Q&A with Marie Curie and Macmillan

Dr Sabine Best is Head of Research at the terminal illness charity Marie Curie, responsible for overseeing Marie Curie’s portfolio of research activities and Adrienne Betteley is the Specialist Adviser for End of Life Care at Macmillan Cancer Support. Both charities are partner organisations of the Consortium for Hospice and Community Research. We spoke to them as part of our spotlight campaign on Hospice and Palliative Care to find out about future priorities and the importance of research in this area.

Quote from Dr Sabine BestQuote from Adrienne Betteley

The Consortium for Hospice and Community Research is working towards the UK becoming a global leader in hospice and community research within five years. Why is research in this area so important?

Sabine: "Research in this area is vitally important as people are living much longer and as a result of this more complex needs are arising. Recent research has shown that at least 63 per cent of all deaths would benefit from palliative care and it's therefore important for Marie Curie to try and address this challenge. For patients it is imperative that research takes place in this area as currently less than 0.7 per cent of all cancer research studies include palliative care and in non-cancer conditions, the percentage is even lower.

“Also, hospice and community settings have different research needs. Hospices have specialist palliative care physicians working in them, but that is often not the case in the community. People don’t have access to research or don’t always get asked, even though we know that many patients in those environments are willing to take part, mainly for altruistic reasons, as they appreciate the opportunity to help others. Through the Consortium platform we can highlight the need for research in this area in both settings.”

Adrienne: “Palliative and end of life care research has not received enough funding historically, despite being one of the most important areas of care and support that people need to access early when they have an illness, such as a cancer, that cannot be cured.

“Through Macmillan Cancer Support’s work we have found that there are still extreme inequities. Not everyone has the same access to care, care is often not planned, and individuals are not being offered choice and support. As a result, end of life experiences can be extremely challenging for the individual and those around them. Without the evidence to explain some of these experiences and inequities, we will never be able to improve the system and services to improve the lives of people who are living and dying with an incurable disease.”

In terms of your own organisational priorities and initiatives, can you tell us a bit more about the work you’re doing in connection with hospice and palliative care?

Sabine: "Marie Curie is a service provider and that’s where our interest in providing care comes from - we have many different departments and staff providing vital care in our nine hospices and in people’s homes across the country. Last year we supported more than 50,000 people with terminal illnesses, including cancer, dementia, heart and lung disease. We also support their families and carers.

“We recently launched a Palliative Care Knowledge Zone providing guidance and support for healthcare professionals. This was designed to allow those working in these areas to have access to expert information, knowledge and support to help deliver the best possible care for people living with a terminal illness. This is open to all and is designed to encompass all conditions.

“Another area of interest is our policy and campaign work that allows us to provide patients and carers with a voice. We link researchers to these teams to help inform policy discussions.

“We support research in external research programmes as well as our own hospices. We employ research leads to embed research in hospices and have managed to increase the number of research participants from 200 to 600 in the last few years as a result of this.

"Our annual conference is taking place on Wednesday 17 October [2018] and is held in conjunction with the Palliative Care Section of the Royal Society of Medicine, focusing on key issues affecting palliative and end of life care. It provides the opportunity for researchers and professionals to share knowledge. This year the topic is radical and new models in palliative care and how they are being implemented and will include innovative approaches to addressing challenges faced in palliative care.

“The annual Marie Curie Research Grants Scheme, a dedicated funding stream for palliative care, is currently run in partnership with the Motor Neurone Disease (MND) Association and the Brain Tumour Charity. This makes over £1.25 million of funding available. The current call for research proposals has recently launched and has a deadline of 10 December 2018 for outline applications. The aim of the Grant Scheme is to improve clinical practice in palliative and end of life care and to generate and share useful knowledge to help inform better quality of care for people living with a terminal illness and their families, carers, friends and communities.”

Adrienne: “Macmillan Cancer Support has been a key driver in developing palliative care services across the UK, particularly the creation of the first Macmillan Nurses in the 1970s. Macmillan continues to provide funding, education grants and support to professionals working in cancer and palliative care. New approaches are also being looked into in order to provide earlier intervention in palliative care in a more integrated and flexible way for people who have a life limiting condition. Research has been commissioned to demonstrate the impact in places such as North Manchester Macmillan Palliative Care Support.

“Macmillan provides a range of services and also plays a huge role in influencing both at a national and local level with the aim of ensuring that palliative care is a high priority and funded appropriately.

“Macmillan also invest in research to reach and improve the lives of everyone living with cancer, and that helps us to understand the numbers, needs and experiences of people with cancer and generate the evidence needed to enable a better cancer experience.

“In addition Macmillan run an annual open competition grant funding scheme for UK-based researchers to propose research projects that address questions relevant to our research priorities, that are scientifically and methodologically excellent, and that have clear potential to benefit people with cancer.”

How can we encourage health and social care professionals to consider hospice and community settings as sites for their clinical research studies?

Sabine: “The short answer to this question is to make it simpler to recruit in hospices. The recently revised eligibility criteria which allows hospices to be included in the remit of Clinical Research Network (CRN) support is a great step forward. Also awareness of research in hospices and examples of where this works well is important for opening dialogues. CRN Sub-Specialty Leads for supportive and palliative care also play a huge role in raising awareness.”

Adrienne: “We need to raise awareness of the importance of research in end of life care, particularly in the community as we know that most people want to die at home but often do not. We need more evidence to help our understanding of the reasons which prevent this happening.

“We need to encourage employers of the palliative care workforce to support research in practice, whilst being aware of the challenges of stretched resources, particularly in the community.

“We should also look to create learning and development opportunities to increase knowledge and skills around research in practice.”

Are there any particular groups or demographics who you think could benefit from taking part in hospice and community research?

Sabine: “There are different groups in each setting who can benefit from taking part in research. Within hospices, it is still largely cancer patients who are being looked after, as well as people with terminal illnesses such as motor neurone disease, and research aims to increase quality of life by finding better ways of dealing with distressing symptoms such as pain, breathlessness or incontinence. People with non-cancer conditions have many unmet needs in palliative care and much research in the community is needed to find the best way of providing such care. This for instance includes patients diagnosed with dementia in care homes, as many people die in care homes due to the ageing population. Other minority groups such as the LGBT community are also seldom involved.”

Adrienne: “We currently have little understanding of the numbers, needs and experiences of people living with a cancer that cannot be cured. It’s an extremely complex time and we need to do more research to understand. The emotional impact of being told the cancer can't be cured​, together with the physical effects, can be huge. In addition there are numerous practical issues around getting affairs in order and the variety of treatment options can be confusing. Managing the uncertainty is challenging, and we know research is needed about appropriate communication with patients at this stage, particularly around prognosis to best inform their treatment choices.

“The specificity of groups in society who could benefit from being involved in research is more challenging. We know that there are many who are more vulnerable and harder to reach such as people who are homeless, in prison, or have mental health issues. In addition we know from the Cancer Patient Experience that all ethnic minorities, but particularly Chinese patients, experience poorer outcomes than those of the broader population. In addition both younger patients and those aged over 85 have poorer cancer experiences than the wider population. The challenge is knowing which groups to target, as they all feel like they should be a focus.”

Looking at the more short to medium term, what do you think the future plans and focus should be for the Consortium?

Sabine: “We need to be monitoring what’s going on in terms of research nurse support and recruitment figures in hospices, and the national data from the CRN will support this. We also need to be looking at how many doctors and nurses have protected time to take part in research. Alongside this we need to continue to evaluate the impact of research in hospices and the community.”

Adrienne: “We need to understand the barriers to making progress in this area, and identify some enablers. The Consortium will focus on exploring the needs of people who are living with an incurable condition such as cancer. This is an often-overlooked group with highly complex and varied needs.”