CARE Conference Archives

Mental Capacity in Palliative Care Conference

Posted on 27 March 202630 March 2026 by Harmony Beverly-Jackson

Mental Capacity Care Conference__LI 1128 X 191

“In palliative care, questions about mental capacity are rarely straightforward as there are so many factors involved. Professionals attempting to do the right things are confronted by complex and ethically demanding decision.”

These were some of the introductory comments made by Michele King, Social Work and Safeguarding Lead at St Christopher’s as she opened the Mental Capacity in Palliative Care Conference.

The 20-year-old Act is one of the most important frameworks for guiding practice and the conference provided an opportunity to reflect on its principles and complex realties of putting it into practice in palliative care, Michell added.

“How is it being lived in real life decisions?” she asked rhetorically. Given that two thirds of people who die experience some kind of cognitive impairment in their final stages means the Act cannot be regarded as an abstract legal framework.

This was echoed by Dr Emma Hall, Palliative Care Consultant, St Christopher’s, who said the stakes are especially high when it comes to assessing capacity in someone with advanced illness, as time is short and the onus is on aligning with the individual’s goals while considering the impact on their family.

Barrister, writer and educator, Alex Ruck Keene provided the more than 200 delegates with some of the key takeaways of the day during his two speaking slots.

Alex reminded health and social care professionals that the Act, Section 5 specifically, provides a defence to assaulting a patient, if they’ve consented or the professional believes for good clinical reasons that they’ve acted in their best interests.

He also stressed the importance of asking why you’re assessing someone’s capacity and the context in which you’re doing it, because someone doesn’t lack capacity per se, only to make a specific decision.

“If someone has capacity, it is on them. If they don’t, it’s on us,” was his blunt advice. When writing a report, professionals should remember the law doesn’t expect perfection, just evidence of proper reasoning, Alex added.

Alex also pleaded with delegates to ask for more time to make an assessment if they ever felt like they were being rushed and he advised metaphorically placing yourself in the patient’s shoes so that you’re confident you’re making a best interests decision for that specific patient.

Establishing if someone is aware of their own deficits is one of the best ways to assess if they have executive capacity. This important point was well illustrated with a case study provided by Dr Matt Butler, Specialist Registrar in Psychiatry, South London and Maudsley,in which a woman with HIV who engaged with professionals and apparently accepted advice, but on further assessment was found, in practice, not to understand or even remember about her condition.

Emma Hall emphasised that completing an assessment effectively and compassionately takes time, especially if reasonable adjustments are required. Her co-speaker, Matt Butler, recommended a multi-disciplinary approach with input from doctors, social workers and welfare rights professionals.

The importance of collaborative communication with colleagues is matched by the need to recognise that impaired communication skills in a patient don’t equate to a lack of capacity.

Isla Jones, Speech and Language Therapist at St Christopher’s, said: “If you assume incapacity because of lack of communication you may work less hard and take less time because you’ve almost reached conclusion. Challenge yourself.”

Co-speaker Dr Mark Jayes, Speech and Language Therapist and Research Fellow, Manchester Metropolitan University, added practical advice: “You need to consider how to provide support to enable people to communicate to their full potential and have to think about the environment in which you’re conducting an assessment too. We may not be able to change their communication abilities, but we can change the environment and enskill ourselves to be better communication partners.”

One size doesn’t fit all, he added, stressing the need for tailored solutions based on an understanding of the ways in which the individual best understands information and expresses their choices.

Mark and Isla implored delegates to reach out to speech and language therapists for support in effective communication.

Addressing that need for help was one of the central elements of the presentation by Dr Sharmeen Hasan, Consultant Geriatrician, Kings College Hospital. She recounted examples of joint decision-making with numerous clinical colleagues from both palliative and intensive care as well as lawyers. And when the assessments and the aftermath have been traumatic, proper debriefs are invaluable, Sharmeen said.

“Understand the space where people are and remember that multi-agency working helps with complexity,” she added. Later, in the final Q&A session of the day, she complemented this point recommending professional colleagues use plain, nonclinical language to aid communication.

Reducing complexity and with it the accompanying stress was the focus of the presentation by Zoe Burridge, Adult Safeguarding Lead at Bromley Healthcare. Zoe addressed one of the most common forms of adult abuse as identified in Safeguarding Adult Reviews (SARs) – self neglect. Lack of confidence means professionals often don’t look at important factors like previous trauma, the impact of substance misuse and executive capacity when assessing people who experience self-neglect.

Yes, Zoe said, this cohort has the right make unwise decisions, but the professionals need to be satisfied that the individual is fully aware but consciously disregarding or giving less weight to certain facts relevant to the decision. In practical terms, when that individual says they can and will clear up their house, what if they don’t day after day?

Zoe encouraged delegates to embrace their curiosity. “If things don’t add up ask more questions and document what you see or what is said. Give evidence and record the assessment clearly and consistently.”

In Bromley, Zoe said, they’ve adopted a complex case pathway to ensure the proper management of risks posed by self-neglect.

Delegates watched as Michele King, with two members of her social work team and an actor, perform a very lifelike role play of a mental capacity and best interests assessment. This was complemented by numerous case studies shared by speakers throughout the day. In her second session, Emma Hall used these to illustrate the comparative benefits of Lasting Power of Attorney, Advance Statements and Advance Decisions to Refuse Treatment. Emma advised delegates to encourage people to have an LPA and an ADRT, ensure that they don’t conflict, add them EPACCS and ensure they are registered with the Office of the Public Guardian.

Alexandra Hollingshead, Partner, Farrer & Co

Runs a project providing free legal advice for people aged 18-30 with terminal diagnosis at Royal Surrey Hospital.

“I want to improve my knowledge so I can answer my clients’ questions. I know St Christopher’s well. I came to the Total Pain conference last year.

“Our clients some will have brain tumours and I need to navigate the capacity question when they’re drafting wills and advance decisions in a short time span with the help of a Clinical Nurse Specialist. It’s been so useful, both in terms of getting a nice overview of the subject and the detail on the MCA from Alex Ruck Keene is really useful. It was pitched really well for me. Capacity is incredibly familiar for me, but applying it in a palliative care context is new. This conference was just written for me.”

Karita Razzell, St Mungo’s Palliative Care Manager, said: “I work to support people experiencing homelessness to access palliative care and deliver training of palliative care. I love the Mental Capacity Act, it is fascinating. And there are a lot of capacity issues in the client group I work with – people with substance misuse issues, mental health issues, and lots of trauma and lots of young people with overlapping safeguarding issues. I’m trying to develop a training course on the Mental Capacity Act for homelessness so this is really useful. It’s been very interesting listening to people talking about executive capacity. It’s been encouraging to hear speakers toughing on professional curiosity too. It’s really nice that they’ve taken a realistic approach, looking at the barriers that there are to conducting capacity assessments. It’s all been really interesting and great to hear such a broad spectrum of opinions, expertise and perspectives.

Paul Lawrence, Head of Safeguarding, Shooting Star Children’s Hospice: “I’m new to world of palliative care and this falls under my remit. I’ve been looking for useful mental capacity training and webinars I also wanted to hear Alex Ruck Keene who was speaking. It’s been really engaging and translatable to a children’s hospice setting. I particularly enjoyed the session with the speech and language therapists. It felt really practical and useful, especially thinking about some recent cases we’ve had. That’s given me some practical approaches to how I might do things differently in future.”

30 Years of Progress: Inside the MND Conference Shaping Care and Research

Posted on 18 November 202518 November 2025 by St Christopher's

St Christopher’s and King’s College Hospital provided delegates with a packed programme of expert speakers to cover some of the most important issues affecting patients, at their 30^th MND conference. Reviews of the latest research into how best to manage choking, feeding, twitching, ventilating and communicating as well as how best to assess capacity, were among the key topics.

Delegates heard two different perspectives of the right time for a gastrostomy, with speakers approaching this difficult decision from the point of view if a specialist ventilation unit – the Lane Fox Unit at Guys and St Thomas’ (GSTT), while Teresa Leahy from University Hospital in Galway and Dr Emma Hall, Consultant at St Christopher’s provided the palliative care perspective.

*Dr Emma Hall, Consultant, St Christopher’s*

Dr Michelle Ramsey, Respiratory Medicine Consultant and Senior Specialist Dietician, Angela Reddy, both from GSTT, explained their decision-making process that includes discussions with the consultants from gastro, respiratory and cardio, as well as the patient.

They raised the growing issue of extreme high and low body weight and how this increases the difficulty of the PEG procedure.

Patients who used Non-Invasive Ventilation for more than four hours a day, Michelle said, tended to have a higher survival rate with a PEG.

Teresa reported that she and her colleagues in Galway wanted to design an evidence-based guide for timely RIG insertions and to that end analysed the experience of 25 patients. The mean time between insertion and death was 11.6 months, she reported. Positively, all but three died in their preferred place of care.

A review of gastrostomies over the last three years at St Christopher’s showed similar findings, said Emma Hall who added that in addition to the MND MDT that has been established, open information sharing sessions with people considering tube feeding would be a positive next step.

The thorny issue of mental capacity was subject to a one-hour presentation by solicitor Henry Frydenson who provided delegates with several key takeaway messages.

Firstly, was being clear on the meaning of ‘mental capacity’. He emphasised that assessing someone’s capacity relates only to their ability to make a specific decision at a particular time.

In assessing someone’s capacity, there are two stages, functional and diagnostic and there are five basic principles:

Start from the presumption that someone has capacity
The person is entitled to support in making their decision
Unwise decisions cannot be categorised as wrong decisions
Always ask yourself if the best interests of that person are being deployed. This, Henry said was the very essence of the Mental Capacity Act. Ask yourself the acid test, if what you’re doing is in the person’s best interest and, if you have any doubt, then the answer is that you probably don’t
Any intervention should have the least possible restriction.

Henry stressed the importance of record keeping to aid any defence, should there be litigation.

Being clear about the distinction between an Advanced Statement and an Advanced Decision was a further key takeaway. The former may provide useful information about a person’s wishes, but, like a DNAR and unlike an Advanced Decision (AD), it is not legally binding.

For that AD to be binding though, it must be signed, witnessed and specify that it applies even if the person’s life is at risk.

Dr James Bashford, NIHR Clinical Lecturer in Neurology at King’s, reported on a year-long research project to learn more about muscle fasciculations in people with MND and to establish if these could provide biomarkers to show progress of the disease and assist with drug development. He concluded that fasciculations could be used as a fast-track diagnosis tool and previewed an upcoming study that will use this to monitor the effectiveness of the drug Tofersen.

That led neatly into the update on clinical trials, provided by Dr Jemeen Sreedharan, Wellcome Trust Senior Research Fellow at King’s.

Nine patients are currently receiving Tofersen at King’s but, while it is approved in the US and EU, we’re still awaiting a decision in the UK, despite evidence it slows disease and prolongs life, Jemeen said.

There are a number of other trials in progress in the UK, being conducted faster and more effectively than previously, including one to measure neurofilament levels.

In terms of prolonged survival times, Dr Esther Hobson provided delegates with a review of her research into the effectiveness of Non-Invasive Ventilation (NIV). She described it as the most effective treatment – specifically in people who used it for more than four hours a day.

Effective communication of its benefits and ongoing monitoring and support are key to increasing the number of people using NIV, Esther added, breaking this down to three key actions: Enquire, Explain and Normalise. Providing people with a tangible goal which NIV could make more achievable is an effective way of helping people maximise what matters most to them.

For people to hear her authentic Cockney voice, was certainly amongst the things that matter most to Yvonne Johnson, a woman living with MND who, along with her devoted husband Orville, provided an emotive and compelling slice of lived experience.

The couple were invited to share their experience at the conference by Dr Richard Cave, Speech and Language Therapist – Co-Director of the Centre for Digital Language Inclusion at UCL’s Global Disability Innovation Hub.

Yvonne is one of a growing number of people using speech recognition technology pioneered by elevenlabs which, along with Centre for Digital Language Inclusion at UCL, is, Richard said providing people with the hope of maintaining their identity for longer. Rapidly, the centre has developed speech recognition tools in 10 African and five European languages which are capable of creating synthetic versions of people’s voices in under a minute.

A group of people sitting at a conference

Richard described this as ‘democratising technology’.

In terms of symptoms that affect a large proportion of people with MND, choking is right up there. According to Dorinda Moffatt, MND and Neurorespiratory Specialist Practitioner at Prospect House Hospice in Swindon, it affects 70% of patients.

Extraordinarily though, Dorinda added, an exhaustive search uncovered practically no research papers on choking. So, she, along with Dr Sara Mazzucco, Consultant Neurologist at Great Western Hospital, have embarked on a three-year research project funded by the Motor Neurone Disease Association with the expressed aim of identifying effective ways of helping people who do choke.

Dr Mazzucco said: “We can categorically say that it is a neglected symptom despite being important to people living with MND, their carers and health care professionals.” One theory for this, is the use of the word ‘choke’, Sara and Dorinda believe.

A clearly designed and widely disseminated guide is the desired outcome.

The conference’s final session focused on the individual not the disease, as Mandy Bruce, who leads the Psychological and Spiritual Care team at St Christopher’s, shared some of the work she and her colleagues have done with people with MND and their motivation.

“Being heard and valued is so important,” Mandy said. “Especially when identity is being lost. Art therapy can help people strengthen their inner resources to help hear the suffering.”

Learning disabilities conference paves way for progress

Posted on 22 October 202522 October 2025 by St Christopher's

One hospice employs a full-time Clinical Nurse Specialist (learning disabilities), some research now exists into the experience of people with learning disabilities at the end of life, and a collection of resources have been created to improve communication with this patient group about issues surrounding death and dying, but there’s so much more that needs to be done.

That was the overwhelming takeaway message from St Christopher’s first ever Learning Disabilities and Palliative Care Conference held on 10 October.

In the day’s final session, Michele King, St Christopher’s Social Work Team lead, provided delegates with a message that captured the theme of the whole the conference, as she urged them to provide people with learning disabilities with the tools to make their own decisions.

“It’s about liberating people with learning disabilities, not rescuing them. Ask yourself, ‘would I be treating someone without learning disabilities in this way’.”

Two women sitting together — *Phoebe Mooney, Clinical Nurse Specialist for People with Learning Disabilities (left), Emma Hall, Palliative Consultant (right)*

Delegates had earlier been provided with examples of current best practice as well as an update on the expanding body of research on this important subject that affects approximately 2% of the population and yet sees almost four in ten of them die an avoidable death – twice the proportion of the rest of the population.

The conference was the brainchild of St Christopher’s Palliative Care Consultant Emma Hall and Phoebe Mooney, the first Clinical Nurse Specialist (Learning Disabilities) to work in a UK hospice.

Phoebe began the day spelling out that issues facing people with learning disabilities – that they’re less likely to have access to palliative care and so less likely to get the care they need when they need it. This is exacerbated by the fact their symptoms are more likely to go undetected for longer, so they receive a later diagnosis.

These stark observations were rendered even more concerning by the findings of the The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme, shared by Professor Henk Parmentier, Croydon GP and Croydon Neurodiversity Clinical Lead. Most concerning of all was the revelation that people with learning disabilities die almost 20 years younger than the rest of the population.

A number of speakers talked about the problem of delayed diagnosis. One reason for this, Phoebe said, is clinicians’ false assumption that their health issue is related to their learning disability. She urged people to ‘always think physical first’.

Through Phoebe’s concerted outreach to learning disabilities organisations, St Christopher’s has increased its caseload to 40 patients, almost three quarters of whom she and colleagues support to live and die in their own home. Simply making clinicians in the community aware that they can refer these patients directly to the hospice has made a marked difference, Phoebe added.

She also shared best practice and the latest research with her hospice colleagues, while supporting care homes in the local area as well as preparing families of people with learning disabilities for their deaths.

Sharing photos of some of her patients, Phoebe said:
“Behind every photo is someone who is very special.”

Phoebe (left), Tim (centre), Harriet Hughes, Clinical Paramedic Practitioner (right)

Several speakers built on this important sentiment, sharing how staff and fellow residents in care homes needed support to prepare for their patient’s and friend’s death.

In fact, the importance of appropriate collaboration and communication were also key themes of the conference – whether that’s co-creating resources with people with learning disabilities and fellow professionals or running regular clinical case meetings with a wide multi-disciplinary team.

That kind of co-creation is exemplified in the Victoria & Stuart project, run at Kingston University and Professor Irene Tuffrey-Wijne and Dr Andrea Bruun inspired the audience with a number of short films demonstrating the work they do with their team of researchers with learning disabilities – including the end of life care toolkit they’ve created.

Six speakers standing beside each other smiling

Being prepared to offer a measure of flexibility for this patient group was a further key takeaway from the day. Clinicians were encouraged to consider reasonable adjustments such as arranging hospice visits before a stay, extending appointments, following up on no-shows, and arranging for consistent staffing.

Emma Hall said while it might take an army of people to help someone die at home, in line with their wishes, people with learning disabilities have as much of right to do so as anyone else.

One major barrier to this is late diagnosis and that, Prof Parmentier said, is often down to a failure to carry out routine cancer screening for people with learning disabilities. Raising awareness and distributing screening kits in care homes and conducting annual health reviews can make a significant difference, he added.

Several of the speakers shared patient stories either verbally or on video to illustrate examples of good and not so good experience and two family carers shared their experience in person. Sarah exemplified the importance of communication – in a case study shared by Sue Marsden, Clinical Nurse Specialist Leader, Greenwich and Bexley Hospice.

By recognising Sarah’s risk of dying, Sue and her colleagues have been able to work with her and her friends and family to plan for it. Acknowledging the risk doesn’t mean you’re giving up on that patient, she stressed, emphasising that she’s now known Sarah for 14 years.

Any delegates seeking a call to action, got what they were looking for, from Jane Kachika, Clinical Quality Improvement Senior Manager, Learning Disabilities and Autism at NHS England, said:
“Every statistic represents a family, an individual and a story – it is not just a clinical concern but a moral one. Yes, there is some hope, but this must be matched with future action.”

Advancing Equity in Palliative Care: A New Model for Supporting People with Learning Disabilities

Posted on 27 June 202527 June 2025 by St Christopher's

Two and a half years since becoming the first Clinical Nurse Specialist (Learning Disabilities) at St Christopher’s, Phoebe Mooney remains the only such nurse working in a hospice in the UK.

With 1 in 50 people in the country living with a disability, many of whom will have palliative care needs, Phoebe would much rather be a change maker than a lone voice.

It’s for that reason – to facilitate greater cooperation between hospices and learning disability teams in their area – that Phoebe and St Christopher’s Consultant Dr Emma Hall have organised a conference – Learning Disabilities and Palliative Care – on 10 October.

Phoebe says:

“It’s the first time St Christopher’s has hosted a conference on this subject and after facilitating a successful workshop for professionals in South East London, we thought it was really important to share what we’ve learned about improving access to, and best practice in, provision of palliative care for people with learning disabilities.”

Learning disabilities conference graphic

Being a trailblazer, Phoebe has already seen a significant impact since joining the hospice and is keen to share what she, colleagues and patients and their carers have learned.

“Generally, research shows that there is a huge gap and that people with learning disabilities are not getting access to palliative care. I feel very privileged here to be able to play a part in closing that gap.

“I never quite imagined when I joined St Christopher’s in February 2023 that we’d have grown the number of people we’d care for with learning disabilities from about 30 a year to 80.”

Two key factors in this success have been building partnerships, and Phoebe and her colleagues’ willingness to learn from each other.

“It takes an army of people to get it right. Right at the start I was given the freedom to make connections with the learning disabilities teams locally and we’ve built some great relationships with them so that joint working has really worked.

We’ve also involved the community nurses and there’s been so much shared learning with my colleagues here at St Christopher’s about what to expect and when to refer. I had no experience in palliative care when I started so I’ve learned loads from them too.”

Pictured left to right, Phoebe Mooney (Clinical Nurse Specialist), Tim (patient), Harriet Hughes (Clinical Paramedic Specialist).

Phoebe identifies referrals as one of the major issues affecting equal access to palliative care for people with learning disabilities.

“People can struggle to express their wishes and communicate their symptoms. Often people with learning disabilities are more socially isolated and vulnerable which makes services harder to reach and they are referred to us later. That can then mean we have less time to overcome their anxieties.”

So, what can people expect to discover and learn from the conference?

As well as Phoebe sharing her experience of building her practice at St Christopher’s, delegates will be appraised of the latest research, hear from the team behind the Learning from Lives and Deaths programme and, perhaps most importantly get to hear from people with lived experience – both patients with learning disabilities and carers.

“I hope people who come to the conference will take away insights from those people that will enable them to enrich their personal practice and improve care within their setting so that together we can help to close the gap and address health inequalities,” adds Phoebe.

Whether you work in palliative care or care for people with learning disabilities you won’t want to miss this conference. To find out more about the speakers and to book your place, either in person or online, click here.

a graphic with the words learning disabilities in palliative care conference, 10 October

Ubuntu: A Global Portrait of Death, Care, and Connection

Posted on 6 June 202510 July 2025 by St Christopher's

Photographer Andre Francois and his collaborator Paula Poleto were already many years into their largest project to date, capturing through the lens the different approaches to and experiences of death and dying in communities all over the world, when they established the connection between them.

Now, St Christopher’s is privileged to be exhibiting 40 of the more than 55,000 photographs Andre took, many of which appear in his book Ubuntu – I am because we are. taken from the African philosophy which focuses on humanity, belonging and community.

A text graphic with black background. In white writing - Ubuntu, I am because we are

Paula says:

“We weren’t aware of Ubuntu initially. We did each trip intuitively, but as we progressed, I found out about Ubuntu and it fits perfectly and provided us with the concept that completely sums up what we wanted to do.”

After years spent living with and observing far-flung communities – in the Brazilian rainforest, in the aftermath of the Haitian earthquake, Japanese tsunami and in an acute hospital at the peak of the pandemic in their home city of Sao Paolo among many others, Andre and Paula, now had a framing for their work.

“It didn’t change how we see death; it just made it stronger,” says Andre. “Death is a big learning process. Death is devasting but it is also a great master that teaches us a lot about what life is really all about – what matters in the here and now. The moments in life when I have felt most alive is when I was around death.”

Andre and Paula cite St Christopher’s founder Dame Cicely as a major influence on their thinking and the way they work. Andre uses a photograph of a man dying of Covid in a hospital bed with a doctor holding his hand to illustrate one of Dame Cicely’s best-known quotes: “The suffering is only intolerable when nobody cares.”

Another photograph of a Haitian girl whose leg has been amputated, being cradled in her mother’s arms, demonstrates the point similarly and Andre’s explanation of how he came to take this photo provides further insight.

“I don’t feel like I am the only one taking the photograph. It’s the other people in the room – or the tent in this case – taking it too, it’s a collaboration. When visiting a community you have to establish a connection and get to know the people. Once people realise the purpose of what we’re doing, even though they are facing death, they are willing to cooperate so we can tell this great story. That’s where we feel the Ubuntu philosophy is present.

“The moment you are dying is very personal but if we have developed that level of connection then we are working together and we just become a part of the scene – present.

“In this photograph, the caring happening in the image is its central point. The suffering is only unbearable when there is no caring. In order to care you need to look at the person you are caring for and when you do that you realise you are part of something much greater than yourself – that is Ubuntu”

Having spent 14 years travelling the world and documenting death and dying, does Andre feel optimistic and how would he like people viewing the photographs to feel?

*Ubuntu – photography by Andre Francois*

“It’s hard to control what people will feel about the photographs and depends on where people are on their own journey when they see them. But we want to show the truth and to focus on the care people are receiving – not on the injuries of illness they have. We wanted to show what these people have to show us about being humane and caring, often in the worst circumstances. We have a lot to learn from these people and how they cope with death and hardship.

“People tell us they feel emotional about the photographs but what stays with them is the connection, the care and community.”

It’s those three ‘Cs’ that make the exhibition a perfect fit for the hospice says Toby Kilby-Pollard, St Christopher’s Community Artist.

“This is a dream enrichment project. We are always looking for effective ways to tell stories that illustrate what palliative care is. It also aligns with our commitment to connect globally and locally and ties in with the 20^th anniversary of Dame Cicely’s death.”

If you would like to visit the Ubuntu Exhibition, please contact – communityaid@stchristophers.org.uk

How St Christopher’s and King’s College Hospital are Transforming Pain Management in Palliative Care

Posted on 3 June 20253 June 2025 by St Christopher's

The Sharp End of Pain conference at St Christopher’s brought together specialists in pain and palliative medicine to explore the potential of closer integration between the two disciplines. Chaired by Dr Alison Landon, the event served as a platform for healthcare professionals to exchange experiences, challenge traditional boundaries, and highlight the practical benefits of collaborative approaches in managing complex pain. With demographic changes pointing to an ageing population living longer with chronic conditions, the urgency to refine and unify strategies for pain relief is greater than ever.

Dr Sue Peat, consultant in pain medicine at King’s College Hospitals, set the scene and outlined the main aims for the Sharp End of Pain conference at St Christopher’s.

“The whole essence is integration between pain physicians and palliative physicians. We have lots to learn from each other and learn best through that personal connection when dealing with difficult situations.

“St Christopher’s have been partners and good friends for years and we would like to let everyone know how this relationship works and would like to learn from you too.”

A woman speaking to a group of people in a room — Dr Sue Peat speaking

More than just physical pain

Dr Alison Landon, Palliative Care Physician at St Christopher’s, reminded delegates that when talking about pain, they should always look at it in the context of Dame Cicely Saunders’ concept of ‘total pain’. As well as looking back, Alison also encouraged colleagues to look to the future and the expected demographic shift to a population that lives longer with multiple morbidities, associated chronic pain and a different set of expectations.

While St Christopher’s can say it reduced the pain of 60% of its patients – this raised the question: what about those for whom it’s not addressing their pain?

Alison shared the experience of a female patient with complex and debilitating neuropathic pain that analgesics didn’t ease. After several ”single shot” epidurals she was admitted for an indwelling one and spent the final three weeks of her life in the hospice with her pain managed and surrounded by her family.

That’s where the Interventional Pain Team from King’s comes in.

How do St Christopher’s and King’s work together and what difference does it make?

In practical terms, Sue Peat and fellow anaesthetist colleague, Dr Catherine Stack, visit the hospice every Wednesday afternoon (which they describe as the highlight of their working week), conduct assessments of any complex cases as well as completing interventions where required. They are also on call 24/7 for advice and troubleshooting and conduct some home visits.

Catherine expanded on the needs of pain management experts when working in a hospice, sharing that the same high standards of sterility and excellent nursing care are essential. Most anaesthetists are happy to perform lumbar and thoracic epidurals without imaging in a hospice setting and patients are happy to accept the slightly greater risk of it not working in exchange for staying out of hospital.

Alison urged colleagues across the sector to explore this partnership model, to find their local co-workers, get to know them and build a model of training, education and shared learning.

A group of people listening to a the conference lead.

Dr Jeannine Gambin, palliative care physician at Malta Mater Dei Hospital in Malta, who completed part of her training at St Christopher’s and conducted research in the process, stressed the importance of palliative care physicians seeking advice and support. One of the key benefits she noted of the partnership model was the very real sense patients felt of not being abandoned.

Dr Dominic O’Connor, Consultant Anaesthetist at King’s, emphasised the physical benefits of peripheral blocks. He said:

“They provide reliable pain relief with a reduced burden of opioids and have the potential to be long-lasting while also being relatively safe. That is the goal for symptom management in later stages of life – one injection and a few months of benefit.”

The procedures are not long, but do require a setting that’s safe and comfortable for the patient, as well as a ‘willing, not expert, assistant’.

In the afternoon session, delegates submitted challenging cases for the experts to consider. Among the key points to emerge from these were the potential usefulness of a cordotomy, the need to address a patient’s psychological as well as physical pain, and the importance of judging a patient’s willingness to discuss and decide for themselves.

That requirement for flexibility rings true for other elements of the work of the pain intervention team, Sue Peat reflected, as she shared details of a case when a needle going that little bit too far led to an epidural becomes an intrathecal. “Having a plan b is very important,” she added.

Providing the hospice’s point of view of the essential factors for making this collaboration work, delegates heard from Julie O’Neill, St Christopher’s Ward Manager, as well as Palliative Care Consultant, Dr Emma Hall. Julie stressed the importance of continual learning in the form of workshops, workbooks and attendance at meetings with the Pain team. To manage the challenges posed by a lack of frequency of interventions, she outlines how the team can simulate these in order to maintain confidence and competence.

Julie described the relationship with the Pain team as symbiotic, adding:

“If you and your colleagues are looking to do this, it’s about building those relationships so you can make a difference for the patients you’re caring for.”

Dr Emma Hall pointed to the dedicated administrator who allows both teams to operate with flexibility. Emma also outlined some of the other practical building blocks, like SLAs, indemnity cover and a rota that ensures sufficient cover, day and night. Another ingredient in the success of the partnership is the inclusion of the hospices head of psychological therapies in the multi-disciplinary meetings.
“The pain intervention team have been so supportive and bring such a huge amount to the service,” Emma concluded.

Optimise the relationship by focusing on each other’s strengths

Palliative Medicine Consultant Bryony Alderman, who spent time training at St Christopher’s called for pain intervention to be prioritised in training so as to instil confidence in the palliative care workforce and overcome the binary perception of pain team vs palliative team. Engaging with and seeking early advice from the pain team and sharing the knowledge you build, are two further pieces of advice Bryony shared.
Maintaining a two-way learning process built on constant, clear communication that recognises each party’s needs is key to a productive working relationship between a pain intervention and palliative team, Sue Peat said. Recognising each other’s strengths and weaknesses is also crucial. For example, she said, that means leaving the difficult conversations to her palliative colleagues.

The Sharp End of Pain conference made it clear: collaboration between pain and palliative care teams is not just beneficial—it’s essential. Whether through shared clinical practice, cross-disciplinary training, or simply building trust and familiarity between teams, the message was consistent: integrated care leads to better outcomes. When pain specialists and palliative physicians bring their strengths together, patients benefit from a more holistic, responsive, and compassionate approach. The success stories from St Christopher’s and King’s College Hospital offer a blueprint for others—one built on mutual respect, ongoing learning, and a shared commitment to easing suffering in its many forms.

“What is to become of me?”

Posted on 25 April 202525 April 2025 by St Christopher's

“I don’t know, but I’ll make sure you’ll be all right.”

Those were the words of reassurance Dr Rev. Andrew Goodhead, St Christopher’s Chaplain, responded with when faced with an existential question from his dying mother.

“One day when I went to visit her during her final months, she just came out with this question: ‘What is to become of me?’. It was a hard question to ask and even harder to answer. It was clear she was in distress and wrestling with this very deep question.”

It was this very personal and poignant moment and the anticipation of the 20^th anniversary of St Christopher’s founder, Dame Cicely Saunders, that was the inspiration for a two-day learning event on 9 and 10 July ‘What is to become of me?’.

Andrew hopes delegates, who can attend in person or online, will appreciate the opportunity to revisit and reimagine Dame Cicely’s ‘Total Pain’ concept – covering the social, spiritual, emotional and physical.

“I think it’s as pressing now as it was back in 1967. It’s just the context of the work has developed and there are possibly greater challenges like climate change and inclusion, affecting the world that cause people distress. We want people to reassess ‘Total Pain’ and our response to it in the light of this contemporary suffering.”

In practical terms, delegates will be fully engaged in the conference programme of day one and asked to keep a personal journal. Their responses and reflections will be compiled, alongside the input from the speakers, to form a critical essay.

Among those speakers will be contributors providing different cultural perspectives from around the world, including from Rwanda and India, as well as an assessment from Canada of the role of assisted dying as it relates to ‘Total Pain’.

Freelance researcher and writer, Dr Joe Wood, will draw on his book Cicely Saunders and Total Pain to challenge people to consider both her legacy and its limitations.

Andrew is excited by potential for learning from developing countries as well as the experts by experience who will relate the experience of what it is like to die in south London in 2025.

Day two of the event will see Dr Ros Taylor and Dr Justin Sanders introduce three case studies which will be analysed by an expert panel and provide delegates with the opportunity to offer their understanding gleaned from personal and professional experience.

Andrew is adamant that the most important qualification for attendance is an open mind.

“Medicine can just be a deductive process and there is increasing pressure on professionals to ‘do something’. People expect things to be treated and sorted. We need to be inquisitive, to allow people to talk and to provide narrative support.

“We won’t be providing people with a definitive response but something that is the start of a conversation, and an admission that we don’t have all the answers, but collectively sharing the ones we do have, so that we can all build on them.”

Bookings are now open to attend the two-day event – “What is to become of me?”

How a Unique Hospice-Hospital Partnership is Transforming Patient Care

Posted on 15 April 202515 April 2025 by St Christopher's

“Our partnership with the pain intervention team at Kings transforms what we can offer to our patients.”

It’s for that very reason that Dr Alison Landon, Palliative Care Physician at St Christopher’s is keen to invite all hospice clinicians, both doctors and nurses, as well as pain consultants and their teams, to the Sharp End of Pain Control conference, being hosted at the hospice on 23 May.

Alison says her clinical colleagues in the hospice and counterparts from King’s College Hospital have learned hugely from each other and that patients have benefited enormously from the additional expertise of this acute hospital specialist team.

“I’ve learned hugely about procedures, drugs and their management and I think the team from King’s have learned about ‘total pain’ and the holistic approach from us,” adds Alison, who’s worked with the Pain Intervention Team from King’s throughout her 15 years at the hospice.

“They come and see a number of patients once a week in the inpatient unit or in the hospice outpatient clinic and make a massive difference to them.”

So, what does that mean in practical terms?

Like all palliative care clinicians, Alison sees a lot of pain and wants to be able to manage it. Sometimes, she and her colleagues at the hospice require additional expertise to achieve that pain control.

“We are really privileged to have our close working relationship with the team at King’s and we want to share with clinicians in other hospices what they do and how the relationship works – performing interventional pain techniques usually only done in a hospital setting.”

This is the first time since the pandemic that St Christopher’s has hosted what was an annual pain control conference, and Alison is keen that delegates hear about the practice as well as the theory.

“I think it is a relatively unusual relationship for a number of reasons. Partly because people haven’t thought of it. Also, I think some hospital doctors might be worried about performing some procedures in a hospice. You need the right drugs and the right facilities but first and foremost you need to find out who’s in your area and start a conversation.”

“We want to make people aware of the role of interventional pain in the palliative population and appreciate what can be done in a hospice setting as well as understand the value of partnership.”

On the day, delegates will get to hear details of a two-year review of all the cases that involved the Pain Intervention Team, hear live from a patient with lived experience of an intrathecal pump and watch a video of the ‘before and after’ of a patient having an epidural.

Apart from an openness to exploring this collaborative approach, delegates will also be encouraged to come to the conference with tricky cases to be discussed when they split into groups.

To find out more about The Sharp End of Pain Control and to book your place click here.

MND Conference: Hope in Action – the A-E of MND

Posted on 22 November 20244 July 2025 by St Christopher's

In fact, the day provided an A-E of actions to focus on.

Delegates at St Christopher’s and King’s College Hospital’s Motor Neurone Disease (MND) annual conference 2024, entitled Hope in Action, were treated to an outstanding set of presentations, by turn stimulating, informative and moving

Advocating

Putting people living with MND at the heart of research and care and giving them a voice in the process was a recurring them of the conference. Richard Cave, Speech and Language Therapist, MNDA and University College London Global Disability Information Hub Research Fellow, called on those involved in the development of new technological innovation to support this patient group to seek their input more often.

*Richard Cave, Speech and Language Therapist, MNDA and University College London Global Disability Information Hub Research Fellow*

Theresa Chiwera, Lead Research Nurse and Senior ALS Clinical Trials Manager at King’s, highlighted how researchers had listened to patients when designing new drugs trials to be quicker. The First UK Platform trial which, rather than taking the typical decade from test to delivery, operates more flexibly conducting ongoing analysis and swapping drugs in and out depending on their effectiveness.

As is often the case, hearing from people living with MND provided some of the most compelling moments of the conference. In this case, delegates got to hear two patients advocating for themselves – Eleanor and Sukdhev, a middle-aged woman, and an older man who share the same SOD1 gene, known to cause MND. Both have multiple family members who have had MND. Both are now receiving monthly doses of a drug called Tofersen via lumber puncture.

Eleanor explained the impact. “It took six months to think something was happening, but I am pleased to say it has stopped in its tracks. I have no further symptoms. In fact, I can still walk and whereas I couldn’t cross my legs, I can now. There are things I can still do independently and that is massive to me.”

Speaking on Sukdhev’s behalf, his son, Hardeep, said; “Our story is a positive one. We have had exposure to something others haven’t and Dad’s quality of life has been very good.”

As well as running a support group for the 16+ people on the Tofersen programme, Eleanor has also launched a campaign – Prescribe Life – to make it available for all people with SOD1, advocating on behalf others with the same condition.

Breathing

Jonathan Shapey, Senior Clinical Lecturer & Honorary Consultant Neurosurgeon, King’s College London provided updates on new techniques to aid speech and breathing. In the US in 2023, he reported, surgeons implanted high performance speech prosthetics into the brain of a main with MND. Using machine learning they were able to capture the brain activity associated with making 125,000 words.

Using this as inspiration, Jonathan is exploring the potential for using a brain/computer interface to support someone living with MND to breathe. Most people with the disease die of respiratory complications and there are a number of challenges related to Non-Invasive Ventilation (NIV).

Jonathan is exploring whether it’s possible to place an electrode on the brain stem to learn the stimulation, use AI to decode the signals and generate the necessary muscle responses for breathing. He acknowledged the ethical and practical issues at play, asking delegates: “what level of preclinical evidence would be required to make it ethical to conduct a clinical trial using a brain/computer interface in human patients. Is it, he added, an acceptable risk to plant an electrode in that region of the brain which could irritate other nerves? And are patients likely to accept the risk and at what stage of the disease would it be helpful.”

Communicating

Richard Cave reported on the incredible speed with which technology, AI in particular, is moving to provide speedy, accurate and manageable communication for people living with MND.

In the seven years since he started working in this field, Richard said, it has advanced hugely. Whereas the process of recording, storing and creating a synthetic approximation of someone’s speech took three months back in 2017, now, as he demonstrated to an astonished audience, it takes only 30 seconds. Enabling people to continue to communicate is hugely important in the fight against one of MND’s worst non-physical symptoms – social isolation.

The platform, 11ElevenLabs is free to use for people with MND, their carers and clinicians working with them. Delegates were even more impressed when Richard played ‘his voice’ reading a pre-written passage in Hindi, to show that the technology is already working in 32 languages.

Generative AI, Richard reported, is providing even greater leaps of progress. A tool called Easy Talk, developed in Australia is able to listen and respond to context.

Dying

Perhaps fittingly, the final presentation of the day focused on the very topical and emotive issue of assisted dying. In two parts, it offered insights into the real-world opinions of people in south London, as shared with St Christopher’s Community Action Researcher Melissa Fielding, and a dispassionate analysis of the legal and ethical issues, from Alex Ruck Keen KC, barrister, writer and educator.

Alex Keen guided delegates through some of the key language, legal principles and different assisted dying regimes around the world. He reminded them also of the fact that providing treatment without consent amounts to an assault. Equally, he said it was important to be clear that there is no legal right to die. People loving with MND would not be among those able to action assisted dying, he confirmed, given the proposal that people must be able to administer the lethal drugs themselves.

Melissa Fielding shared the findings of her research founded on 50 in-depth interviews with people from a range of backgrounds as well as group discussions that provided an opportunity to understand their underlying reasons for holding their views.

*St Christopher’s Community Action Researcher Melissa Fielding*

Perhaps contrary to the binary debate, as portrayed in some places, Melissa found that many of the participants were empathetic and able to hold several views at once. While likely to support the concept, young people’s support was not so deeply felt as other age groups.

Personal experience of healthcare or caring for a loved one, influenced people’s point of view on assisted dying. Those who’d had poor experiences were more likely to oppose it.

Root and branch reform of the NHS, improved end of life care and wider societal death literacy were among the fundamental changes people want to see, the research found.

What delegates she’d take away from these findings is the clear message that the community needs to be listened to much more keenly on such important issues – an important re-referencing of advocating.

Eating

Sally Thomas, Specialist Neurosciences Dietician, King’s College Hospital, shared news of a new trial – OptiCALS – designed to test the limited evidence that exists that increasing the available energy (or increased calorie consumption) for nerve cells may make them more resistant to the degenerative process in MND. This may lead to a slowing down of disease progression, improving physical function and quality of life for people living with MND.

The intervention has been designed by a team of specialists to help people with MND receive a tailored, high-energy diet at the most appropriate time, in the most effective manner. The OptiCALS nutritional intervention package is available via an online portal which includes videos, dietary information, advice, and interactive tools designed to assist people with MND to optimise their nutrition.

Dr Nikhil Sharma, Consultant Neurologist and founder of BioCorteX, at Queen Square Institute of Neurology, opened many eyes to the importance of what’s in our guts. His focus now is on using a database of five million microbiome samples from across the world to understand the efficacy of drugs, on the basis of the relatively newly found knowledge that the bacteria that lives in each of us reacts in different ways to different drugs. While a drug might be very effective in China, the difference in the microbiome of people living in France, means it might well have little or no effect on them.

Dr Sharma believes this work help accelerate and optimise trials and support the development of more targeted drugs. Riluzole, the only licensed MND medication in the UK, is currently under BioCorteX’s microscope. That is certainly evidence of Hope in Action.

A text graphic with the words Annual Motor Neurone Disease Conference, 7 October

If you missed last year’s MND conference, you can still attend the MND Conference 2025.

This year, we continue to explore the latest research and advancements in the following key areas:

Genetics – Progress in understanding genetic factors and new methods of prevention
Communication – How emerging technologies are helping restore voices to those living with MND
Collaboration – The power of multidisciplinary approaches in delivering better care
Research – The latest findings and developments from King’s College Hospital

Book your place today.

The Future of Ageing

Posted on 8 August 202426 November 2024 by St Christopher's

And yet, hospices – the very places championed as the centres of excellence when it comes to providing quality palliative and end of life care – are, in most cases, not offering this growing patient group that support they so need.

That’s why, following on from the half-day care home conference and a day devoted to dementia, St Christopher’s is hosting a two-day event, designed to bring together commissioners and clinicians from hospices and care homes.

In fact, emphasising the need for these two workforces to pool their knowledge, skills and experience, St Christopher’s is actually co-hosting the conference with one of the leading care homes in this field – Nightingale Hammerson.

Helen Simmons – CEO, St Christopher’s Hospice

St Christopher’s Chief Executive, Helen Simmons, who previously performed the same role with Nightingale Hammerson, says:

“There are around 8000 care homes for older people and given the scale of the demographic challenge approaching the country I don’t believe that 220 hospices opening care home wings is the solution, although I totally understand why some are tempted to move in this direction.”

Over the two days, delegates should expect to be challenged and provoked as well as informed and updated with the latest best practice in dementia and palliative care.

The programme of speakers includes some of the country’s leading thinkers and practitioners as well as several people with lived experience.

Jill Horn, from Rowcroft Hospice will share progress on her project to develop a care home dementia village, while Ally Tomlins, of Nightingale Hammerson will describe how her approach, underpinned by medicine, but also dedicated to finding the person behind the disease, is working.

Ros Taylor will expand on her firm belief that care homes will be the hospices of the future and that education will be fundamental to this transition.

Maaike Vandeweghe, Course Director and Senior Associate, St Christopher’s CARE, who has worked with Helen Simmons to pull together the packed programme of speakers, believes the two-day event is a priceless opportunity for professionals at all levels from across the two sectors.

“We’re convinced that hospices have a lot to learn from care homes and they have a lot to learn from us. It’s about offering an opportunity to respect each other’s skills and expertise.

“Some care homes may feel that are a second-best provider, but we all need to move away from that idea and be clear that it’s not about care home versus hospice but about putting patients and families at the centre of everything. Neither sector can do it on its own, we need to work together and with district nurses and old age mental health, and share that expertise.

“I would like everyone who comes to the conference to feel empowered and feel like they can be a leader in the field.”

Zena Aldridge, National Institute for Health and Care Social Care Nurse Fellow, will be speaking to that point in her presentation about the future of social care nursing, highlighting the need to recognise the crucial role these nurses play.

Maaike adds: “Palliative care nurses often say they struggle being with someone with dementia as they’re not used to dealing with the psychiatric symptoms. Care home staff are doing this 365 days a year and know how to respond. And that’s the sort of knowledge sharing we need to facilitate.”

Far from being a passive listening experience, Maaike says the conference will be looking to stir delegates to return to their organisation motivated to instigate change.

“All of the speakers have been asked to come with provocations, to challenge people to think about the potential action their organisation can take and to think about who, if not them, should be leading the change.”

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Category: CARE Conference