Research co-funded by Marie Curie reveals lack of support for people with MND leaves some suicidal

Research has found that a lack of palliative care provision for people with motor neurone disease (MND) following diagnosis can cause emotional distress and in extreme cases, lead to people experiencing suicidal thoughts.

The research review, conducted by the University of York and co-funded by end of life charity Marie Curie and the MND Association, concludes that palliative care is commonly restricted to the last few days of life, despite MND being a terminal illness. The research also indicates that early access to palliative care would enhance emotional support for patients and their unpaid carers.

The research highlights the experiences of many people with MND who reflect on the issues they have experienced through the course of their illness, including suicidal thoughts following diagnosis:

“For many individuals, their diagnosis came as a shock; for others, it confirmed their expectations.  Many negative reactions prevailed, including bewilderment, denial and a sense of loss and sadness. At the extremes were people who became very distressed by their position and those who experienced suicidal thoughts.”

Throughout the review, early integration of palliative care was shown to improve people’s ability to adopt coping strategies during the continuous sense of loss and uncertainty they felt, alongside bouts of low mood that extend across their whole experience with the disease.  

Samantha Bolsher’s husband, David, died of MND in 2014. Having assisted with the research, she commented on her own experience as his carer:

“I think having palliative support earlier would definitely make coping with MND easier. In our case it wasn't driven through any of the caregivers until it really needed to be, and with this disease and the speed at which it progresses, you are always having to play catchup. I think if we'd started talking about things earlier, we perhaps could have got our heads around what we were facing a little quicker.

“If this disease is treated the same as other terminal diseases and people can have access to palliative care at an appropriate time, it would give both the patient and their family valuable decision making time. That was so important to David. When you are told that nothing more can be done and that the person you love is going to die you both want to have some say and control over how things are going to happen.”

Kate Flemming, Professor of Hospice Practice, Department of Health Sciences, University of York, said:

“To imagine that some people feel so unsupported after a diagnosis of MND that their distress may extend to suicidal thoughts is heart-breaking. It is a really hard time and this review shows that more needs to be done earlier to support people and make sure they get all the care that they and their loved ones need.

“For some people there is still a sense of ‘there is nothing more we can do for you’ around palliative care, however this is far from the truth. Palliative care is care tailored to the individual, leading to more empowered decision-making and improved management of symptoms, be they physical or emotional.

“Introducing palliative care in the early stages of motor neurone disease can make life significantly more comfortable for both the patient and their carers, enhance feelings of support and reduce feelings of distress.”

Dr Brian Dickie, Director of Research, MND Association, said:

“MND is a disease of low prevalence, but high need. This comprehensive review, covering studies from several countries around the world carried out over two decades, drills down into the real world of the many challenges faced by individuals and their families following a diagnosis of this devastating disease.

“There is much that can be done to support people and give them a greater degree of control over their condition, but it needs multidisciplinary, co-ordinated palliative care that is personalised to the needs of each individual. That’s exactly the kind of care the MND Association strives for through its 22 specialist multidisciplinary care centres and networks across England, Wales and Northern Ireland, with many working closely with their local hospice networks.

“Given the speed at which MND can progress, care must not only be timely, to support the physical and psychological changes through the disease course, but ideally also anticipates the needs of people in advance, to avoid a crisis from occurring. The findings of this review will serve as an important benchmark to help drive further improvements in care and support.“

Dr Adrian Tookman, Medical Director at Marie Curie Hospice, Hampstead said:

“The experiences highlighted in this paper feel very familiar to me. Many people I meet in my clinics, who have MND, have articulated the same feelings of a lack of control, fear around the progression of their disease and in the most extreme cases, suicidal thoughts.

“Thankfully the team at the hospice can help people move forward with a greater feeling of control but this is dependent on timely referrals to the right specialists. There is still a lot to be done to educate people, healthcare professionals included, about the positive impact of palliative care to patients with MND and other terminal illnesses. An important message is that this care is not just for people with cancer and we need to reach more of the people who miss out. As this paper shows, the emotional stress for patients and their loved ones is profound when the right care and support isn’t there.”

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Notes to Editor

About Marie Curie 

Marie Curie – care and support through terminal illness 

Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care)  

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance.  Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.  

Marie Curie is the largest charitable funder of palliative and end of life care research in the UK. The charity invests in research to help inform better quality of care and a better end of life experience for people with any terminal illness, and the people who care for them.

If you are in need of support, or have any questions about any aspect of terminal illness, call the Marie Curie Information & Support Line free on 0800 090 2309 or visit mariecurie.org.uk/help. 

For more information visit mariecurie.org.uk  
Like us at: twitter.com/mariecurieuk  
Follow us on Facebook: facebook.com/MarieCurieUK  

About MND Association

The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

We improve care and support for people with MND, their families and carers.

We fund and promote research that leads to new understanding and treatments, and brings us closer to a cure for MND.

We campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.

About motor neurone disease (MND): 

• MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
• It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc. 
• It can leave people locked in a failing body, unable to move, talk and eventually breathe.
• Over 80% of people with MND will have communication difficulties, including for some, a complete loss of voice. 
• It affects people from all communities.
• Around 35% of people with MND experience mild cognitive change, in other words, changes in thinking and behaviour. A further 15% of people show signs of frontotemporal dementia which results in more pronounced behavioural change. 
• It kills a third of people within a year and more than half within two years of diagnosis. 
• A person’s lifetime risk of developing MND is around 1 in 300.
• Six people per day are diagnosed with MND in the UK. 
• It affects up to 5,000 adults in the UK at any one time. 
• It kills six people per day in the UK, this is just under 2,200 per year. 
• It has no cure.