Grief, Loss and How I Got Through (how I am getting through) by Christie Murphie

At some point you will lose someone. 

It is a matter of fact, a matter of life. It cannot be escaped or evaded, it simply must come to be at one point or another, whether you like it or not. 

Maybe you will never have to say goodbye to another, maybe you’ll go first; however then somebody else will have lost someone so it is not really escaping it at all is it?

In the words of Steve Jobs; “Death is the destination we all share. No one has ever escaped it. And that is as it should be… It clears out the old to make way for the new.”

Maybe one day death will be a good thing but for me, personally, to have lost someone it is only bad. There was no good, no relief, no justice in my loss. There was no hope or a feeling of ‘this is as it should be’ or perhaps ‘now things will be okay’ as I think maybe it is for some. No, for me it was simply as if all the stars went out at once and my bones went cold. There was no lesson to be learnt or any strength to be gained at that point, instead it was just like I had been tied to a block of concrete and tipped overboard.

I imagine that for some, when their loved one has been fighting for days or months or years, when that moment comes when you lose them… in some way it may be seen as finding them again as they are free from suffering for the first time in a long time, and in a way I imagine for some that is better; death can be a relief. 

In my case, it was sudden, it was unexpected. There was no battle that was called to a truce on his last breath. There was no chance to say goodbye.

At 11.39 on Saturday the 27th June 2015 I had a father. A healthy loving imperfectly perfect father. And then at 11.40 on Saturday the 27th June 2015 my Dad was dead. 

I can’t remember what I said to him last. It was probably some stupid accented ‘see you later’ as I went out to work, but I can’t be sure. Maybe I didn’t say anything at all, too caught up in my phone or the cats or a conversation; I don’t know.

In the hours and day and weeks and months and, eventually, years to come, I have learnt some things about grief. I did not know them previously as they were newly and reluctantly learned, but here is what I discovered. 

You will be angry. Very very angry and very very sad. 

This will not stop for a while; I imagine that some people will lean more towards one rather than the other.

You will make stupid silent (although you may indeed vocalise them) pleads and bargains, to any deity you believe in and some you don’t. You will plead to be woken up, to be brought away from the pain. You will try and bargain for anything to be swapped in return for them to be given back. This will include yourself.

You will never feel less in control, as in that situation there is no such thing as control for you. When you lose a loved one suddenly there are not any immediate plans to make because you simply have no clue what the next step is. 

You will choke back the tears because you think that may be a better plan, because your Mum is crying and you don’t want to give in and give up; there’s stuff to do. In reality there is likely not any stuff to do; someone else will probably do it but you will do it because it is a way to get back that control that you have lost, that was ripped away. 

When you find out exactly what happened you will be so angry. You will never have felt a depth of anger like that and you will finally understand the meaning of the word ‘loathing’ as that it was you will do. You will loathe this person, this monster, who took your Dad, your Daddy, away from you. It will not matter at all that people will try and placate you about this man; about how he likely feels terrible and how he will likely never be able to forgive himself; you will simply think that that’s his penance although even that is not enough. You will wonder if you have lost the capacity for forgiveness, and then you will wonder if you care for having lost that ability, because who cares: you lost your dad. (Later, much later, you will realise that this was just any other man who made a mistake; there was nothing monstrous in his actions aside from the fact that he took your Dad away although completely by human error.) 

You will wonder if you have the capacity, the strength, the bravery to get through. You will be unable to picture a future without them there, you will not want to picture a future without them. (Soon you will realise that getting through is not about strength or bravery, it is simply about putting one foot in front of the other and waking up the next day; that is not being courageous it is simply surviving.)

You will wonder if you could have changed things, about whether or not in some way it was somehow your fault; perhaps it was some sort of karma for being an a******e for the majority of your life, or maybe if you had simply made him a cup of tea or actually ensured you went up the stairs and actually said goodbye, or maybe if you had discouraged his hobby instead of encouraging it or… The blame you put on yourself will pile up, and you will not realise that everyone around you is doing the same thing as well, and none of you really think it will make a difference. Maybe it’s the deep rooted guilt from being an Irish Catholic family once upon a time; maybe it’s just human nature. Whatever it is it will not help. It will not, but you will continue because you cannot punish your lost one as they are gone, and you cannot punish the one who took them; that is not your job. There is no way you would even think of punishing those around you as you can see their suffering, so instead you will punish yourself and think it’s the only way you will be able to get through. You will be wrong, but that is something you will learn in the future. A long way away in the future.

You will worry you will forget about them, or that somehow you will let their memory down or somehow disappoint them. Even if you are not religious you think this, despite the fact that this makes no sense with your own beliefs. You will, nonetheless, continue to have these worries. You will never, in reality, forget and instead it will be the complete opposite. You will think of them when you wake, when you’re making yourself a cup of tea, when you’re on the opposite side of the world. You will even remember them in your sleep, your dreams will be plagued constantly. At some points, some very low points, you will wish you had forgot because currently remembering seems all that more painful. You will then punish yourself for feeling like that. 

There will be very low points. Very very low. You will, at some stages, resent your own family. You will wonder why they’re not there for you in the same way you feel you are there for them. (You will realise later on that this is because you didn’t allow them to be there for you in that same way.) Some of your family will not talk about it at all, like it never happened and this will, at your lowest points, get you so mad you will feel you could explode. (You will later realise that this is their way of coping, and is indeed a generational thing.) You will wonder why you feel so alone. (You will realise that other people simply grieve in different ways, and to expect them to understand you when you’re so busy running around trying to keep everyone happy is impossible, and very unfair.) 

At your highest points you will be able to make jokes and talk freely and people will see you at this point and assume it is your new normal, that you’re over it and you got better. That it all got better.

In reality it will not ‘get better’ and you will probably hate it when people say this to you, no matter how long ago that loss was. It will not get better in any way. You will have still lost someone you loved beyond words too suddenly too quickly too young and without saying goodbye. You will, however, simply have to get used to your new normal. Your new life. Which is missing one big puzzle piece but that will simply be the way your new picture looks. People who meet you after will not realise that this is your new normal but those who have known you, those who mourned with you, will also look for that missing piece. They will wince with you when there’s an accidental mention, or shed a tear when they see a picture or a thing that reminds them of your loss.

Grief is shared. Maybe there are some people who grieve alone, as nobody else lost that person, but this must be rare. Your loss, of that (brilliant stupid funny clever sappy) person was shared, and other people grieve with you. Not in the same way, but when you realise that a whole community is feeling that loss, a whole group of people around the area, the country, the land mass, the world… Your pain may ease. If so many grieve then it can’t have been just you that thought the world of that person, and to be able to share that load, that burden through the medium of talking or communicating in any way, it’s better. Grieving alone. Thinking that your grief is the most important is part of the process I’m sure, but it’s not healthy to keep that up. Of course you are entitled to your grief, and it’s likely that you are one of those that misses them the most, but to isolate yourself because of that is not good and alienates yourself from being able to share that burden through talking with other people, sharing memories and silent tearful hugs. Maybe one day you will be able to get through your grief alone, but doing that is not healthy or good for anyone, and you may discover at the end of that journey that you have lost more than one person. 

You will, of course, feel alone. And anxious. And depressed. On your very very worst days you will wish you went with them. Those days will be the darkest and those are when you need a warm cup of tea and a cat to cuddle. And people to talk to and share moments with. Those days should become rarer as times goes on, but they will pop up every now and again, seemingly random, and shock you and scare you and you will cry on and off that whole day. It will scare your friends to see you so vulnerable, as only yesterday you were making inappropriate jokes about your loss and talking easily. It will, you will learn later, be simply part of the process, and will never stop. You should, if not for your own sake but for those around you, seek out some help. There is always help, and indeed you will be very surprised just how willing everyone around you is to listen. Talking to people who knew your person can help, yes, but that often can become a two-sided grieving session, and sometime it will do you some good to talk to someone who did not know them, someone who only knows you or indeed a professional listener who does not even really know you at all. They will be able to help you. They will. 

You will have sudden splurges of anger. People will talk to you like they understand and, on your bad days, this will not help you. You will feel it bubbling over but, because you are you, you will not take it out on them because that would help nobody. However your preferred method of crying alone in the shower after those moments does not help much either but hey-ho. You have a right to be angry, or at least you do at this stage. You should try to develop and work on that, but to feel angry when someone talks to you like they understand when they’ve never walked this path, or say they have because they lost an uncle’s step-cousin who lived in Australia and who they never even knew until they died – that’s pretty galling. It’s harsh, but those who have lost someone, when they’re still grieving and figuring things out, don’t need that sort of patronisation. Believe me, if you are reading of this and have done it; it does not help. You may think it does because you are trying to connect, but simply saying that you’ve never had such a thing happen to you is enough. Say that, and then give your support but leave it there. 

You will start to wonder when is the appropriate time to stop grieving? When do you stop crying at night? When will it stop feeling like a punch in the stomach every time you hear (a motorbike, someone blowing their nose, a man’s unabashed laugh) something that reminds you of your person. This, you will eventually realise, is not something you can choose. Maybe one day it will stop hurting but that day is not soon for (me, anyone) you.

You will wish you believed. In a god, some sort of deity. Maybe it would help you somehow to think that they’re being looking after by some caring sentient being. You will realise, as you subconsciously always knew, that faith is a gift you were not given, and it is not one they had either. It may cushion the blow for some, but for you the preferred choice would always be that they were here with you rather than some omniscient being. Your person would probably just sass them and make an inappropriate joke anyway. 

One day you will realise that six months have passed and wonder how on earth you managed, and you will realise that maybe simply getting up and putting one foot in front of the other was bravery. You will realise that that you have to make something of your days and do things and projects that fill those times up. Painting a wall, redecorating a room, going travelling, buying a colouring book, going back to university… they make your day more than simply more time without them there.

One day you will graduate and you will have managed to get there without them, and that will be a hell of an achievement. They will not watch you flap around in the graduation gown and laugh with your friends all hyper and excited to have got through. They will not be there to watch you walk down the aisle as a newly married woman (as they knew they would not be walking you up it due to a feminist rant when you were 16). 

And then one day you will be holding your first niece or nephew, and hopefully one of the wee boys will have their name, and realise that death is simply the leaving of a physical body’s corporeal capabilities, and actually as long as you allow it they will never leave. They will live on in the grandchildren they never got to meet, and maybe they’ll have his long legs or his mechanical capabilities or more importantly his hatred of unneeded violence or his moral compass. You will be able to tell them that they inherited their strange monkey toes off of their auntie who got them off their Grampa and even though they look weird at least they’ll be able to pick up the remote without using their hands. And when they laugh I bet you they will look like them, or sound like them, and that is what loss becomes; finding where they have gone, where they have ended up, who they live on in. You will be able to see in your brothers the parenting skills (or lack of) that they used and it will be bittersweet but it will make you smile. 

That is where peace can be found, in the sharing of memories and love when remembering them, and that is where you will find them again. 

You can read Christies original blog at http://creatingchristie.blogspot.co.uk/2016/01/the-most-challenging-year-so-far.html?view=snapshot#!/2016/01/grief-loss-and-how-i-got-through-how-i.html

Clinical PORTAL – coming to a device near you in 2016 by Murray Glaister

This is my second blog, and having looked back at my first one (26^th April 2013), where I was introducing the electronic Casenote, I wanted to reflect on what has changed.

In many ways the message is the same, there is a new Clinical IT system, it will be rolled out across the region, it will mean a change in practice and doing some things differently and, most importantly, it is the next step in the journey towards a fully electronic health record.

To date we have scanned all the Active Mental Health records and we have scanned in almost all of the Acute Casenotes held in DGRI. We are currently working through the Paediatric casenotes and will be starting with the Community Children’s Nursing casenotes in February.

There are 50,800,180 (50 Million +) pieces of paper currently scanned into the eCasenote system and, on a daily basis, we are scanning over five feet of stacked paper from outpatients and inpatients.

But I think it would be fair to say that the electronic casenote was not universally liked, in particular the Consultants in DGRI were very concerned that it didn’t meet their needs.

So what’s changed with PORTAL?

Some form of PORTAL was always the next stage in the road map. In essence, a Clinical PORTAL gathers together information from other hospital systems to present a shared view of information in a single area. This allows all relevant data to be retrieved and easily accessible from any health board premises across the region.

Or, as a Clinician described it, ‘the window/door to the future of IT interactions in clinical practice’ and ‘the one stop for all the clinical information’.

What we have done, is to push a rapid development and deployment of Clinical Portal over the latter half of last year to an Early Adopter group of staff. They have been using it in an unfinished form, to understand its capabilities and make suggestions as to how it needs to work before it is rolled out to the wider audience.

A lot of these clinicians have been the very consultants who initially criticized the electronic casenote, and already their feedback and comments have allowed the system to change in line with clinical requirements. We are heading for 100 users, as the membership of the Early Adopter Program for Clinical PORTAL has been expanded to ensure that representatives of all areas of the service have a voice in its development.

Feedback so far has largely been positive, with most people saying the way it works is very ‘user friendly’. In particular there are several different ways to order the information to make it easier to find what you are looking for, and having several separate systems information on a single screen simultaneously allows for easier understanding of what is happening with the patient.

It’s not all about the patient though.

When looking at the clinical PORTAL, one of the early comments has been on the use of the term ‘Person’ rather than ‘Patient’. This is because another of the reasons for investing in PORTAL technology is that it provides the ability to present a single tool that can be used across Health, Police, Education and Social Services.

This DOES NOT mean that everyone will have access to clinical information, it means that, as well as the health focused Clinical PORTAL, there will be a Social PORTAL, showing social workers their information in one place. Similarly there can be an Education PORTAL and a Police PORTAL giving their view of their information on any person in Dumfries and Galloway.

What it does mean however, is that key information that should be shared, Child Protection, Vulnerable Adults, Lone Worker Risks, Alerts and so on, will have an easy to use integrated mechanism to allow this to happen.

What happens next ?

As mentioned, we have a list of requirements from the Early Adopter Program to be developed before Clinical PORTAL is rolled out. We are expecting a system update in February / March that will address many of these issues and allow rollout more widely after that.

Having the existing electronic casenote documents viewable within Clinical PORTAL is also a key step, and work on this should be finished at around the same time.

We are still investigating the best electronic tablet that can be made available to support this, within Health Board premises at least. And similarly we still haven’t got a working off line solution to make it truly portable.

Final thought

For any of you who have seen Terminator: Genisys, there is a scene set in hospital where all the clinical staff are wandering about consulting a whole variety of devices to look up all the information they need to effectively treat the patient. That is what we are trying to achieve, before everything goes wrong and gets blown up obviously.

If any of you want to talk to me more about Clinical Portal, eCn or Early Adopters (but not necessarily Terminator: Genisys) please get in touch with me at murray.glaister@nhs.net.

Murray Glaister is eHealth Project Lead at NHS Dumfries and Galloway

‘Preserving the Past, Recording the Present, Informing the Future’ by John McGonigle

The above title comes from the National Records of Scotland website and you may be wondering ‘what on earth does that statement have to do with me, both privately and in my role in the NHS?’. Well the answer to that question is quite possibly more than you might think at first glance.

Preserving the Past

You may have received a gift of a book on Genealogy at Christmas or visited a website to get some guidance on tracing your family history. Without access to the appropriate records you would not get very far with your research. You may feel frustrated at being unable to make any progress in proving that you are actually 292^nd in line to the throne or verifying that you are a distant cousin of Barack Obama, but other than the disappointment factor no real damage is done. Disappointment is not the word I imagine anyone would use should they discover any gap in their health record or that their record was unavailable for any reason.

Recording the Present

During the course of our everyday business within the NHS we record information relating to the events of that day e.g. recording details of medication administered to a patient, completing a purchase order for stores, etc. The details recorded provide an accurate picture of the current situation that we or our colleagues can use with confidence to continue the treatment of a patient or progress the order.

Informing the Future

By the collection, analysis and publication of information drawn from various sources it is possible to assist determination of future requirements for our society in fields such as predicting education needs, assisting in the formulation of flood prevention measures and healthcare provision to name just a few. By ensuring that records are accurate, securely stored and readily available it enables even the most complex analysis to be undertaken.

Records Management

Information is the main asset that all businesses and organisations have in common and good records management enables them to manage their activities professionally and efficiently. Recently though, there have been a number of issues in a variety of areas that have brought the subject of records management into the minds of the general public. For example:

• How many of us were affected by the hacking of customer information at TalkTalk ?
• Apparently there was the embarrassment (to put it mildly !) for some when Ashley Madison had their systems hacked into
• Various banking issues have resulted in direct debit payments being missed because accounts were shown, incorrectly, to have insufficient funds
• Missing information resulted in a number of issues in the Glasgow Bin Lorry enquiry
• Approximately 8000 paper health records were destroyed at NHS Grampian due to a flash flood in a basement at Aberdeen Royal Infirmary

The headlines associated with these incidents caused emotions ranging from mild concern to outright panic. Although most of the above examples could be relatively easily resolved or the concerns mitigated by prompt action (with the possible exception of the one at Ashley Madison!) the damage to an organisations’ reputation was already done.  Eventually customers get compensation or they move their business to another company. Which is fine until it happens all over again e.g. there have been several issues in the recent past at TalkTalk. Imagine then, the impact on your life that would result from missing or incomplete health records and associated information on even just one occasion. How would you feel …Betrayed? ..Angry? …Disappointed? …Surprised or possibly not surprised at all? In this case it is not as simple as changing mobile phone contracts or switching bank accounts. There is only one NHS and we are all entitled to assume that our health records are managed professionally and in line with all current legislation e.g. The Data Protection Act 1998, Freedom of Information Act 2000 and more recently, the Public Records (Scotland) Act 2011.

The Public Records (Scotland) Act 2011

This Act fulfils one of the main recommendations of the 2007 Historical Abuse Systemic Review (the Shaw Report). The Shaw Report found that poor record keeping often created difficulties for former residents of residential schools and children’s homes, when they attempted to trace their records for identity, family or medical reasons.

One of the aims of the Public Records Act (Scotland) 2011 is to achieve improvements in the standard of record keeping in all 270+ public authorities in Scotland.   The Act requires every authority to prepare a Records Management Plan (RMP) setting out proper arrangements for the management of the authority’s public records and submit it to the Keeper of the Records of Scotland for agreement. NHS Dumfries & Galloway are currently in the process of creating their RMP for submission by the end of February 2016 to the Keeper for assessment.  

The RMP encompasses 14 elements of records management as defined by the Keeper. For each element we are required to submit a response together with detailed supporting evidence. Several NHS Dumfries & Galloway policies relating to Records Management, Information Security and Information Governance have been updated to ensure that they meet the Keepers’ requirements – please ensure that you are familiar with the latest documentation.  

The demands around the security, accuracy and availability of our personal information will undoubtedly continue to grow. Current and future legislation (there is another abuse enquiry currently under way in Scotland that may result in updated legislation) will help to ensure that, together with the commitment and professionalism of everyone, records management within NHS Dumfries & Galloway is of the highest possible standard and will indeed ‘Preserve the Past, Record the Present and Inform the Future’.  

For more information on the Public Records Act (Scotland) Act 2011 please click here or contact John McGonigle, PRSA Project Manager. Tel: 01387 244189 or internally 34189. Email: john.mcgonigle@nhs.net

What a year, It’s time for reflection by Helen Coles (@huffity)

The Christmas decorations are packed away into their boxes, and trees have been stripped of their glitter and bling. The festivities have come to an end and the welcoming of 2016 was celebrated by many surrounded by families, friends and colleagues.

The entering of a New Year should bring happiness, reflection and, for many, positive resolutions and goals requiring willpower and determination. The change from one year to the next can bring new challenges and offers the step forward into new opportunities either professionally or personally. However sadly for many perhaps the New Year brings in a feeling of uncertainty or fear, where a clear pathway or future plan can often not be seen and where the days, weeks and months ahead are often clouded by grief, loss, illness or a sense of losing control over a situation or outcome.

The last 12 months of 2015 have brought a variety of news headlines providing us with daily discussion and conversation and also showing the power of social media; interestingly one of the most tweeted discussions that became a viral phenomenon involved the debate over this dress, a strange optical illusion; a blue and black dress which to many appeared as gold and white, sparking discussion and debate through twitter and social media. What colour did you see?

This was closely followed on twitter with millions of tweets commenting on the birth of a new princess into the public eye and the death of Cilla Black who was described as a national treasure, which for many saw the beginning of a new life and sadly the passing of another.

March 2015 saw the death of fantasy author and creator of the Discworld series Sir Terry Pratchett at the age of 66 after being diagnosed with Alzheimers in 2007, not only was he an acclaimed fantasy author he campaigned publicly for the right to die. In June irrespective of political view came the sad news of former liberal democrat leader Charles Kennedy who died suddenly following a major haemorrhage after his long battle with alcoholism. And in Scotland figures indicated that alcohol related admissions to hospital continue to rise in 2015.

For many, 2015 brought the hype and anticipation of the new Star Wars film – ‘The Force Awakens’ – and was not without disappointment, however personally I’m more of a Bond girl and Spectre featuring Daniel Craig was always going to be my 2015 film of the year.

Although 2015 brought lots of good news, the main headlines were dominated by political debates over the crisis of the vast number of refugees fleeing war torn areas where aid is so vitally needed and more recently the terrorist attacks in Paris, highlighting not only the vulnerability to threat but the sadness which comes with such tragic death and innocent loss. 2015 also brought a major scientific breakthrough, watched by the world. British astronaut Major Tim Peake ventured into space to the International space station, the first brit to do so. Not only that but he tweeted Sir Elton John with Rocket man, gained a significant info page on Wikipedia and dialled a wrong number back to earth from space on Christmas day.

There were many 2015 health headlines, as an ex respiratory nurse specialist e-cigarettes have provoked much discussion and only time will tell the long term effects. In Scotland, a ban on smoking in cars with children was unanimously voted as an offence and provoked a change in legislation under the children in motor vehicles bill. As for the NHS, it continues to make daily headlines and is a target for the media both nationally and locally and despite all the positives it is the negatives that make the news. In Scotland we saw the opening of the Queen Elizabeth University Hospital Glasgow which was even the subject of a BBC documentary, interesting watching as we head towards the building and completion of a new hospital for Dumfries. Lessons to be learnt.

More recently however the news has been dominated by the horrendous wet weather with parts of our own region severely devastated by Storm Desmond and the forces of nature. Whilst watching the national and local news broadcasting from the Whitesands I was struck by the resilience, generosity, good will and sense of teamwork seen by professionals, volunteer services and members of the public -helping people and families who they had never met before and sharing experiences and stories. Suddenly on social media facebook pages were set up to help those who needed basic shelter, food and warmth – all fundamental to surviving in a time of vulnerability. The offers of assistance, help and support showed the empathy that people had with the difficult situation and future ahead of them, and willingness at that point to be part of a person’s life even if only for a short time.

For me 2015 brought my own news headlines with a feature, alongside others in the local DG life magazine, celebrating the amazing achievements and work of staff and volunteers at the NHS Dumfries and Galloway Excellence in care awards held at Easterbrook Hall. Watching all the nominees and winners dressed up for the evening in black ties and a variety of sparkly dresses, and with everyone so proud to be representing their area of work, their department and their expertise just showed the work that goes on by all staff within NHS Dumfries and Galloway. Daily, wherever we work, we are all part of the lives and healthcare of patients where we hope to make a difference through the work we do.

The Patient award for me was a great honour and knowing that someone had taken the time to find out about the awards process, fill out the nomination form and think that I had made such a difference to their journey of care made me very proud and for once speechless. However for me the award also symbolised the end of an era. In October 2015, following 10 years of working as a nurse specialist with the respiratory team, I headed off to new pastures as an advanced nurse practitioner within the emergency department.

So what will 2016 bring? It is the Chinese year of the monkey; the monkey is described to be an intelligent, witty, and inventive animal. The monkey is a problem solver working with their group while simultaneously demonstrating independence associated with an aim to achieve and who always likes a challenge.

In 2016 there will be many news headlines, with the inevitable health related challenges including pressures on services, bed resources, lack of finances and the constant demand on staffing. Despite all this we too use our intelligence, problem solving skills and sense of team work to ensure that the care remains the best we can deliver to the patients and their families that we see and treat across NHS Dumfries and Galloway

Here’s hoping to a healthy and prosperous 2016

Helen Coles is an Advanced Nurse Practitioner within the Emergency Department at Dumfries and Galloway Royal Infirmary