Warning: Attempt to read property "ID" on null in /home/customer/www/stchristophers.org.uk/public_html/wp-content/plugins/search-filter-pro/includes/class-search-filter-post-cache.php on line 1106
St Christopher's, Author at St Christopher's Hospice

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

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

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

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

Image of Dr Sreedharan

Update on gene therapy and clinical trials

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

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

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

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

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

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

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

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

MND and Fronto-temporal dementia

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

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

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

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

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

Building a network of MND clinics across south Wales

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

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

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

Taking the fear out of choking

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

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

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

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

Listen to the patient AND the carer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

GPNN nurses championing advancing palliative nursing

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

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

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

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

Stronger leaders

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

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

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

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

Transformational leadership

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

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

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

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

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

Thank you all for your contribution.

Farah Demachkieh

Creative connections made at a conference

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mike and Marita’s story

Driven by gratitude for all the care and support Mike Twomey and his late, beloved wife, Marita, received from the hospice, the couple have raised more than £50,000 for St Christopher’s running an annual classic car show for the last nine years – and Mike’s showing no signs of stopping any time soon.

This year’s event on 6 August, at Coolings, Knockholt, was particularly poignant as it came just three months after Marita died, aged 79. A 1935 Rolls Royce and a brand new Lamborghini were among the star attractions of the 144 cars on show.

Mike was moved to start supporting St Christopher’s soon after Marita was diagnosed in 2015, initially with Motor Neurone Disease, and then with Progressive Supranuclear Palsy as well, and the two of them started to meet fellow sufferers and carers at St Christopher’s Caritas House, Orpington.

“I’ve always been very passionate about the hospice,” adds Mike. “It’s the lovely empathy that we always got from all the staff and volunteers. That is so special, and you can just tell that it is a vocation.”

Over the eight years that Marita was under the care of St Christopher’s she and Mike accessed a wide range of different services.

As well as nurses, doctors and occupational therapists regularly visiting the couple at their home in Hayes, Marita and Mike enjoyed some of the therapies on offer at the hospice.

“We both really benefitted from the Cognitive Behavioural Therapy. As a result, I hold mindfulness quite dear now. It really helped Marita deal with the stress of her condition too. If nothing else, it helped us appreciate the situation and prepare for it.

“Then, when Marita could no longer really look after herself, she loved coming into the hospice for some pampering. They would bathe her and wash her hair as well as do her nails. She really valued that.”

MIKE AND MARITA’S STORY photo3-scaled-e1694102086235-500x691

Marita and Mike met back in the 1980s and married at Gretna Green in 1991. They had a son and a daughter and four grandchildren, and while Mike was employed in a number of fields, Marita worked as an accountant and company secretary for the same company until she was 70 and her health began to deteriorate.

Alongside his day job, Mike was pursuing his passion – restoring cars, including classic Bentleys and Jaguars. “Marita was very long suffering and put up with me being a bit of petrolhead. We’d go on rallies in Europe, and she’d be head down reading out the directions, so never really got a chance to enjoy the countryside when we were on the road!”

Apart from the support from St Christopher’s, Mike cared for Marita at home, right up until the point, when, with just days left, she was admitted to the inpatient unit in Sydenham.

“She spent the last five days of her life at St Christopher’s in her own room which was lovely and I was there nearly all the time – day and night. I was so grateful for the care they gave her and when she finally died they let me have two hours with her alone which was absolutely priceless.

“We’d had some experience of St Christopher’s, visiting friends and Marita’s father died at the hospice. It’s just so different from any hospital I’ve ever been to. It’s very laid back and not at all stressful and the staff were so thoroughly professional and caring. It just seems to be ingrained in them. The hospice is a happy place, even in sad times – it just uplifts you.”

Now 77, Mike is fully committed to continue supporting St Christopher in the best way he knows. The Classic Car Show is booked in for 4 August 2024, when we’re confident Mike and his fellow car enthusiasts will raise thousands of pounds again to help us to care for people like Marita.

If you would like to support Mike’s fundraising please visit his Just Giving page.

Creative arts therapies conference brings medics and therapists together

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

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

Learning to be a leader

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

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

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

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

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

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

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

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

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

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

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

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

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

Surprise lottery win makes Kay sew happy

A totally unexpected win on the St Christopher’s Lottery has enabled a retired teacher to invest in a new pastime that’s helping sick children, visit a lifelong desired destination, and give a boost to her son’s new business.

Kay St Christopher's 2023 lottery winner

Kay Croft was driving to a Christmas fair last December when the life-changing moment happened.

“When Liz from fundraising phoned me and said I’d won £5000 I was so surprised and shocked. It was just before Christmas, and I didn’t even know I did the lottery.”

Kay had signed up to the lottery by direct debit a couple of years when a fundraiser called at her home in Dulwich. So overwhelmed was she by the win, she decided not to touch the money for a few months while she properly considered what to do with it.

A lifelong love of crafts, learned from her father, led Kay to think about how she could put her skills to good use. “He taught me to knit when I was about 10 and I’ve kept doing it all my life. I now make blankets for my friend’s grandchildren too.”

She started thinking about quilting but wasn’t sure where or how to start.

“It’s something I’ve always wanted to do but didn’t really know how. I was talking to my physio about it and she suggested Bell House in Dulwich Village. I’ve been going since March and they really set me off.”

Through the Bell House Quilting Academy Kay now makes quilts for babies in the incubators in Kings College Hospital, as well as for children of all ages at the hospital and for young adults leaving care.

By June, Kay decided she needed a better sewing machine. After extensive research she picked out a quality new one.

It’s absolutely amazing, the same as the ones they use on the Sewing Bee programme on the telly. It makes it so much easier and faster.

Spending about 20 hours a week on her new passion, Kay is now completing a quilt every week to 10 days or so.

As well as buying the machine, winning the St Christopher’s lottery enabled Kay to treat herself to a long-desired trip and invest in her son’s fledgling business.

“Visting Edinburgh Castle was on my bucket list, so it was wonderful to be able to take my daughter and 12-year-old granddaughter there – even if climbing the steps did nearly kill me!

“Then I gave my son money for an i-Pad to help him with the business he’s started – upcycling furniture.”

Kay loves the no waste policy at the Bell House Quilting Academy too. “Anything left over is used to make hot water bottle covers for Brixton Food Bank and then the scraps are turned into four-inch squares and sent to Fine Cell Works in Brixton Prison where the prisoners make quilts.”

While Kay’s win may have come out of the blue and she says felt undeserved, she has absolutely no regrets about playing the St Christopher’s lottery.

Winning the lottery has enhanced my life so much because it has given me a focus. Before I would sit in front of the TV and do my knitting. Now, I have to plan things out, get the fabric and work out what to do and then get on with it and create a wonderful quilt.

“It never ceases to amaze me how unique they are and, what’s lovely is, the incubator quilts go home with the children. It gives me a connection to people that I never get to meet, and it makes me realise I am doing something worthwhile – it’s so rewarding. I feel like I’m giving back to the community what it gave to me.”

Kay is thinking long and hard what to do with the remainder of the winnings and is still playing the St Christopher’s lottery, not because she’s expecting to win but because she wants to continue to support a good cause.

If, like Kay, you would like to support a fantastic cause and be in with a chance to travel or perhaps take up a new hobby, play the St Christopher’s lottery.

Dying Matters at Work: Our sensitive dates calendar

21 April 1988 might be more than 35 years ago but for Gill, it feels like yesterday. That was the day her sister died of breast cancer on St Christopher’s on Alex Ward aged just 42.

Gill, who is now a Healthcare Assistant at the hospice, gets a lump in her throat around the anniversary when she enters the room her sister died in.

She shared her story as part of our Sensitive Dates Calendar for staff – an initiative we set up for Dying Matters Week in May. At St Christopher’s, we often talk about the stigma attached to talking about death and bereavement. But sometimes we forget to do it internally.

Sensitive Days Calendar

So for Dying Matters Week this year we focused on supporting conversations around death and dying at work, particularly for our staff and volunteers. We developed workshops, activities and events to support conversations across the hospice.

This included collaborating on the calendar which allowed staff, like Gill, and volunteers to add stickers to days that held personal significance for them.

It may be an anniversary of a loved one’s death, or a particular day when they miss someone special. Watching the stickers accumulate throughout the week was a profound reminder of the challenges our colleagues might be facing each day.

Given so many individuals have personal dates of significance, it is important to remember
that everyone adjusts to work differently after experiencing the death of someone close and that not everyone may find it easy to open up about the impact of these deaths with those they work with.

Idris Arshad, our HR/People & Inclusion Partner, helped support the initiative.

He said: “This idea is a whole new way of allowing people to express the times that are important to them, the times when they may be feeling different from other times of the year.

“Sharing this allows others to be more supportive, more considerate, and more aware of how someone is doing with their well-being. It also helps people feel like they can talk about things that are sensitive to them and that they can bring their whole selves to work.”

:: This story was from our Autumn/Winter 2023 issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

My fantasy funeral would be like a Viking Funeral

After more than 40 years working at a hospice, it’s perhaps not surprising that St Christopher’s Senior Maintenance Technician, Bill Punyer, is pragmatic about the end of life and is quite happy to hand over responsibility for the dramatic final journey that his wife and daughters have planned for him.

Bill Punyer

It was clear from his very first day at work, back in 1979, that Bill was at ease with death and dying.
“The very first job they gave me was to change the lightbulbs in the fridges in the morgue. It didn’t bother me at all,” he says matter of factly.

Now 67, Bill is the longest standing member of staff at St Christopher’s and is proud of his family’s deep – literally built-in – connections with the place.

I’ve always said I don’t want it to be a bleak day, but a celebration of life and once I’m gone they can do what they like.

“All my family is tied up with the place,” he says proudly. Bill’s father worked on the construction of the hospice, installing all the plumbing and a nine-year-old Bill appears in the background of a photograph from when the first shovel went in the ground. Years later, his father was cared for as an inpatient, and Dame Cicely Saunders invited his colleagues from the original build for a tea party shortly before he died.

Dame Cicely went on to become godmother to Bill’s two daughters who both attended the nursery and did work experience at the hospice.

The connections don’t stop there. Bill’s mother-in-law was a seamstress, sewing the nurses’ uniforms and his wife worked on reception for 22 years.

Incredibly, Bill finds time to run his own business renting out equipment for discos, weddings and other events. It’s this second life that gives a small clue as to the frankly inflammatory plans for his funeral.

Viking Ship Fantasy Funeral

“It’s always been a standing joke in the family, because of my connection with the discos and the hospice, that my wife and daughter will dress me in my St Christopher’s maintenance uniform. They’ll put me in the back of my van – no coffin – at the top of the hill by our house near Mottingham”.

Bill jokes that his family will then set light to it, like a Viking funeral, and take the handbrake off, with Disco Inferno playing on the stereo.

One thing is for certain though, Bill’s ashes will then be buried in the family plot in Ramsgate cemetery.

“I’ve always said I don’t want it to be a bleak day, but a celebration of life and once I’m gone they can do what they like.”

:: This story was from our Autumn/Winter 2023 issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

Skip to content