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What now? Reality Brexit, and palliative and end of life care. A personal view.

After one referendum, two general elections and with the issuing of a commemorative coin Brexit is entering the next phase. During the last four years Brexit has been different things to different people - “hard”, “soft”, “EFTA”, “red/white/blue”, “in name only”, “no-deal”, “blue passport”, “clean-break”, “Norway”, “bonkers” and ”WTO”. And who could ever forget “Malthouse Compromise”? In the next year or so Brexit will start to become something different - “reality Brexit” or perhaps “harsh reality Brexit”.

Whilst there remained a possibility that Brexit might not happen SPPC articulated its considered view that “in all likelihood Brexit will significantly damage the care which people receive towards the end of life”. SPPC highlighted key concerns about how Brexit would likely negatively impact workforce, scientific research, medicines supply and funding. These concerns remain.

What may feel like the exhausted end game of Brexit is really the beginning of the most important stuff. Evidence suggests that all Brexits are likely to be harmful to palliative and end of life care, but some Brexits will be much worse than others. The Big Ben Bong phase of Brexit will be completed in a couple of days with both genuine joy and genuine sadness/anger expressed copiously. Thereafter Getting Brexit Done will be a matter of choosing where the UK will sit on a continuum of harm which runs from bad to really very bad. The UK Government will then attempt to negotiate the dull and massively complex multitudinous details necessary, within the ludicrously short timescale that it has chosen to inflict on itself.

There is an opportunity for the palliative care sector to influence the shape of this post-Brexit world. Over the past fortnight the Westminster Government has sent conflicting signals on the extent of regulatory alignment they are seeking between the UK and the EU. They have rowed back a bit on previously envisaged salary thresholds for immigration. The Prime Minister continues to wish away ( others might say “lie about” ) the customs and regulatory checks in the Irish sea which are a legal consequence of his own Withdrawal Agreement, which is now law. It is probably a mistake to attach too much significance to specific individual pronouncements. However, this is a government now trying to manage a situation where four years of essentially sentimental rhetoric about “sunlit uplands” and “Buccaneering Britain” is in slow motion collision with reality. They clearly haven’t got it sorted, stuff is in flux and the tough choices and trade-offs inherent in the Brexit project can’t be ducked for much longer.

Many organisations and individuals chose for good reasons to keep out of a Brexit debate which was divisive, polarizing and sometimes outright toxic. Those articulating concerns about negative impacts of Brexit were often accused, often fairly, of trying to stop Brexit. Now however Brexit is happening. The debate need no longer be framed as “Brexit yea or nay”. We need a trade policy, we need an immigration policy and we need a policy on scientific collaboration. The shape of each of these policies will have profound impacts on palliative and end of life care. The responsibility to inform and attempt to influence – that’s on all of us, whether we supported Brexit or not. The responsibility to decide and to account for the outcomes – that’s on the Westminster Government.

By Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care.

Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership

This blog is by Elaine Colville, Senior Nurse for Palliative Care at Angus Health & Social Care Partnership.

There is a lot of good work taking place in Angus by people who provide palliative and end of life care and support across a range of settings.

As part of our work to develop our Strategic Commissioning Plan (2019-2022) we recognised the need to have more in-depth discussions on how to improve people’s experiences of palliative and end of life care and support and produce a plan to take forward improvements.

A local charity, Lippen Care, provided funding to support this work. In August 2018 a steering group was established with wide representation of staff, services and organisations that provide palliative and end of life care and support across Angus.

There was wide engagement with members of the public, carers and our workforce. This was a crucial step on developing the plan to ensure that individual experiences were at the heart of our work. We asked people what they thought good palliative and end of life care looked like and what we could do differently. A number of key themes emerged:

1. Compassionate & person centred care

2. Compassionate communication & conversations

3. Care closer to home

4. Getting it right for the family

5. Education & development for the workforce

6. Public health approaches to palliative and end of life care.

These themes were mapped and aligned to the results of a rapid review of national and international strategies for adult palliative and end of life care. The steering group developed outcomes for each of the six themes that would ensure people and their families receive the care experience that they expect and that staff are supported to care.

We mapped these outcomes to the Strategic Framework for Action (2015) and Scottish Government (2018 ) Strategic Guidance for Commissioning of Palliative and End of Life Care 2016-2021. We asked key stakeholders for feedback on the draft themes and outcomes. The feedback was evaluated and the outcomes were reviewed again. By June 2019 the final draft plan and outcomes were presented to our Strategic Planning Group and they gave it their approval and support. The Adult Palliative and End of Life Care Plan for Angus Health and Social Care Partnership can be accessed at www.ahscp.scot

Publishing the plan is not the end of our work. The next steps are to develop a purposeful Action Plan to transform words into reality to ensure every adult who wishes it receives high quality palliative and end of life care at the right time and in the right place. For more information contact hsciangus.tayside@nhs.net

A poster about this work is available here: Developing an Adult Palliative and End of Life Care Plan for Angus HSCP

Work experience at the Scottish Partnership for Palliative Care

I’m an S4 student at Portobello High School. This year everyone in my year group got the opportunity to experience a working environment for one week. You could choose from a list of suggested placements or find one yourself.

I decided to come to the SPPC as I’m very interested in working with people and helping those around us – this is the sort of work I would like to do when I’m older. My aunty Caroline who runs The Truacanta Project has spoken about her work and I’ve always thought it sounded great. I like the fact that it is breaking the stigma around talking about death, dying and bereavement. As I feel that in our society it is a topic which is so often avoided.

I knew a little bit about the work beforehand, but my knowledge and understanding has grown immensely. I learnt a lot about the Truacanta Project and the different events that are on throughout the year, for example, To Absent Friends and End of Life Aid Skills for Everyone. I know lots about Death Cafes and think they sound like a brilliant idea. I have been working on a proposal for a teenage death café which has been fun.

I’ve learned so much from my time with the SPPC. Being in an office environment is very different from school. Everyone was working on different tasks including me which gave me a sense of independence. I have been asked to do things I normally wouldn’t do such as write a blog post, create flyers and leaflets, write a proposal, and manage their social media. I attended a meeting with one of the shortlisted Truacanta communities where I learnt about their goals and hopes for their community. It was interesting to hear how they hoped to improve the conversation around death, dying and bereavement and how they wish to bring awareness and support into the local community.

I will take lots away from my time at SPPC. I gained an insight into how a charity works and saw how a good idea can turn into a reality. You don’t need to be a powerful person to make a change - if you have an idea you can make it happen with hard work and determination. I saw ordinary people wanting to make an impact on society and people’s perception on death, dying and bereavement.

Overall, I think work experience is a great opportunity for high school pupils as it gives us an insight into working life and the adult world and gives the chance to learn new skills and do tasks we might not normally do.

Lastly, I would like to thank SPPC for being so welcoming to me as it can be quite intimidating going somewhere new.

By Poppy Gibb-Kenny

My QNIS Experience - Reflections of a CHAS Diana Children's Nurse

The Queen’s Nurses Institute Scotland (QNIS) celebrates its 130th Anniversary this year. Its aims have always been to promote excellence in community nursing to improve the health and well-being of the people in Scotland. Here Caroline Porter, Diana Children's Nurse at CHAS describes her experience of the QNIS 2018 Development Programme:

It wasn’t until I was in the programme that I realised how much I needed it. I have been a nurse for 30 years working in acute, community and hospice settings. If I am honest I was struggling. I found myself looking for opportunities to run away and escape the pressures I found myself under. I was close to burnout but was too afraid to admit this to myself never mind anyone else. I am my own harshest critic and although I didn’t realise it at the time, I was making my own role harder than it needed to be.

Every nurse does a difficult job and I am no different. I work for a brilliant organisation Children’s Hospices Across Scotland CHAS. My role requires strategic, educational and clinical commitment. I meet families in hospital, often at a point of crisis in their lives, who may be facing the potential imminent death of their beloved child. I quickly have to form an intense, trusting relationship with families to explore potential choices around preferred place of care and preferred place of death.

As nurses we tend to focus on our patients, their families, our colleagues, our own family and friends but rarely ourselves. That is what the QNIS programme has done for me. It has made me stop running and made me pay attention to myself and value my own needs.

During the five day residential workshop in Balbirnie, we were introduced to the concept of Action Learning. We were grouped geographically and our group became affectionally known as the Westies. Our group very quickly developed a profound, strong bond and connection based on trust and new found friendship. The group became a safe place to explore where I really was. I have always found it easier to say I am ok, rather than to actually express to myself or another, how I was really feeling. I had such a fear of exposing my own vulnerabilities as I perceived this as me showing weakness. It was emotional for all of us but I learned that it is ok, not to be ok. I learned that most of us have similar feelings, but as nurses we bury them quite deeply. What I learned through the programme was that my vulnerabilities were my strengths and not my weakness as I had previously thought. Creativity is fed on vulnerability and it is what makes me good at what I do.

Following Action Learning we met our Coaches for the programme. Again I wasn’t really prepared for the impact. How could talking to someone for an hour a month make me a better Diana Children’s Nurse and how could this impact on the issue for exploration I had identified? The focus of my coaching was primarily on Caroline the person not Caroline the Nurse. I have been historically taught through my two modular RGN and RSCN trainings, that you left your personal life in the locker when you put your uniform on for the shift. I have learned that we come to work each day as a whole person, not just Caroline the Nurse. It is impossible to fully separate the two things, it’s the combination that makes us so valuable as nurses. Kate my coach explored with me what I wanted from the coaching. I felt I wanted to bring the old Caroline back, the less stressed, good fun and care free Caroline. We explored what I had being doing to myself and focussed on the internal saboteur that reigned firmly in my head. The imposter syndrome that plagued me at most strategic and clinical meetings but neither strangely present when I worked directly with children and families. This was always my comfort zone.

I discovered that both my internal saboteur and imposter syndrome where predominately creating the level of stress that I felt under. It was me that was creating this stress not anyone else. I was making my role far harder than it needed to be.

Kate pushed me out of my comfort zone and requested I approach ten people to acknowledge me in three different ways. This felt really awkward as surely people would consider this fishing for compliments. Prior to the programme I physically batted compliments away. “Oh it’s just my job” or “anyone would do the same” were my normal responses to any compliments, I think this is the same of many nurses. If you think about it, it’s quite rude not to acknowledge, accept and thank someone who has taken the time and effort to compliment you. I have learned to accept compliments and to bank them as a resource of strength. Towards the end of the coaching programme, Kate asked me had we brought Caroline back. My answer was no. We didn’t need to because I was comfortable being the Caroline I am today, not needing to be someone of the past. I am enough!

Kindness is such a powerful, free resource that we all possess. I have always considered myself a kind person. I have never doubted that I am extremely kind to my patients, their families, my colleagues and my own family and friends. The only person I wasn’t kind to was myself. Kindness has been weaved throughout the QNIS programme. Learning to take time for myself was a hard lesson but I have learned to embrace it. I was a sceptic of the concept of Mindfulness but now I am a complete convert. Again a simple free resource, giving yourself three minutes a day to focus on the simplistics of breathing and relaxation. It is something that everyone can achieve. The hardest part I have found is sustaining it. I have slipped at times, forgetting to place that importance on myself but the network I now find myself in with the other 20 Queens Nurse reminds me often to reconnect.

So the reality was I was close to burnout. I was hanging on by my fingertips, looking for any opportunity to run away. But it was me that placed this pressure on myself, not others. QNIS has got me looking forward to the next ten years of my career. I am ambitious, I am going on to do great things within Children’s Palliative Care. As nurses we need to learn to start by being kinder to ourselves. I firmly believe that my story is not too different from the many others who strive to do the best for the babies, children, young people, families and patients we all look after. I hope my honesty resonates with others.

Caroline Porter is a Queen’s Nurse and Diana Children’s Nurse, West of Scotland, Children’s Hospices Across Scotland. She can be contacted at: carolineporter@chas.org.uk

Reflections from Dr Derek Doyle

As I sat at the bedside of my much-loved wife dying in St Columba's Hospice a few months ago my mind inevitably went back 40 or more years to things that were said to me in those 'early days'. The people who uttered them would never have thought of them as so important as to be repeated years and years later but history has shown they are. Let me share them with you now but not in any special order.

I am indebted to many of the pioneers of Palliative Care here in Edinburgh, many UK cities, most European countries, North America, Hong Kong, Japan, New Zealand and Australia.

Read, then stop and think!

"Palliative care is just good, compassionate care - very much needed but not a new discovery."

"Hospice /palliative care is no more / no less that just good compassionate caring."

"Doctors are getting better at keeping people alive but they seem to forget that all life must have quality rather than quantity."

"From their student days doctors have been trained to see death as a mark of failure. Who wants to work with failure?"

"Doctors seem to have been taught more about opioid dangers than their genuine benefits."

"Good doctors have been giving excellent palliative care for years but did not give it a fancy name."

"Contrary to what so many hospital doctors think, GPs are not idiots. They should try it for a month!"

"How do you prevent this palliative care ward becoming like all the general wards in this hospital?"

"There would be fewer calls for euthanasia if all doctors were up-to-date on pain management which is getting better year on year."

"Are GPs really so busy, even in an occasional evening, that they cannot visit a patient in the local hospice?"

"Listen to the nurses - they often know more about a patient than doctors think."

"Don't snigger at a patient wanting someone to help them pray or read a passage from the Bible for them - most people look for spiritual (though not necessarily denominational) meaning as death approaches."

"Your new specialty - Palliative Medicine - will only survive and justify its existence if it gives high priority to research."

"Remember to reassure patients and relatives that research is not experiments on them."

"Remember that many ( possibly most) dying people secretly wonder if they are dying because of something they have done or failed to do."

"Take every possible opportunity to teach students - medical, nursing, divinity....... Time spent on tutorials is NEVER wasted."

"Remember that Mr and Mrs Public think medical research is experimenting on animals and dying humans. The very word can upset some people."

"Remember that many relatives of a dying person wonder if they are candidates for the same condition."

"Old-fashioned as it may sound, most patients like doctors to shake their hand on ward rounds or to hold a hand of a doctor or nurse speaking to them."

"No matter how busy a palliative medicine doctor is, 10-20 minutes with the closest relatives of a new patient is NEVER wasted time."

"Always explain why a test is being done and how it might help (good practice anyway)."

"Ask first, and if a patient wants to know why medication is being changed, explain."

"Remember that most people are unsure what 'lesions', 'tumours', 'malignancies', 'cancers', and 'sarcomas' are!"

"Try to explain as much as possible to terminally ill people but do not bewilder them more than ever - they are often very muddled anyway."

"Do hospice doctors really know what life is like in a frantically busy, under-staffed, under-funded ward in a general hospital?"

"I expected to see the nursing staff fraught, nervous or red-eyed from crying. What's the secret?"

"Two years ago I came on this committee looking at your application for specialist status of Palliative Medicine. I was opposed to it and ready to walk out. Now I see it as one of the greatest developments in Medical Care in a generation."

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

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