groups. I have a good working relationship with ME Research UK. This is a Perth based charity which supports biomedical research into this condition. I work with both the ME Association and Action for ME. These are two national charities which provide patient support and lobbying. They also provide a great deal of support to clinicians.

The biggest piece of work to date has been the Scottish Good Practice Statement on ME-CFS. Why a good practice statement? There is not the evidence to satisfy the requirement of a SIGN Guideline. There was a need to produce a document for clinicians in Scotland. We felt that the document, as well as giving guidance, had to reflect controversies over forms of treatment such as graded exercise and CBT.

It has been exciting to work with Action for ME in the development of educational packages. I’ve been introduced to the world of webinars. Now I know what it is like to read the news on the telly!

Locally, it has been great to work with clinical colleagues especially in physiotherapy looking at what we can provide in Dumfries and Galloway Professor Isles has also taken a keen interest in this area.

Back to the title! Like many, I’ve been blessed during my career by consultants and GPs who took an interest in the young pup. Dr Strachan’s encouragement has taken me down this clinical pathway which has shaped my career.

It behoves us similarly to enthuse and encourage to-day’s youngsters in the same spirit. It could become a greater legacy than could originally have been predicted.

 Gregor Purdie is a General Practitioner for NHS Dumfries and Galloway

 

Reaching out to hospital patients at the end of life by David Clark

I have been involved for some years now in the work of the Hospice Friendly Hospitals programme in Ireland – http://hospicefoundation.ie/what-we-do/hospice-friendly-hospitals/ . This fascinating project is a multi-centre intervention to develop end of life care capacity in hospitals, advocate for patients and families and create systems level change in the delivery of hospital for those approaching death. The programme has three goals:

• To develop comprehensive standards for all hospitals in relation to dying, death and bereavement
• To develop the capacity of acute and community hospitals to introduce and sustain these standards
• To change the overall culture in hospitals and care settings in relation to dying, death and bereavement

It was in the context of this work that I became involved in discussions about whether it is possible to establish what proportion of people in hospital at any one time are in the last year of life. Knowing this figure, it seemed, would assist in advocacy for patients and families, raise further awareness in clinicians and perhaps stimulate more effort to make appropriate care plans for people who might benefit.

Such a study however presents certain challenges. It requires some of the ‘big data’ skills that can link disparate sets of records together to produce a result. In this case, the issue was to connect hospital admission data with data from national death registrations.

Working with a team of Dumfries and Galloway clinicians and public health people and fully supported by a colleague in the Information and Statistics Division at NHS Scotland, we have now been able to complete this study. It is currently available for open access online and will appear in print in June. Here are the full details:

Clark, D Armstrong, M Allan, A, Graham, F Carnon, A Isles, C. Imminence of death among hospital inpatients: a prevalent cohort study. Palliative Medicine, March 2014, online first – http://pmj.sagepub.com/content/early/2014/03/17/0269216314526443.full

The study

Most efforts to identify the proportion of people in hospital who are in the last year of life have been based on local studies done in one or two settings, using small samples. We wanted to look not at a sample of hospital patients, but at an entire population of those hospitalised in one country on a given date. We therefore set out to establish the likelihood of death within 12 months of a cohort of all hospital inpatients in Scotland on a fixed ‘census’ date.  This type of approach is known as a prevalent cohort study.

What we found

Our census identified10,743 inpatients in 25 Scottish teaching and general hospitals on 31 March 2010 (we excluded cottage and community hospitals and long stay facilities).  We found that 3,098 (28.8%) patients died during the one year follow up period: 2.9% by 7 days, 8.9% by 30 days, 16.0% by 3 months, 21.2% by 6 months, 25.5% by 9 months and 28.8% by 12 months.

The likelihood of dying rose steeply with age and was three times higher at one year for patients aged 85 and over, compared to those who were under 60.

A striking finding was that almost one in ten patients (9.3%) of patients died during the admission on which we recorded them – and this accounted for 32.3% of all the deaths within the 12 month follow-up period. A simple way of looking at this is that nearly one in 10 patients in an ‘acute hospital’ in Scotland on any given day will die there during their admission.

Implications

Our study has quantified for the first time the large number of hospital patients at any one time who are within the last year of life. It clearly has implications for health care priority setting. Our findings support the various initiatives currently underway to raise the profile of end of life care in hospitals, where it is known there are still difficulties in making the transition to palliative care and in implementing interventions for the imminently dying. We show that so-called ‘acute’ hospital services are in fact dealing with a very large number of people who are nearing the end of their lives.

We argue from our findings that the culture and organization of hospitals should become become more attuned to the high proportion of inpatients in imminent need of end of life care.  There are plenty of opportunities here for DGRI to take a strategic look at how to address this – and also to think about it in relation to the reorganisation of acute services in the region.

Reactions

The media reaction to our paper, which appeared online on Westminster budget day, was extraordinary. Perhaps this was because ultimately, the study has a simple message: almost 29% of those in hospital at any one time can be expected to die within 12 months; and 9% will die on that admission.

I had sensed for a long time that this paper was important.  First, such a study had never been done before and whilst clinicians, if asked, might have a good working sense of the numbers in question, no one had yet produced solid evidence on propensity to die among hospital patients. Second, the paper seemed to me to give support to all those advocating for better engagement with end of life care in hospital settings – such as Hospice Friendly Hospitals in Ireland, those working on the aftermath of the Liverpool Care Pathway, as well as the many patients and families who have expressed concern about these issues in recent times.

In general the mass media had a good sense of the purpose of the paper. Several broadcasters highlighted that it is not a comment on the quality of care, but rather an opportunity for hospitals to think more actively about how they engage with that significant portion of their patients who at any one time are in the last year of life.  The Herald in particular gave a detailed summary as well as comments from Age Scotland and Scottish Government. Radio Four’s Sarah Montague was eager to know whether the results would be replicated elsewhere. BBC Scotland’s Eleanor Bradford presented a well- reasoned piece that also highlighted approaches to early identification of patients with palliative care needs, on admission to hospital – a theme that was picked up a few days later in a ‘magazine style’ piece on the BBC Reporting Scotland radio programme.

In the social media there was huge interest from professionals working in palliative care and in hospitals in general. The sense of excitement and support from colleagues was genuinely rewarding. Some were quick to ask questions – could individual hospital data be released, how did length of stay compare between those who died and those who did not, were there any special features our census date that might have influenced the outcome, does Scottish end of life provision differ from other parts of the UK? Others talked more about what we now do to identify and respond. Some emphasised the role of primary care and district nursing services in avoiding admission to hospital.  One group even organised a Twitter journal club to discuss the paper – leading to the idea of conducting the study in three or four other countries.   No doubt the debate will continue.

I present this as a piece of important research, conducted by colleagues from NHS Dumfries and Galloway and the University of Glasgow, Dumfries Campus. I hope the paper will be widely read locally – and that actions will follow to further improve the care of local patients in the last year of life. We shall show in a forthcoming paper that a large proportion of these go on to die in the Dumfries and Galloway Royal Infirmary.

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

Follow him on his blog : http://endoflifestudies.academicblogs.co.uk/and on Twitter: @dumfriesshire

 

 

 

Jose by Kirsty Bowie

My name is Kirsty Bowie and in August 2001 my husband and I lost our son Jose.

The following is a shortened personal account of what happened before and after his death. I have chosen to share my story in the hope that it highlights how decisions made in this profession can have devastating consequences for a family like mine.

Jose was born on the 2^nd of August 2001 nine days overdue. My labour started on the 1^st of August early afternoon and continued throughout the night. Despite the pain, I refrained from the pain relief offered, as I wanted to be fully aware of what was going on.

The midwife suggested my waters should be broken as labour progressed. This was done at 7.35am. There was an abundance of meconium. I knew meconium was a sign of foetal distress. It was suggested we do a trace of Jose’s heartbeat. After struggling to locate it, the pattern was irregular, his heartbeat was dipping and wasn’t recovering, at its lowest it dipped to 54 beats per minute. The consultant was called for and it was decided that a foetal scalp ph test would be carried out, this was carried out around 7.45am. I feel it was at this point that things started going wrong.

The consultant had introduced herself, explained the procedure and explained she had a student with her who would be observing and assisting. I felt this was inappropriate given the circumstances. I wanted things to be done swiftly and I feared this may hold things up, which it did. The student dropped, then broke one of the instruments, pulled the steel trolley towards the consultant and a spotlight which was being used flew off the steel table smashing the bulb. My baby was distressed and I remember feeling very agitated at this.

The test was eventually completed and the midwife explained that the results would be with us in a short time. Sure enough only a short time lapsed before the consultant returned. However instead of reassuring me I was now being told “your baby needs to be delivered now”.

Despite this statement of urgency and knowing that Jose was distressed he was delivered by caesarean section an agonising 3 HOURS later. A second consultant had made the decision that I was not a priority.

At 10.35am Jose was delivered with an apgar score of 2. The Paediatrician was called as soon as the resus clock was started. It was claimed it took him 5 minutes to arrive. This is something which I still debate, because he came from Ward 15 which is on the 3^rd floor of the infirmary and travelled by car to the old Cresswell. The journey alone takes longer than 5 minutes and this initially had me wondering whether Jose could have been saved had he got there sooner. I now know that the paediatricians presence made no difference to the outcome. It was concluded the cause of death was meconium aspiration due to a considerable delay from discovery of meconium to delivery.

Craig received the news outside the theatre. He compares that moment to being punched in the stomach, a wave of complete panic at the thought of telling me.

He didn’t have to tell me after all.…..I received the devastating news whilst being wheeled back to the labour room, not face to face, just a voice from behind saying in a very matter of fact way ‘your baby died Kirsty’ I can still recall that voice. I will never forget that voice. Craig was re-united with me in the corridor as I was wheeled back to the labour room. We will never forget that moment or that day.

The consultant and the paediatrician sat at my bedside a short time later to explain what had gone wrong, this for me was too soon however, I do distinctly remember the paediatrician saying he was sorry. He seemed genuine and I appreciated that. I also believe that he had tried his best to revive my son.

Having a baby is supposed to be one of the greatest moments of a persons life. Family, friends, colleagues were all awaiting phone calls. Craig was now dreading delivering the news he was dead. How could a perfectly healthy little boy be let down so badly and denied his life. Family still wanted to see him, he was perfectly formed all ready for life.

 

Jose

In the hours that followed I lay in utter shock. I can only describe the feeling as one of utter desperation and gut wrenching sadness. I had to be persuaded to see him. My biggest fear was letting him go. I still remember how much he weighed in my arms, I kissed his forehead, he was so cold, I unwrapped his blankets and looked down at his little chest, it was one of the lowest points of my life. I felt really scared. I asked Craig to take him away. If I had this time again I would spend more time with him. I regret this so much now as we have no photos of us holding him and this still distresses me.

I just wanted to go home and so made the decision to be discharged that day. Craig requested to see Jose again and dress him in what would have been his coming home clothes and then we left, leaving our beautiful wee boy behind.

The death of a child is one of the worst things that can ever happen to a person. Coming home is really just the beginning……..I lay in his nursery and literally howled. Instead of caring for him we were arranging his funeral and choosing his headstone. We registered his birth and death at the same time. Burying him in the clothes we had bought to bring him home in. It is a life sentence. Jose would have been a teenager this year.

Although we have 2 beautiful girls moving on was exceptionally tough. Grief is exhausting. In the early days we went from being a happy fun loving confident couple to virtual recluses, something I would never have believed. We avoided people, situations and just went through the motions of life, carrying heavy hearts and feeling numb. When you stand at the grave of your child you have reached rock bottom. The death of my son is something I will never get over, and there is never a day goes by that I don’t think about him.

Although I initially felt great anger and bitterness, I have had to learn to accept what happened that day and recover enough to accept that nobody is infallible.

Kirsty Bowie is an Assisstant Practioner in Radiography in DGRI.