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St Christopher's, Author at St Christopher's Hospice

QELCA® leaves the nest!

Liz Bryan
Liz Bryan, Independent Education Consultant

QELCA® (Quality End of Life Care for All), now a registered UK Trademark, has supported the development of teams and services here in the UK, and more latterly abroad, since 2008. Originally designed by me (Liz Bryan), as Director of Education and Training at St Christopher’s, it has been used by palliative care providers to extend the end of life care skills and confidence of local partners. The goal is always to identify need, understand obstacles (personal, cultural and systemic) and find practical ways of working together to ensure more compassionate and culturally sensitive end of life care.

QELCA® Trainers can be found in Scotland and across England at organisations that have discovered QELCA®’s effectiveness as an educational resource and have become QELCA® Satellites or affiliates. Internationally, QELCA® has been used by teams in Australia, Argentina, Romania, South Korea, Taiwan and Hong Kong. QELCA® Satellites, are based in Beijing, China and Sao Paulo, Brazil. Both LWPA (China) and Premier Institute (Brazil) are pioneering social change organisations with a national reach. They have worked closely with me, now a Senior Associate of St Christopher’s CARE, to establish internal independent infrastructures that support the ongoing training of QELCA® Trainers to ensure the delivery of QELCA® across each country. Testimonies from QELCA Trainers and participants have caught the attention of key strategic leaders including those representing government.

What makes QELCA® distinct and attractive as an educational resource is the learning theory that it draws upon to guide the programme’s design and methodology. Transformational learning described by learning theorist, Jack Mezirow, is triggered by a catalytic life event or experience which ignites a discontent and desire to evaluate and change self, primarily, but invariably the culture or systems in which we live and/or work.

QELCA® acknowledges that in a way significantly different from most other care situations, the delivery of care to the dying person and their family is very much influenced by culture, beliefs and personal experience. Even the institutional norms of our organisations are likely to impact how we deliver care. QELCA®, by giving new and meaningful experiences both by immersion in practice and in carefully designed, culturally adapted, experiential classroom exercises, gives learners the opportunity to explore and reflect on these personal and professional issues.

QELCA® continues to be endorsed by St Christopher’s CARE and I remain a Senior Associate. However, all inquiries can now come directly to me through the new QELCA® website www.qelca.co.uk or by email liz@qelca.co.uk

Panna’s story

Panna

For nurse Panna Siddiqui the hardest thing about having inoperable, Stage Four cancer is giving up the job she’s loved for 40 years and accepting care and support from St Christopher’s.

That’s not to say she doesn’t appreciate the care she’s received. In fact, she can’t speak highly enough of what the hospice has done for her and the way in which everyone involved in her care has treated her. It’s just the challenge of coming to terms with having to trade places.

Panna

What matters most to Panna now is staying at home.

Her family and the team from St Christopher’s have made her feel confident she can fulfil that wish.

“Even before I had my diagnosis, I always told my boys that I would want them to bring me home. I don’t want to be anywhere else in the last stages of life and Helen has reassured me that she will be here with me when I need her.

“With everyone’s support and help I can be strong and I can die in my own house.”

“With everyone’s support and help I can be strong and I can die in my own house.”

Panna’s job as a Cardiac Clinical Nurse Specialist at Kingston Hospital, is still open and she says she would like nothing more than to be able to return to work, even if it was just for a day a week.

A programme of sessions with a Cognitive Behavioural Therapist from St Christopher’s at her home, has helped Panna reconcile the need to accept care and to feel more comfortable asking for help.

That’s just one of the services Panna has accessed since her referral to St Christopher’s in 2022 following her diagnosis.

“Thankfully they just took over. I was in so much pain that I couldn’t do even the most basic tasks. With the pain management regime they worked out together I am much better and I’m able to do more things myself. I can’t thank them enough, they are all so supportive.

Panna picks out Consultant Nurse Helen King and Consultant Emma Noble for special praise, but also points to the physiotherapy and complementary therapy sessions she’s benefited from.

Looking back to when the hospital consultant referred her to St Christopher’s, Panna recalls her immediate response.

My first thought was this is the end of life. It’s just going to be comfort measures now. It was scary because only a few months before I had been symptom-free and now I was in the care of a hospice and coming to the end of life.

But it’s not quite like that with hospice support. I’m not able to live completely independently, but I have quite a bit of independence and I am certainly not bed ridden. If they hadn’t helped me, I would be done.”

“I realise now that I can’t work and have lost a lot of my independence, but I have got my family and they support me so much.”

Panna takes huge comfort not only from the support of Helen, Emma and their colleagues, but also from her family – husband Dilbagh, sons Arman and Aqeel and two-year-old grandson Adam who visits every day.

Both sons recently moved to be closer to their mother. Panna and Dilbagh brought them up in the US when his job took him there and Panna also found work as a nurse.

Richard’s story

Richard Howe

When you’re born and brought up in a station house and your father and grandfather worked in the railways, there’s a fair chance that’s the track your life will take too.

It certainly worked out that way for Richard Howe, who, after growing up in Bedfordshire, in a family that ate, drank and slept trains, started work as a 16-year-old in the ticket office at Kings Cross.

More than four decades later, Richard, 57, is hoping that, with support from St Christopher’s, he’ll be able spend the rest of his life at home, with his family, beloved train collection and the sound of trains passing just 50 metres away.

After a career that saw him work at two more of London’s famous termini, Liverpool Street and Victoria, Richard was driving for his night shift as Train Running Controller, at Three Bridges, in February 2023, when he started to feel unwell.

He decided to return home and made it to the front drive before having a seizure.

It wasn’t until six months later, after meningitis and epilepsy had been suspected, that an MRI scan showed Richard had a brain tumour. After two months of radiotherapy at the Royal Marsden Hospital, doctors referred him to St Christopher’s.

Alison, Richard’s wife – who he met for the first time at Victoria station – says her initial reaction to the referral was one of relief.

“We went for our first meeting at St Christopher’s feeling positive because we hadn’t had much support and so we went looking to see what help they could give us,” Alison says.

Since that first appointment in January, Richard and Alison say they’ve received helped in abundance and that’s helped them feel thoroughly reassured.

“Whenever there is a problem and we phone up, someone will immediately call back and provide the help we need.”

“It’s so nice to have someone at the end of the phone that you can tell what’s happening and they’ll advise us what to do or organise the help we need,” Alison says on Richard’s behalf, as he now struggles to recall words.

In fact, with Richard’s condition deteriorating a bit in recent weeks, leaving him weak on his right side and struggling with mobility, the hospice has arranged for carers to come in and help get him up in the morning and the occupational therapists have arranged for a hoist, wheelchair and hospital bed to be installed in their home in South Northwood.

That lack of mobility is particularly cruel for Richard as, less than 20 metres from their backdoor, just before you reach the real railway line, stands a very smart new shed that houses his collection of hundreds of trains and a large track. It was only installed in April last year but until they can fit a suitable ramp it will remain out of his reach.

That’s not to say Richard hasn’t been able recently to indulge the passion that saw him travel almost every UK rail route and many in Europe.

Unbeknownst to Richard, his colleagues had been plotting to mark his 41st anniversary of working on the railways. So, on 28 February, Alison took him to Victoria, ostensibly for a celebration lunch – just for the two of them.

“Richard was already in tears just when his father and sister turned up for the lunch,” she says.

Then they returned to Victoria where Alison told him there were ‘one or two’ colleagues who wanted to say hello.

“When we got to Platform 2 there were more than 150 people there and a locomotive with its name covered up. The director from Network Rail unveiled it and revealed the name – Richard Howe.”

As well as organising for the refurbished freight locomotive to be named after him, Richard’s colleagues also collected enough money for the couple to dine out twice in fancy London restaurants – a treat they used to enjoy together every few months.

 “Until he got ill, I never knew how many friends Richard had. As soon as his colleagues found out he wouldn’t be going back to work they were practically queuing at the door to come and see him.”

Officially, Richard is still employed by Network Rail, but with his sick pay running out soon, he and Alison, who is juggling her job in governance with the NSPCC with her role as a carer, are grateful for the help St Christopher’s social workers have provided with the application for Employment Support Allowance.

Richard Howe

Richard says that while he finds it hard to look forward, he and Alison are both keenly awaiting the complementary therapies sessions they are booked in for at St Christopher’s.

With all the support they’ve received over the last three months, Richard has his mind set on where he’d like to live out his days.

Alison adds “I just want him to be comfortable. Knowing we have St Christopher’s to turn to if we have any issues is very comforting.”

I just don’t think we would have coped at all without them and they just make you feel like nothing is too much trouble.

Alison

Redefining professional identity; a journey of self-reflection and reconciliation

Farah Demachkieh

As a nurse who started her professional career in the emergency room as a bedside nurse and is currently working in palliative care in quality, training, research, managerial, and other aspects, understanding my professional identity has been a journey of self-reflection and several attempts of reconciliation of evolving professional responsibilities and personal values, beliefs, and perceptions.

Professional identity in nursing is defined as “a sense of oneself, and in relationship with others, that is influenced by characteristics, norms, values of the nursing discipline, resulting in an individual thinking, acting, and feeling like a nurse (Godfrey & Young, 2020).” Rasmussen and colleagues, describe factors that affect nursing identity into three categories, (1) the self (who I am or how do I perceive myself as a nurse), (2) the role (what I do in my professional practice) and (3) the context (where I do it or the society and environment in which I practice this role) (Rasmussen et al., 2018).

The concept of professional identity

I got first introduced to the concept of professional identity back in November 2022, by Marie Cooper and Heather Richardson, palliative care senior nursing advisors, during a session on professional identity in a Palliative Care Masterclass as part of the Fellowship in Palliative Care Course organized by the Institute of Palliative Medicine in Kerala and St Christopher’s Hospice in UK. Intrigued by this enlightening session, my curiosity deepened, leading me to join an online workshop series, as part of the Global Palliative Nursing Network, about professional identity spearheaded by Marie Cooper at St Christopher’s CARE in 2023-2024. The workshop introduced definitions, theories, frameworks, and concepts related to professional identity. Most importantly, it created a safe space for nurses and provoked them to self-reflect and share their thoughts, opinions, and experiences relating to their professional identities and its evolution.

The workshop included 5 sessions that focused on reflecting on (1) the characteristics we are proud of, (2) inspiring others, (3) valuing and building our profession, (4) our voice and confidence and lastly (5) creating influence and bringing change. In sharing these reflections, my aim is to chronicle my journey and ignite a similar process of discovery and introspection within you. As this exploration has profoundly influenced my understanding and approach to my professional identity, I hope it inspires a cascade of insightful reflections on the essence and impact of professional identity in nursing within you.

It wasn’t until recently that I recognized professional identity as a unique and important concept which impacts our professional and personal lives, the lives of our patients and our relationships with others within the healthcare system. I never heard of professional identity in undergraduate education. And throughout my professional career; discussions, perceptions, thoughts, and reflections about professional identity have always been implicit, indirect, and mostly personal. It is like something for you to deal with or figure out. 

Nursing aspirations

Back in 2002, embarking on my nursing journey, the reasons behind my aspiration to become a nurse weren’t crystal clear, yet something about this path felt inherently right—a sentiment that has only grown stronger over time. Early in my professional career, and mainly during my undergraduate education, my perceptions about my identity as a nurse mostly stemmed from my environment and surroundings including perceptions of my family, friends, university peers, and society at large. At the time when I joined the nursing school back in 2002, being a nurse in Lebanon was not perceived positively. Hearing phrases like “that is good (being a nurse), but you want to continue to become a doctor, no?”, “why did you choose to study nursing you could not get into med school?” made me skeptical. Nevertheless, as I entered clinical practice this perception shifted, to become deeply rooted in realizing nurses’ pivotal role in directly impacting the lives and well-being of patients and their families and the profound sense of purpose it brought me.

Advancing through various realms of the nursing profession, from bedside care to roles in quality control, research, and training, made me feel less of a ‘nurse’. There is a common perception and understanding that nurses’ core role revolves mainly around direct patient care. It is as if people forget that you are a nurse if you are not involved in direct patient care anymore and if they do remember, they think that you have moved to an easier, less stressful and demanding job. Until Marie Cooper once said to me on a beautiful afternoon in Kerala “you are not any less of a nurse if you are not doing bedside nursing” and this hit home. This affirmation was a turning point to me, challenging the conventional boundaries of nursing roles.

Challenges

“What do you do as a nurse?” has always been a tough question to answer; let alone adding to it a layer of public health education and then palliative care, two disciplines that are not easily described either. How do I define what do I do for myself and to others? Am I a nurse with a public health background? Am I a public health professional with a nursing background? Am I a researcher, trainer, or quality nurse? Or all the above? The challenge I faced was reconciling diverse roles and perspectives, from saving lives in emergency care to ensuring a dignified death in palliative care and from patient-centered care to broader public health and community-based approaches.

My journey took an even more holistic turn upon embracing homeopathy[1] as part of my personal health philosophy. This prompted me to search for underlying commonalities across the disciplines that resonated with me the most—nursing, palliative care, public health, and homeopathy. This is when the “holistic approach” showed up as a central and foundational principle among all these disciplines; where the person is viewed as a whole, and health transcends beyond the physical well-being to encompass emotional, mental, social, and spiritual dimensions. This holistic approach, unfortunately often overlooked, is where nursing excels, leveraging our unique position and the trust we build with patients and families to provide care that encompasses all aspects of well-being.

Professional and personal identities

Identifying these commonalities allowed me to reconcile the various facets of my professional and personal identities, moving beyond a binary perception of my role; “am I a quality nurse?” versus “am I a research nurse?” to a more fluid role with a diverse set of skills; “I am a nurse with different set of skills and expertise in quality, research, training, public health, etc.” This reflection was an eye opener to delving into a soulful and inspiring realm and a unique specialization; public health palliative care, where palliative care, public health and compassionate care come together to empower communities and embrace compassion for a more compassionate world.

We also reflected together on different aspects related to what nursing means to each one of us, touching on the ultimate purpose of nursing, how it can be achieved, barriers and facilitators and how we view ourselves as nurses. A particularly enlightening moment occurred when I got introduced to the concept of “practical wisdom”; phronesis in ancient Greek. It is, as Marie described it, the culmination of honed skills over the years, from assessment skills, creativity, ethical considerations, decision making, intuition, and critical analysis skills to guide decisions on what best to do in a given moment. We do this as best described by Schon’s model in 1983 on how practitioners think in action which he calls “reflection in action”. Schon (1983) describes it and here I quote as “this entire process of reflection-in-action which is central to the “art” by which practitioners sometimes deal well with situations of uncertainty, instability, uniqueness, and value conflict.”This concept is pivotalto practice palliative care nursing particularly in addressing and managing highly sensitive and critical situations such as handling difficult chaotic families, truth telling, conflicts in goals of care, spiritual distress, death anxiety, saying goodbye to a patient, and other situations. In other words, practical wisdom is depicted in asking the right questions, saying the right words, using the right tone, and taking the right steps at the right time. The concepts “practical wisdom” and “reflection in action” came to put names to what I always intuitively knew to be the case.

Reflections

These reflections brought to my attention the significance of vital strategies to bolster nurses’ professional identity, notably introducing the concept of professional identity in undergraduate education; a glaring omission in current curricula where the seeds of our nursing identity begin to sprout. Furthermore, the indispensable role of nursing mentors became apparent in illuminating the path to understanding and evolving our professional identities.

Venturing into the realm of professional identity has been nothing short of transformative on both personal and professional levels, finding answers to longstanding fundamental questions. The insights gained have illuminated the profound depth of nursing, beyond the surface-level tasks to the core of who we are as caregivers and healers, allowing us to navigate the complex landscape of healthcare and our evolving professional and personal values with wisdom, compassion, and resilience, paving the way to personal growth and self-actualization.  

By Farah Demachkieh- Head of Quality, Research and Development at SANAD Hospice Lebanon and a nursing champion of the St Christopher’s CARE Global Palliative Nursing Network.

References:

Godfrey N, Young E. Professional identity. (2020). In: Giddens JF, ed. Concepts for Nursing Practice. 3rd ed. New York, NY: Elsevier.

Rasmussen, P., Henderson, A., Andrew, N., & Conroy, T. (2018). Factors influencing registered nurses’ perceptions of their professional identity: an integrative literature review. The Journal of continuing education in nursing49(5), 225-232.

Schon, D. (1983). How Professionals Think in Action. Basic Books, Inc.


[1] The word ‘homeopathy’ is made up of the Greek words ‘omoios’, meaning ‘similar’, and ‘pathos’, meaning disease. The main law on which Homeopathy is based is the Law of Similars which means diseases are treated by remedies that can produce similar symptoms of those of the patient. Retrieved from https://www.vithoulkas.com/homeopathy/about-homeopathy/

Responding to Marie Cooper “Do you feel safe in our care?” 

Peter Ellis- retired, chief executive, Richard House children’s hospice, East London

Peter Ellis working at his recovery in the gym – March 2024

I trained as a nurse in Sheffield qualifying in 1983. I completed the degree course at what was then Sheffield City Polytechnic (now Sheffield Hallam University). My cohort (only 11 of us!) were the first students in this newly established degree programme. The programme focused a lot on health, before considering illness, models of nursing, psychology and ethics as well as the requisite clinical and scientific aspects. I remember we started by considering health (rather than disease) taking time with health visitors and social care professionals as well as visiting places of work such as factories and going down a coal mine crawling along the coal face. All of this to begin to understand the impact the work place has on our health. It was an amazing experience!

After 3 years of working as a qualified nurse I took up management positions in the NHS, including cancer services at Barts and the London. I finally took up the post as chief executive of Richard House Children’s Hospice which I established and had a great passion for.  I took early retirement in 2017. Then, 6 months later I had a massive stroke and nearly died. I had neurosurgery to drain the bleed in my brain (the thought of my head being opened up still fills me with horror!). I was in hospital for 6 months (including rehabilitation).  I have had a learning experience on both sides of the professional/patient divide. 

I have been left with a severe left sided weakness with no use of my right hand and arm, neuropathic pain, subluxated shoulder and a dropped foot. After discharge I developed epilepsy, had a total hip replacement following a fall, requiring a further 6 weeks in hospital. A number of other falls resulted in 2 more fractures (pelvis and shoulder). It has been a harrowing journey but once home you are left to get on with it, you feel “dumped”. 

Stroke is a terrifying experience and something I will never forget, and it has left me with a new but unintended life. On some days it can feel like a “living death”. I experience a deep sense of pain because of my loss. 

In my view stroke does not have the same profile in comparison to other conditions such as heart disease and cancer. I consider it to be an overlooked condition. Whatever the condition and remembering my introduction to nursing, it is health rather than disease that needs to be focused on, with an aim to live an ordinary life. I believe hope, meaning and purpose are some key determinants to any form of recovery. This is a big challenge but perhaps something nurses can help patients with.

Marie’s article resonated with me. As an inpatient 6 years ago, I still remember there were times when I felt vulnerable and unsafe in my experience of care, which is something Marie expressed as a feature of her care. I use Marie’s own reflections as a reference.

Creating a sense of safety in our nursing

At first, I felt completely out of control, incredibly vulnerable and terrified that I might have another stroke. I often felt very unsafe but did not have any real opportunity to talk about my fear and the massive sense of shock and loss. The only time I had to talk was when I was visited by the psychologist, but this felt “official”.  I do feel strongly that nurses have an important role to play in listening to patients about their concerns, anxiety, loss and questions about the future. I have one memory when a nurse accompanying the doctors on their ‘ward round’ spotted me becoming upset and crying, so she came over and hugged me for a while. It was what I needed as it was about the acknowledgement and it was a kind, human response. 

Compassion is difficult to quantify and objectively identify but many (not all) know intuitively what it is and how it might be expressed. Florence Nightingale conveyed the need for compassion and today the NHS offers A “Compassion in Practice strategy” and the 6Cs values which just emphasises how important this is, which is not surprising. Compassion can be defined as the “sympathetic consciousness of others’ distress together with a desire to alleviate it”.

One evening I expressed my anxiety to a nurse who was behind her laptop on a trolley, as she carried out her drug round. The night was approaching and I was terrified. Would I have another stroke? With every headache, I became anxious. Would it happen whilst I was asleep?  The nurse told me “We all know about your anxiety Peter” as she walked away with her jolly trolly!  I wondered what had happened to the nurse sitting with the patient beside their bed? I felt too much out of control to challenge this as a “disempowered patient”.  I knew if I had asked for something practical such as a urine bottle or a bowl to brush my teeth, she would have called for someone to get this for me but to take time to return to talk with me after the drug round, would have been welcomed on my part.

I did ask one of the care assistants if they had been given any training about loss and grief and how to deal with it and she told me nothing like that had been offered. I wondered how they dealt with the loss patients might express given there was a ward full of people who must have been in deep shock like me and in need of some support in their grief and anxiety. I felt they could not properly appreciate the extent of the emotional and psychological impact on me. I wondered if this might affect the quality of care, not least because they had to absorb this grief and this might be detrimental in their care giving.

It appeared to me that nurse’s recognition of and offering support around loss, grief and managing deep sadness (certainly in my experience) was not very available which is surprising considering the fundamental experience of loss following a stroke. I felt there was room and scope for ongoing learning about managing loss, grief, and dealing with death and dying.

The need for connection

I was surprised that most of the care was carried out by care assistants and I wondered, again, where were the nurses? They gave the impression to be hiding behind their computer trolleys and focused on distributing medication. On reflection, I appreciate their pressure was to manage the heavy workload, including the demand for beds. 

However, I also wonder if they were defending themselves. Defence and occupational burnout are common features in a care environment.  My question is could they be hiding from being exposed to the constant expression of loss and grief? They might find it difficult to deal with it themselves, let alone supporting others experiencing the same under their supervision? Assuming this was the case then regular skilled supervision and other forms of support for example, the introduction of some form of Schwarz round[1] (or similar) might be a positive way of managing the emotional impact.  This can be used for the whole team including nurses, physiotherapists and doctors amongst others. This type of support, to be effective, must be a mandatory requirement, and this in itself would be a significant change in practice, which can be resisted. I know this form of supervision was a challenge to introduce 25 years ago when I managed cancer services.

This also raises questions about the capacity to make this supervision and support available.  How realistic is it?  Will it require additional staffing?  This we know will be difficult in the current environment of stretched resources not just in funding but also the ability to recruit suitable staff.

Apart from not dealing with my loss and grief, no one talked with me about setting goals to work towards. It was only when, at my request, I worked with the physiotherapist to do this with me. We agreed to some short-term goals (e.g. standing up, walking, taking a ride in my car, going out for lunch at the nearby garden centre).  The stroke consultant on her rounds was surprised to see them pinned on the wall beside me. She commented about what a good idea this was. I finished nursing nearly 40 years ago, where a lot of attention was given to models of nursing care which included setting goals. I wondered what has happened to this?

Reducing stress and anxiety

Probably in defence of my horrific predicament, having fun, making jokes, giving out nicknames to the care assistants, to suggesting we sing together in the shower, all distracted me.  A technique I used which is in part due to my ‘can do, cup half full’ attitude personality, but of course not everyone is like me and even then, this distraction activity does not work when I feel especially low.  Dealing with the consequences of a stroke certainly in the immediate post stroke period, is so important. It is a period of time you cannot forget, and it is certainly a period to be managed carefully.   

Would I ever recover?  6 years on I have made some progress, but no one talked with me about how long it would take to gain some recovery but it was certainly not made clear that I would never gain full recovery and crucially how I could understand how to accept this. Where was the honesty to talk with me? Maybe it was considered too early to talk about it, and it might have been seen as being unkind? If this was the case then who would pick this up with me once discharged?  My disability and pain (physical, mental and spiritual), is likely to remain for the rest of my life. At times this is difficult to bear.  It is a documented fact that men in their 50’s who have had a stroke are more likely to commit suicide.  I have on occasion considered this.

Building rapport

The relationship between the patient/client and nurse/therapist is so important as you set out on the journey towards living your life in such a new, unintended way. The relationship has to be authentic and effective in order to gain any positive therapeutic impact. A year after discharge I attended a gym for those with disabilities. I developed a great working relationship with both the physiotherapist and personal trainer. This, for me was incredibly helpful as the exercises became fun (otherwise they can be deadly boring and painful!), and we had conversations, some with humour but some more serious about my predicament, acknowledging the long-term impact of my immobility and loss of independence. Whilst at times I would find this difficult and painful to hear and digest it was important. It is not every physiotherapist or personal trainer who are able to do this but for me I found it incredibly helpful as I consider my long-term future. Managing boundaries need to be considered but we discussed this along the lines of meeting half way up to the boundary. I have revealed a lot about me so, to make this equal should the caregiver/therapist open up something about themselves. Some professionals would struggle with this as it possibly blurs the boundary. My question is could this work as long as this is managed safely and in the right circumstances? Maybe I am being too radical?  This needs a lot of consideration and debate.

My conclusions:

What I have learnt is being confronted with a life limiting condition or in my case a life changing event such as a stroke  is a terrifying experience. It is therefore crucial to in addition to providing physical care for the nurse to be sensitive to and  support the person and their loved ones in dealing with shock, loss and grief.

My response in what I experienced is that those nurses working in support of people encountering such loss, should be mindful to:

  • Recognising the need to take up training and development in handling loss and grief.
  • Knowing how to understand and how to contain and manage the impact on them as well as those other staff they manage and support.
  • Consider building in time for sessions (e.g. Schwartz rounds) to deal with the emotional pressure placed on staff.
  • Developing our approach in working across the boundary between the health care professional and the patient

As a former nurse but also as a chief executive responsible for an organisation offering support of children and young people with complex conditions and disability along with their families, my recent experience opens my eyes about how vital nursing care is in offering support to in dealing with and managing loss and grief and I continue to come to terms with the loss of my intended future and my independence.

I am persuaded that this creates a chance, not only to benefit patients but also for nurses to gain a real sense of fulfilment in their work.

Read Marie Cooper’s original blog – “Do you feel safe in our care?”


[1] A schwarz round is a facilitated forum for healthcare staff to reflect on the emotional aspects of their work with the aim of building a compassionate culture.

The Case for Contemplative Care: We are all in this together

Many moons ago, I was part of a team of Hospice Chaplains that was tasked with attending to the spiritual needs of patients, carers and staff of the hospice community, of which we were a part.

A middle-aged caucasion man smiling in a dimly lit room.
Niall Weir, Chaplain & Writer

We worked together with a small but wonderful team of chaplaincy volunteers – each of whom felt called to that role and had been through a rightly rigorous selection process. That process involved those on the selection panel asking candidates a series of questions, designed to allow those candidates to demonstrate their understanding of the role and to enable the panel members to gauge the candidates’ suitability for the task in hand.

The questions we asked the candidates need not concern us now. Suffice to say that once the interviews concluded, those of us on the panel used to ask a question of ourselves – and the question was this:

‘Is this candidate the kind of person I would welcome at my bedside if I were nearing the end of my life?’

Not an everyday question, I grant you, but a question worth asking nonetheless, not only of potential chaplaincy volunteers, but of anyone who was a part of a hospice community – from the lowest palliative care consultant to the loftiest member of the domestic team. As Sensei Chodo reminded us during the recent conference on The Case for Contemplative Care, ‘We’re all in this together.’

Sensei Chodo & Sensei Koshin, co-founders of the NYZenCenter

I’m eternally grateful to all who took part in that conference, for prompting me to think about the kind of person I’d welcome at my bedside, when my own life eventually ebbs out its little day.

  • Like Mandy, I’d welcome someone who would be attentive to my needs – be they spiritual, existential, medical or just about having my pillows fluffed up.
  • I’d welcome someone who would be, as the Senseis Chodo and Kosin put it, awake at my bedside – awake to me as the person I am, and not just that tricky so-and-so from side room six who hates ice in his gin.
  • I’d welcome someone like Sensei Koshin’s grandmother, who, when she was with you, was nowhere else – the sort of person to whom you’d want to tell your story.
  • I’d welcome someone who was confident enough to enter the reality of my dwindling days and not dodge that reality with the kind of breezy optimism that is designed to dodge elephants in rooms.
  • I’d welcome someone who, as another of the contributors so memorably put it, had, ‘done their work’, by which I took them to mean someone who had looked into their own hearts before looking into mine.
  • I’d welcome someone who’d approach me with a beginner’s mind – someone who, although they’d read my notes, had parked their perceptions and hadn’t made their mind up about me.
  • I’d welcome someone like Rachel, who would be better at asking questions than answering them.
  • I’d welcome someone who was mature enough in their own spiritual tradition to know that even if they were not a person of the book themselves, there was sufficient congruence between us, to mean that we were fundamentally on the same page.
  • I’d welcome someone who, like Molly’s lovely friend George the Roofer, would be in awe of the ordinary and at home with the birds. ‘Consider the lilies.’ as someone once said.
  • I’d welcome someone whose ethic was such that they’d be quiet, curious and brave enough to bear witness to the lasting profundity of the brief encounter.

I’ve met many people who embody those welcome qualities in my time – many of them in and around hospices such as St Christopher’s, where Dame Cicely first made the Case for Contemplative Care all those years ago. Indeed, I met many people like that in the course of the conference of the same name, who led us all in unpacking that case in such a profound way.

And I’d like to be like them – the kind of people who’d  be awake and welcome at the bedside.

Lots of people in a room, facing each other, smiling in conversations.
The Case for Contemplative Care conference, 2024

And, with that in mind, I’m also eternally grateful to those who led the conference, for inviting me to think about how I – and indeed, anyone who so wanted – might go about becoming that kind of person.

Those of us who were at the conference will recall how it began with an invitation to do what most spiritual traditions at the mature level invite people to do, which is :–

  • To be still and to be silent.
  • To be in the present moment by attending to our breathing.
  • To be in our bodies.
  • To be watchful.
  • To have a few tricks up our sleeves to enable us to serve eviction orders on the many monkeys who, without so much as a ‘by your leave,’ will take up squatters rights in our hearts and minds, in an attempt to distract us from the task in hand – the task of realising that we each have it in us to be an awake and welcome presence at the bedside. We already are that kind of person – we simply need to be still and kiss that sleeping beauty into life.

We were wisely invited to adopt this as our committed contemplative practice – preferably imbedded in a sane and accountable spiritual community and tradition that has stood the test of time.

It didn’t bother me that the conference didn’t quite land on its intention to explore the setting up of Communities of Practice around Contemplative Care – quite the opposite, in fact. The conference made me all the more aware of, and grateful for, the communities of practice to which I already belong :-

  • My church.
  • Those with whom I meditate on a Thursday evening.
  • Those in HMP Pentonville, with whom I sit still for half an hour every Tuesday afternoon.
  • Those Communities of Practice such as St Christopher’s Hospice, where Contemplative Care has flourished for over 50 years and continues to do so in the course of wonderful conferences such as this.  

Author, Niall Weir

Specialist heart failure nurse proves success of integrated approach

Witnessing the sudden death of a close friend leaves a mark on everyone. When, as in Isobel Jackson’s case that friend is only 34 and they’d been offered no opportunity to discuss their wishes or preferences for care, it makes a really serious impression – especially given that Isobel is a nurse.

Isobel Jackson, palliative heart failure advanced practitioner

To that point, most of Isobel’s career had been in emergency and acute care. But she decided to write her dissertation on heart failure following the loss of her friend.

Isobel explains: “She was my best friend of 22 years. We knew she had heart failure, but no one even told us there was a possibility she might die so soon or that she had any palliative needs. It really made me think about all the other people that must be in a similar situation, their needs, why they’re not being met and what could happen to them.”

The research for the dissertation opened Isobel’s eyes even wider to the barriers preventing heart failure patients from accessing palliative care. One of the key stumbling blocks she discovered was a failure for healthcare professionals to engage this patient group in open dialogue about their prognosis and the type of care they would like as the disease progresses.

Having completed her studies, Isobel took on the role of Heart Failure Nurse for St Christopher’s in Bromley in a project that’s seen the successful integration of palliative care and mainstream heart failure nurses and doctors.

What does that success look like? Isobel’s proud to relate that the success is threefold. A huge drop in hospital bed days, substantial cost savings and improved quality of life.

“By treating the psychological impact of a life-limiting condition and adopting a rehabilitative approach we’ve been able to add life to years and not just years to life.”

Building on that success in Bromley means Isobel and her colleagues are now engaged in extending their reach in that borough and are taking the model to Croydon and it’s certainly going to plan so far. The aim was to reach 150 new patients across Bromley and Croydon within 12 months. They’ve exceeded that target after just nine months.

Long term, she says, the hope is to roll it out across all the boroughs St Christopher’s covers. And, perhaps even more ambitiously, Isobel wonders if this integrated approach could be applied to other conditions, like say neurological.

“The benefit of having someone with experience of palliative care and heart failure means we can understand the journey of those people and work with colleagues to build a bridge between the different disciplines,” she adds.

Isobel’s keen to share real-life examples of the difference this integrated service is making to the lives of south London people living with heart failure.

She shares the experience of a woman in her late 80s who has dementia as well as heart failure. It came as a shock to her and her husband when the hospital referred her to St Christopher’s, and they didn’t understand that the condition was life-limiting nor see the need for palliative care.

“I went to see them with a colleague and the referral really hadn’t gone down well,” Isobel recalls.

“But we were able to win them over quite quickly because we were able to administer some treatment there and then that wouldn’t normally be done outside hospital.

“She went back to living a pretty good life, she received some rehabilitative care to build up her mobility and we supported them to get the benefits she was entitled to. We also spent time with them talking about end of life care, what mattered to her and her wishes.

“Her husband was particularly full of praise because he could see how the focus had shifted from treatment that wasn’t really working, to an emphasis on quality of life for them to spend together.”

It’s not just the patients and their carers who are feeling the benefit, Isobel says.

“The reception from our health colleagues across the borough has been so positive. Being a point of contact and another source of support has made a real difference. Doctors are saying thank goodness they’ve got somewhere they can go that gives them and their patients hope. And the engagement with and support from consultant cardiologists has been excellent. We’re both happy to ask each other for advice.”

In advance of our conference, Improving Palliative Care for People with Advancing Heart Failure, on 19 June, Isobel has a message for her colleagues across the sector.

“More and more hospices are starting to support people with heart failure, but we really need to progress this movement towards integrating the specialist support of the services and look at how we can support the specific demography of an area.”

“I would love to see heart failure nurses, specialist palliative care nurses, commissioners, consultant cardiologists and anyone who can help shape services for this large patient group come to the conference. We need to identify the role nurses can play and empower them to be at the heart of this change.”

Isobel will be speaking at the Improving Palliative Care for People with Advancing Heart Failure conference. To attend, simply click here.

Mother’s Day Reflection

Pippa Moss, Senior Education Support Officer at St Christopher’s CARE, reflects on Mother’s Day when her mother has advanced dementia.

I wrote about my mother in August 2022. On this Mother’s Day I wanted to reflect again on where we are and my feelings. There are a lot of feelings!

My mother’s Alzheimer’s has advanced so much since August 2022. She now needs hoisting, sits in a wheelchair all day and hardly talks. It’s getting harder to get a smile. She may vaguely have known us in 2022, now I would say she has no idea who we are. But she looks well, still enjoys food – especially a biscuit and a cup of tea. She can even still hold and drink it as I watch the wobbly cup nervously.

Music is less effective these days and it feels a while since I got her wonderful shoulder shimmy to Abba.

So this Mother’s Day I had the guilty choice of a two-hour commute to her care home and back – for her not to know it is Mother’s Day and that her daughter is visiting – or to enjoy my day with my own children.

Luckily my sister lives near the care home and will take her twin boys (very popular with the staff and residents!) to visit. I am so grateful that my sister and I can share the visits between us, we both find it harder but we are also building bonds with some of the other residents. Getting smiles and a chat from them is lovely too.

When I think about my Mum on Mother’s Day oh sorry Mum, I mean ‘Mothering Sunday’ as she always liked it referred to – I think about how I’d love to be able to go to church with her, sing hymns together and give her a big thank you hug and one of those little daffodil posies. Like we used to.

When I chat with her on my visits, I often just thank her out loud for everything she’s done for me, thank her for being a marvellous Mum for all those years, how proud I was of all her achievements, how well she did to turn out me, my sister and brother into happy adults – all, in my opinion, living her values.

With Mum having been such a social person with many close female friends, I set up a WhatsApp group called ‘Sally’s Girls’. Many of these ladies visit Mum too and we share happy photos, how she is doing and any little breakthroughs from the visit. One of my best visits was some months back when I danced in the garden in front of her and she said with a smile, “You are a funny girl.” I loved that so much.

I work at St Christopher’s CARE as a Senior Education Support Officer, and I have attended all our dementia training (in a support role but of course I listen too!). This has helped over the years to increase my understanding of this disease and to learn a few ‘tricks of the trade’ – I am not clinical but of course carers and family all work together with dementia.

If you are reading this and relating to this then I don’t need to tell you about this disease of the long goodbye, and how painful it can be for the family.

On Mother’s Day I will do all the remembering for you Mum – so many lovely memories of who you once were. We will be beside you as much as we can right until the end – I’m sorry I won’t be beside you on Mothering Sunday but I’ll be there another day soon which will be special anyway because I’ll look in your eyes, stroke your hands, and send love right into your soul and somewhere in your fuddled mind you will feel it.

My Grief is: A collective community poem

As part of National Grief Awareness Week in December 2023, we invited staff, patients, volunteers, and the wider community to create a collective grief poem.

Titled ‘My Grief Is’, we collected submissions both in-person and virtually for our poem which stretches at more than 10 metres long.

The images below capture some parts of the poem which we’re now working on turning into a more permanent form.

Future Planning: Advance Care Planning Reconsidered

Our January conference saw participants keen to continue to engage in conversations about more effective ways of future planning. This is exciting and we will ensure there are follow-up events.

Colleagues in Canada have written a wonderful book on this topic – in May we plan to hear more about their work, and build on their thinking to establish next steps.
Heather Richardson, Director of Academic Learning and Action, St Christopher’s CARE

Continue reading “Future Planning: Advance Care Planning Reconsidered”
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