Breaking down barriers in End of Life care

Posted by Colette Hawkins, Consultant in Palliative Medicine, South Tees NHS Foundation Trust

Health research achieves extraordinary things. There are countless examples of life-changing, disease preventing or curative treatments. These are rightly celebrated and have shaped our society, as well as our expectations, around health and illness.

Break Through 1995 "Walls break hearts, hearts break walls" by 
Pierre Marcel via Flickr © 2011 (CC BY-NC-ND 2.0)

But what about people living with a life-limiting illness and those approaching end of life? Health professionals often struggle to move away from an interventional, disease-focussed approach to a more holistic, person-centred approach. This risks unwanted intervention and missed opportunities for choice. This is mirrored by health research. In the UK, just 0.21% of health research is focussed on palliative and end of life care.

The reality is that people living towards end of life really struggle and whilst this may be directly related to ill-health, it is often issues of daily life which incapacitate them. These are generally overlooked by health professionals.

Since 2017, I have been involved in running research on legal needs in life-limiting illness. One element of this is social welfare legal needs (SWL): matters of daily life for which the law defines rights, entitlements and protections. In the context of life-limiting illness, the ‘big three’ are issues relating to money, employment and housing. These are prevalent, impacting most people in some way. However, their greatest impact is on people who are already disadvantaged, for example those experiencing homelessness, financial insecurity or debt, socially excluded or marginalised groups and people with multiple physical and/or mental illness. These people experience the most SWL needs, are most affected by them and are least likely to access support successfully.

Social welfare legal needs will often be presented to health professionals, wrapped up in a person’s physical complaints, but missed in favour of a focus on disease. So where else could they go? Our foundation research scoped the system of support for these issues. A wide range of services beyond health and social care provide advice and support for SWL needs, including charities, community groups, advice sector, legal services, social services, Jobcentre, housing groups, social prescribing, statutory organisations and more.

But if we took months to map the system (and it’s still growing), can we expect people in vulnerable and difficult situations to find their way?

Funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC), our research has engaged members of the public with lived experience, as well as service providers in Gateshead, to find an effective system response to social welfare legal needs. We used Human Learning Systems, an approach which accepts the complexity of a system and supports co-produced responses to need founded on continuous learning.

Engagement of people with lived experience of life-limiting illness and SWL needs proved critical to the value of this project. Focus group discussions revealed the scale of the challenge to manage SWL needs. The walls they faced included not feeling heard, not knowing where to go for help, lack of information to help themselves, lack of responsibility from professionals or services, poor communication between services and long delays to resolution (or non-resolution). These insights, along with those of service providers, told us that the ideal system response should be founded on relationships and offering information, problem solving and a joined up approach. This seems quite obvious and appropriate, so why are there so many walls?

Attitudes and structures 

The walls come from two main sources: professional attitudes and structures. Attitudes obstruct when they use labels, stereotypes or assumptions, treat illness, not people, miss opportunities for honest discussion, restrict choice through failing to listen to priorities and wishes, overlook responsibility for holistic needs and forget to work in partnership. Structures maintain silos and fragmentation of care with the lack of clear routes to advice and support, boundaries to access through geography, referral criteria or social context, expectations that patients and carers will self-advocate and navigate themselves and missed opportunities to capitalise on the expertise of others. These walls obstruct identification and management of social welfare legal needs and amplify inequalities in care towards end of life.

We believe interprofessional learning is a route to breaking down these walls. We use short stories of experience instead of ‘sterile’ clinical cases, and facilitate discussion to explore what matters most, and the approaches to meeting needs in an inclusive, respectful and effective way. Initial pilots have shown that this is a route to closer integration of services, although the latest pilot, within the ARC project, also highlighted the challenge of engagement with online learning, accentuated by the pressure and workplace fatigue linked to COVID-19. Feedback showed that people felt too busy to attend or just didn’t turn up on the day.

We have secured a NIHR End of Life Partnership grant which we are using to co-design a research strategy for evaluation of system-wide learning around SWL needs in life-limiting illness. We are re-evaluating what we mean by ‘end of life’, pushing beyond traditional views and including people at risk of premature death. We are broadening our insight into the inequalities and prejudices embedded within care of people who may be living towards end of life. We can see the walls; our task is to break them down.

This project ‘Integrating care to meet social welfare legal needs in life-limiting illness. Qualitative investigation of a multi-agency, complexity-informed intervention’ has been funded by by the National Institute for Health Research (NIHR) [Applied Research Collaboration North East and North Cumbria (NIHR200173)]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Image: Break Through 1995 "Walls break hearts, hearts break walls" by Pierre Marcel via Flickr © 2011: https://www.flickr.com/photos/21063155@N06/5409729627 (CC BY-NC-ND 2.0)

Research journey for hospice evaluating its innovative dementia care

Posted by Nicola Kendall, Namaste Lead, St Cuthbert’s Hospice and Dr Sonia Dalkin, Senior Lecturer in Public Health and Wellbeing and Lead of the Fuse Healthy Ageing Research Programme

To celebrate World Hospice and Palliative Care Day, we wanted to share part of St. Cuthbert’s Hospice’s research journey, in collaboration with Northumbria University. Specifically, we wanted to share some of the innovative activity that has been taking place in practice surrounding ‘Namaste Care’ and the evaluation of it with Fuse funding.

What is Namaste Care?

As dementia progresses, family carers describe a changing relationship and sense of loss, which can cause significant distress. Finding new ways of communicating is important to help the family carer and person with dementia to maintain a good quality of life. ‘The End-Of-Life Namaste Care Program for People with Dementia’ (Namaste Care) challenges the perception that people with advanced dementia are a ‘shell’, a ‘living death’; it provides a holistic approach based on the five senses. Early evidence suggest that it can improve communication and the relationships families and friends have with the person with dementia.

How has St. Cuthbert’s Hospice used it?

St Cuthbert’s Hospice in Durham has started to provide Namaste Care in the person’s own home, as opposed to its more traditional use in care homes. We train volunteers who are then matched with a person with dementia, in terms of personality, abilities and interests, for example. Volunteers visit the person, usually weekly for two hours and try to build a bond with the person living with dementia and the family.

Why did we want an evaluation?

Evaluating Namaste Care has proved challenging for many organisations. It is straightforward to measure reduced number of falls, less infections and reduced agitation, but teasing out the nuances of why the approach works requires more detailed study. Also, we were aware that our use of Namaste was somewhat novel, with only one other hospice in the UK implementing Namaste Care in people’s own homes. A team at Northumbria University, led by Dr Sonia Dalkin applied to the Fuse Pump Prime fund and was successful in attaining a small pot of funding to do some preliminary evaluation of our use of Namaste Care.

What did the evaluation find?

The preliminary research found that when used in people’s own homes Namaste Care has positive outcomes, such as increasing engagement and social interaction. Previously, social interaction had potentially been overlooked in the literature as an important outcome of Namaste Care. This was particularly important for carers who felt that their loved ones with dementia often didn’t have any interaction with others, beyond those living with them. The importance of matched volunteers was also highlighted, and special relationships were built between volunteers and the person with dementia. Family members would often use the time when the volunteer was present as respite as opposed to taking part in the session, and this highlighted interesting perspectives on their involvement in Namaste. The evidence suggested that those who care for a person with dementia at home provide continuous care and have little input from other services, therefore provision of two hours contact with a trained Namaste Care volunteer allowed them to concentrate on other things, knowing that the their loved one was in safe hands. This is in contrast to the usual delivery of Namaste Care in care homes, where family members may feel more able to get involved as they do not provide continuous care.

What next? 

Book for organisations and carers
interested in using the approach

• Delivery of Namaste Care in various settings
The ethos of the Namaste Care approach has proved transferable into various care settings at St Cuthbert’s hospice. We now run a Namaste inspired ‘Potting Shed’ Men’s Group and we deliver Namaste Care at the bedside in an acute hospital. We are also in the early stages of discussions about taking Namaste Care into prisons, either via staff training or training prisoner buddies. We are very proud to say that due to this and other work we have been shortlisted as finalists for ‘Best Team Award’ in the 10th National Dementia Care Awards 2019.

• Spreading the word
The Hospice has developed a training programme which is steadily gaining popularity. Nicola Kendall (Namaste Lead) has also written a book as a guide for other organisations and carers who are interested in using the approach: ‘Namaste Care for people living with advanced dementia - A practical guide for carers and professionals’. The book is now available from Jessica Kingsley Publishing.

• Research
Nicola has just attended the Namaste Care International Conference and continues to take Namaste Care from strength to strength at St Cuthbert’s Hospice. We are now planning to further evaluate our work, building on the findings of the preliminary evaluation and the guide book… Watch this space!

Is the UK an intolerant society for children?

Posted by Peter van der Graaf, AskFuse Manager, Teesside University

UNICEF statistics about child wellbeing among the 29 wealthiest countries in the world made for uncomfortable reading in 2007 with the UK bottom of the league table. Children and young people in Britain were among the unhappiest, unhealthiest, poorest and least educated in the developed world in the early years of the new millennium. Since then many initiatives and policies have been implemented to increase child wellbeing in the UK and when the league table was repeated by UNICEF in 2013 the UK moved up 15 places to a mid-table position of 16th.

However, we are still behind many European countries and with the ongoing austerity measures and continued disinvestment in health and social care services for children we could find ourselves back at the bottom league in the not too distant future. This begs the questions whether ‘simply’ improving health and other services for children is enough?

According to Sir Al Aynsley-Green, Professor Emeritus of Child Health at University College London and former President of the British Medical Association, the problem runs much deeper. He argued at the Fuse Knowledge Exchange Seminar yesterday in Newcastle, titled 'Think Adult - Think Child', that the real problem in the UK is that we are becoming an intolerant society for children. He pointed to the dire straits of politics for children in the UK: not only is the voice of children lacking from national policy making (an argument that he is well positioned to make as the first Children’s Commissioner for England), the policy making itself has often been poor.

The BMA published a damning report in 2013 in which it concluded that “the national focus on children has been short term, inconsistent and untrustworthy”. Specific policies to support children, such as Every Child Matters, have been systematically eroded by consecutive governments; the recent much watered-down Childhood Obesity Strategy is another example of this and Theresa May’s new enthusiasm for grammar schools strikes further fear into the hearts of child rights advocates.

Politicians are not the only ones to blame according to Sir Al: the media regularly publish headlines about children and young people being a nuisance and causing crimes, while shops put up signs in their windows stating that dogs are welcome but that kids can only enter two at a time and, only then, without a backpack and when closely supervised. Most shockingly, public places such as railway stations are increasingly being fitted with high pitched devices that adults can’t hear but which are very unpleasant for young people and deliberately intend to drive them away.

One area where the neglect of children’s needs is particularly visible is bereavement: every 22 minutes a child in the UK loses a parent. While no routine data are collected in the UK on this group, estimates suggest that the majority of young people face the death of a close relative or friend by the time they are 16 years old. In spite of the many services available to families to help them stop smoking, exercise more and eat healthier, there is very little available for children who experience bereavement.


Sir Al presenting at the Fuse Knowledge Exchange Seminar

Specialist service providers attending the Knowledge Exchange (KE) seminar expressed their concern about not being able to cope with the current demand, as school teachers and parents lack basic skills in being able to talk to children about emotional problems, such as bereavement. In spite of this, we know from research that bereavement can have a lasting impact on the life of children long into adulthood. Bereavement in childhood has been linked to educational underachievement, joblessness, fractured adult relationships, adverse psychological and psychiatric consequences, together with poor physical health.

Sir Al’s presentation was therefore more a call to arms. What can we do in and outside Fuse to improve child health and wellbeing in the North East? Firstly, we can act as an advocate organisation to draw more attention to the needs of children and their position in society. Are their voices heard within Fuse? Do we engage with them in our projects?

Secondly, we can bring partners together across public health and related sectors in the North East to focus attention on this topic and bring together evidence and best practice to inform new collaborations. The KE seminar provided a platform for this that could be followed up. We also have a dedicated Early Life and Adolescence Programme (ELAP) within Fuse but does our research link to education and events later in the life course? For example, in Finland shops can rent a grandparent to help them engage with children when they visit their shop.

Thirdly, we need to turn this dialogue into a research agenda for child wellbeing in the North East. How can we mobilise evidence to change the prevailing attitude among politicians and the wider society so that they instead see children as valuable assets and a key policy priority for any government? This also involves challenging popular concepts, such as school readiness, which focus on individual responsibility. As Sir Al suggested at the end of the seminar, we should turn this concept around: are schools ready for children and what do they need to be able to be ready? Are they able to support children’s emotional development and can they help them to cope with bereavement experiences?

Making the UK a better place to live for children requires more than service redesign, it needs political will and consistent pressure from a coalition of organisations to achieve this, supported by actionable research to change hearts and minds.

End of life care: looking through a different lens

Guest post by Joanne Atkinson, Director of Programmes, Northumbria University to coincide with World Palliative Care Day 2015.

When reflecting on my professional journey I often ask myself how did I get where I am today? The thing is your personal story has great resonance for you as a professional; this is an insight into my doctoral journey.

I have worked in palliative care for many years, firstly as a Macmillan Nurse in the acute sector, and then at Northumbria University teaching palliative care. Commencing a professional doctorate I had a stuttering start, but eventually arrived at where I am now with my research which is a study using Foucauldian discourse analysis. My research explores the influence and impact of emerging, competing and overlapping discourses on practice in end of life care, and provides insight into the discursive tendencies impacting on end of life care practice in the hospital setting.

Recent years have seen unprecedented media interest in end of life care, and the emergence of powerful discourses that influence health care professionals delivering care. My research focusses on the tensions, challenges and possibilities that emerge from this intersection.

You may recall some time ago the tragedy that occurred in Greater Manchester when Harold Shipman, a GP, killed his patients. The media coverage that occurred as a result of this has had a significant impact on the way in which doctors and nurses caring for people at the end of life. The public and other professionals questioned the prescribing of opiates for pain and symptom relief. This cultured the germ of a research idea. So my research journey started.

As I commenced my professional doctorate the media frenzy related to end of life care and the Liverpool Care Pathway developed, and I found myself at the cutting edge of end of life care. It is fair to say that I was taken aback by some the media outputs. 

I undertook an analysis of artefacts from journalistic press not tabloids (although this did include the Daily Mail!) and terrestrial television (factual outputs). Initially this was to be over a period of six months, but this was extended due to the profile of end of life care at the time. In addition tape-recorded narratives were taken from four consultants and six clinical nurse specialists working in palliative care, and a cancer centre. Participants recorded the narratives over a two-week period.

The media artefacts and narratives have reaffirmed the metaphorical language utilised when discussing end of life care, and highlighted the impact that the sensationalisation of end of life care has on practice, instilling a moral panic that both disables and fuels the need for change. Prominent discursive formations have emerged related to the power of representation and the impact on practice when caring for people at the end of life.

Back to my personal story which is inextricably linked with the research journey, having life happen throughout this research has no doubt enriched my understanding, but holding a very old man’s hand when he thinks he is going to be killed because he is so ill makes the impact discussed above so real especially when that very old man is your father.

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Photograph (5138623107_b05613223b_o) by More Good Foundation via Flickr.com © 2009: https://www.flickr.com/photos/moregoodfoundation/5138623107

Fuse Duck and Rachel’s Day Of (health policy related) Fun

Posted by Rachel Stocker

During the final year of my PhD (2014) I was very lucky to gain funding for a three month fellowship at the Houses of Parliament, Parliamentary Office of Science and Technology (POST). POST is an office of both Houses of Parliament, providing independent and balanced analysis of public policy issues that have a basis in science and technology. POST recruits around 20 fellows per year, funded by a range of funding bodies including the Economic & Social Research Council (ESRC), the British Psychological Society (BPS), etc, to research and write a four page briefing ‘POSTnote’ on a science/technology related subject. The POSTnote itself gives a concise, unbiased overview of information, highlighting key areas for parliamentarians to consider when policy is being made. It’s (genuinely) a great opportunity to see how health policy actually works within parliament and the angle which parliamentarians take on health subjects rather than the angle researchers might take. Plus you get to wander round the parliamentary estate (as it’s called), eat in the subsidised restaurants, chill out next to Churchill… and… yeah!

I applied to work on the topic of end of life care, and as it happens, end of life care is high on the policy agenda at the moment. I wrote my POSTnote – which can be found here – between April and July 2014. Most POST fellows actually live in London for the three month period – which is fabulous – but as I’m pretty much set up here in the North East, with a husband, mortgage, and four babies cats, I couldn’t really swan off down to London. Luckily I could conduct nearly all of the required research and interviews from home, with a little bit of travel to London every so often to conduct interviews – most of the ‘big names’ live in London or nearby (sad but true) – and catch up with my supervisor at the POST offices.

Rachel and Fuse Duck at Queen's Campus, Durham University

So what does this have to do with Fuse Duck, I hear a chorus of voices ask? ……… well, Fuse Duck and I recently had a fabulous research policy day out (is this a thing?). He accompanied me to an event held at Portcullis House, run by POST, on my POSTnote. The event itself was titled ‘Palliative and End of Life Care’ and was a seminar, with several peers, MPs, researchers, and other interested individuals.

However when I say accompanied… Fuse Duck did not actually accompany me into the event. Despite having lugged him on a train from Darlington to London King’s Cross, then on two tubes across London to Westminster (he’s a bit portly and was shoved into my little suitcase on wheels), the security staff at Parliament deemed poor Fuse Duck to pose too much of a security risk in a parliamentary building. He had to sit in his bag at the security desk, next to the x-ray machine, and wait for me.

Who knew a lovingly hand knitted duck would pose such a threat to the inner workings of our parliamentary system? He didn’t seem too fussed luckily – although I could swear I saw an evil twinkle in his eye before we set off…

POST fellowships are open to those in the second or third year of their PhD (and some are open to post-docs), more information can be found here.