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

How Advanced is your ANP knowledge? by Barbara Tamburrini

Advanced nursing practice is not a new concept. Indeed, specialist nursing roles, from which advanced nursing practice has evolved, have been around since as early as the 1920’s. The advent of World War 2 dramatically enhanced the specialist nurse role through the significant development of new skills which were required to meet the huge and urgent demand in hospitals and infirmaries throughout the world. The clinical nurse specialist (CNS) role was underpinned by academic qualifications as early as 1954 and over the following decades, these nurses were fully embraced as experts in their fields. This academic foundation represented a momentous shift in the educational vision for nurses towards university-based knowledge development with expertise achieving the application of this knowledge in practice.

With CNS roles being conceptualised as fundamental to in-patient care quality, the nurse practitioner role was developed to replicate this degree of specialism in primary and community care. During the 1990’s, universities within the UK began to affiliate nurse practitioner courses with graduates predominantly practising in GP practises to address the targets around 24 hour access to healthcare professionals and 48 hour access to a GP. These nurse practitioners were trained to assess minor injuries & illnesses which freed GPs up to review and manage patients with more complex needs.

During the 1970’s, very specialised nursing roles emerged in areas such as pain management and colorectal surgery and less than 20 years later, academic institutions were making BSc Nurse Practitioner qualifications widely available with paediatric, primary care or hospital based routes all an option for graduation. This was further enhanced by the advent of the Hospital at Night (H@N) concept, piloted early in the 21^st century and rolled out across the UK by 2006.

Here in NHSD&G, we have had nurse practitioners achieving significant levels of specialist nursing in GP surgeries for 2 decades and in the Acute and diagnostics Directorate, the H@N concept was introduced in 2006 with an initial team of 6 advanced nurse practitioners (ANPs). These nurses hit the ground running with assessing unwell & deteriorating adult in-patients overnight and gradual recruitment has enabled development into a weekend daytime role. The manifestations of this role evolution is evidenced by increased continuity and quality of in-patient care, decreased residual clinical tasks and reduced numbers of un-planned critical care admissions by promoting the early recognition and management of deteriorating patients. Furthermore, a presence has been fully established within the medical admission unit and an ambulatory care pathway has been formulated which is delivering on its commitment to reduce medical emergency admissions.

Within the Emergency Department, ANPs have been managing a case load of stream 1 (minors) presentations since 2005 when 2 existing members of staff commenced their ANP course & carved out this new role. This team gradually increased to 3 ANPs once the benefit on improved ED flow was realised. In recent years, the ANP presence in ED, has developed to include presentations in stream 2 (majors) and stream 3 (resuscitation) and this has contributed significantly to achievements in ED HEAT targets whilst also maximising ED patient care.

The Galloway Community Hospital also now has an ANP presence with a crucial role to play in the acute “Garrick” ward in addition to supporting the patients within the “Dalrymple” rehabilitation ward. In addition, advanced practitioners are now clinically active in the neonatal, obstetrics, gynaecology and paediatric specialities within NHSD&G and a number of GP practices around the region benefit from ANPs working alongside their GP, practice nurse, CNS, district nurse & health visiting colleagues. Indeed, a new and exciting venture comes to us in the form of advanced allied health practitioners which is currently in the recruitment process and this opens yet another door to the advanced practice house.

However, fundamental to all of these roles, is the definition of advanced practice and the demonstration of this achievement. For the first time, this area of healthcare is firmly on the Scottish political agenda with the Chief Nursing Officer’s Transforming Nursing Roles programme providing the following agreed definition for an ANP role:

1. An Advanced Nurse Practitioner (ANP) is an experienced and highly educated Registered Nurse who manages the complete clinical care for their patient, not solely any specific condition. Advanced practice is a level of practice, rather than a type or speciality of practice.

 

2. ANPs are educated at Masters Level in advanced practice and are assessed as competent in this level of practice. As a clinical leader they have the freedom and authority to act and accept the responsibility and accountability for those actions. This level of practice is characterized by high level autonomous decision making, including assessment, diagnosis, treatment including prescribing, of patients with complex multi-dimensional problems. Decisions are made using high-level expert knowledge and skills. This includes the authority to refer, admit and discharge within appropriate clinical areas.

 

3. Working as part of the multidisciplinary team ANPs can work in or across all clinical settings, dependent on their area of expertise.

 

Advanced nursing has 4 pillars of practice which ANP’s must have as part of their core role and function and although the primary focus is on clinical practice, all 4 practice pillars must be demonstrated. These are:

• Clinical practice
• Leadership
• Facilitation of learning
• Evidence, research and development.

The demonstration of achievement of the pillars of practice and consequently the ANP role has also been clearly defined at national level and this involves the outlining of professional competencies, participation in effective clinical supervision and meeting robust continuous personal development. Within NHSD&G Acute & Diagnostics Directorate, the value placed upon this level of practice has been highlighted by the appointment of an ANP clinical manager to deliver this national agenda in a cohesive, collaborative and joined-up way across NHSDG to ensure we are meeting our strategic responsibilities within this national framework.

Both nationally and locally, discussion and debate has taken place on the differences between advanced and specialist practice and as these nursing roles have progressed, differences and similarities have become evident. This is a wide-ranging area for debate encompassing all aspects of specialist practice but it is worthwhile to clarify that advanced and specialist practice should not be seen as directly hierarchical relationships; advanced nursing is not more senior than specialist and the reverse is equally applicable. Both levels of practitioners function at an extremely high level of practice, but with very different clinical focuses.

In summary therefore, it is obvious that advanced practice has evolved over a significant period of time and has ‘proved its worth’ in a number of healthcare areas with significant benefits for the delivery, safety and quality of patient care. Even though this concept has been fairly consistently on the agenda, the momentum around the role, its function and the measures of achievement and effectiveness has significantly gathered pace over the last 10 years with a further ‘injection’ since the implementation of Transforming Nursing Roles. This galloping horse (it is Ascot Week after all!) will only gather pace as more healthcare professionals such as physiotherapists, dieticians, pharmacists to name but a few, begin to realise the potential for their own advanced roles. This can only be a good thing with advanced practitioners now able to drive their own development whilst clearly evidencing their clinical confidence and competence for a discerning public who, quite rightly expect the best.

Exciting times ahead – are you ready to jump aboard?

Barbara Tamburrini is the ANP Clinical Manager

Being Carer Positive by Lesley Bryce

This week (12-18^th June 2017) is Carers Week.

Carers week is a national awareness week that celebrates and recognises the vital contribution made by people across the UK who currently provide unpaid care.

A Carer is someone of any age who provides unpaid help and support to a relative, friend or neighbour who cannot manage to live independently without the Carer’s help due to frailty, illness, disability or addiction (Scottish Government 2016).

The focus this year is on building communities which support Carers to look after their loved ones well, while recognising that they are individuals with needs of their own.

3 in 4 carers don’t feel their caring role is understood or valued buy their community.    (http://www.carersweek.org/)

In Scotland, there are at least 759,000 Carers aged 16 or over and 29,000 young carers. The value of care provided by Carers in Scotland is £10,347,400,000 a year. Unpaid Carers are the largest group of carers in Scotland, providing more care than the NHS and council combined. Carers should be seen as a vital and valued part of our health and social care system. Three out of 5 of us will become Carers at some stage in our lives and I in 10 of us is already fulfilling some sort of caring role.

(https://carers.org/country/carers-trust-scotland)

In Dumfries and Galloway, unpaid Carers provide over half of all care required, approximately 410,000 hours per week. There are 14,995 Carers in D&G (2011 census) although the figures are likely to be significantly higher as many people do not identify themselves as a Carer. Latest figures reveal that Carers in D&G make up 10% of the population and of this group, 29% provide more than 50 hours of support a week.

NHS Dumfries & Galloway recognise the important role that Carers play in our community and are determined to ensure that staff who have an unpaid caring role are supported to manage their own caring responsibilities with confidence and good health, whilst remaining in work.

One in five Carers give up work to care (https://carers.org/key-facts-about-carers-and-people-they-care). I gave up my employment when my son was 4. I returned to work after a long break. I personally know how much of a struggle it can be to juggle work and caring responsibilities and the effect this can have on your own health and well-being. I also understand the impact that giving up work can have on your personal finances and self- esteem.

Most of you will know that NHS Dumfries & Galloway were successful in achieving the Carer Positive engaged award in 2016. Carer Positive provides a framework around which employers can develop and implement positive working environments which support staff who are unpaid Carers. NHS Dumfries is moving forward with our Carer Positive journey to improve and progress to established level. We are working in partnership with D&G Council and the Third Sector to embed a culture of support for Carers across the health and social care partnership.

During Carers Week, there has been lots of activities to support Carers including those in the workplace.

Arrangements have been made to promote the Special Leave Policy via workforce briefings and intranet flash ads so look out for these.

Carers Leave for NHS D&G is detailed in the Special Leave Policy which can be accessed from the BEACON intranet pages. If you do not have access speak with your manager in the first instance or contact a member of the Workforce Directorate team.

The new Carers information ‘z’ card is being promoted soon so look out for these 😊

Carer online training modules are available to all staff on learnProNHS (under the CPD tab) and through the Open University Open Learn platform. It includes NES EPiC levels 1-3. NES in partnership with the Open University in Scotland have developed Caring Counts in the Workplace. This is an online course for managers and policy makers. The course sits on the OU’s free Open learn platform, with a link from the EPiC e-learning site.

( http://www.open.edu/openlearncreate/course/view.php?id=1841)

I am one of the Carer stories in this web based learning and it really shows how far I have come when I look back on the last 4 years. From that pilot with the Open University, I went back to UWS then I got a role on the board as a Non- Executive Director where I am also proud to be the Carers champion.

I know that it is exhausting sometimes having caring responsibilities and working and it has certainly helped me to have support to continue in my role.

The Hospital Carers project offers support and advice. It is based in the centre opposite the lifts in the main entrance lobby at DGRI where you can also find their Carer’s Week information display.  You can contact Lindsay sim or Jennifer Cranmer on 01387 241384.

Dumfries and Galloway Carers centre provides information, advice and support to anyone who cares for a relative or friend. They can be contacted on 01387 248600 or email info@dgalcarers.org . The centre has been an invaluable lifeline to me for the last 15 years.

The current Dumfries and Galloway Carers Strategy expires in 2017.Following consultation with Carers, Carers organisations and partners, a draft strategy has been developed for 2017-2021.The consultation closes on 30^th June 2017. Here is the link:

https://www.surveymonkey.co.uk/r/dgcarers

For more information or assistance to complete the survey, please email Carers@dumgal.gov.uk or phone 01387-246941. Hard copies are available on request.

If you are a staff member who is a Carer and would like to be involved in Carer Positive, please feel free to get in touch. Please contact Philip Myers, Health and Wellbeing Specialist (philip.myers@nhs.net) or Larel Currie, Commissioning Officer, Joint Strategic Planning and commissioning (larel.currie@dumgal.gov.uk).

Lesley Bryce is a Non Executive member of NHS Dumfries and Galloway Health Board

 

 

Eat Fact, not Fiction….by Laura King

Barely a week passes without headlines (or Twitter trends) about diets and how to lose weight, improve your energy levels / skin/ hair / libido / life expectancy. Often these are contradictory and can lead to confusion. Whenever the headline suggests that a fad diet or miracle food is the holy grail that will solve all our health problems alarm bells should ring!

Dietitians are trained to examine the evidence behind such claims and sift out the facts from the fanciful. Unlike many medical trials where a drug is tested for effectiveness (usually against a placebo), nutrition trials are usually more complex and difficult to interpret. Mainly because nearly everybody eats, and people’s baseline diets and habits are so varied it makes it difficult to isolate the effect of altering one aspect of the diet.

We also consider the person as a whole and aim to prioritise dietary aims. An example of this is a referral that came through recently for a lady in her 80’s who wanted advice for diverticular disease and type 2 diabetes. When we saw her, it became evident that she had lost a considerable amount of weight since losing her husband. We were able to explain to the patient and her family that this was the greatest nutritional risk to her so we would encourage her to prioritise eating a little of what she fancied to try and boost her weight rather than follow a restrictive diet for her other conditions, particularly while she was an inpatient when we know that people are vulnerable to malnutrition.

As part of the fourth annual Dietitians Week being held June 12-16, the BDA and dietitians in Dumfries & Galloway are encouraging the public to get their advice on diet from the properly qualified experts. The public should also ensure any diet plan they follow is based on scientific evidence. Some of the advice given in relation to fad diets is not just ineffective, it can actually be harmful to people’s health.

Evidence-based nutrition advice is important because often the trials that are reported may be based on small, specific experiments and the results may not translate easily to real life or real people. Dietitians can interpret the evidence and help people make adjustments that fit into their lifestyle and are sustainable.

Eg. There is evidence that eating large quantities of soya can reduce cholesterol, but for the majority of people, having large quantities of soya-based products for breakfast, lunch, dinner and snacks is not going to be an achievable goal.

Dietitians Week

Annually, the BDA run a weeklong event called Dietitians Week, aiming to promote the importance of dietitians and the great impact they can have on the nation’s health and wellbeing. This year the week runs from 12-16 June and is taking the theme of Evidence and Expertise and you will spot our myth-busting displays around DGRI. This is to promote the importance of ensuring that dietary and nutrition advice comes from evidence-based sources, whilst highlighting the risk of following guidance that is not scientifically credible.

Please take time to look at our displays next week and when you see us out and about in the hospital, grab us for a chat about nutrition, fad diets and separating the fact from fiction.

Laura King is Lead Acute Dietitian at NHS Dumfries and Galloway