Improving Palliative Care for People with Advancing Heart Failure

If the purpose of St Christopher’s Improving Palliative Care for People with Advanced Heart Failure conference was to inspire and enable colleagues in palliative care to work more closely with their cardiac colleagues, to provide patients with the best possible care, then if two delegates who spoke up in the final session were anything to go by, that purpose had been well and truly fulfilled.

Dr Heather Richardson, Director of Academic Learning and Action at St Christopher’s asked delegates to share what it was they needed to fire up inspiration in their organisation to make the idea of closer collaboration a reality.

Middle aged white woman, smiling to camera with short blond hair
Heather Richardson

A very honest delegate from a hospice said that her heart sank every time a heart failure patient is referred to her. “The heart failure nurse and everyone else disappears while we are left holding the patient,” she said. “Now we are going to go to the heart failure team and say can we do joint visits.”

This was swiftly followed by another attendee, who also works in palliative care, in a hospital, who said that as a result of what she’d learned at the conference, she was now going to send a colleague to the heart failure multi-disciplinary team meetings (MDTs).

What was it that motivated these delegates to act? What had they heard during the conference that moved them to want to return to their workplace and take immediate action to break down barriers and provide improved, integrated care for people with heart failure?

Here’s a summary of the key points

Heart failure is a growing, global issue

It affects 26 million people across the world, while in high income countries it reaches rates of 1-2% across the population, reported Carys Barton, Heart Failure Nurse Consultant at Imperial College and Chair Elect of British Society for Heart Failure.

Carys added that in the UK, 29% of hospital admissions for people with heart failure proved to be their last and that many of them had a significant burden of unmet needs, poor prognostication and no discussion of their wishes.

“Heart failure has a very high incidence of death in an acute setting. This is incredibly sad as it’s a long-term condition with indicators and we know it is life-limiting. Surely, we should be doing better. We have to educate each other so we can do better for patients making best use of limited resources,” Carys said.

Heart failure and palliative care professionals can make perfect partners

Challenging delegates, Carys said: “Why are we not putting palliative care in place for heart failure patients? We have to be treating these people holistically and in a more personalised way. We need to be working across a whole spectrum of services rather than in silos because that doesn’t give patients what they need.”

Since 2018, NICE guidance for heart failure has included palliative care.

Dr Laura Green, Senior Lecturer in Nursing, University of Manchester, recounted the success of a joint palliative care/heart failure project she worked on in Bradford, particularly highlighting how the expertise of the latter enabled the positive intervention of the former.

The palliative care nurses on the project asked their heart failure colleagues, with whom they were conducting joint holistic assessments, to consider which of their patients were likely to die in the next year. They predicted 70% would die and 89% of those identified did.

“It’s super important to know your patients because in this case that led to an increase in deaths at home,” Laura added.

Joy Ross, middle-aged white woman with curly brown hair smiling to camera.
Joy Ross, Lead Palliative Care Consultant
Primary Department

In another example of the collaboration between the two disciplines, St Christopher’s worked with heart failure colleagues across the community in Bromley, in a project funded by the Bromley CCG. Dr Joy Ross, Lead Palliative Care Consultant at St Christopher’s, shared the results.

“We did improve symptoms and started to address unmet needs. We reduced hospital admissions by a third, and halved bed days.  Professionals felt supported and the carer burden was reduced. GPs were picking up the phone to the heart failure nurse and having open communication and having direct impact on patient care.”

Several of the speakers highlighted the benefits of joint visits, with both heart failure and palliative care nurses. As Fiona Hodson, Nurse Consultant at St Christopher’s, put it: “By working together in this way we bring the best of both specialities. Patients can see it and we learn together.”

Iftekar Gogah, Lead Heart Failure Nurse Specialist at Princess University Hospital in Bromley, echoed that sentiment. “I would definitely advise joint visits as the preferred system as we get more confident working with the palliative care teams and it was reassuring for the patients for the heart failure nurse to introduce their palliative care colleague.

Timing is everything

That earlier intervention of the palliative care team was a theme running through a number of the presentations, perhaps best summed up by St Christopher’s Advanced Practitioner Heart Failure/Palliative Care, Isobel Jackson when she challenged delegates: “Here’s my provocation for the day: are you investing time or resources for those at the very end of life but leaving out the ones who could really benefit?”

She illustrated the point by sharing a filmed interview with Bill who cared for this wife with heart failure. “You need more advice so you can make the most of what time you have and to make it the best time.”

Watch Bill’s interview on being a carer for his wife, Clare who had heart failure.

Advance Care Planning and rehabilitation are just two of the possibilities that become available when introducing palliative care professionals at that earlier stage, as May Pheasant, Heart Failure Palliation Clinical Nurse Specialist, at Isabel Hospice, reported from the project she ran in Welwyn Garden City.

May said heart failure patients particularly benefited from a fatigue and breathlessness course they introduced at which they’d receive information and then complete the exercises. She cited the case of a 70-year-old man called Jerry, who also accessed hospice at home, complementary therapies and symptom control.

Patients and carers should always be at the centre but, remember, they’re all different

Joy and Isobel assessed the extent to which they had succeeded in putting patients’ and carers’ voices at the heart of their work and identified a real barrier.

“People with heart failure had low expectations and needed a sense of feeling known. For many, not feeling known was a real challenge.

“It’sreally important that we understand their wishes, and that the service is not just based on what we want. We need to establish what makes the biggest difference to them. While we can’t do everything, we can look at what’s having the biggest impact for them.”

Young white woman with brown hair smiling with glasses in front of stairs.
Isobel Jackson, Senior Heart Failure Specialist

Isobel shared her frustration and disappointment in finding that of the 373 papers on palliative care and heart failure published over the last 15 years, only two focused on the experience of the patient.

That was the starting point for designing the Croydon service as part of the Burdett funded project – to make a genuine co-design, while being conscious that all patients are different.

“You can’t group everyone together. There are so many differences, whether it’s age, wealth, sex or ethnicity.”

Communication is key

A desire for more information to help them ‘navigate a minefield’, was a commonly shared gripe of patients and carers, said Isobel. “They want honest dialogue and more information,” she added.

Eileen Arbenser, Heart Failure Specialist Nurse, Croydon NHS Trust, concurred: “We now understand the benefit that they need to understand they have a chronic condition – letting them know what their journey will be like in the early stages, so they appreciate it and embrace it. It also helps us to plan better.”

That need for greater and better communication extends to fellow professionals too. Palliative care nurses can give their heart failure colleagues the confidence to make patients more aware of the services on offer and to have meaningful conversations.

May Pheasant recommended making a plan for everyone involved in heart failure to know about palliation and vice versa.

The final means of communication that all concerned need to focus on is to champion the need for, and benefits of, integrated services.

As Heather Richardson said: “We’re very poor at marketing ourselves. We have unconscious competences like having meaningful conversations and giving people a dignified death, so we shouldn’t be backwards in coming forward. Instead, we should be approaching other disciplines and saying, ‘how can we help you?’.

True integration is all about relationships

“Have we achieved integrated care?” asked Dr Chris Bell, a consultant at Croydon Health Services NHS Trust, about the project he’s worked on with St Christopher’s.

“In a soft way,”  he added, answering his own question. “This has been a relationship building experiment. Whether it’s conversations in MDTs or dialogue about patients outside of that. We’ve never had to fill in forms which has been a breath of fresh air. Effective integration is all about relationships.”

Having developed that relationship with colleagues from St Christopher’s, and knowing that holistic care was available, Chris said his team felt better able to think about long term planning and better equipped to help keep people out of hospital.

Think differently and be prepared to bend the rules

May Pheasant and Claire Morgan, from Isabel Hospice and Dorothy House Hospice respectively, demonstrated that there are a number of different ways to set up a joint service, both acknowledging that there were challenges and barriers along the way.

May said: “It was sometimes harder to convince palliative care colleagues than heart failure ones that they needed palliative care. It was very much about learning to understand each other’s roles. Not just putting people into silos.”

She encouraged delegates to adopt a creative collaborative approach when trying to engage colleagues from another discipline. “It’s about bending rules to find a way around. So rather than just asking a busy colleague to do something, say, ‘can I help you to find capacity.’”

If it’s in the patient or carer’s interest, having the confidence to bend the rules, can definitely be the right option, Isobel Jackson said and Bill, the carer, concurred: “She would always explain how to make things easier, not just for me, but for the whole family. The rules are there to guide, but sometimes need to be broken so you can get to where you need to go.”

Nice story, now show me the data

While Isobel Jackson invited the conference to focus on quality of life and not targets, inevitably, a number of speakers reminded delegates that those holding the purse strings need to see the value of any collaborative project.

“Data, data, data,” was how May Pheasant put it. Laura Green said the more data the better, urging colleagues to, “Collect, collect, collect.”

Moving forward – a time for new leadership in hospice and palliative care

Middle aged white woman, smiling to camera with short blond hair
Dr Heather Richardson, Director of Academic Learning & Action

There is a sad and recurrent theme when I talk to anyone involved in developing or leading hospice and palliative care services at present – that the challenges are significant and mounting; at times apparently insurmountable and often overwhelming. It is hard to imagine that individuals, however talented and committed to improving the experience of people dying or grieving will put their hand up to the additional demands of leading end of life services, organisations and systems that are fit for the future. And yet, that is what our sector demands and what our society needs. If we want to perpetuate and further develop the offer of hospice and palliative care so that dying becomes more equitable, reflects contemporary needs and preferences and can adapt to contextual challenges such as a changing workforce, then strong, visionary and positive leadership will be key.

With that in mind, St Christopher’s CARE has been working up a new programme of learning for aspiring leaders who want to step into, or enjoy, director level responsibilities and more. We have designed it to complement other courses available to leaders already on that journey. Our new programme is forward looking, positive in approach and is designed to foster creativity, confidence, relationships, resilience and skills that make the future something to be relished rather than feared. We will focus on people’s agency, their opportunities for leverage and how this increases their efficacy as leaders.

Jessica Pryce-Jones
Jessica Pryce-Jones, Global Executive Coach & Author

We are drawing on insights and expertise from within and beyond hospice, in the knowledge that our space needs innovation, new solutions and a different energy moving forward. The programme is being designed by Jessica Pryce-Jones, a psychologist, executive coach, facilitator and author, well known to the hospice sector for her work on resilience and wellbeing with input from myself and Marie Cooper, coach and senior nurse advisor.

This new programme entitled “Pathfinder Leaders in Palliative Care” will start in September and lasts until May 2025. It invites attendance in person for four days (two at the beginning and two at the end). The remaining 10 or so modules are run on-line, each lasting three hours. In the course of the training, we will encourage learners to lead a project in their place of work – providing access to mentors skilled in the areas of leadership and service development. In addition we offer coaching and a variety of opportunities for peer support. Throughout our time together we will be offering regular opportunities to learners to build personal wellbeing. 

Topics covered in the programme: 

  • Knowing self, values and strengths 
  • Building personal assets and resilience 
  • Building strategic vision and clarity
  • Financial confidence
  • Authentic, centred leadership and gravitas
  • Forward looking transformation and change 
  • Negotiation skills and influencing others 
  • Maximising agency and leverage 
  • Big picture thinking
  • Driving innovation 
  • Building others 
  • Networks, collaboration and partnership working 
  • Being intelligent around risk
  • Intimacy at scale
  • Building personal resilience and wellbeing

The first cohort is being asked to act as co-designers in its detail – with an invitation to reflect on the fit between our proposed content and contemporary opportunities for leaders so that we can adapt and develop the programme as we travel through the programme together. In return the first cohort of learners can expect a significant discount on the price to attend.

If you are UK based, see yourself as an aspiring leader and are recognised in your organisation as having potential in this area we would love to hear from you. Find out more about the programme here and if you are interested to join please complete the brief expression of interest form which can be found on the webpage.

Global Palliative Nursing Network – one year on!

Global Palliative Nursing Network Spotlight Events

A year after the launch of the Global Palliative Nursing Network, it’s safe to say it’s very definitely meeting a need.

More than anything else GPNN has given a home to nurses working in what can be a traumatic and isolated field – as Pauline Uwamahoro, from Rwanda, explains.

“The GPNN has become my professional family. It offers a supportive network, invaluable mentorship, and continuous learning opportunities. I believe every nurse would be fortunate to discover GPNN. Together, as soulmates in palliative care, we can make a profound difference.”

Since May 2023 Pauline and her fellow GPNN members have enjoyed and benefited from both formal and informal learning events designed to provide them with a mix of peer support and professional development – all for free.

Bi-monthly Spotlight events covering issues as diverse as Informed Trauma Care in End of Life Care, the Ethical Framework of Nursing and Therapeutic Presence of Nurses in Suffering, have been complemented by less formal Meet-up and Share Saturday morning sessions.

Key to the success of GPNN is its champions of whom there are now 20. Over the coming year, the network will be looking to double this cohort and invest in them so they can increase their influence. The role is ideally suited to a nurse with an interest in both advancing nurses in their locality and connecting with and learning from their counterparts globally.

An early highlight of the next year is the virtual half-day conference, Nurses as Trailblazers and Pathfinders: Let’s Make Things Happen on 9 July at which nurses from Sudan, Cameroon, India and Lebanon will share their experiences and report on progress on the World Health Assembly’s resolution to increase access to medication, services and education.

With the calendar of quarterly Spotlight events and the Meet-up and Share sessions, all free for another year, the GPNN is THE network for palliative care nurses all over the world. For full details of all the events and how you can join, click here.

Designing and delivering training in palliative care, Karachi, Pakistan

Middle aged white woman with short white hair smiling with green trees behind her.
Dr Gill Horne 
GPNN Champion & Programme Director Care Services, Rowcroft Hospice.

I discovered that their staff had little or no prior palliative care training. Through video calls with one of their medical team to help prepare the training, I asked them to give me examples of the types of patients, diseases, and scenarios their staff were facing, being keen to design the training around their learning needs. Cases included for example a man in his 50s, who had severe epilepsy following an RTA, with left-sided paralysis, aphasia, complications of bedrest and his family not able to take him home; an elderly woman with oropharyngeal cancer, who had an emergency tracheostomy and no prior discussion about future plans and a patient with dementia, frailty and multiple chest infections. There was also a general concern about struggling to recruit and retain nurses in a mission hospital where conditions of work and pay were different to surrounding private and state-run hospitals.

I designed a 12-hour programme over three days. Together we agreed this would include the core tenets of palliative care: principles of palliative care; communication skills; recognising dying, pain, and symptom management – recognising they had little or no opioids available; spiritual care; grief, loss, and bereavement; self-care and compassion. We were told most of them had a good understanding of English, but once in country I was grateful that a retired Urdu speaking GP colleague, part of the team, was able to offer translation.

The workshops were designed for doctors, nurses, and technicians. We used interactive methods – something that is uncommon in Pakistan, where didactic delivery is the norm. We were thankful for Wi-Fi and access to a computer and screen, but warned of power failures – so we were prepared. All other resources were packed into my suitcase: paper, crayons, blue tack, poems, flip chart pens and other tools.

Some of the many challenges for staff in Karachi and in Pakistan is a lack of government provided reliable supplies of opioids. They had some oral mild-moderate opioids such as Tramadol available, and benzodiazepines such as Midazolam, and yet none of these were used subcutaneously at the end of life. In terms of communication skills training, as per my prior experience in other LMIC’s and Pakistan, its more common that the man of the family is informed of bad news and is the key decision-maker, rather than the patient. Relational autonomy is more important in their culture, nevertheless trainees welcomed learning about how to communicate news to the patient and family together and we discussed the merits of both types of autonomy.

Whilst in country, we were also able to offer some leadership and management advice in relation to supporting the head of nursing and we were invited to advise on their wish to develop a palliative care service.

Following positive feedback about the learning, including staff wanting to make their own plans about future care, and reports from one of their nurse trainers about gaining knowledge in interactive training methods, there were further impacts. These included for example, following the training in palliative care emergencies in the morning, that very afternoon a patient was diagnosed in the emergency department with Superior Vena Cava obstruction, the doctor suggested that having just been taught about this they were more easily able to recognise it. Reports since my return are that they have admitted several patients whom they recognised were dying and admitted them for palliative care. Excitingly, they are putting together a business proposal to creating a small palliative care unit within the hospital.

Gill is a Global Palliative Nursing Network (GPNN) Champion – if you are a nurse do think about joining the network.

Collaborating with Communities

For everyone who attended the sold-out Collaborating with Communities conference, finishing up with the Be Happy Be Sad Party hosted by St Christopher’s Community Action Team and members of Croydon Mencap, it felt like precisely the right thing to do and provided the perfect visualisation of everything they’d heard about during in the day.

In fact, many had been struck by the words of Sarah Burns Director of Communities, Croydon Voluntary Action, when, reflecting on the question of what makes for a good relationship with community organisations, she said it was always better to have a party rather than a meeting.

This was one of the nine key and sometimes surprising messages from the conference designed to inspire and enable people to transform end of life experiences for everyone’s benefit. By the volume of the clapping and cheering at various points during the day, it’s safe to say there was a strong desire amongst delegates to embrace these action points and continue this collaborative approach to finding the best ways to engage with communities.

So, hosting a party is better than a meeting is key point number one as it provides an opportunity for people to engage in conversations in a relaxed, informal setting, to demonstrate their gifts and strengths and communicate their needs.

2. Invite people to come together

Just as you’d invite people to a party, it’s crucial when building relationships to invite people to come together. Dr Guy Peryer, of the National Institute for Health and Care Research, said that with death affecting three million people every year in the UK, we have to invite people to come together to talk about, because if it’s not affecting you now, it soon will be. Further, rather than simply making a non-specific ‘let me know if there’s anything I can do’, offer, spell out something you can do and actually do it.

3. When inviting someone to do something, think about what’s in it for them

We need to take care in crafting any invitation, Guy said, adding that we have to be clear in our ask and in describing what’s in it for the recipient, in a genuine spirit of reciprocity. A curated conversation with three community members, all of them engaging in some kind of volunteering, illustrated the importance of a two-way relationship. Janice, who is a Compassionate Neighbour, has developed an outstanding relationship not only with the older woman she visits regularly, but also with her family. She adds that it’s helped her find purpose in retirement and she hopes, “someone will come and see me when I get old and can’t go out any more.”

4. Embrace the adventure, don’t fear the risk

It was another of the volunteers, Mark, who’s been signed up with Good Gym for a number of years, that verbalised a theme rumbling under the surface throughout the day. The Good Gym model means that Mark rarely knows what to expect on any given day at the end of his run. “I love the adventure – never knowing what I’m going to get and who I am going to meet. But by always going to new places and meeting new people I am making a connection with the community.”

Mary Hodgson, Head of Community Action and Learning at St Christopher’s, urged everyone to embrace this sense of adventure – to see the uncertainty as an opportunity, to break loose from the shackles of quantitative data, to try new approaches, to make contact with new communities and risk making mistakes. As Guy Peryer emphasised, “It’s all about social learning. There is no such thing as failure, it’s all about learning.”

5. Embrace anxiety and discomfort

In the same spirit of bravery, more than one of the speakers advocated for people embracing their anxiety and sense of discomfort, seeing them as opportunities to by turn, change and grow, and acknowledge vulnerability when dealing with communities with whom they’re not well acquainted.

“Knowing there are no simple answers is a great place to start,” said Rekha Vijayshankar, Deputy Head of Quality & Clinical Governance, Marie Curie UK. Rather than pretending to be culturally competent, Rekha urged delegates to sit with discomfort to see the importance of sharing space with fellow humans and to embrace cultural curiosity alongside a willingness to listen and learn.

6. Everyone has gifts to give

Sarah, from Croydon CVA, made a compelling case for maximising the benefits of collaboration, firstly by acknowledging that everyone has ‘gifts to give’ and then dovetailing them with others’ gifts. “In our most successful community partnerships we start from hearing about and celebrating people’s gifts and then try and link them together. I do what I do best, and you do what you do best and then we come together and work around those strengths.

Helen, a bereavement buddy, shared her experience of supporting a woman who, for a long period was very stuck in her grief, pushing Helen away and refusing to attend any formal sessions. Now this woman attends the Bereavement Help Point and organises lunches. “People have gold inside them,” Helen added. “As with this woman, they just don’t see their own potential. Just by creating a space and trust she discovered her gold.”

7. Go to where people are

Successful community collaborations need to start in community spaces, said Shelly Bardouille, Mental Health Coordinator at Croydon BME Forum, who has collaborated with St Christopher’s Croydon Death Literacy project.  “It’s better for the community as we can build a rapport and learn their strengths and weaknesses and the approaches that work while also become acquainted with their cultural norms,” added Shelly.

Guy Peryer extends the point, stressing the importance of paying attention to how we gather – ensuring people are in a comfortable environment and are given a platform for sharing knowledge.

In the workshops, the Community action team presented new ways of thinking about how we can help people, focusing on the simplest elements of our work which can have profound impacts. We spent time in garden space, listened as a radical act and considered how we rebalance power in learning.

8. Don’t be limited in your definition of a community

Mary Hodgson started the day by challenging delegates to reconsider their concept of a community. Mary said that while a community can be a place that binds us together it can also exclude us. To mythologise community could be as dangerous as ignoring it altogether. Unless we take time to consider precisely what a community is, and it’s definitely not simply defined by geography, then it can feel like a problematic concept.

Polly Maxwell in her talk about Death and Dying in the Queer Family invited delegates to consider the evolution of ‘family’ and next of kin and think about networks that go beyond the family norm.

9. People just want a voice

The conference’s first speaker, Dan Farag, Director of Innovation & Practice, The Young Foundation, painted what could have been a solely bleak portrait of the world in which climate change, war, inflation and fuel poverty is threatening the traditional systems of global hierarchy and power. More than anything though, public disharmony and distrust of the current world order is born of a sense of lack of voice. People just want to be heard, Dan said. This he said presents a real opportunity – particularly for those organisations, like hospices that can find news ways of listening – listening to understand.

A day in the life of a hospice housekeeper

Within the vibrant walls of our Centre for Awareness and Response to End of Life (CARE), one individual stands as the quiet force behind the scenes – Tracey Cooke, the unsung hero with a personal connection to the hospice that drew her to join our team.

Her connection with the hospice is deeply personal, rooted in family ties and a desire to turn a painful
memory into a purposeful career. Before joining St Christopher’s six years ago, Tracey worked as both a shop assistant and a teaching assistant. However, the turning point came when her sister spent her final days at the hospice, leaving an indelible mark.

Her initial hesitation, fuelled by preconceptions and painful memories, was palpable. Her mother, influenced by the shadow of grief, tried to dissuade her. She had preconceptions about it being a depressing place, however, the pull toward St Christopher’s persisted.

“When the time did come that I thought ‘I’m gonna give it a go,’ my mum, bless her, wasn’t around, so I thought ‘I’ll try,’” Tracey says.

Revisiting the hospice where her sister died was initially overwhelming. But Tracey found solace and purpose within these walls. She started by working in the public-facing areas before moving to the laundry team. Now she oversees our education space, which opened three years ago. Taking on the role of housekeeper for CARE in 2021, Tracey stepped into a domain where her love for the job, camaraderie with colleagues, and a profound sense of responsibility converged. “I love working over here, I get on with the staff, and I can get on with what I need to do,” she says.

Tracey begins work at 7am and as she’s the only one in the building at this time, she can prioritise the spaces hosting functions before moving onto her routine tasks. Although it’s predominantly a space for education and community engagement, the building’s high-ceiling atrium has also hosted quizzes, concerts, patient’s birthday parties, fashion shows and even a wedding fair. One consistent, however, is that it’ll be Tracey working to get CARE back into shape for the next event.

The scale of the centre often surprises visitors and colleagues alike. “When they have the course or functions on here, I get to see different people, and they pass comment and say things like ‘This is so lovely, do you clean this on your own?’” she says, smiling.

A photo of St Christopher's CARE from the outside
St Christopher’s Centre for Awareness and Response to End of Life opened in 2021

It’s the vibrancy of CARE during these events which bring Tracey immense joy. The bustling energy, a reflection of her efforts. She’s developed relationships and rapport with both visitors, staff and volunteers,
and her role is crucial to supporting this environment. “I see the building almost as mine and treat it as my own house,” Tracey explains, underscoring the pride she takes in her work.

Her role extends beyond the physical upkeep; it’s a labour of love. On some of the more quieter days in the Centre, she’ll bring in her dog, Casey, a chihuahua.

Tracey Cooke stands as a beacon of cheerful resilience, turning personal loss into a source of strength. Her journey at St Christopher’s is a testament to the transformative power of purpose and the profound impact one individual can have on the heartbeat of a hospice dedicated to education, community, and compassionate care.

Our dynamic centre is available to organisations and individuals for hire. To find out more email h.priest@stchristophers.org.uk

:: This story was from our Spring/Summer issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

Alan’s story of getting to France for the Rugby World Cup

How do you tell the story of Alan Newman?

“Who’s going to want to read about me,” he says. In his view. “It’s all a bit boring.”

That comment pales as he begins to reel off story after story.

Tales of kayaking in the French Alps in wild rapids with drops up to 7ft, or of driving 150mph in a Supercharged XKR Jaguar. And that is just what the 62-year-old has been up to since his cancer diagnosis in 2021.

Before that, Alan, whose nickname is Mr Incredible, spent his holidays mountain climbing in France, Spain, Italy and Switzerland, once sleeping next to a 600ft drop tied to a crucifix.

His wife Louise sits next to him in the St Christopher’s Anniversary Centre. Alan has just had an appointment with his pain team and his consultant, Dr Sara Robbins. When he was asked the question we strive to ask everyone who comes under our care – What Matters to You? – his response was instant: watching England’s Rugby World Cup game against Samoa in Lille.

Alan and Louise wear England Rugby World Cup shirts in the stadium with the pitch in the background
Alan and Louise at the match in Lille

“They were worried about me going, they were going to try and stop me,” Alan says. But Dr Sara soon got the measure of him, explains Louise. “Once they realised it was a goal that he wanted to achieve, Sara and the team were all over the pain relief,” she adds.

At this point, Alan – who has an advanced tumour in his head – had got used to challenging medical opinions. His oncologist advised him of the risks of going skiing in 2023, warning him that it would not be nice for his family to bring his body back in the hold of the plane.

“Well, my son Dan is driving so they can sling me in the boot,” was Alan’s reply.

To prepare for the trip to Lille, he had a brief admission to the hospice’s inpatient unit – fittingly he was on Rugby Ward – to get his medication levels right. After that first match, buoyed with optimism, Alan secured tickets for England’s quarter-final win against Fiji and then the subsequent semi-final defeat in Paris against eventual winners South Africa. That trip was booked with all the lads in the pub at 10.30pm, just six hours before they left for Paris.

It was not all plain sailing during the trips over to France, though. With Louise not there in Paris, his nephew and sons were in charge of the medication as well as helping with the wheelchair.

“They nearly piled me out of it a few times,” Alan says, adding: “To be honest, people looked at us like we were mad.”

When Alan was first referred to St Christopher’s in Autumn 2023, his oncologist at Guy’s Hospital had given him just a few weeks to live.

“Anytime someone says that I’ve only got roughly this amount time left, in my head I know I’m gonna beat it,” he says. “It’s never crossed my mind to not approach it like that.”

As a child, Alan had to try to keep up with his older brother and two older cousins. The four of them would spend all their free time out on their bikes, pulling crazy stunts such as cycling straight into a wall.
Alan’s dad was a Commander in the Police and would take all four of them out on his police motorbike. And he once built a zip-wire in the garden which ended with six-year-old Alan smashing into a wall. “Blood everywhere,” he says.

“We called it a ‘yabbadabba-doo’ machine. After I hit the wall my dad said, ‘oh I’ll just go and find a mattress that you can land into’.”

As he got older, he channelled this sense of adventure into rock climbing, off-road biking and skiing. His sons, Dan and Will also took to this way of life as did Louise when they first got together 20 years ago – also during a Rugby World Cup when they travelled over to watch England’s victorious campaign in Australia.

“We realised on that trip that we wanted to be more than friends,” says Louise. “Maybe we got overtaken by all the excitement of Jonny Wilkinson and England winning,” she jokes. “But it was an amazing trip and we started seeing each other when we got back.”

Alan is held up by his two sons after a night at the pub

For Alan, the main difficulty has been the physical impact of his illness, rather than the mental. Despite being able to defeat the odds of his diagnosis by going skiing last year or by that kayaking trip in July 2023, it is becoming harder.

“Since that kayak trip, it’s been downhill. This season I know I’m not going to be able to ski or kayak… so that’s going to be worse for me. Of course, mentally it is hard but nothing like I’d expected,” he says. “Getting up the stairs, getting in and out of bed, not being able to do what I want, that’s harder.”

“Al’s always been incredibly strong mentally and physically,” adds Louise. “He has a built-in resilience.
So, approaching his diagnosis in this way is just how he has to do it. The strength he shows in everything he does is incredible.”

It inspires other people too. A close friend of the couple’s also has cancer. “Al kept encouraging him to go out as much as possible as he knew it would help him,” Louise says.

One of the ways he has kept up with friends is his regular Friday night trips to the couple’s local pub in Chislehurst. Around 20 of Alan’s friends – including his sons and their mates – spend the evening together in what Alan’s dubbed ‘Moretti and Morphine’ Fridays (M&M).

“Then they’ll all pile around my house afterwards,” he laughs, showing me a photo of his two sons helping him home from the pub after a recent trip.

“My boys have been brilliant,” he says. “I’ve got an amazing wife and my big sons who can help me up the stairs or down the pub.”

The couple are also full of praise for the support they have received from the NHS and St Christopher’s.
“I’ve been blown away by the amount of support we’ve had,” says Louise. “When you first hear about palliative care in hospital, you think ‘have we been written off?’ A lot of people don’t realise that palliative care means helping with pain and helping to live. They just think you’ve got hours to live but it’s not like that,” she adds.

“That’s what I thought, to be honest,” says Alan. “But it’s not true. St Christopher’s have been amazing, the place is really great, Dr Sara, the nurses, receptionists, everyone is amazing.”

As the conversation comes to a close, Alan picks up his phone. “I’m gonna give my mate a call to see if he
and his wife want to go for a curry and a pint.”

Mr Incredible indeed!

:: This story was from our Spring/Summer issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

Meet your compassionate neighbours

Being diagnosed with a long term or terminal illness can leave people isolated and alone. In fact, illness aside, many of those living in our communities already face isolation, with few people in their lives to offer company and support.

Helping to combat and alleviate loneliness has become an ever more important part of St Christopher’s
work in the community.

For five years now, this has included our Compassionate Neighbours initiative, which pairs community-based volunteers with people who have long-term, life-limiting or terminal illness, or who are older and socially isolated. Volunteers are known as Compassionate Neighbours.

They connect with someone at home to help people feel supported and part of the community.

Hundreds of people have made valued connections with people they wouldn’t otherwise meet. On our fifth anniversary we wanted to thank those who have been involved, and we got to hear the stories of what being part of it has meant to people.

Billie, Compassionate Neighbour

Many friendships have blossomed since the scheme first started, and the volunteers who shared their stories at our event said the same thing: they have all got a huge amount out of being involved too.
Take Lorraine, who was matched with her community member, Raymond, over a year ago. “I thought: ‘Yes, he’s right for me,’ because I was also looking for someone to talk to, and Raymond made me laugh. That’s what I needed.”

How easy is it to be a Compassionate Neighbour? We think that all it takes is someone who would like to show support, kindness and friendship to someone else in their community. It works on the idea that whoever we are, we all have skills, interests and something special to offer. It doesn’t require specialist expertise or large amounts of training.

Ron, Community Member

Many current Compassionate Neighbours have jobs, families, and other commitments of their own.

We know that taking part needs to be flexible and local to fit in with people’s lives, and these are key features of the project. We think this is why lots of different people want to get involved: the youngest Compassionate Neighbour is 17 and the oldest is 92!

Most importantly, the relationship between matches is based on respect and mutual benefit and because of this, individual relationships flourish.

Ron and Ann Talking at the 2023 Compassionate Neighbours Event
Ron and Ann

We currently have over 120 Community Members across South East London who are matched with Compassionate Neighbours, but as people are really interested in being part of the project, we always
need more volunteers to join in! We would love to hear from you about becoming a Compassionate Neighbour and supporting someone in your community. Click here to discover more.

:: This story was from our Spring/Summer issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

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