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)

The Paper Boat by Patricia Cantley

I’ve been reading a lot recently about the word Frailty and its importance within Medicine for Older People. We see a lot of frail people and as geriatricians they are our core business both inside and outside the hospital.

Healthcare professionals have debated over the last few years how to define Frailty, and even how we might begin to measure it. It is no longer adequate simply to shrug and say “we know it when we see it”.

From a patient or relative’s point of view however, the word Frailty seems to be at best somewhat vague and at worst, derogatory and demotivating. When we ask patients how they feel about the word, whether in large surveys or on a one to one basis, they do not like it.

One strategy that I have found useful over the years, especially when talking to relatives of the patients under my care, is to paint a picture that they can relate to by using a simple analogy. I’m sure others have used similar techniques – indeed I learnt this one from a consultant colleague many years ago.

So when I am talking to a family member about their older relative, I sometimes liken their clinical situation to a fragile yet beautiful paper boat sailing round a pond of their choice.

A while back I used this particular strategy for a very elderly man under our care who was going through a very complex and unstable time. At one point, there seemed to be a lull in the medical winds that were buffeting his fragile frame and I sat down with his daughter to chat things through. She was desperately seeking reassurance, but also wanting honest facts about what to expect over the months to come.

She smiled as I described my image of a beautiful paper boat, brightly painted and currently sailing proudly in the sunshine on the still pond, giving pleasure to all around. I explained that the difficulty was in not knowing what weather was ahead, and the problems forecasting accurately. If the weather were to remain fair with barely a trace of wind, then there was no reason to think that the boat would go down and indeed it might sail on for quite a while. If, on the other hand, the wind got up, or worse, if it started to rain, that frail wee boat would go over quite quickly with little we could do to save it.

As younger and healthier individuals, we react more like little tug boats of wood and steel… we would simply bob up and down until the storm had passed. Though a big enough hurricane could be too much for us too…

The chat developed a bit more as we translated some of this into more medical language and formulated a plan over what would and wouldn’t be reasonable things to try, should that wee boat capsize over in a high wind. We agreed that we’d want to try as much as we could, maybe including intravenous therapy but that at the end, a call to the family rather than futile attempts at CPR would be the right strategy. I noted it all down, and his daughter undertook to update the rest of the family.

As is the way in modern medicine, our paths diverged and he was discharged from our service. I didn’t keep in touch, though I knew his daughter had my mobile that she could call if she wished.

Many months later, a text came through…

“Dearest Trisha, I am sending this sad message to you to let you know that last night the paper boat went down in a storm. It was all very sudden at the end, but we were well prepared, and for that we thank you.”

I called the patient’s daughter later that afternoon and we chatted about what had happened. I don’t think we used the word frail at any point in her father’s journey, but she knew what we meant, and I think it did help. It was also lovely to be able to talk afterwards and listen to how the last chapter of the story had unfolded. It is rare as hospital doctors that we get to do this kind of post bereavement support and for me, it was well worth while being home a little late (again) that evening.

Every doctor I’ve met has tales of when things go well, and we all have our share too of when they haven’t. We must never be complacent, and a strategy that works with one family may not work with another.

We need to learn a lot of facts as doctors, but there is also an important place for the use of stories in medicine. We can learn and teach what has worked for us, and consider how others might adopt and adapt similar approaches.

I had another text, more recently, from a previous trainee. Also a happy story, they wanted to tell me of a scenario in another hospital in another city, where they explained to a family the fragility of another paper boat. Intense medically focused discussions had failed to convey the precarious nature of the situation, but the visual image of a brightly painted origami boat had been something of a breakthrough. I was touched by the kindness of the younger doctor that they thought to feed back to their former teacher in this way.

I’m still not sure what the best way to define Frailty is, but I’ve tried a few ways of describing it in the clinical situation. I’d love to hear tips from other people, in particular from patients and relatives, about what has worked best for them.

Patricia Cantley works as a consultant physician in the Midlothian Hospital at Home Team, offering an alternative to hospital admission for frail and older patients. She also works in the Royal Infirmary in Edinburgh and in the Community Hospital in Midlothian. She tweets under her married name of Elliott as @Trisha_the_doc

This blog originally appeared on the British Geriatrics Society blogsite on the 9th July 2018. Many thanks to Patricia for the permission to republish on dghealth.

Get up, Get dressed, Get moving by Amy Conley

Think about an older person, someone in their eighties – let’s say it’s your Granma…

Your Granma lives in her own house; she’s not quite so good on her feet anymore, but she gets about OK.  Stairs are difficult but she manages – and she manages to get up and dressed, make her breakfast and her tea, feed her cat, read the paper, get to Tesco in the car with you.

Then your Granma gets ill – she has say, a chest infection.  She is admitted to hospital.  You pack her bag – nightie, toothbrush, comb.  She is admitted to the ward – she is poorly, needs antibiotics and a drip for a few days. So, on goes the nightie and your Granma is in bed; that’s what you do in hospital – you are poorly and tired and you need to rest in bed.

Your Granma is in bed in her single room.  She needs the toilet but doesn’t think she should get up by herself – she is a patient in a nightie so needs help.  But she can’t see very well or hear very well and can’t find her glasses or hearing aids.  She can’t find the buzzer to buzz the nurses and she can’t hear when they are near.   She thinks maybe she could get herself to the toilet, but she can’t see her walking sticks and is scared she will fall. 

Time passes.  Your Granma is incontinent in the bed.  She is embarrassed and frightened – what will the nurses think?

Now she is scared to drink and eat because she doesn’t want to need the toilet and be incontinent again.  And she doesn’t want to bother anyone.  The physio comes to see her, tries to get her up.  But she is still embarrassed and frightened.  She has no clothes to wear.  And she has only those foam slippers she got from the nurse.  So it’s best just to stay in bed.

Your Granma stays in bed for longer and longer.  There is nothing to do.  There is a TV but she can’t see it or hear it without her glasses and hearing aids.   She is getting mixed up now; she can’t remember when she came here or why or what day it is.  She thinks she can see cats in the corner of her room.  She still won’t eat, so she has no strength and feels weak. She doesn’t want to get up.  Her bottom and back hurt.  Her leg has swollen up – they said it is a blood clot.

The physios keep coming back.  They try to get her up; two of them struggle to get her to stand.  She is stuck in bed. 

Your Granma’s chest infection has been treated and she has no acute medical illness, but now she is immobile, confused, dehydrated, incontinent, her muscles are weak and she cannot walk anymore, or get herself washed or dressed. 

Your Granma is not going to manage at home anymore; she has to go to a care home.

 

“GET UP, GET DRESSED, GET MOVING”

At DGRI, we are launching our campaign on Monday 23rd July– the aim is help our patients maintain their function, mobility and independence while in hospital, and for them to return home as soon as possible, as able as possible.

 

WHY HAVE THIS CAMPAIGN?

• Most patients in hospital are over 65
• In hospital, older people spend up to 83% of their time in bed
• 65% of people’s functional ability declines during admission
• 60% immobile older patients in hospital have no medical reason to stay in bed
• If you are over 80, 10 days in hospital ages muscles by 10 years
• 1 week of bed rest equates to 10% muscle loss
• These changes are “deconditioning” –  “reconditioning” takes twice as long

WEARING YOUR PYJAMAS IN HOSPITAL

• Affects your confidence and self-esteem
• Changes how you interact with healthcare staff and other people
• Is usually unnecessary no matter why you are in hospital
• Doesn’t feel very dignified when you are trying to eat your dinner

 

STAYING IN BED IN YOUR PYJAMAS

• Reduces muscle strength
• Reduces confidence
• Reduces function
• Increases blood clots, delirium, pressure sores and infections
• Leads to reduced appetite, low mood and anxiety
• Reduces social interactions
• Lowers pain thresholds
• Can make blood pressure drop
• Causes constipation and incontinence

WHAT CAN HEALTHCARE STAFF DO?

• All of us can and should help patients get moving – nurses, doctors, AHPs, porters, domestic staff, pharmacists…
• Ask the patients how they normally get about and what they normally do
• Make sure patients can access buzzers, water, remote controls
• Encourage patients to get dressed and sit up in the chair

 

WHAT CAN PATIENTS DO?

• Tell us how you normally get about and get things done and what you need to help you
• Try to do things that you do at home – wash and dress, eat and drink on your own if able
• Sit up in your chair and for meals
• Drink lots
• If you can’t get out of bed, do little things – wiggle your toes, do a crossword – every little movement  helps

 

WHAT CAN VISITORS DO?

• Tell us what you do at home
• Bring in glasses, hearing aids and walking aids
• Bring in comfortable day clothes and well fitting shoes
• Encourage you to sit up in the chair and for meals
• Take you for a walk
• Bring in photos, books, puzzles, crosswords

THE BENEFITS

• Speeds recovery
• Reduces time in hospital
• Encourages patient and carer involvement in healthcare and recovery
• Helps to retain patients’ individuality and self-esteem
• Helps patients to quickly return home, mobile and functional

 

If you or your family are worried that it is not safe for you to get up or you might do the wrong thing – ASK US!  We will tell you what is safe and OK for you!

#endpjparalysis

#goinghome

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

‘What I am told I forget…… by the Renal Team

…what I am shown, I remember.

              …what I do, I understand.’

Confucius was credited with many words of wisdom in his 72-years.  I couldn’t vouch for the authenticity of them all – but if he did utter these words he was indeed a man before his time.

The truth behind these words was apparent to me at our recent Kidney Care Planning Education day. The Kidney Care Planning Service has undergone a bit of a re-incarnation in the last couple of years. Formerly known as the Pre-dialysis service, it is simply the care of patients with an eGFR of less than 20mls/min, as they are more likely to progress to end stage kidney failure and need to plan for such an eventuality. However, the term ‘pre-dialysis’ implies that these people are all heading towards dialysis – when in fact many will choose an alternative path. The younger fitter patients should be hoping to get a pre-emptive kidney transplant from a relative or friend, while some of our elderly, frailer patients may well not benefit from dialysis at all and will survive just as long on conservative (nondialytic) care. So when Tanya Harkness took up the mantle of lead Nurse for the pre-dialysis service, she quite rightly felt a new name was required. Many renal units use the term Low Clearance Clinics, but a straw poll of non-renal staff suggested this was more reminiscent of a rehabilitation clinic for inattentive bus drivers… So, after much discussion amongst the renal team, the more accurately named Kidney Care Planning (KCP) service was born.

The aim of the service remains unchanged and while we do take bloods and treat symptoms, easily 80% of what we do is talk. More specifically we provide as much information as we can to help every person decide which treatment option is going to suit them best. We do this with clinic visits and home visits. We provide information leaflets, website addresses and even YouTube videos – all with the aim of imparting information. Yet still we are sometimes asked a question that blindsides us – that either leaves us thinking ‘How did you not know that from all the conversations we have had?’  or ‘Crikey- that’s a good question that I have no idea how to answer!’ Because at the end of the day none of us handing out this information have ever experienced what they are going through – the actual treatments, the fear and anxiety, the dread of what their lives will become or the understandable desire to block it all out and pretend it’s not happening.

Which brings me back to Confucius! The subject of teaching is vast, with as many different approaches as there are pizza toppings. Yet 500 years BC, Confucius nailed it with this simple truth – when we actually do something, we come to understand it. So who better to teach our patients, than other patients who have been in the same boat.

We have held education days in the past, usually in a hotel function room with talks given by members of staff. Tanya was keen to resurrect the concept, but made it quite clear from the outset that there was ‘No way on God’s earth’ I think was the phrase that she was ‘EVER’ standing up in front of a room full of people to give a power point presentation. (Why not, I have no idea as I am sure she would be excellent….but there we are!)

So a new format was devised between the whole community team – a less formal approach, like an open day, where patients could turn up and wander at will from room to room – talk to the team leads, watch demonstrations, see the equipment and most importantly meet other patients.

The date was chosen to coincide with a visit from Ewen Maclean, Kidney Care UK Patient Support and Advocacy Office, Scotland. Ewen, himself a renal patient, is a mine of information about the support available to kidney patients, grants and how to apply for them and the political landscape that shapes kidney care in the UK.

We no longer had need of a hotel function suite – if there is one thing we are not short of at Mountainhall it’s space! (And the parking is pretty easy too – sorry!!) So, we sent a personal invitation to all our KCP patients, laid on refreshments and opened up the old pre-assessment unit for the day.

The Renal Community Team (Left to right): Fiona Gardiner (Renal Dietitian), Robert McLemon (Transplant) Ian Mottram (Haemodialysis – both home and in-centre), Wendy Brown (Peritoneal Dialysis) Margaret McDonald (Clinic Health Care Assistant & Phlebotomist), Linda Stiff (Vascular Access), & Tanya Harkness (Kidney care planning).

As well as written information everyone had something practical for patients who attended and the responses we had were truly illuminating. Ian had a haemodialysis machine with all the lines and bucket of dialysis fluid set up and received the comment ‘Oh, I didn’t realise it would be so small-I assumed it’d be really big.’ And why not –historically dialysis machines took up a whole room, which must be a really intimidating thought if you are going to be hooked up to one- but it has NEVER occurred to me to comment on the size of a dialysis machine in my many dialysis related conversations.

Robert had asked 3 transplant patients, with more than 50-years of experience between them to attend. I am not sure if any of them showed their scars where the transplant was placed but they had experienced all the ups and downs of transplantation and immunosuppressants so there was no glossing over the bad bits.

Linda was showing patients how to feel  their fistula and what to listen for – explaining how the noise it makes can change if a stenosis is forming – and she was able to give those with a fistula their own stethoscope to involve them in their own fistula care.

Our renal dietitian was also on hand to give practical advice on managing fluid balance, as well as providing visual aids on potassium, phosphate and salt restrictions-something that renal patients universally struggle with!

One of the biggest successes of the day came from Wendy who had persuaded one of her Peritoneal Dialysis (PD) patients & their families to come and chat so they finally actually knew what the PD catheter looked like when it was inserted and could see for themselves how an exchange worked. But more importantly they could ask someone having the treatment what it felt like, how it impacted on their lives, whether it interfered with their sleep, whether it actually helped! One of our patients who had been set on coming to the hospital for haemodialysis when his time comes, has now changed his mind. We have been sure for many reasons that he would be best suited to PD, but fear was driving his decision. One hour watching a gentleman of his own age performing an exchange and listening to his stories of how life continues almost as normal around PD, has achieved what 5-years of reassurance from us could not…

The feedback Tanya received was overwhelmingly positive, but patients are generally nice, so it is the more subtle signs that have persuaded us this is the right approach. The questions and comments patients have since made in clinic prove that they have valued and retained some of the information they learnt that day. One patient commented how reassuring it was to see dialysis patients who looked well and still lived a normal life. And I hope through this some of the fear for the future has abated.

I expect in the future we will still be blindsided by hitherto unasked questions, but it is not only the patients who are learning, as I finish with yet another Confucius quote:

‘He who knows all the answers, has not been asked all the questions!’

We would like to express our sincere gratitude for all the patients and families who came that day, especially for those who came to share their experiences with patients in the early stages of their kidney care planning journey. We are also grateful for the patients who gave their consent for us to take photographs and use them in this blog.  We hope to make “Kidney Care Planning Education day” an annual event from now on.

 

Other useful renal websites:

Patient focussed resources:

Kidney Patients UK / The National Kidney Federation, the largest kidney patient charity in the UK, run by kidney patients for kidney patients, website provides lots of useful information.

Kidney Care UK – formerly the British kidney patient association, very helpful brochures available online.

Think Kidneys – NHS England’s campaign to raise awareness of the importance of kidney disease. Lots of useful resources can be accessed with just a few clicks from this page.

Clinician focussed resources:

Renal Fellow Network – A USA based website with worldwide contributions distilling vast amounts of renal knowledge into bitesized articles, a great resource to start learning about renal medicine.

UKidney – online education on Nephrology, hypertension and kidney transplant.

#NephJC is a fortnightly Twitter-based Nephrology Journal club with visual abstracts, free access to the articles provided by major journals and regularly includes participation by the authors and other worldwide experts in the field.

 

This blog was written by Dr Alison Almond, Associate Specialist in Nephrology, with contribution from rest of the Renal Team, NHS Dumfries and Galloway.

 

Dietitians do Prevention by Laura King

Next week sees the return of Dietitians’ week and the theme this year is ‘Dietitians do Prevention’ with each day having sub-themes. Follow #DietitiansWeek on Twitter, Facebook and Instagram for some insights into our involvement in a wide and varied range of preventative activities.

Here in NHS D&G we have dietetic teams working across these areas which may come as surprise to the majority of folk working in the acute hospital who perhaps associate us mainly with artificial feeding and oral nutritional supplements for those who have scored 2 or more when nutritional screening is done on the wards.

As a small team we recognise that we have to play a role in educating and enabling patients, their families and carers to prevent over and under nutrition by supporting self-management, the dietitian can’t come shopping with you, cook your meals and help you to eat them and make the best choices, so we have to rely on using our communication skills to educate and inform patients and those close to them to help have a healthy, balanced diet that meets their needs.

We factor in ‘what matters to you’ and our assessments incorporate a huge range of factors as this poster illustrates:

Our Team works in the following areas all of which have significant roles to play in prevention:

Community Nutrition Support  (Kerry, Alexandra, Jackie, Jennifer, Lis, Dillon and Carole) – We provide practical, evidence based dietary advice, specifically tailored to each individual. Through dietary advice we aim to prevent and treat a wide range of medical conditions and empower people to make appropriate diet and lifestyle choices. Community Dietitians see patients in a variety of settings including community hospitals, nursing and residential homes, clinics and patient’s own homes. Our role identifies, prevents and manages malnutrition in the community. We liase with individuals to create realistic and achievable goals to optimise/improve their dietary intake.

Various medical conditions require an individual to be provided with their nutrition via a tube. We are responsible for managing these patients in the community, either in their own home or in a nursing home/community hospital setting.

We deliver educational talks on various topics including cardiac rehabilitation, stroke, Parkinsons disease and pulmonary rehabilitation.

Renal (Fiona) – Supporting patients with advanced kidney disease in managing complex nutritional requirements. Preventing further complications that can arise from inability to excrete electrolytes and fluid overload as well as avoiding weight and muscle loss for this group of patients who have increased requirements for protein once dialysis has commenced.

Gastro (Gemma and Sarah) – Preventing complications from poor management of coeliac disease such as the obvious GI disturbances through to the ‘hidden’ consequences such as increased risk of bowel cancer and oesteoporosis. Supporting patients living with inflammatory bowel disease to manage their symptoms and optimise their health and well being. Preventing the often crippling effects of irritable bowel syndrome by supporting patients to use the low FODMAP diet to identify trigger foods and modify their diets in a safe and sustainable way.  Preventing malnutrition in liver disease which is often masked by fluid shifts.

Paediatrics (Mhari, Anne and Tracey)  – Supporting parents & their child in managing children with complex needs, tube feeding, diabetes, gastroenterology issues, cystic fibrosis, weight management, faltering growth and allergies – preventing short and long term consequences of under nutrition.

Diabetes (Katy, Nicola, Sally, Sheena, Wendy): We are an integral part of the diabetes multi-disciplinary team providing a dynamic and evidence based service. We deliver quality assured education, and aim to support patient driven care and safe self management to those living with diabetes and their family. We also provide continuing education and support for health care professionals working with individuals with diabetes.

Weight Management (Katy, Nicola, Sally, Sheena, Wendy): We provide person centred, safe and evidence based advice to individuals with complex needs and requirements. This encompasses a variety of approaches to help aid weight loss and improve quality of life.

Mental Health and eating disorders (Sam and James) – Supporting recovery from mental health crises and from the consequences of living with disordered eating behaviours.

Catering (Debbie)- Working with Catering to achieve menus for inpatients across the region that offer a varied, balanced diet to support their recovery and prevent complications such as poor wound healing and  pressure ulcers. Also ensuring guidance for Catering teams to create therapeutic or special menus for patients’ individual dietary requirements. Training staff who make and deliver food, fluid and nutritional care to patients in hospital.

Acute (Laura, Anneka, Laura, Jennifer, Laura and Sheree) – seeing patients identified as being at risk of undernutrition to assess their individual needs and support recovery. Preventing increased length of stay, poor wound healing, pressure ulcers and other complications of malnutrition and providing advice for discharge to help patients stay well and continue their recovery once home with or without the support of the community dietitians as appropriate.

All this activity is coordinated and supported by our Head of Dietetics (Lorna).

The acute team are planning to pilot some staff education sessions on B3 and D7 to support ward staff in preventing malnutrition as well as identifying the patients who need our one-to-one support, so please get in touch with Dietetics on 01387 241568 if you would like to know more, want to arrange any training on your wards or if you have any questions about this blog post and what we do.

Meanwhile here are some pictures of the acute team (Anneka, Jennifer, Laura and Laura) ….

Laura King is Lead Acute Dietitian at Dumfries and Galloway Royal Infirmary

What Matters by Ken Donaldson & Alastair McAlpine

I recognise that it is a bit cheeky of me to put my name to this as I haven’t written any of it. A few months back I was scrolling through Twitter and came upon this thread that really moved me. The messages are simple yet immensely powerful. I have therefore simply taken some screenshots from Twitter and published them here. As you can see this is by a Doctor called Alastair McAlpine who is a Palliative Paediatrician in Cape Town, South Africa. Read on…..

Cant Thank Everyone Enough

You don’t have to look very far these days to realise that the NHS is under significant pressure; the local bulletins, national news and local papers are all talking about ‘Winter Pressures’ and ‘Flu Outbreaks.’ This, along with staff shortages and capacity issues, would make many of us dread going in to hospital or having a loved one admitted however I recently had to witness my husband spend the festive period in the new DGRI and I was so impressed by his, and my, care that I wanted to write about it.

On the 19th of December my husband was referred up to X-Ray for a CXR. This rapidly became a CT scan and then direct admission to the Combined Assessment Unit. This itself was a massive shock for all of us and a very scary time. However the staff in X-ray were amazing and made a frightening experience a tiny bit more acceptable by their kindness and attention. Thank you to all of them.

When we arrived on CAU it was obvious that it was a very busy place. For the staff to be working under this pressure in a new environment beggars belief but they did so with equanimity and charm. The care my husband got was excellent and I wish to thank Moira and all the other nurses who were fantastic as well as the Health Care Support Workers (many cups of tea which were never too much bother) and also Drs Ali and Oates. Dr Oates your visit on Christmas Day meant a great deal to us.

After CAU we moved up to Ward B2 and the outstanding care continued. I came in at 8.30am and left at 9pm and having a single room and open visiting meant I was able to stay with my Husband at all times which meant so much to us especially during this time of uncertainty. We could cry in private and talk in a way we could never have in a 4 bedded bay. Once again the staff were amazing – all the staff nurses, HCSWs and Domestics got used to seeing me around and, despite being extremely busy over Christmas and New Year, catered to our needs. They brought blankets and cups of tea – the small things which can mean so much – without us having to ask, in fact they were so busy we would not have asked for anything. Dr Gysin listened to our moans with patience and kindness and ensured that my husband got home as soon as possible, just after New Year.

We have just started a journey which will now mean trips to Edinburgh for more tests and possible treatment. This was always going to be a hard time but the caring and compassion we experienced whilst in DGRI over the festive period has made it that little more bearable.

Thank you

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

Outpatient Parenteral Antimicrobial Therapy (OPAT) – from Cellulitis to Meningioma by Audrey Morris and Shirley Buchan

OPAT as a service has been in use in many countries for the last 30 years. It is a method of delivering intra-venous antimicrobial therapy in an outpatient setting, as an alternative to remaining an inpatient.

The advantages of providing this service for the patient means that they have a reduced hospital stay and can return home and rehabilitate in their own environment. In certain cases the patient can continue to work whilst receiving IV antimicrobial therapy therefore causing them minimal disruption to their daily life. Psychologically the patient feels happier, eats better, sleeps better and is more likely to recover quicker in their own home.

In DGRI the service started in 2012 under the “What if?” project. Its main aim at this point was treatment of non-complicated cellulitis leading to the reduction of patient admissions for short term IV antimicrobials. In the intervening years we have developed to become more involved with complicated infections requiring longer lengths of treatment i.e. up to 12 weeks of IV antimicrobials, but the patient is otherwise fit enough return home.

 
From January 2016 to the end of March 2017 we have released 1419 beds, an average of 3.2 per day. We have treated patients with Cellulitis, Osteomyelitis, Infected Joint Replacements, ESBL, UTI’s, Pseudomonas, Osteoradionecrosis, Lyme disease, Endocarditis, Discitis, Peripheral Vascular Disease, Actinomycosis, SAB, Urosepsis, E-Coli ESBL and Meningioma.

 

Why do we need OPAT?

 
In December 2015 a 30 year old man, who we will call John, was referred to us. He is a high functioning gentleman with Spina bifida who regularly competes in Shot Putt events, all over the World. He had been admitted 6 weeks previously with an infection of his hip. He was clinically improving and ready for home. His family were also keen for his discharge. On discharge John was keen to return to weekly training but due the nature of his infection this had to be put on hold. He attended the clinic daily for 12 weeks either at Dumfries or nearer his home at Castle Douglas Community Hospital, even attending on Christmas day. John had a Hickman line in-site and he decided that in order to assist us he would dress according to which lumen we were using, red top red lumen white top white lumen. He made a good recovery and was discharged from us a year ago. John still phones us now and again and had informed us he is back to full fitness, competing again and even throwing further than before. His one regret he told us, was that due to illness he was not selected for last year’s Paralympics but he is working hard to go the next event in 2020.
So why do we need OPAT? To give people like John an effective patient-focused service as good as inpatient care in an out-patient environment. Our aim is to provide patient centred care nearer to home. In some cases we train the patient or their relative/carer to administer IV antimicrobials in their own home, leading to increased independence and putting the patient at the centre of their own care.

 
Main aims of OPAT.

 
Clinical
To provide a high quality efficient clinical service using robust pathways, guidelines and protocols.
Reduce inpatient time and therefore reduce the risk of hospital acquired infections.
Develop the service to meet the changing demands on an overstretched service. With the opening of the new hospital imminent and the call for care nearer to home OPAT can help reduce demands on beds.
Patient.
Improved quality of life for patients. They eat better, sleep better and generally feel better in the own home environment.
Increase patient involvement in delivery of care, continuity of care and communication.
Provide ongoing support at home and utilise a pathway for re-admission if required.
Organisational.
Reduce the length of inpatient stays therefore utilising acute beds more efficiently.
Structured pathway from referral to discharge.
Staff development.

Patient journey from Inpatient to OPAT patient.

 
We aim to make the transition from inpatient to OPAT patient as quick and painless as possible but have to follow guidelines. Once a patient has been identified by their Consultant as a potential OPAT patient the first step is to complete an SBAR referral form (In Beacon use ‘search for document’ option). On receipt of this we visit the patient to assess them and their needs for OPAT. There are certain criteria which must be met but these are listed on our SBAR referral form and should be considered prior to referral.
The patient is then seen by our Consultant and the OPAT nurse team. If they are suitable and want to become an OPAT patient then the discharge process can begin.
So in summary OPAT provides patient centred care led by a small dedicated team. It clearly reduces the length of inpatient stays, which can be from 2 days to 12 weeks. Patients are very much involved in the method of delivery of their care, they can opt to be trained to do it themselves at home or we try to deliver care as near to their home as possible. We work around their commitments e.g. an elderly patient who has carers in the morning can get a later appointment or in the case of the patient who continues to work we can see them early in the morning to allow then to get to work. Patients feel better at home, they sleep better, eat better and psychologically feel better. They are more in control of their treatment and have continuity of care.

In the words of one of our patients we “made a bad situation better”.

Audrey Morris & Shirley Buchan are Clinical Nurse Specialists in the OPAT team.

The Pneumonia in Bed 5 by Sian Finlay

Although it is sometimes easy to forget it amongst the busyness of front line clinical duties, I am a person.  I suspect many of you are too.  Occasionally I am unwell, but I consistently find that I still remain a person during this period – I have never yet become a disease!  So why is it that when patients come into our care, we so often default to calling them by their diagnosis instead of their name?  Go onto any ward and I guarantee it will not be long before you hear someone described as ‘The Chest Pain’ or ‘The Pneumonia’.  Many handovers will include phrases such as ‘He’s a UTI’.

No, he isn’t! He’s a PERSON who has a UTI!

A common (and potentially even worse) variant of this is the ‘bed number’ name, exemplified by ‘Bed 3 needs the commode!’  Sometimes attempts are made to justify this practice with the excuse that it protects confidentiality, but let’s be honest here.  The truth is that it simply demands more mental effort to remember the patient’s name and we are taking a short cut.  All very understandable in a busy environment, and I really don’t blame anyone.  You might think it is just semantics anyway – what does it matter if we call someone ‘The GI bleeder’?  Well I argue that it does matter.   More than you think.  These patients are people, no less complex and emotional and fragile than you or me.  By depersonalising them, we are subtly starting down a path which allows us to forget this; which allows us to view them as tasks in our day rather than the individuals they are.  If you are unconvinced, try this little exercise; read these 2 sentences and see if they elicit the same emotional response in you:

Bed 5 is agitated.

Tommy is agitated.

Would you agree that the second sentence immediately makes us feel more empathy and compassion towards its subject?

Many people will be aware of the late Kate Granger, the inspirational doctor who responded to her diagnosis of terminal cancer by establishing the ‘Hello, my name is..’ campaign.  Sadly Kate died last year, but her campaign lives on and has touched many of us in the healthcare profession.  But Kate’s work didn’t begin and end with wearing a smiley badge with our name on it; it is in essence about remembering the humanity of our patients and treating them as fellow human beings.  And I can only imagine Kate’s fiery reaction if she ever overheard herself being referred to as ‘Bed 5’!!

But we are all under pressure.  What if we genuinely can’t remember the patient’s name and are just trying to communicate information quickly?  Surely that doesn’t make us uncaring?  Of course it doesn’t, but in times of acute amnesia, we could at least say ‘the man with pneumonia’ rather than ‘the pneumonia’.  And that should only be a holding measure until we can remember his actual name – surely essential for safe communication anyway!

I hope I have convinced you that words do matter.  The phrases we use set the whole tone for the level of kindness and empathy we expect in our clinical areas.  So if any of this resonates with you, I hope you will lead by example.  Look at your patients and remember they have hopes and fears and histories and personalities…and almost always names!!

Sian Finlay (aka ‘The Migraine on ward 7’) Acute Physician and Clinical Director for Medicine at NHS Dumfries and Galloway