The Patchwork Quilt by Valerie Douglas

A doctor once told me that I had a portfolio career.  As my working life as a nurse in the NHS draws to a close it seems to me more like a patchwork quilt, assembled from many knitted squares.  Beginning in a psychiatric rehabilitation ward, I moved to acute admission in the old Crichton.  I dipped in and out of that ward undertaking secondments: to the Clinical Research Department, a Lecturer/Practitioner role, Care of the Elderly, Patient Safety and Improvement.  Then full circle, I moved back to rehabilitation nursing, this time interwoven with forensic threads.  Knit one, purl one.

Recently I’ve been on a partnership working secondment, with seats on the IJB and the RCN Board.  I have needed to insert some elasticated fabric into my knitting, as this has stretched me in directions unlike anything experienced before.  

With retirement imminent it is inevitable that I reflect on the whole quilt, the completed work, and remember the dropped stitches, the unravelling I’ve seen, the piecing together, the mending.  Some squares have faded with time but others remain vivid.

The Quiet Man.  This inpatient was polite, smart, of late middle age.  He wore his depression like a waistcoat watch, well-hidden in a little pocket.  You could just catch a glint of it if you really looked.  One Friday he went home for the day.  This wasn’t unusual.  He would typically return before 9 pm.  When he didn’t appear, staff phoned him.  No answer.  They phoned his family.  No, he didn’t have plans to come home that day, he had informed them explicitly.  Alarm bells rang and rightly so.  He never returned.  He had chosen a way out of his deep, silent despair.  Our thoughts of course went out to his lovely family for their loss.  But today my thoughts are also for us, the staff who nursed him, the doctors who treated him, the domestics who cleaned his room, the ladies at medical records who received those final ward documents.  I wonder if they still mourn him like I do over twenty years later.

Miss M.  Mute, traumatised, psychotic, she hardly ate or slept.  I was on a spell of night duty and would sit by her bed, talking to her, after giving her medicine.  She would listen intently, not responding.  ‘Looks perplexed’ were the words used most often to describe her in nursing notes.  After about a week she was out of bed when I arrived for night shift.  She glided around the ward, keeping close to the walls, vigilant.  One evening I took chocolate éclair sweets in.  I gave three to the nurse and three to the nursing assistant, saying to Miss M as she passed, ‘I’m leaving these three sweets on the table for you.’  She neither slowed nor acknowledged me.  A short while later the nursing assistant bounded into the office, ‘She’s taken those sweets.’  In mental health nursing it is often not diagnostic tests that expose signs of improvement, but observation and engagement.  Nurses can usually pinpoint turning points – medication has started to work, trust has been gained – and I have never forgotten the night of the sweets.  Each Christmas I’m reminded of Miss M when I hang the tinsel angel she made for me before her discharge.

Nursing has presented me with many patterns to follow, using different weights and colours of wool, some challenging designs.  Although all secondments have been worthwhile, I’ve always chosen to return to hands on nursing, the role I rate the highest, the role I value, the one I will miss the most.  Knit one, purl one.

 Val Douglas RMN, DipN, BSc (Hons), MSc Research (nursing)

How to make a good death by Justine McCuaig

My Mum died on June 6^th 2017 at 11 45pm at home asleep beside my Father while he held her tight.

My overwhelming and lasting memory is of going up to offer Dad yet another cup of tea, (my family home by this time had become like a scene from Eastenders with endless tea becoming a cure all for our woes) and finding them both asleep in front of the telly, holding hands, as if it were any other night in their lives together. By this point, knowing mum was soon to leave us, I chose a whisky over tea while my sister drank Mum’s Tia Maria and we laughed at our naughtiness downstairs.

We had been caring for Mum for 4 months at home. She had been diagnosed with idiopathic pulmonary fibrosis a few years before and her lungs progressively stiffened up despite her objections and indignation at the condition. Everything else was in perfect working order!

Mum was very pragmatic about her diagnosis and we often talked about its progression together with and without my Father. I asked her when her condition worsened if she thought my Dad had “got it” and understood that she had terminal disease and was not going to recover. The next day I visited and she said “yes he’s got it….I sat him down and told him that I wanted buried in the garden and listed who I didn’t bloody want coming to the funeral  so you don’t need to worry about that anymore!”

Although as a family we liked our privacy from the outside world, we were not particularly shy or private people at home and regularly discussed all manner of things and shared experiences. No topics were ever out of bounds for us and I had the privilege of being raised by tolerant humanitarians with a good sense of humour and a love of dialogue, music and life. We have always been able to talk about the big things with ease, disease, mental illness, romantic woes, religion and politics but struggled with the smaller things and general displays of affection. We loved truly and where truly loved but it was unspoken generally and wrapped up with rather woolly “oh you knows”

Cuddling was not a regular thing either (for no good reason other than we didn’t really do it much) This physical distance completely disappeared when I began to nurse my Mum and provide her with regular personal care. I was more unsure about how I would feel about this than how she would feel about it even though as a nurse I was simply using the tools of my trade.  To my delight caring for Mum (and Dad) was one of the most wonderful experiences I have ever had.  The physical closeness and honesty was liberating for us both. We had so many laughs (normally about things we really shouldn’t laugh about!) Gift giving changed and although a commode wasn’t everyone’s idea of a great birthday present, my Mum loved it, especially with the balloon attached.

To be able to wash my Mum, do her hair, paint her nails all the time chatting about this and that with up to 5 grandchildren lying alongside her at “Granddads side “ was a unique shared experience which we all enjoyed up to the last week of her life. Grandchildren came and went as it suited them without obligation and new routines developed for us all which were played out wholly to our tune. Nail painting changed to pressure care and symptom control but there were no restrictions on visiting, no alien environment or hospital smells, no distance to travel, no reduction in privacy or dignity.

Just home – where the heart is, and where sitting on the bed is actively encouraged!

Of course we couldn’t do this without support. It was great that I was able to use my nurse’s tool box to be my family’s advocate, to explain things lost in translation and to explore mums options. However it was the cohesiveness of our systems, the excellent communication between teams and professionals actively hearing what the patient aspired to and facilitating those aspirations that really worked for my family and resulted in such a good death for my Mother

NHS Dumfries and Galloway has the most outstanding staff members across all disciplines. With thier input we can successfully choose our own package of care and be fully supported in that choice. Anticipatory care planning and social care integration have the potential to really transform the patient journey and is not something to be afraid of but rather to embrace.

 However all of these services need to be heavily invested in to meet the expected demand from   an aging population. Without continued investment and service development, NHS Dumfries and Galloway will not be able to fulfil this ambition and enjoy the success that my family had.

Mum was admitted to DGRI 3 months before she died as an emergency admission and was discharged from ward 7 with a complete package of palliative care and specialist community respiratory support within 32 hours.  All of her drugs and letters were ready at our agreed   discharge time, the domiciliary oxygen was arranged and delivered and referrals completed for the McMillan, Marie Curie Nursing services and Community Respiratory Specialist Care.  Her DNR was signed and she waved it under the nose of anyone who was even vaguely interested in reading it. It remained pride of place on the bedside dresser as it was very important to her that her intentions were known. Everything my Mum did was delivered with humour and even this got a comedy slant!

The Kirkcudbright District Nurses introduced themselves and ensured that their door was kept fully open for when we needed their help and support. They responded promptly to any requests and where always available at the end of the phone to discuss Mums needs as they arose. Our Specialist Respiratory Nurse visited regularly.  When Mum developed a chest infection he promptly liaised with the consultant from our dining room relaying Mums reluctance to be admitted but advocating   the need for her to receive appropriate treatment which could prevent her condition worsening. Although her condition was terminal   there were still things that could be done to minimise her symptoms and prolong the length of her wellbeing. Mum agreed that if things got rapidly worse she would potentially consider IV therapy in hospital but would initially hedge her bets with tablets, lots of tea and nebulisers. She started her antibiotics orally that afternoon and recovered and remained well   long enough to see her beloved swallows   return   from Africa to nest in the garage, enjoy the spring flowers from the garden and support the children through their exams.

The Occupational Therapist ensured Mum had all of the equipment she needed when she needed it. If a piece of kit was ordered it was generally   installed within 24 hours. The Equipment Delivery Staff ensured that we knew exactly how to use it after they had installed it and answered all questions fully and in a voice loud enough for my deaf Dad to hear! They ensured he knew who to contact in the event of any problems. Mum had everything she needed, a bath chair, a stair lift, a stand aid, a pressure bed.  Visiting relatives from the Deep South stood with mouths wide open in disbelief at the care and support my family were receiving and began to seriously consider relocation. After Mums death the equipment was collected promptly but respectfully and was almost symbolic of starting life without her.

We did need the District Nurse’s help more regularly in the days running up to her death and because they had developed a slow growing respectful relationship with my family they were welcomed in like old friends.  They encouraged me to be Justine the daughter rather than Justine the nurse which was invaluable advice. They looked after us all, and talked us through every stage or change in Mum’s condition. Most importantly Mum thought they were great and that is, of course because, they were.  She was so interested in people and life and living that she became just as invested in how they were doing as they were in her. This was especially true of the student who approached and completed her finals during mums care. She told Mum when she   successfully passed as she knew it was important to her to know despite Mums condition rendering her uncommunicative at that point.

However we all knew she was dead chuffed!

Mum received reflexology   and head and hand massage in her bedroom as part of her palliative care package which was a new experience for her and one she really appreciated. What she enjoyed as much as   the treatment was her was that she had another person to communicate with and to learn from. She loved engaging with people more than anything. It gave us all something to talk about too. Even then life remained interesting with new experiences to share.

When Mums condition deteriorated to the point of suffering the District Nurses and GP promptly began her syringe driver to minimise her symptoms. I had discussed this often and in detail when Mum asked about “what next” and she fully understood that when her symptoms were controlled this way, she would be less awake and aware. She made a very informed choice when the GP prescribed it and her consent made me feel content with that course of action. She had had enough. Any other GP may have been phased when she asked if he was “putting her down,” especially when after administering an injection she said “No, no I’ve changed my mind” with a wicked twinkle in her eye!” However Mums GP knew her well and knew that with her humour she was trying to make a difficult job easier for him.

The Marie Curie nurses would phone regularly to see if we needed help over night which was very comforting. In the end the nurses attended the family home twice. Once to administer breakthrough medication in the wee small hours on the day the syringe driver was started (all the way from Dumfries – a round trip of 60 miles) and the following night at 10pm for their inaugural sleep over. Mum died shortly before midnight that night and Dad then made the long walk to the spare bedroom to ask our guest to confirm that she had gone.  Having her there at that time was invaluable and over the next few hours we all chatted and laughed and cried while we waited for a registered nurse to certify Mums death.  The care and support we all received that night was beyond excellent . Mum stayed the night, there was no rush for her to go anywhere and we all spent time with her before she left us mid morning. Downstairs my sister and I repeatedly heard my Dad’s footsteps as he came and went into their bedroom to check that she was really gone.

And she had gone,  Mrs T had left the building. Although we were (and are) devastated we have all reflected our relief that she had suffered so little in the end and that she died where she wanted surrounded by the people she loved . Knowing this has filled our sad hearts with a warm feeling knowing we did right by her and in time this will be a great comfort to us.

Justine’s Mum and Dad on Crosby Beach 

Justine McCuaig is a Health protection Nurse Specialist at NHS Dumfries and Galloway

Reflections on Imperfections (In memory of Dr Johan Leuvennink, my friend) by Fanus Dreyer

While writing I am listening to Dozi, a troubadour who sings in Afrikaans and Zulu.

On Monday I attended the memorial service for my close friend, Johan Leuvennink, consultant psychiatrist, who died so suddenly. For the last two weeks I have been thinking about the paths we’re on and why these are so imperfect…

In December 2012 I had a knee replacement, necessary due to damage from playing rugby, jumping from aeroplanes and boulder hopping in canyons and on the Cape coast. It was 14 weeks before I could go back to work and where else would a knee recover more quickly than in the heat and dust of Africa. So we went to Zambia for teaching critical care and then to South Africa to visit family. As David Ball and Pete Armstrong returned from Lusaka to Dumfries I went south, with a stopover in Johannesburg. At O.R.Tambo’s Ocean Basket I ate Cape kingklip and calamari, with a glass of Durbanville chardonnay. My waiter was Pioneer, who recognised me from a visit the previous year, when about 10 of us descended on them for a meal. He asked me in detail what I did and so on, and then said “You have the greatest job. Not only are you able to save people’s lives, but you actually teach others to do the same“. I was humbled by Pioneer’s insight and very thankful for his words at a time when I didn’t feel like going back to work.

Pioneer’s words led to some serious thinking. Why then was I dreading to go back to my NHS job after only 3 months off? Well, I always feel that way after experiencing something of the heart and soul of Africa, but this time it was worse. Some things happened around the three weeks we spent in Zambia and South Africa. I received emails about critical incidents in patient care that I could not have influenced, but I was still asked to comment. On the first day back home I was phoned about students who had complained and I was asked to respond, even though I had not met these students. Somehow there is this perception that, if we just complain enough and change systems constantly, we will one day reach perfection. NO, it ain’t gonna happen!

In Tanzania in 2009 our guide, Cyprian, described the caricatures of all the different nations that he had taken on safari. We laughed at how he described Afrikaners, Germans, French and Japanese clients. He said that the British were those who would say “thank you very much, it was the most amazing trip of my life”, but on the feedback form they will always write one thing that should be better or different. Make no mistake, I always take complaints or concerns of those who “suffer under surgeons” very seriously, but simple moaning leaves me cold. I have just bought a car and, although it is great to have a new toy, it is not perfect for my requirements. My job is not perfect, nor is anything else in my life. So what! I’m happily cruising along through this life and can only stand and stare at the miracles it brings every day, again and again. We meet people who have suffered unimaginable losses and with severe disability and sorrow, and they continue to inspire me. I think Africa accepts life’s imperfections more easily. That is why Rwanda could move on and why South Africa had a peaceful transition. You also see that in the total lack of self-consciousness in the girl with a long scar on her face, in the man wearing a woman’s blouse and in the patient with the large goitre or fungating cancer. So my job is not perfect but Pioneer is not far off, it has perfect opportunity, and for that I am forever grateful.

…I had known Johan since he was my student in Tygerberg Hospital. He stood out because he asked challenging questions. And then we met again in Dumfries and shared some good times together, usually in serious discussion. We walked a difficult road together. I still cannot believe that he is gone and the question that remains in my head is “What price do we pay for the work we do?” I know that surgeons have a high rate of untimely deaths, and am sure the same goes for psychiatrists.

This took me back to thinking about the National Geographic picture of Dr Zbigniew Religa and his patient, taken after he did the first heart transplant in Poland in 1987, which took 23 hours. In the picture Dr Religa sits and observes his patient’s vital signs, absolutely drained but still alert for anything that could go wrong, while an exhausted assistant sleeps in the corner. Twenty five years later the patient, Tadeusz Zytkiewicz, holds the same iconic photograph of “giving everything”, but Dr Religa, his surgeon, had died in 2007. The patient had outlived the surgeon.

…Three years ago I asked Johan if he could teach me to play the piano. I have no talent and no ear for music but wanted to learn to play one song. He took on this challenge with his usual enthusiasm. After months of patience from him and practice by me I was able to play the right hand of this one special song, and this is still all I can play…

I see trees of green, red roses too
I see them bloom for me and you
And I think to myself what a wonderful world

I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself what a wonderful world

The colors of the rainbow so pretty in the sky
Are also on the faces of people going by
I see friends shaking hands saying how do you do
They’re really saying I love you…

I think that at the end there is only one question to answer and that is “Did you love enough?” I have no doubt that Johan could say “Yes, I did”….

Maybe perfection really lies in what we give, not in what we achieve.

 

Fanus Dreyer 

Consultant Surgeon

NHS Dumfries & Galloway. 

“Going that extra mile” by Sharon Shaw

Patient Centred Care

Being caring and compassionate is an unique talent and sometimes sadly often gets forgotten about and falls by the wayside. We are all human beings and sometimes we all need to take a step back and grasp how valuable our lives are and that of loved ones.

I want to share my story. This is the first time I have written a blog, so please be “patient” with me.

In November 2015 I started my new job in clinical education. I was excited and yet in a way I wanted to prove to myself and others how valuable education is in this forever changing healthcare environment.

Approximately 3 weeks into my new role, the Respiratory Team contacted me concerning a patient with a complex condition. It was a 59 year old male who had severe emphysema and required an Under Water Sealed Drain (UWSD) to try and reinflate his left lung. The damage was so severe it became evident that the UWSD could not be removed or his lung would continually, spontaneously collapse.

“IT WAS HIS LIFE LINE”.

I walked into the side room in Ward 12 to introduce myself. With hos blue eyes he gazed up at me looking slightly anxious. Giving him a good firm handshake, I smiled and said

“Hello John, my name is Sharon”

I’m a great believer in “non-verbals” as it delivers communication and initially builds upon a trusting relationship. And indeed it did as from then on it had a huge impact.

As my father always said…

“Sharon a good solid handshake goes a long way”.

John was palliative. He had not long retired and to get devastating news about his diagnosis and outcome was so sad. His ultimate wish was to get back home to spend the rest of his short life left with his beloved family.

I made a point of seeing John everyday in Dumfries and Galloway Royal Infirmary. It was essential to build up that relationship. During the 2 weeks I delivered education on how to care for a patient with an UWSD. Approximately 30 nurses received education, Kirkcudbright Hospital Staff, District Nurses and Rapid Response Team. As you can imagine there was a lot of anxiety, fear and uncertainty amongst the nurses. This was actually the first patient to get discharged to Kirkcudbright Hospital with a UWSD. John was fully aware of my role and was updated.

The time had come, John was ready for discharge. Understandably so, he was very anxious. I took the decision to actually go in the back of the ambulance with him to Kirkcudbright Hospital. Holding his hand and bantering away we both arrived to our destination. We were pleasantly greeted by the nursing staff. They knew John as he was a local from the town and had received care from them in the past.

His family were so supportive especially his daughter Michelle, whom I have now made a lifelong friend.

John managed to continue life for 7 months in Kirkcudbright Hospital. Unfortunately he did not get his wish to go home but in all fairness the care he received from the hospital staff made his last few months comfortable and to have that precious time with his family. He managed to celebrate his 60^th birthday with his family. It was an emotional, uplifting day.

I guess what I’m trying to say folks….

“Going that extra mile” was so successful and beneficial. I would certainly do it all again.

Thanks for taking time to read this.

Sharon Shaw is Clinical Educator for NHS Dumfries and Galloway

 

 

 

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

Life after Life by Thalakunte Muniraju

Why should the good things in us stop after death when there is great opportunity for life to continue after life? It is impossible to describe in words the emotional and physical trauma individuals with chronic organ failure experience. I am sure most of you have seen or come across someone whose life has been transformed for the better after organ transplantation.

Kidney failure needing dialysis reduces quality of life and survival significantly. A patient in his/her 30s with kidney failure needing dialysis has a similar chance of having heart disease compared to someone in their 80s without kidney failure. Dialysis replaces some of the functions of kidneys, but not all. Receiving dialysis is almost like having a part-time job; sometimes it can be more than a full-time job if we take into account all the dialysis-associated complications and procedures. To make matters worse, dialysis patients must adhere to lots of dietary and fluid restrictions. A friend of mine once told me that he only started appreciating the taste of water after starting dialysis.

Kidney transplantation is the only treatment which can cure and improve the quality of life and survival in these patients. Yes, kidney transplantation is not without risks and patients have to take lifelong medications to suppress their immune system. But the overall benefits are far superior to being on dialysis. Survival of transplant patients and kidneys has improved significantly – half of the kidneys transplanted from living and deceased donors are still working at 15- and 10-years respectively. One of the immensely satisfying things to see for us as clinicians is to see patients leading a normal life following transplantation.

With the exception of living donation, organ donation is only possible following a sudden, unexpected and most often premature death. We should never lose sight of the families who go through this and should do everything to support them. One of the ways to salvage something positive out of these dreadful events is through organ donation.

Three patients die everyday in the UK waiting for an organ. Over the last 10-years, the number of transplants being performed has increased substantially. Still, a huge gap exists between the numbers of patients active on the list and the number of patients being transplanted (see graphs below). The current UK strategy for organ donation and transplantation, Taking Organ Transplantation to 2020, emphasises the pressing need to reduce family refusal rates. It is disappointing that there has been no improvement in the overall consent (or authorisation) rate in 2014-15. NHS Blood and Transplant continue to devote considerable attention to improving the support that it is giving to families when the possibility of donation is raised.

On 1^st December 2015, Wales became the first UK country to introduce a “soft opt-out” system for organ donation. It will be interesting to see what impact this will have on the number of transplants in Wales in specific and subsequently, the UK as a whole. Earlier this year Scottish government said it would consider bringing forward new legislation on an “opt-out” system for organ donation.

Hopefully one day in the near future we will see an “opt-out” system in whole of UK, for the benefit of our patients with organ failure.

 

 

 

 

 

 

Registering online takes less than two minutes. After registration make sure that your family and friends know about your wishes. This is the only way to continuously increase the transplant activity, and give someone gift of life. Please consider giving life after life…

https://www.organdonation.nhs.uk/register-to-donate/

http://nhsbtmediaservices.blob.core.windows.net/organ-donation-assets/pdfs/activity_report_2014_15.pdfb

http://www.bts.org.uk

Dr Thalakunte Muniraju is a Consultant Nephrologist at NHS Dumfries and Galloway

 

 

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