Carer and family support: Highlights from Perth

This blog is part of the ‘Points from Perth’ collection of articles, where you can read about the content from some of the talks and posters presented at the 30th International Symposium on ALS/MND in Perth. All presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific abstract mentioned throughout the post in the official abstract book.

Written by Rachel Boothman

The impact of caring for people with MND was the focus of several presentations in Session 5B at the Symposium.Read More »

New research projects agreed to help improve palliative and end of life care

Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.

Read More »

Palliative Care Research – new funding available

Today an exciting announcement was made about three organisations working together to increase our knowledge on the best way to provide palliative and end of life care. The MND Association and the Chief Scientists Office in Scotland (CSO) will be working with Marie Curie on a new research call.

Marie Curie Logo

In addition to a £1million funding pot from Marie Curie, the CSO will contribute £225,000 of funding and MND Association will contribute up to £200,000. Scientists, clinicians or healthcare workers are invited to submit their outline applications by 14 January 2016.

Acting on what you told us

The areas that we’d like to fund are based on a project that was completed in January 2015, known as the ‘Palliative and End of Life Care Priority Setting Partnership’, shortened to ‘PeolcPSP’. At the core of this 18 month project were responses to an online survey, where many people shared their questions or experiences about the end of life. We were pleased that many people affected by MND took part.

From those survey responses, we worked out that there were a massive 83 topics that would be suitable for a research study (and where no conclusive studies had already been conducted). All of these are important topics to investigate, so we’re hoping that researchers with an interest in working in any of these topics will think about submitting an application for funding.Palliative-care-2

So what kind of topics are included?

The topics for the call are the list of 83 questions from this earlier palliative care research study (the PeolcPSP study mentioned above). It is too long a list to include in this post, but the overarching themes include how (best to):

  • communicate topics on palliative and end of life care
  • manage symptoms and medications
  • provide support for carers and families
  • provide support in bereavement
  • provide support for staff (and staff training)
  • co-ordinate care services
  • provide access to services
  • decide where the care should be and what type of care

Where can I find out more?

A press release and more information on how to apply for this funding is available on the Marie Curie website.

The Palliative and end of life care Priority Setting Partnership final report is available online. There’s also a video about the project explaining how it happened and why it is important.

Research priorities in palliative and end of life care

Palliative-care-2In a fitting start to a new year, the results of the Palliative and End of Life Care Priority Setting Partnership top 10 priorities for research were released today. The topics range from: the best way to get out of hours palliative care, how to provide palliative care for everyone irrespective of where they live in the UK, to the best way to manage pain and discomfort for people with communication or cognitive difficulties.

For the MND Association the results will help focus future healthcare research and help support our campaigning for more funds for palliative and end of life care. Announcing the top 10 priorities for research is the start of a long process. I hope that it gives people with MND today a sense that their battles are being recognised, they’re not alone and that we’re all working together to ensure that better care is available. Read More »

What should be top of palliative and end of life research To Do list?

At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.

We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research. Read More »

Have your say about research priorities

The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?

Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?

Read More »

A summary of the Holistic Care and Quality of Life session

I wanted to write a ReCCoB blog about the Holistic Care and Quality of Life session, which is closely related to my interests, not least because I was due to present my work in the session.

The session opened with a talk from Dr Frank Brennan giving an overview of the role of palliative care in the management of MND/ALS. Dr Brennan opened his presentation by reading a poem written by Bruce Dawe dedicated to his late wife Gloria, in which he compares their shared experience of terminal illness to white water rafting. During the poem the author laments that he never sought help from the professionals with ‘life jackets’ that may have empowered him to ‘stay afloat’ while struggling with the chaotic experience of terminal illness. The full poem is available here. The point of the poem was to illustrate the great power of palliative care and carers in assisting people who are traveling down the potentially treacherous rapids of illness and caring for a loved one. Dr Brennan explained the ways in which palliative care can systematically assist patients and carers deal with physical, psychological, emotional and spiritual aspects of living with motor neurone disease. Following the great poem with which the talk was opened, Dr. Frank finished by reading some quotes from a short story written by Tony Judt, who had MND and described the illness as progressive impairment without parole.

Bridget Taylor then went on to describe her work in which she broached the difficult subject of sexuality in terminal disease compassionately, and in the words of another delegate, courageously. Bridget’s research involved a Heideggerian phenomenological analysis of qualitative interviews with 27 ‘patients’ and 14 ‘caregivers’. The talk opened with a well-evidenced description of the importance of sexual activity in those who are affected by terminal illness. Importantly, Bridget highlighted that for patients, the term ‘non-invasive ventilation’ is a misnomer as the therapy is invasive in terms of its impact on the lives of people living with MND. For one carer whose partner used NIV at night, there was a real sense that respiratory distress during sex may end her partner’s life, and she definitely didn’t want to have to explain that to her partner’s mother. Sexuality was explained to be a ‘silent bedfellow’ that was still very salient to the lives of the people she interviewed, suggesting that professionals should ‘make the first move’ when it comes to discussing these issues. A delegate, himself living with MND, asked if there was any information about sexuality, which apparently is just around the corner, before adding that if he was to die during sex, that would be OK with him.

Next was my turn to present my research to the delegates. I wasn’t feeling great with jetlag and a poor night’s sleep taking its toll. I presented on our model of psychosocial variables and their impact on quality of life. I explained that past research has shown that quality of life (QoL) was more closely related to psychological and existential factors than functional status, which our research supported. This phenomenon is known as the well-being paradox, and isn’t unique to MND. To summarise our model, anxiety and depression impacted strongly on QoL, even though levels of anxiety and depression are not much higher than we may expect in an age-matched normal population sample. The model identified fatigue and ability to cope as being suitable and realistic intervention points to increase patient quality of life as they have a strong effect on quality of life mediated through interactions with depression, anxiety and social withdrawal.

Following my presentation was another presentation on an aspect of QoL given by Dr. Grosskreutz from Germany. Dr. Grosskreutz’s work deals with health-related quality of life and its relation to social support and functional status. Our different conceptualisations of quality of life meant this work and my study provided juxtaposed findings. In this study, health-related quality of life was highly correlated to functional status (with correlations up to .78), whereas in mine it was less important (not correlating significantly at all with QoL). Social support was shown to be related to HRQoL, as well as functional status.

The stark differences between results when using global quality of life and health-related quality of life measures really drove home the importance of properly defining and measuring quality of life. We would benefit tremendously from the creation of a patient-centered definition of QoL in MND, which I hope will be forthcoming in the future. For the mean time it certainly seems like patients prefer subjective measures over health-related measures.

Anne Holden, a PhD. student at the University of Western Australia presented her research work examining barriers and enablers to decision making from the perspective of healthcare professionals. Anne explained that a proactive approach to decision making with good intra-team communication generally facilitated better decision making, meaning less need for catch-up during illness crises.

To close the session, Rachael Marsden from The Oxford Centre for Enablement described an interesting study in which she assessed whether professionals working with MND experienced compassion fatigue, and how closely their self-ratings were to their actual levels of compassion fatigue. Compassion fatigue has been studied extensively in nursing research and it appears clear that it is something that can affect the mental health of professionals as well as reducing performance, with reports of increased errors in prescribing in health care professionals with compassion fatigue. Thankfully, Rachael’s results suggest that professionals working in MND appear to be managing their compassion fatigue well and there was generally good agreement between self-ratings and the scores taken from an online questionnaire. The encouragingly high response rates Rachael managed to achieve suggests that online questionnaire administration might be a great avenue to explore in the future.

So that’s it, a jet-lagged summary of the holistic care and quality of life session. It was an engaging start to the 22nd symposium, and I’m sure there is plenty more still to come! I’ll try to squeeze some sleep in whenever I can!