Love activity but hate exercise? by Erin Archibald

“Drop down and give me 20”…

What do you think about when you hear exercise and strengthening: sweatiness, gyms, Lycra, pain. As a busy mum to 3 children, exercise is something I don’t have much time to do but am I active? Absolutely!!

I am a specialist Physiotherapist within the reablement service STARS ( short term assessment reablement team)- and my main role is to promote exercise and well being in the community- my target audience- not lycra gym bunnies, but over 65 year olds who normally have a long term condition who are recovering from a spell in hospital, and likely do not own trainers or know what a squat entails.  Who am I to advise to join a swimming group, attend low impact exercise classes or complete a rehab programme when I do not complete myself? Instead I walk to the park, climb up woods, I cycle with my children, I chase after them endlessly… so we need to think different about activity.

The benefits of rehabilitation, recovery and reablement support are well evidenced in Health and Social Care interventions.  The support improves a person’s ability to function independently, encourages exercise choices and to take control of their daily activities.

I work closely with 3rd sector and community teams, to encourage and promote active participation socially- tailoring every service users needs with their capabilities and skill sets and I see the patient as an individual not a condition.

• what are their hobbies ?
•  what do they enjoy the most in life?
•  what is meaningful to them?
•  what matters to them which they are currently not able to do or accommodate?

We support service users to identify their goals through good conversations. We also support them to develop, retain and regain their skills by understanding what matters to them- this may not often happen initially but over the course of the reablement process from our support workers, we build relationships and find getting to know them and their families/carers imperative for helping them identify their goals.

We look at well being plans which can be something as simple as getting to the shop to purchase a daily paper, getting back to social activities, or being able to transfer into a bed or car again so they can visit someone important to them. We promote the benefits to exercise in line with recent evidence via Scottish government 2017.  Many include:

• Reducing falls
• Improving strength and balance-
• Improve wellbeing
• Reduce anxiety, improve sleep
• Social Interactions/ reduces isolation
• Day to Day activities become easier

As a registered practitioner, we document their wellbeing plans and agree this with the service user, enabling our health care support workers to deliver the daily practice of the chosen activity, whether this is a walk to the shop, a spot of gardening, making soup or practising stairs/ steps. This allows us to see progression and plan goals,

As a physiotherapist, I have blended alongside the occupational therapists in our team in the last five years to learn the importance of occupation (activity) led tasks and changing mindsets to linking social interests to exercise. In the time it takes someone to boil the kettle, they can do basic exercises such as the Balance challenge or super 6 exercise programme.  Reactivating “activity” to improve health and well being, Independence and quality of life is based on continuing research carried out at Newcastle University Institute for ageing with Professor Gore (2017). For example being able to reach your feet to cut your toenails, walk 400 yards or maintain heavy housework. (http://www.knowedlge.scot.nhs.uk/ahpcommunity/lifecurve-survey-2017.aspx)

So, lets get more active and promote activity, lets think differently about exercise , and think about What matters to you for healthy ageing?

Erin Archibald is a Specialist Physiotherapist, STARS- Short term Assessment and Reablement service 28^th January 2019.

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

Dementia Awareness by Julie Garton

Dementia Awareness Week runs this year from 4 – 10 June. There are lots of events across the region supported by a wide range of individuals and organisations. This year, I’ll be promoting the use of a document called ‘This Is Me’ within acute hospitals and asking Dementia Champions and other colleagues across NHS Dumfries & Galloway settings to join in.

When someone with dementia comes into hospital, a care home or is receiving care at home, they and their family/friends may be asked if they have a ‘This is Me’ document.

What Is ‘This Is Me’?

‘This Is Me’ is intended for use by anybody with dementia, delirium or other communication impairment.

It aims to provide important personal information about the person from their perspective and those who know them best (family/caregiver) to help enhance the care and support given when the person is in an unfamiliar environment.  It’s crucial that we understand the person as an individual and take their personal history into account, helping us to communicate and engage with the person, which in turn can help us to prevent/alleviate stress and distress.

What are the benefits of ‘This Is Me’?

For the person, their families/caregivers – if the person with dementia has memory and/or communication problems, then a ‘This Is Me’ guides and supports staff to provide care in a way that respects the person’s choices, preferences and routines. ‘This Is Me’ can be a great opportunity to ask and find out information, that as family members we may not know – provoking good memories and conversation. In addition, a ‘This Is Me’ or similar may reassure people with dementia and their caregivers that we see behind the dementia and respect that person.

For staff – for professionals, it can help us deliver person centred care, and importantly, reduce the times we ask for the same information – the detective work has already been done.

Where can ‘This Is Me’ be used?

‘This Is Me’ can be used anywhere, in hospital, care homes, in primary care, respite care and is offered during Post Diagnostic Support.

When should it be completed?

‘This is Me’ always offered during Post Diagnostic Support but can be completed at any time.

Are there issues around confidentiality/sharing this document?

The document is the property of the person and/or their main care giver – it is not a clinical document and does not belong to any professional or service, the person/care giver decides what information is included and shared.

Once completed, the document should be kept in a place that is easily accessible for those providing care, for example, at the bedside, in a care plan. The information can help staff understand the persons’ baseline abilities, lifestyle, routines, likes/dislikes and gives great opportunities for conversation and engaging with the person.

What happens to the form if/when the person is discharged or transferred?

As it belongs to the person, it should go with them on discharge/transfer, and it’s also useful to check with the person and /or their main carer that the information remains up to date and relevant.

Living Well with Dementia

It’s important to understand that many people are able to live well with dementia, leading active and fulfilling lives for years after they first experience difficulties and receive a diagnosis, but coming into hospital can be daunting for all of us, and for people with dementia , this can be a frightening experience.

Whilst these days, a person with dementia may only be in hospital for a short time, how we communicate and support them will have an influence on the impact of the whole care experience and how quickly they can return home. We know that older people with dementia are more likely to be discharged to a care home than older people without dementia, have longer hospital stays and experience more falls and pressure ulcers.

We know that in Scotland around 93,000 people are living with dementia and we think around 25% of all acute hospital beds are occupied by people with dementia (Alzheimer’s Research UK, 2018), yet mostly, people arrive into our services without a document such as This is Me even if they have one at home.

“This is Me gives me golden information about an individual. The nuggets of information are priceless in helping to smooth the way to getting to know the person behind the dementia”

Gillian, Staff Nurse

‘This Is Me’ is just one of a range of tools that can support centred care, Getting to Know Me, Life Story work and a wide range of personal profile tools are available, many online, helping professionals to see the person, not just the patient.

I ‘m keen to hear about your experience/s of using This Is Me in your workplace – please contact me or, if  you would like more information about This is Me or would like a copy, please contact me at jgarton@nhs.net or 01387 246981.

Julie Garton, Alzheimer Scotland Dementia Nurse Consultant

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

Improving Patient Flow by Chris Isles

Dave Pedley gave an excellent talk two Wednesdays ago on Tackling Crowding in Emergency Departments, triggered no doubt by the number of times recently we have been running at 100% bed occupancy with patients sitting in chairs in the Emergency Department because there were no free cubicles.

The nightmare scenario for us all as the clock ticks inexorably towards December 2017 is that the same thing happens when our fabulous new hospital opens and the TV cameras, newspapers and journalists begin to salivate at the prospect that something goes wrong (there will be no story to report if the transition to the new hospital goes smoothly and there are no corridor patients).

The chances that something could go wrong are actually quite high and the problem is almost entirely medical by which I mean the large number of frail older people living precariously in the community who fall, become immobile, incontinent or delirious and require at least some form of assessment but often admission to hospital.

The omens are not good.  Dumfries and Galloway has the second highest proportion of people in Scotland who are aged 75+ and living alone.  Our Health Intelligence Unit have shown that despite numerous initiatives and new ways of doing things the Medical Unit would be sailing perilously close to 100% bed occupancy if we moved into the new hospital today. (See me previous blog on the new hospital here)

During his talk Dr Pedley showed a powerful 5 minute video by Musgrove Park Hospital in Somerset entitled Tackling Exit Block ie their hospital’s inability to move patients through ED because of numerous interrelated system failures.  (https://youtube/WX1YwKIkWzA).  Musgrove Park ‘s Top Ten Reasons Why People Cant Leave Hospital were as follows:

1. Discharge delayed so patient can have lunch
2. Carer/relative can’t pick them up till after work
3. Nurses too busy looking after other patients to arrange discharge
4. Waiting for transport or refusing to leave without free transport
5. Waiting for pharmacy
6. Waiting for ward round
7. Waiting for blood or scan results
8. Waiting for discharge letters
9. Packages of care planned for late afternoon/early evening
10. Patient doesn’t want to go to the assigned bed in community hospital

During discussion a number of solutions to our own recurrent difficulties with patient flow were proposed.  These included tackling all of the above in addition to attempting to educate the public about when and when not to attend ED.  My own view is that this might be as fruitless as King Canute sitting in his throne on the beach and attempting to stop the incoming tide on the grounds that any patient who comes up to ED and is prepared to wait up to 4 hours and possibly more to see a doctor or a nurse must feel they have a very good reason to be there (one often quoted reason being that they could not get an appointment to see their GP).

There were some illuminating moments.  We asked Patsy Pattie whether Dynamic Daily Discharge was still as effective as it had been when it was first rolled out.  She replied that some wards needed support on embedding the process.  Dr Pedley praised staff for their firefighting skills on those occasions when patients were unable to access cubicles in ED which prompted Philip Jones, our chairman, to say that a corporate rather than firefighting response was needed.  Many heads nodded in agreement.

A corporate response might mean fixing lots of little things in order to make patients flow through the system more speedily.  Dynamic Daily Discharge could then become an established part of ward routine rather than an optional extra; the paperwork in the medical assessment area might need to be simplified to allow nurses to move patients into the body of the ward more quickly; a nurse on each ward might be designated to carry the ward phone rather than allow it to ring endlessly in the hope that someone else will pick it up; clinical teams would actively consider how patients might get home;  consider community detox for alcohol withdrawal; patients earmarked for discharge might move to the dayroom unless physically unable to do so; hospital taxis might take people home if relatives or patient transport cannot do so; patients could be issued with a prescription to take to their local pharmacy if new medications are required or go home with immediate discharge letter to follow if not.

To these solutions I would add fully funded Ambulatory Emergency Care and Comprehensive Geriatric Assessment services together with more and better social care and a commitment to fill the hospital with more staff on public holidays (of which there will be four within one month of the new hospital opening).

The Chief Executive of Musgrove Hospital finished her contribution to the Exit Block video by saying ‘we need every single member of staff to understand their responsibility in ensuring patients flow through our hospital so that we can discharge them home as quickly and as safely as possible’.  Who could disagree?

Professor Chris Isles is Sub-dean for Medical Education and is a Locum Acute Physician.

Losing Grace by Robyn Langton

“A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.”

Who remembers that mad feeling of excitement when you were told as a child that you were going to stay with Granny and Papa? As a child growing up, I was very fortunate to have wonderful grandparents around me to support my parents, provide me with unconditional love – and lots of sweeties on the sly. Along the way, as is life, I have lost all of my beloved grandparents, my Granny Grace being the last, saying goodbye at the age of 77. Some people are not lucky enough to know their grandparents, however more and more are able to enjoy them for longer as demography changes and people are living longer. My Granny was incredibly independent, never relying on health or social care apart from the odd trip to her GP and was still going swimming twice a week and ‘raking around’ in her 70’s. Grace was one of life’s treasures, incredibly sweet and kind to everyone around her.

In summer 2010, my Granny began to change and not quite seem herself. Living just up the road from us, she regularly popped in to visit (and secretly do some of my chores Mum had left me) and I distinctly remember one day when she left, she lost her balance on the steps and I watched as she slowly made her way back up the street. Another incident happened when she fell backwards over into the bath (thankfully empty!). These incidents seemed to be happening more and more often and Grace consulted her GP several times; without any diagnosis or medication being prescribed.

It got to the point that my Granny’s loss of vision and mobility was so severe that it made it unsafe for her to be at home. When the family took her up to the hospital to get checked over, Grace was almost blind and needed to use walking sticks. My Granny was admitted to the ward in September. Lying in her hospital bed she was no longer the chatty woman that went out of her way to help everyone else, she was in desperate need of support herself to get changed, move around, go to the toilet, and she had to be fed. A very fit and healthy lady had suddenly turned into a frail, dependent ‘patient’ at DGRI in Dumfries and Galloway. It was terrifying watching the person we knew and loved so much slip away so quickly – we were losing our Grace along the way. Eventually we were told that Grace had developed a neurological condition and they thought this could be something called Creutzfeldt-Jakob disease (CJD) but couldn’t be sure. A specialist team from the National CJD Unit in Edinburgh came down to undertake tests, and confirmed that my Granny had sporadic CJD.  My Granny died less than 4 months after first displaying the symptoms, in November 2010.

CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, causing 1-2 deaths per million worldwide every year. I always said my Granny was always one in a million.

Symptoms of CJD include:

• loss of intellect and memory
• change in personality
• loss of balance and co-ordination
• slurred speech
• visual disturbance and blindness
• abnormal jerking movements
• progressive loss of brain function and mobility

It was a difficult and distressing time for the family, as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due to it being so uncommon. This was also not helped by the stigma attached to this disease.

There are various strands of CJD. CJD is caused by an abnormal protein, called prion, which contaminates the nervous system. Variant CJD may have been passed to humans through beef products infected with bovine spongiform encephalopathy (BSE). However, there are four different types of CJD and infection is not always the cause of this condition. For example, the cause of sporadic CJD, which accounts for 85% of all CJD cases (and the type my Granny had) still remains unknown.

The world is an amazing and fascinating place, however it can also be filled with lots of unknowns, and some scary illnesses. We need to make more of the unknowns known; and support the fantastic work of all our world researchers out there spending their days doing exactly this.

Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly turned into a nightmare. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so people and their families are more supported and informed and can have an agreed care plan in place.

Five years after my Granny died, I decided in November 2015 that I was ready to start talking about the disease and raise awareness amongst health professionals and the general public. Having only ever run as far as 5K, I decided to take the plunge and sign up for the Dumfries Half Marathon. I have been training for the past few months in preparation for the run on Sunday 25^th September to run 13.1 miles. It has been a bit of a bumpy ride, with several trips to Physiotherapy, Podiatry and Sports Therapy, however I figure if Grace could swim 50 lengths of Dumfries swimming pool twice a week at 75 years old, this run will be a doddle.

Any support would be greatly appreciated. Thank you.

www.justgiving.com/robyn-langton
Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd

http://www.nhs.uk/Conditions/Creutzfeldt-Jakob-disease/Pages/Introduction.aspx

Robyn Langton is an Integration Support Officer for NHS Dumfries and Galloway

“One Small Step for Dumfries and Galloway, one giant leap for Scotland” by Wendy Chambers

The occupational therapy mental health service is stepping forward this week and sharing their implementation of the Home Based Memory Rehabilitation (HBMR) programme for people with dementia at a National event in Edinburgh.

The event “Connecting People: Connecting Support” is showcasing occupational therapists contribution to dementia post diagnostic support, with the Home Based Memory Rehab programme centre stage, primed for a roll out across 5 other Health Boards in Scotland in the coming months.

Local occupational therapy staff Wendy Chambers and Alison McKean will be presenting during the morning live link session, and also leading along with Lynda Forrest in the afternoon workshop with the 5 Health Boards. The aim is for consistency of delivery for this evidence based occupational therapy intervention across Scotland, contributing to the developing evidence base and promoting best practice in post diagnostic dementia care

The event is being live-streamed and can be watched again at the following link

• video3uk.com/actionondementia
• Click on the EventCast Tab and follow the link called “Connecting People: Connecting Support. Home Based Memory Rehabilitation”

Speakers in the morning also include Mary McGrath, Advanced Clinical Specialist Occupational Therapist from Belfast; current work in Scotland with HBMR is firmly based on Mary’s original research (McGrath and Passmore 2009)

A video of servicer user feedback and opinion of the HBMR programme is also being shown on this day and a link to this can be found at

• https://www.youtube.com/watch?v=VNg5HrFi4_M

This work is also being showcased on the ‘Let’s Talk About Dementia’ Blog:

• www.alzscot.org/talking_dementia

Wendy Chambers is an Occupational Therapy Team Lead at NHS Dumfries and Galloway

 

 

 

 

 

Changes in place of death in Dumfries and Galloway By Prof David Clark

When I first came to work in Dumfries and Galloway, a rural area in the south west of Scotland, I began to explore the local healthcare scene and was told by several people that our region had a high rate of home deaths. Some reported that everyone wishing to die at home was able to do so. One person told me with confidence that the rates of home death were increasing here, against the general pattern elsewhere.

Of course, the researcher in me was interested in such claims and in due course it proved possible, with colleagues,  to conduct a study to shed more light on where people die in south west Scotland. The results of that work have just been published in the journal Palliative Medicine and can be read in full on open access to anyone.

The paper contains a lot of detail and some of it may be open to differing interpretations. But it sheds some light on the various statements made by my informants and is a warning to those who play fast and loose with their claims.

What we found

We examined 19,697 deaths of residents of Dumfries and Galloway occurring over the 11 years from 2000-2010. In that whole period, home deaths averaged 26.5% – above the average for the United Kingdom.

But we also found that the proportion of home deaths was in decline. Fewer people in Dumfries and Galloway died in their own home in 2010 (23.2%) than had done so in 2000 (29.6%).

Now in England and Wales between 2004 and 2010 the proportion of home deaths rose – from 18% to 21%.  But still to a level lower than in south west Scotland.

For me, a fascinating finding of our study was that between 2007 (when new recording procedures were introduced) and 2010 an increasing proportion of deaths occurred in the eight bed specialist palliative care unit of our main acute hospital. The proportion of all deaths in the region that took place here went up from 6% to 11%.

Compare that to a recent increase in England and Wales in the proportion of deaths occurring in hospice: from 4% to 6%.

We also found that where a person dies is in some measure determined by the cause of their death.

People with dementia and those who had experienced a stroke were very unlikely to die at home, and much more likely to do so in a care home. Almost 44% of people dying with heart disease did so at home but an almost equal proportion (41%) died in hospital – something worth investigating further. Most cancer patients (52%) died in hospital but almost 28% died at home.

Where next?

We have shown that the likelihood of dying at home is reducing in Dumfries and Galloway. Elsewhere that trend seems to be ‘bottoming out’.

Will we observe the same thing for the period after 2010? And what would the results be like if we did this study for the whole of Scotland?

Researchers are rarely satisfied with their results. The urge to better explain and extend the range of our studies is ever-present. But findings such as those from this new study in Dumfries and Galloway can upset prevailing assumptions. They give us a chance to look at trends and their causes. And if we are advocating for more specialist palliative care resources they show clear evidence of an increasing workload.

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

Predictors of place of death in South West Scotland 2000–2010: Retrospective cohort study, Heather Black, Craig Waugh, Rosalia Munoz-Arroyo, Andrew Carnon, Ananda Allan, David Clark, Fiona Graham, and Christopher Isles. Palliative Medicine, 1-8, February 2016 (currently available online until 23 February 2016)

In the media:

• Proportion of home deaths falls in South-West Scotland, University of Glasgow news, 9 February 2016
• Palliative care study finds decline in number of people dying at home despite wishes, The Herald, 9 February 2016
• Deaths at home falling despite most wishing to end lives there, Lizzy Buchan, The Scotsman, 9 February 2016
• David Clark interview on Good Morning Scotland, BBC Radio Scotland, 0745 9 February 2016 (available online until 10 March 2016)
• Study finds fall in proportion of home deaths in south west Scotland, Tom Moran, ehospiceUK, 9 February 2016
• Home death figures down, Sharon Liptrott, Dumfries and Galloway Standard, p9, 11 February 2016
• Drop in deaths at home, Dumfries Courier, p15, 12 February 2016

(media reports updated until 17 February 2016)

Reproduced from the blog http://endoflifestudies.academicblogs.co.uk/changes-in-place-of-death-in-dumfries-and-galloway/