‘Docere’ by Sonia Cherian

The word ‘Doctor’ is the agentive noun of the Latin verb Docere which means ‘to teach’. The title ‘Doctor’ refers to a person who is recognised to have acquired sufficient knowledge in a subject to be a teacher of that subject. The role of the doctor as a teacher helps educate patients about their condition. A well-informed patient is crucial to the success of any treatment plan. In an era of increasing demands on the healthcare system coupled with  changing patient expectations, the doctor’s role as a teacher has a unique significance.

The supreme court ruling in the Montgomery case (Montgomery v Lanarkshire Health Board, 2015) was a watershed moment from a medicolegal perspective. Mrs Montgomery, a small built diabetic patient had complications during a vaginal delivery which resulted in her son being born with severe disabilities. The case hinged on whether the health board had provided her with all the information which could have helped her make a decision between a normal delivery or a caesarean section. Her obstetrician felt that the risks of shoulder dystocia during normal labour was not significant enough to discuss with her thinking that this information may have resulted in the patient choosing a caesarean section which had its own risks. The supreme court felt that had the risks been explained fully to the patient, she would have opted for a caesarean section and the baby would have been born unharmed. This ruling established that a patient should be told whatever they want to know, not what the doctor thinks they should be told. Mrs Montgomery was awarded a compensation of £5.25 million and the ruling fundamentally changed the law on decision making with the transition from ‘medical paternalism’ to ‘patient autonomy’. The ruling makes it clear that any intervention must be based on a shared decision-making process ensuring the patient is aware of all options and supported in making an informed choice by their healthcare professional.

The General Medical Council (GMC) document on Good medical practice advises to work in partnership with patients:

• You must listen to patients, take account of their views, and respond honestly to their questions.
• You must give patients the information they want or need to know in a way they can understand. You should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.
• You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.

(https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/good-medical-practice/domain-3—communication-partnership-and-teamwork#paragraph-46)

The Realistic Medicine agenda led by the Chief Medical Officer (CMO) of Scotland makes shared decision making and a personalised approach to care its key themes. (https://www.gov.scot/publications/practising-realistic-medicine/)

‘The King’s Fund’ research recommends that patients should be given a chance to take an active role in decisions about their care and treatment by providing the right opportunities, information and support. Services should reflect the needs of patients by meaningfully involving patients and carers in service commissioning, planning, design and improvement. (https://www.kingsfund.org.uk/publications/shared-responsibility-health)

An informed patient can positively contribute to decision making regarding a personalised approach to his or her treatment. This would also mean that patients are more open to share the responsibility of these decisions and be prepared to live with the consequences of their choices thus reducing the risk of complaints and litigation. Patient decisions are not only influenced by medical considerations but also by non-clinical issues which are of relevance to that individual patient. Values, beliefs and life experiences that have a personal significance can influence choices. Our role as clinicians is to support the patient in the decision-making process by providing expert medical advice through a dialogue. Unlike emergency situations where decisions have to be made quickly to save the life or limb of a patient, the vast majority of treatment decisions are taken in primary care or in an elective setting in secondary care. Many conditions have a variety of treatment options, each with its own benefits and risks. In some situations, having ‘no treatment’ is also a reasonable option.

Many patients are well-researched about their condition having read various articles on ‘Google search’. However, for a non-medical lay person to comprehend the vast, often confusing and sometimes contradictory online information can be challenging. This may leave patients with incomplete and out of context information. Hence the information that the patient could assimilate online is quite different from the knowledge that he or she needs to make personalised treatment choices. The clinician has the unique role as a teacher to help transform the information the patient has into knowledge whereby safe personal choices on treatment could be made.

Discussion regarding the various methods of Patient education is a topic on its own and is beyond the scope of this blog. Though innovative ways to deliver succinct information using digital media seems to be the way forward, these would never replace the warmth and compassion of a caring competent clinician who would help patients make the right balanced choices. This would only be possible with the provision of time and resources to improve meaningful information sharing during consultations.

The CMO’s annual report (2016-17) acknowledges that the main barrier to healthcare professionals having more in-depth discussions with patients is the issue of time. “Simply offering the standard treatment or investigation may be quicker, but not necessarily what is in the patients’ individual best interests. It is essential that in order to provide high quality, personalised care clinicians are in a position to make the time to have these important discussions. If we are able to move towards engaging in these conversations as a part of routine practice, it is likely this will in some circumstances save time where patients decide against investigations or treatments that they do not feel are right for them.”

The second Citizens’ Panel Survey (August 2017) revealed that the behaviour/style of the doctor and how busy they are (or are perceived to be) had an impact on patients’ inclination to ask questions. The current legal and regulatory requirements make it the responsibility of the clinician to provide adequate time to the patient so that they are well informed prior to making a decision.  However, the Scottish Public Service Ombudsman (SPSO) has commented in the CMO’s Annual report (2016-17) that this responsibility is not that of the clinician alone. This process would require policy changes within the organisation and a change in culture that encourages and fosters patient centric multi-disciplinary team working.

The GMC guidance, the Supreme court ruling, the concepts of Shared decision-making, Patient centric care and Realistic medicine all point to the pivotal role of patient education  thus highlighting the importance of what it truly means to be a doctor : ‘A Teacher !’

Therefore, let us all remember to ‘teach before we treat !’ and support each other in patient education with the ultimate aim of delivering holistic patient care.

 

Dr. Sonia Cherian is a GP at NHS Dumfries and Galloway as well as a GP Appraiser and CPD Adviser at NHS Education for Scotland

 

 

 

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.

 

Cathy’s Journey by Amy Conley

Friday night, admissions unit is where we first met Cathy……

I say met; we heard her before we met her – Cathy was shouting out, incoherent, clearly agitated. In her room, we found a tiny lady lost in a huge nightie, scrunched up on the bed, clinging onto the bedrail.  Cathy was 95, frightened and distressed.

Cathy had been transferred from another hospital, for assessment of pain.  It was impossible to know if Cathy was in pain or not – she couldn’t tell us.

We looked at her notes…

With a diagnosis of dementia and arthritis, Cathy had been living fairly independently with carer support, hadn’t been in hospital for some years.

A few weeks before, carers worried that Cathy may have fallen, an ambulance was called.  Cathy went to ED – no broken bones, but concern that Cathy couldn’t mobilise safely resulted in admission.

Over the next 6 weeks, Cathy was moved seven times between three different hospitals, from community to acute and back; staff worried about pain, falls and possible injuries, worried they were missing something, worried that more tests were needed…

Over this time, staff reported increasing difficulty with Cathy’s behaviours and confusion; she was distressed, agitated and uncooperative. Other patients were frightened.  Staff felt unable to manage.  Cathy was prescribed sedation.

Cathy by now was very confused, unable to communicate what she needed, not eating, not drinking.  She had become incontinent.

Back to Friday night…….

The sight of Cathy was heart-breaking; crying out, unable to tell us why, unable to understand what we were doing. She was dehydrated, in pain and encumbered by various medical contraptions.

We talked to Cathy’s family.  We decided that Cathy didn’t need any more interventions or hospital moves.  We did our best and made her comfortable.

Cathy died six days later…

 

Cathy, like many people admitted to hospital, was frail; she was frail before she came to hospital that first time.

If we had recognised her frailty at the hospital’s front door and intervened, well, perhaps Cathy’s story might have been different – different conversations, different interventions, different decisions and different plans made.

We talk a lot about frailty but it’s not always easy to explain or to understand.  Frailty is one of those words that get bandied about but what do we mean when we call someone frail?

The dictionary definition is “the condition of being weak and delicate”, something we all feel at times, but not really helpful in identifying frailty in our patients.

Within medicine, after years of vagueness and uncertainty, we have defined frailty as “the reduced ability to withstand illness without loss of function”.

 So……

A minor illness or injury, that would be no more than troublesome to you or I, affects a frail person more profoundly, leaving them struggling to walk, to wash or to dress, to eat or to communicate.

In reality though, how do we recognise the frail patient?  Does it matter?  Does it make any difference?

Age alone does not make people frail – people don’t become frail simply because they live too long.  Frailty doesn’t come with a diagnostic test, but there are signs we can look for – older people, with cognitive problems, mobility problems or functional problems, people on many medications or who live in care homes.  People who present to us with falls, incontinence or confusion.

“Frailty is everyone’s business”

The population is getting older and frailer, particularly here in Dumfries and Galloway.

Older, frail people have higher demands on health and social care services and more unplanned hospital admissions.  Once admitted, frail people are more susceptible to hospital-acquired infections, delirium, nutritional problems, falls and skincare issues.

In comparison to other patients, frail elderly patients are more likely to have prolonged hospital stays, to lose their mobility and functional abilities; they are more likely to be admitted to residential care, more likely to die.

I am a geriatrician.  I’m not at the glamorous end of medicine and I don’t have a bag full of fancy equipment, tests and treatments.  But within our medical specialty, we do have one intervention that has been shown to improve outcomes for the frail elderly –Comprehensive Geriatric Assessment

CGA means that frail older people are much more likely to be well and living at home 12 months after admission, and much less likely to be admitted to care homes or to die within those twelve months.

CGA is a multidisciplinary assessment of a patient and their physical, psychological and functional needs.  It allows us to develop a personalised, holistic and integrated plan for that patient’s care, now and in the future.  We think about how patients walk, talk, eat, drink, see, hear, think, remember, socialise, mobilise, and take their medications.  We think about how we can make all of those things better and easier for frail elderly people and their carers and families.

We all need to understand and recognise frailty.  Think about it, see it and talk about it, and allow a person’s frailty to influence decisions for their care and future.

Over 18 months we are working collaboratively with other health boards and Health Improvement Scotland to improve recognition of frailty at the front door.

Hopefully, if we get it right we can influence a better outcome, one that recognises and considers the specialist needs of our frail elderly people, one that supports them to continue to live happily and safely in a place that they can call home…

 

“We’ve put more effort into helping folks reach old age than into helping them enjoy it…”

Frank A. Clark, American Politician 1860-1936

 

If you have an interest in frailty and want more information or to become involved in our project please contact   amy.conley@nhs.net or lorna.carr2@nhs.net

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

 

 

 

 

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

Tour de Finance by Jeff Ace

This summer, unlike the many thousands of fellow Welsh folk heading south to France for one of our regular appearances in a major football tournament, I decided to head west, then east, then sort of north east. Together with our Finance Director, Katy Lewis, I recently undertook a tour of the region to try to talk directly to as many staff as possible about the challenges we were facing and to hear first hand their experiences and ideas for improvement.

In three days we travelled over 400 miles, met over 400 staff and heard from nurses, AHPs, domestics, GPs, consultants and others on issues ranging as wide as the region itself. At a number of the meetings, it was great to see social work staff in attendance, reflecting our ever closer working relationships.

I asked Katy to open each session with a presentation on the financial situation – my thinking being that pretty much anything I then said would come as light relief. The 2016/17 numbers are grim and substantially worse than anything we’ve faced up until now. In summary, we estimate our costs will increase by around £16.5M in the year (largely driven by drug cost increases and pay / price inflation) whilst the increase in our allocation for health services is around £3.6M. The gap between these figures of about £13M (or 5%ish of our running costs) will have to be found from efficiency savings. This would be a tough ask at the best of times but, as most of you will be well aware, it comes after four years of delivering large annual efficiency savings targets.
And of course the financial problem does not sit in isolation. In each of the discussions across the region we heard of pressures caused by difficulties in attracting staff or by increased service demand driven by an ageing population. At times it felt as though we were describing a perfect storm of crises in money, recruitment and demography that threatened to overwhelm us as surely as Storm Frank had submerged parts of Dumfries.

But just as the pub in this picture was open for business only two days later (it felt longer), things often brightened up pretty quickly in a lot of our discussions. The staff that we met were keen to highlight potential solutions, things that could change services for the better and stand up to our triple challenge.
We’re going to write up the key points raised and create a plan for delivery but some of the common themes were;

• The right I.T. can transform the way teams work, but we need to make it connect faster and more reliably across the region.
• We need to get far better at sharing appropriate information between health, social work and third sector colleagues.
• We need to be quicker at admitting that some vacancies won’t be filled and to redesign and retrain teams to provide services differently.
• Local teams need to be empowered to make locally appropriate decisions and as much resource as possible needs to be devolved to operational levels.
• Coordinated support to teams around improvement techniques and methodologies would be helpful.
• We need to work more closely with carers and families.
• We need to celebrate team successes and better spread their ideas and learning.

It’s also important to remember that we’re not on our own in trying to work our way through the financial, demographic and recruitment problems. In our meetings we highlighted some of the huge amount of work ongoing at national and regional level at the moment to try to identify high quality and more sustainable models of service delivery across Scotland. Two particular strands of work have the potential to help us transform the landscape;

• The National Clinical Strategy (written by Angus Cameron, our Medical Director) sets out a clear direction for closer working between Health Boards aimed at improving safety and effectiveness of care within their wider region.
• The Chief Medical Officer’s work on ‘Realistic Medicine’ points to how genuinely person centred care can lead to better patent outcomes whilst reducing waste and unnecessary expenditure.

So, both locally and nationally, there are grounds for cautious optimism that we can come through these uniquely challenging times in a way that allows our teams to continue to deliver excellent health and care services for our population. It is clear though that to succeed in this, the pace of change around redesign of service models and ways of working will have to be dramatic. Whilst there’ll be a few giant leaps (it’s just over a year until we receive the keys to our new acute hospital…) most of this change will be smaller scale and driven by the local teams that we talked with on our regional tour. Our success will depend on how well we support these teams and ensure they have the skills and confidence to adapt their services in ways that allow us to deal with the financial, demographic and recruitment complexities.
Thanks to everyone who came along to speak to us on our tour.

Jeff Ace is the Chief Executive Officer for NHS Dumfries and Galloway