MND conference raises awareness of disease and importance of patients’ voice

This year’s St Christopher’s MND annual conference was titled Road to Awareness. Whether it’s making trials more patient-friendly, reducing patient and carer fear around choking, accepting patients’ wishes to withdraw non-invasive ventilation, or simply just asking patients what matters to them, all of the speakers recognised this crucial element of care and support for people with MND.  

The stage for the conference, featuring a mix of clinical and research updates as well as lived experience, was set by its chair Dr Jemeen Sreedharan, Wellcome Trust Senior research Fellow and Honorary Consultant Neurologist, King’s College, London – our long-time partners on the conference.

Dr Sreedharan said that this long-running annual conference had grown and grown, still fulfilled the same objective of providing a multi-professional audience with the chance to share experiences and advances and understanding of Motor Neurone Disease (MND). But, he added, recent and current advances in research made for what he called ‘exciting times’.

Image of Dr Sreedharan

Update on gene therapy and clinical trials

Presentations by Professor Chris Shaw, Professor of Neurology and Neurogenetics and King’s and his colleague Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics, provided some of the evidence to support Dr Sreedharan’s claim.

As Prof Al-Chalabi said, of all drugs trialled over the last 27 years, only four didn’t fail. But he said: “We are getting more hits in recent years and there is a signal of success. We are getting better.”

Positively, he added, while often there was less than one trial a year, there are currently six ongoing and that’s been the case for the last three years. “Interest in MND trials is rocketing,” Prof Al-Chalabi said.

Part of that uplift is as a result of greater investment. Prof Shaw has secured more than $100m for his trials and is in the process of raising another $100m. He shared details of the work he and his team have been doing with antisense drugs. A man in his 40s whose mother had died of the disease within two years, and who carried the same gene, progressed quickly to the point where he was in a wheelchair within nine months. But, being treated with the antisense drug he has maintained full power in his arms and full speech.

For families, Prof Shaw added, having a genetic answer can be reassuring, especially if there is an effective therapy as in that case study.

Prof Al-Chalabi picked up on the point about patients and families and the difficult task of striking the right balance between demand for a faster trials process against the efficacy requirements and need to give drugs the requisite time to establish if they really do or don’t work.

Patient advocacy is a two-edged sword, he said. It’s excellent when it pushes through treatment but can be destructive – for example when patients press doctors to prescribe drugs that haven’t been approved. Prof Al-Chalabi said he totally understood why people advocated for faster testing and approvals but it wasn’t helpful if it led to mistrust of the teams running the trials and doctors.

The multiple trials regimes that operate now, including the traditional single drug approach, the Platform way and TRICALS, which is a mix of both of the former, all face the same challenge of there being no satisfactory rating mechanism. A genuine, patient-centred step forward in trials has been the MND SMART programme which uses non-traditional centres which means people don’t have to travel miles from their home to participate.

MND and Fronto-temporal dementia

Engaging with, and listening to, family members to understand the behaviour changes of a patient, is crucial, said Dr Susanne Watkins, Consultant Neurologist at King’s, continuing the theme, in her talk about MND and Fronto-temporal dementia (FTD).

“It can be really distressing for relatives to lose the essence of someone. They’re not quite who they were, but this can be hard to identify with traditional testing, so we need to talk to relatives as they pick this up early on. The most important part of an assessment comes from the history from the patient and the family,” Dr Watkins said.

About half of MND patients who come to her MND clinic have some form of cognitive impairment, she added, while 15% develop FTD. The same proteins, genes and pathological genes are affected in both conditions.

Just as it’s important for a clinician to use the knowledge and observation of a family member to identify the condition, Dr Watkins said it’s also important to listen to families when diagnosing.

“If families don’t have concerns, then maybe it’s best not to stir things up by giving them a label.”

Building a network of MND clinics across south Wales

In a fascinating and clear overview of MND care in South Wales, Dr Idris Baker, National Clinical Lead for Palliative and End of Life Care in Wales, extended the thesis about the wider value of health professionals to MND patients and their families.

He said their role was as periscopes or warning mechanisms – using their experience to guide people on their journey. To provide this service Dr Baker and his team set about establishing a network of 12 multi-professional MND clinics across South Wales – giving most people an accessible, one-stop shop within 10-20 miles of their home and providing consistent, common standards. With appointments every three months patients can access a team of nine specialisms and benefit from that pre-emptive guidance, helping them to make difficult decisions.

In line with the programme’s objective of making life easier for patients and their families, Dr Baker said the clinics aim to minimise avoidable referrals.

Taking the fear out of choking

Choking is a common symptom for people with MND. It’s also an extremely disturbing symptom and one which has attracted very little research, according to Dorinda Moffatt an MND Specialist Practitioner at Prospect Hospice in Wiltshire.

Many years working with people with MND and experiencing her father’s choking when he had MND, inspired Dorinda to study for a Masters on the topic and to create a simple pathway for people to follow – something that hadn’t previously existed. Discovering that few fellow professionals felt confident in managing choking provided further inspiration. Reducing patient and carer distress was another major driver for her.

“Many people ask if they will choke to death. It is a really common fear, but it is extremely rare. That doesn’t mean it isn’t terrifying, because it is and they need support and reassurance. It’s so important to identify these patients and have a plan in place because every day is literally a matter of life and breath.”

Dorinda has now published evidence-based guidance and 95% of healthcare professionals to have used it say it’s improved their confidence in managing choking episodes. It’s available on the Prospect Hospice website.

Listen to the patient AND the carer

In terms of lived experience, delegates couldn’t have asked for a more honest, transparent and at times almost disarmingly pragmatic testimony from Peter Walsh and his wife Carol.

Retired motor mechanic Peter said he’d pretty much diagnosed himself following a six-week bout of flu-like symptoms when he struggled to hold his head up and developed disconcerting twitches in his limbs.

Both he and Carol emphasised the dramatic change the diagnosis has made to their lives. Both gave up work and, very rationally, set to on dealing with all the necessary practicalities from LPAs to bathroom appliances. Peter also made sure to contact St Christopher’s as soon as possible.

He’s already made some big decisions and formally expressed his wishes not to be ventilated and to die at home if possible.

“I want control of my illness rather than the illness controlling me,” Peter added. “It’s not nice but what’s the alternative?”

Peter acknowledged the huge burden on Carol and she highlighted the need for far greater recognition of this.

“We need respite care because carers become an extension of the person they’re caring for and are not having their needs met,” she said. “Someone needs to realise that carers often have disabilities of their won and need so much support. It’s a real issue for people in our position.”

NIV – “never continue with treatments that are distressing and people want to end”

With a threefold increase in the number of people having non-invasive ventilation (NIV), Dr Emma Hall, Consultant in Palliative Medicine at St Christopher’s, said health professionals need to prepare themselves with what she called the very controversial issue of withdrawal of that ventilation.

Dr Hall added: “The decision to stop can feel ethically uncomfortable but it is absolutely ethical and legal and is not assisted dying.”

She shared a case study involving a St Christopher’s patient who was being cared for at home by her wife. Having completed her outstanding life goals, the patient asked the community team to remove the NIV, as it had become tortuous. The team assessed her capacity, consulted closely with her wife and discussed with the whole MDT and GP. A week later with the patient still wanting the NIV withdrawn, the team did so gradually having commenced medications and she died peacefully 10 minutes later. Dr Hall said the wife and the team felt fully supported and comfortable ethically.

“As clinicians we should never continue with treatments that are distressing and people want to end,” she concluded.

Because MND touches practically every part of someone – practical, medical and their very personhood, the day’s final speaker, Suzana Makowski, Medical Director of Compassionate Care ALS, Massachusetts, said she always asks her patients the same thing.

“What is it that you would like me to know about you that will help me to care best for you?”

To enable patients to prepare for when things will get worse, Susana advocates for initiating what many find difficult conversations.

“People are nervous about this, but it’s like buying snow shovels in advance of winter. It’s one of the greatest gifts you can give families, helping them have their voice heard.

“If we think about a person’s life story, who they are, our role as a palliative care professional and how we can help them to construct the third act of their life then we can help to make that third act meaningful.

“What’s really important is what’s important to the person we’re looking after.”

GPNN nurses championing advancing palliative nursing

Farah Demachkieh, Senior Nurse at SANAD Hospice Lebanon and a Global Palliative Nursing Network (GPNN) Champion. Here, she reflects on their recent GPNN Champions meeting with Heather Richardson, Director of Academic Learning and Action at St Christopher’s Hospice.

A few weeks ago 16 nurses met together virtually to think about advancing palliative nursing and the place of being a leader in that endeavour.

By definition the group that met are working to become “champions” – proponents for the value of nursing; ambassadors for our colleagues doing great work in palliative care and change agents in relation to the impact that palliative nursing can have for people dying or bereaved.

In specific terms, we are working together to champion the new Global Palliative Nursing Network that brings nurses together around the world to advance palliative nursing.

Stronger leaders

We wanted to be inspired to be stronger leaders- through the work of others on the call and nurses that have influenced us. 

When we think personally about our ambitions to be the best nurse that we can be, these aspirations have often been most influenced by observing or studying the work of nursing colleagues – people whose impact on patient care is clear; individuals who can enthuse and inspire teams of people around them; leaders who bring energy and vision to an often tired and dispirited group; leaders who uphold nurses position, role, voices and demands. 

Individually and together we have been shaped and motivated by nurse leaders throughout our careers and also by reading about the lives and work of nurse giants – Mary Seacole, Cicely Saunders, Florence Nightingale to name a few.

Recently, on Waterloo station in London, GPNN facilitator and Director of Academic Learning and Action at St Christopher’s, Heather Richardson read a poem by Professor Laura Serrant, a nurse who had come over to the UK in the Windrush Movement, entitled “You called and we came”. Her commitment to achieving a vision of “health for all” and the personal upheaval she endured to do so is both moving and inspiring. She is a nurse leader of gigantic proportions with real influence, and Heather is keen to be more like her.

Transformational leadership

Our time together as “champions” has been very helpful in this regard. When we met last month we explored the American model of transformational leadership – focused on actions and behaviours to create then help others achieve a shared vision. It encourages modelling, enabling and encouraging as well as challenging processes that are unhelpful.

We looked through its perspectives at some of the shared characteristics of nurses Cicely Saunders and Florence Nightingale, articulated by Marie Cooper and Heather Richardson some years ago. There is strong resonance – a visionary leader and protagonist for excellent care amongst others.

Then we talked together about areas for collective and personal growth to become stronger leaders – achieving change and impact at local, regional and global levels. Recalling that event, thoughts that seemed to resonate the most are:

  1. How many leaders already exist in our membership; yet individuals often don’t see themselves as such. We owe it to each other to notice and articulate others’ leadership qualities so that they can refine and leverage them to better achieve their goals
  2. How supportive the network is as people grapple with personal and professional reflections of frustration when they can’t achieve the leadership potential they have or could bring to the challenges they face
  3. How valuable models such as that of “transformational leadership” are. We hope fellow champions will reflect on where they want to hone their skills then seek out help from the network (mentoring, coaching, formal learning) to become even more effective
  4. How important it is to model to fellow nurses how they can transform the death course; as the life course, of patients and their families and give them a sacred opportunity to a dignified goodbye, a goodbye that patients would want to experience, a goodbye that caregivers would want to cherish and remember and a goodbye that nurses would want to feel proud of. We both frequently encounter nurses who do not understand the extent to which they can contribute to improving people’s end of life moments because they have never seen how it can be done differently; instead they are very focused on saving lives. It is our role as champions not only to talk but also to model what palliative nursing is about.
  5. How “encouraging the heart” as one element of the transformational leadership model lies at the heart of palliative nursing that is driven by compassion. This reinforces the leadership attributes that are inherent to palliative nursing, often echoed by the champion nurses.
  6. How challenging the nursing process and advocating for and adopting “a public health narrative” could serve as a crucial act to advance palliative care. Nurses are very, rightfully, attached to the patient-staff narrative; however, in palliative care communities play a fundamental role in end-of-life care and as such nurses have the opportunity to empower communities to reclaim their unique role in supporting dying patients and bereaved family members.

We believe that the champions group and the wider nursing network creates a safe space for all the champions “to be” and to reflect on different attributes that they can hone, including leadership ones thereby helping enhance palliative nursing and fellow nurses.

Thank you all for your contribution.

Farah Demachkieh

Creative connections made at a conference

The impact and importance of creative arts as part of a holistic approach to treating what Dame Cicely Saunders described as Total Pain, was high on the agenda as delegates were treated to inspiring presentations full of real-life case studies demonstrating the effectiveness of several different approaches.

There were several recurring and strong themes for delegates to latch on to and to take back to their workplace, including the importance of creating a safe place for people to express themselves, even if that can take many different forms, the need to focus on what matters most to people rather than what the matter is with them, using creative arts to make a connection with people, the power of the metaphor and, last but not least, ensuring that as a professional working in palliative care you’re equipped to deal with the inevitable ‘tsunami of pain and suffering’ that comes with the job.

Mandy Bruce, Psychological and Spiritual Care team lead at St Christopher’s, opened the conference spelling out its intention; to give people a better understanding of the various ways of using creativity in palliative care to honour the patient experience.

She said that by understanding and treating, in the widest possible sense, people’s physical, psychological, spiritual and social pain, a multidisciplinary team can provide the right support at the right time.

“It’s human nature to resist pain and to try and push it away. We’re not trying to fix it but help them to turn towards it and create a space in which they can face it,” added Mandy.

“Creative therapies provide a safe and secure therapeutic space to explore what works, warts and all. We reach into pain and suffering in a way beyond words.”

Mandy and her colleague music therapist Sean Kenny shared four case studies illustrating the effectiveness of giving people a chance to experience what it means to be mortal. These included a A retired military man, bashful about his creative capabilities, who made an armadillo out of clay with a thick outer shell and a crumbling interior, an apt metaphor for how he felt. There was also a middle-aged man struggling with unresolved grief following his mother’s death and challenged by his own terminal diagnosis was helped to process his grief and pain and come to terms with own impending death through music, singing songs he sang with his mother and then recording a CD for each of his children.

Picking up on the theme of the safe and secure space, Art psychotherapist Deborah Kelly described the success of Groups in Nature, a weekly group she set up in the woods in Sussex.

Nature, Deborah said, provides a supportive and creative space for people. Just being in nature helps our mental and physical wellbeing and we’re hard-wired to love open spaces. And by witnessing the changing of the seasons we can reflect on the cycle of life and come to terms with the fact that we’re part of something much bigger than ourselves. People reported that it gave them a sense of belonging, relieved loneliness and helped them to understand where they would like to be cared for and to die.

Linsey Clark, Dance Movement Psychotherapist who works at Weston Hospice Care in Weston-Super-Mare, talked about a very different but equally secure, safe place for people to come together and express themselves – in a closed room in the hospice. In her talk: When the door is shut, we shut everything out, she shared the work she does introducing patients from the hospice to dance.

Everyone in the room has something significant in common, they can take comfort from it but don’t need to say it. Being together in a room with the door shut provides a further security – allowing them, Linsey says, to feel no limitations, to push boundaries, readying themselves for the unknown. She added that while she can’t change’s people’s outcomes or take their pain away, she can help change their experience of that pain.

Drama therapist Peter Darby-Knight highlighted the power of stories in the palliative care setting, in his talk, Once upon a time. With every example of the impact stories can have on people, he came back to the same powerful point – connection. Whether it’s the 4,000-year-old tale of Beauty and the Beast or the cowboy films featuring stoic, granite-jawed heroes like John Wayne and Clint Eastwood that his father so admired, we all find our own connection in stories.

Peter illustrated this with the story of a teenage boy struggling to come to terms with his mother’s terminal diagnosis and who was very reluctant to engage with him. They made a connection over a shared love of Star Wars and soon the boy had written a script full of emotion and grief, expressing his feeling in a way he most likely wouldn’t have without that connection with the story.

Sculptor Lisa Snook focused on connections too. She works with both bronze and clay and says that sculpture is something we feel, that connects to the body as we push and pull the clay. For her, she says, contact with the clay is like a form of meditation aided by the 17,000 touch receptors in our hands.

When clients come to her, Lisa says, they’re often stuck, but touching the clay can help them change that, to make sense of the world.

Find a safe, secure place is as important for professionals working in palliative care as it is for the people they work with, stressed Michael Kearney, who recently retired after more than 40 years working as a doctor in palliative care, starting out at St Christopher’s in the late 1970s.

Most of Michael’s presentation, delivered via video link from his home in California, was aimed at the health and social professionals in the room and designed to provide them with some tools to cope with the pandemic of burnout to which everyone is vulnerable, he said.

Deep security provides people with the resilience to stave off burnout’s three main symptoms; overwhelming exhaustion, depersonalisation and low personal accomplishment.

Take away that sense of deep security and, Michael said, we find a lot of unhappy people walking around with protected hearts, cut off from creativity.

Michael did offer some pathways back to security and that all-important resilience – all based around different models of self-care to help you live better with the tsunami of pain and suffering you come across. He used the metaphor of water to describe three ways of coping – traditional self-care which is like holding your breath under water and then come up for air. The second type is self-awareness self-care which is like breathing underwater. While the third approach, which came to Michael on a walk in his favourite Californian woods, involves letting the water, or experience, flow through you.

St Christopher’s nurse grateful her book was presented to Pope Francisco

Maria Aparicio with book

Just how did a book co-written by a nurse at St Christopher’s end up being presented to the Pope in Rome?

The book, Gratitud y cuidados paliativos (Gratitude and Palliative Care) (Gratitude and palliative care. A dialogue between philosophers and clinicians – Ediciones Universidad de Navarra ( was the outcome of a nine-month project which saw healthcare professionals and philosophers meet online and in person fortnightly, for nine months to discuss the impact of gratitude on doctors and nurses working in palliative care and to reflect on the essence of gratitude in palliative care. You can read more about that in this article.

Facilitated by the research team called ATLANTES, at the University of Navarre in Pamplona, where Maria did her PhD on this topic, the project culminated in an event that saw 400 healthcare professionals and philosophers join in person and online for a conference about the findings. This then then led to the book.

Maria and the ATLANTES team started to study the topic of gratitude more than 10 years ago, first analysing the content of letters of thanks that were received by the palliative care teams. They then followed this up with a major project about the impact that expressions of gratitude have on those professionals.

“Most of us who work in palliative care keep a box in our house,” she adds. “We all have letters and tokens of gratitude, some of which cost very little but are absolutely priceless. We felt that most of us when we are feeling down or lost in what we are doing, we will come back to that box and find renewed motivation. It’s like fuel in a car or vitamins for the body. We thought it was really important to bring more knowledge about it, so we decided to make a systematic study as none was found in our literature review.”

Like any gift or card, some mean more than others. The research identified criteria for determining their significance, one of which is the nature of the relationship with that individual. Equally, Maria says, a look, smile or hug of appreciation can carry as much or even greater meaning as a material gift – as discussed in this article.

Gratitude is not exclusive to the palliative care field, Maria says. “In fact, it’s strange because the gratitude we receive is not because we have cured the patient, but because the care that we provide usually goes beyond the medical care.”

Also, Maria adds, that being receptive to people’s gratitude is essential for maintaining a balanced relationship, “Sometimes as doctors and nurses we feel like we’re just doing our job and we don’t deserve the thanks. But if they want to give something back we have to allow it and open up to it to stop that hierarchy. But let’s be very clear that we do not work expecting any gratitude”

Maria says that while she still appreciates and welcomes every token of gratitude she receives in her role as a nurse supporting people in the community, her research has given her a greater awareness of its effect on her and her nursing practice.

“I feel like I am carrying all the gratitude I have received in my life with me. That doesn’t mean any new thanks aren’t welcome, because it always is, but all of those nice words people have said are in my skin and in my memories and I feel very grateful and blessed and they are part of who I am now.”

So, finally, how and why did the book reach the Pope?

Pope receives book co-written by CNS Maria Aparicio

Maria reveals: “The Pope is a big supporter of palliative care.  One of the directors of my thesis at the University of Navarre happens to belong to a committee at the Vatican. He travelled to Rome once or twice a year and he usually will have a meeting with the Pope. Then we thought that as a gesture of gratitude for his support of palliative care, he should offer a copy of the book on this occasion. He did and Pope Francisco appreciated it!”

“It is something that you do not expect to happen, it is amazing. I particularly love this Pope, so I am really grateful and thrilled that he has a copy of our book.”

Creative arts therapies conference brings medics and therapists together

Sculpture, storytelling, song, paintings, poetry, dance and drama. Some of the UK’s finest exponents of using these for therapy as part of a holistic approach to palliative care will be gathered at St Christopher’s sixth Facing Death Creatively conference on 30 October.

Continue reading “Creative arts therapies conference brings medics and therapists together”

Learning to be a leader

Almost three quarters of the way through the first year of the St Christopher’s new Advanced Clinical Practitioner and Nurse Consultant Development Programme, I can really say that I am starting to feel so much benefit – and in ways I hadn’t imagined.

I joined the programme in January determined to find the inner leader in me but concerned that maybe I just wasn’t cut out for leadership. I think in the last two or three months I have made a significant leap.

When people ask me now to describe the programme, I refer to it as a leadership course, because that is essentially what it is and I feel like it’s really developing me as a leader.

The most useful element for me has been learning to understand my vulnerabilities. To be honest, when I started the programme, I could not see the relevance and how this would help to make me a better leader. Now I understand that it is vital to be vulnerable and to turn up as a learner – not to assume we know everything and to admit that we don’t.

The sessions we’ve had with the executive coaches Pippa Gough and Jill Maben have been so insightful – making me realise that vulnerability isn’t a weakness, rather it’s an essential quality of brave leadership.

I guess that’s been a massive lightbulb moment for me overcoming my thinking that you’re either a born leader or you’re not. It is a set of skills you can learn and develop and all great leaders have failed and found a way to get back up again.

As well as the great group sessions and the on-the-job learning, St Christopher’s has also given us a list of relevant podcasts to listen to and books and articles to read.

I’ve been listening to Brene Brown’s podcast and finding it very helpful with things like tackling people’s immunity to change.

The programme has focused my development by working through the competencies and capabilities set out in the programme and that’s been enhanced now by working very closely with one of the medical consultants here at St Barnabas Hospice. She is equally excited about the programme and has compared the style of training to that of her previous palliative care registrar programme.

As part of the programme, we have to complete some case-based learning. That involves working closely with the consultant, identifying complex cases and leading reviews. The consultant then gives me feedback on various elements of the process including notes on my consultation style, communication skills and clinical judgement. These combined with supervised learning events are hugely useful in working towards practising at nurse consultancy level.

While leadership skills have been an essential element of the programme, we’ve also benefitted from some excellent clinical skills learning. Most recently, St Christopher’s Medical Director and Palliative Care Consultant, Dr Joy Ross, did an excellent session with us on complex symptom control. We all had opportunities to ask questions and share experiences. We were reminded that there is more than one way to palliate so long as it is evidence-based.

Going back to where I started with this blog, it’s important to be reminded that it’s not always about what you know but knowing who to ask and how to ask a good question. That’s the key to learning and to leadership and this programme has helped me to do that and much, much more.

If you’d like to follow in Kate’s footsteps, want to find out more about the Advanced Clinical Practitioner and Nurse Consultant Development Programme and register your interest for the 2024 programme, click here.

Why become a champion of the Global Palliative Nursing Network?

Back in June Marie Cooper shared the news about our new Global Palliative Nursing Network. The first event happened on 11 July and the network is going strong. In this blog Heather Richardson outlines a super opportunity to be a Network Champion!

In December 2019 a number of us met in London to work up some ideas for a new global programme of learning for leaders in palliative care from low- and middle-income countries. We envisaged a relatively small group of around 40 non-clinical leaders, meeting in India the following February drawing on the learning of the Institute of Palliative Medicine in Kerala with support from St Christopher’s.

Heather Richardson 2020

Four years later a thriving global fellowship is in place with a current cohort of learners of 200+ and an alumnus of at least 400 people. Many of the individual learners have become major change agents in their local area/region and are making a real difference through innovative service development, education and training, community connections and policy change. They remain in contact with other members of the Fellowship, share stories of success and challenge, contribute to the next Fellowship programme by acting as a mentor or teaching as part of the faculty.

You may be wondering why I am telling a story of participants on the Fellowship when this is all about a new network for nurses. Well, I have learnt so much about how to create sustainable and significant change through the Fellowship and the way it works. Most importantly, I think we could draw on some valuable principles to guide the way we develop our new network.

1. Invest always in the next generation of leaders

Right from the beginning Suresh, Libby and I were looking out for the participants who were interested to continue to participate in the Fellowship as mentors or teachers. They have created new capacity, they bring energy and commitment to the ambitions of the programme and a freshness to the learning that other participants really value. We want to do the same in the network.

Our invitation to you: Come and become a champion to be part of that next generation of leaders

2. Spend time building the capability and confidence of these new leaders right from the start

They are often already very gifted and interested but they may not know how good they are or where some small changes to their approach and practice could increase their impact significantly.  We are keen to invest in our champions by helping them be strong leaders, networkers, mentors and teachers.

Our invitation to you: Consider signing up for that development opportunity as a champion

3. Create a community of which they can be a part

So many of the outstanding pioneers on the Fellowship were professionally lonely and isolated in their efforts. They didn’t get feedback when they did something amazing; they weren’t supported in their efforts to do something really challenging and most of the time they were planning and implementing their ideas without reference to others with comparable experience. Being part of a community that cares can change that and we are keen to create that for the new champions. We don’t need or want everyone to be the same in the community; in fact we welcome difference. We would love this community to be rich and vibrant – drawing in nurses from different regions in the world, different specialties and different contexts of care.

Our invitation to you: Consider joining the community if you enjoy learning with others, supporting their efforts and sharing your own challenges and opportunities

To apply to become a champion email

Click here to join the Global Palliative Nursing Network.

Hospice care fit for the future: a rehabilitative approach

If, like many health and social care professionals right now, you’re struggling to see quite how you and your organisation can provide personalised end of life care for a steadily increasing population of older people, you might very well want to join us for our annual Multi-Professional Academy event in October – which this year has an especially relevant and practical programme.

The challenges to health care systems across the world are ever growing. As medical care improves, people are living longer, frequently into late old age. Just like at every other stage of life, people approaching the end of life want to be treated as individuals and to enjoy as good a quality of life as possible. But the changing demographics are creating a serious challenge for all those working in healthcare, particularly for palliative care teams. This can lead to people feeling like they are in the ‘waiting room’ of death rather than living their lives.

Good palliative care enables a sharp focus on the individual and their level of function (physical, emotional and social). Effective and personalised goal setting can add value and quality to life, thereby improve wellbeing. Shrinking resources mean this formula for good care is becoming ever more challenging. Time pressures on staff are also leading to more transactional relationships with patients, in which care becomes task-oriented and algorithm led. As we lose sight of the individual, meaningful interactions fall by the wayside.

“It doesn’t matter if you have 5 minutes or 50 minutes, make them count.”

In a recent lecture, Max Chochinov, Professor of Psychiatry at the University of Manitoba, said: “It doesn’t matter if you have 5 minutes or 50 minutes, make them count.” This is a call to all professionals to make the most of each interaction we have, however big or small, we can still have the power to make sure the individual is heard and upheld as who they are.

What matters to you? is a movement that has been growing globally in recent years. It’s such a simple question to ask and one that enables us to put the person we’re supporting right at the centre of what we do. That’s why we celebrated What Matters To You Day here at St Christopher’s on 6 June, sharing the campaign’s key messages, asking the question and encouraging our staff and visitors to do the same.

What Matters to You

It’s important to realise this isn’t just a message for us as professionals. We should also be taking a moment to ask the people that matter to us, ‘what matters to you?’ We’ve also developed our new model of rehabilitative palliative care around this fundamental question, to include all our colleagues – making it relevant to all and everyone’s business, not just us physio and occupational therapists. That’s because this is something that we can all be getting involved in – supporting those around us to be the best that we can be.

This thinking isn’t new. The original model was formally published by Rebecca Tiberini and Heather Richardson in 2015 – Rehabilitative Palliative Care: Enabling People to Live Fully Until They Die. Any student of palliative care will know that the concept even pre-dates this, with its origins to be found in the work of St Christopher’s founder, Dame Cicely Saunders. “All the work of the professional team… is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible,” Dame Cicely wrote.

Some nursing colleagues will see similarities with the philosophy of the Lantern Model, understanding the importance of putting the person at the centre of everything we do as we strive to manage the needs of a growing population of older people with multiple co-morbidities.  

Keen to share this approach more widely, our Multi-Professional Academy Week will this year be dedicated to Rehabilitative Palliative Care. This annual event at St Christopher’s attracts people from all over the world who come and immerse themselves in what we do in an intensive five-day programme. The week is packed with workshops, presentations and practices. Participants also get the chance to witness care in action with our clinical teams.

Helena Talbot-Rice, our Rehabilitation and Wellbeing Consultant Lead, will provide attendees with a really solid grounding in, and exploration of, the model, how we can support people to be the best that they can be Throughout the week Helena and the team  will also work with peopleto think about how they can best apply the approach in their practice.

Among other highlights of the week, Heather Richardson, St Christopher’s Education, Research and End of Life Policy Lead, will facilitate sessions designed to inspire you to really grasp the wider context of the model and consider how you can influence and effect change, whatever your role. While Mary Hodgson, our Head of Community Action and Learning, and Libby Sallnow, Honorary Senior Clinical Lecturer at St Christopher’s, and co-author of The Lancet Commission on the Value of Death, will curate a discussion about the wider context of death, recognising its place as a social event.

In the current world economic climate, it’s more important than ever that we see death not as a failure of medical professionals, but a natural process supported by the people that matter most to us. By engaging with communities and reacquainting them with this process we enable people to talk about death, their death, and their wishes. We can then enable these wishes with health care interventions being the adjunct, not the main part of this story.

Rehabilitative Palliative Care

This Multi-Professional Academy will take you on a journey through all of these issues. It will challenge your thoughts, it will encourage you to challenge the processes in which you work and provide you with support and motivation to take your ideas back to your workplace and to make change, to make a real difference to the people that you support and the quality of their lives.

For more information about the Multi-Professional Academy, 9-13 October, and to secure your place, click here.

Gail Preston, Physiotherapist and Visiting Lecturer

When community and professional learning collide

It was the great American philosopher and educationalist John Dewey who said: “If we teach today’s students as we taught yesterday’s, we rob them of tomorrow.”

In other words, education must keep evolving if it is to remain relevant and have the desired impact.

With this front of mind and our stated aim at St Christopher’s CARE to provide learning that’s relevant for both professionals and the community, my role and that of my colleague Mary Hodgson have changed. We are Co-Leads of CARE. I have responsibility for professional learning, while she takes the lead for community learning.

Working closely together over the last few months has been truly eye-opening for both of us, but I think for me in particular. It’s made me re-evaluate our whole approach. In the coming months I hope you’ll come to see a subtle but significant shift in emphasis.

If we are serious about providing more person-centred care to more people, then we must put those people at the centre of our education.

At each of the recent conferences we’ve hosted here at CARE, it’s always the first hand stories that stick and motivate people to change and that is the answer to how we should work in the future.

Historically, we’ve talked about people with lived experience. From now on, we’ll refer to these hugely important people as lived experience advocates who will influence what professionals learn and how they learn with us because there is so much power in the cutting edge ideas they can share. Storytelling and people’s experiences will be a crucial thread running through everything we do.

Mary and I have devoted a lot of time to thinking about this approach. This includes comparing it against the Four Cs of our pedagogical framework: Collaborative, Current, Challenging and Context Specific. Whichever way you look at it, putting lived experience advocates front and centre aligns perfectly. It’s clearly Collaborative. They provide the Context and the Challenge as well as ensuring it is Current.

We’re very keen to include you, our community of learners, both professional and community, to be a part of this process of change. So, look out for a festival of learning in the coming months as we run a season of events to model what future professional and community learning will look like and how they will influence each other.

To give you a flavour of what to expect, consider Advance Care Planning. It’s a hugely important issue for people to be enabled to write down their preferences and share the with their loved ones. But ACP is a very clinical, medical, impersonal term. So, we’re planning to run a conference that’ll focus on the issue but, crucially, be run by lived experience advocates. They will invite the professionals into their space, as it were, rather than the other more traditional way – shifting the power dynamic to influence positively the way we approach and talk about this critical issue. More information about the ACP conference be announced soon.

As hospices, we want to reach more people. To do that we’re going to have to be bold, be innovative and cutting edge. I think that colliding community and professional learning will play a key part if we are to succeed in this quest.

Introducing the Global Palliative Nursing Network


I am delighted to be introducing you to this new network launched via the Centre for Awareness and response to End of Life (CARE) at St Christopher’s on 12 May, the International day of the Nurse.

Global Palliative Nursing Network

The Global Palliative Nursing Network has been set up in response to many nurses who, having participated on various CARE programmes over the past few years wanted to stay in touch. They told us how they really valued conversations with peers and the opportunity to learn from colleagues working in different parts of the world. They enjoyed the similarities and differences with their own experience and the access provided by peers to contemporary nurse thinking

The new network will focus on personal and professional development. We are currently generating an early programme of learning and want to incorporate issues such the use of an ethical decision-making framework for every day nursing practice. In addition we are keen to consider emerging contemporary issues of interest to our members, for example ‘Re-encountering historical trauma at the end of life’ and advances in trauma informed care. This is in fact the topic for our first Spotlight Event which will take place on 11 July at 1pm (BST).

We welcome any nurse involved in providing palliative care for children, adults or both, across any care settings. We invite you to join and see whether this network could be of value.

We want to connect nurses with nurses and to share their knowledge and insights. Such relationships could help build a profession that is clear about its value, then more confident to design and deliver the care that our communities need and expect of nurses.

If you are a nurse we hope you will come on the journey with us as we grow the network and what It can offer your colleagues and profession.

What you can expect

When you join us, you can expect:

  • Blogs about contemporary nursing issues of relevance to palliative care with on-line opportunity to discuss the implications for practice.
  • A variety of webinars related to nursing available to a global audience.
  • Access to a broad range of virtual learning tools and resources via CARE
  • An invitation to an annual global nursing conference
  • Connection with a broad network of colleagues offering support and new insights into innovations and developments in nursing.

What we ask of you

This network is free to join but we hope that you will bring your expertise, insights and connections to the group and help us grow and flourish as a community. We hope that relationships will be reciprocal, and are confident that whilst many members may seek support for themselves, they may also be willing to engage with others who could benefit from their expertise.

We look forward to meeting you there!

Marie Cooper

Marie Cooper
Senior Nurse Advisor

Celebrating Palliative Care Nursing

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