The Big Conversation: MND diagnosis and care

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The MND Association’s Director of Care (South), Karen Pearce, gives her thoughts on one of the clinical sessions on the first day of the Symposium.

Karen Pearce
Karen Pearce

I have just listened to four really inspiring presentations in the Holistic Care session – co-chairing with Jennifer Armstrong (Lois Insolia ALS Center – Northwestern University – Feinberg School of Medicine).

It struck me that so much of what we do is based on conversations, the ability to communicate in a sensitive way. The session highlighted how important it is for health professionals to have the skills to talk about very difficult issues early in the disease progression and to also work with the communication difficulties so many people with motor neurone disease (MND) experience.

Discussing MND prognosis between doctors and patients

Dr Juliet Jacobsen (Massachusetts General Hospital, USA) highlighted the importance of careful communication about the prognosis of MND with patients. She explained this should start as early as possible as managing hope and balancing that with the reality of the situation helped people consider the future and make decisions about it.

Careful conversations tailored to each person and asking about hopes and worries could pave the way for discussions that meant ‘horrible information could be shared in a hopeful way’. These skillful conversations helped manage uncertainty and evidence is suggesting this improves quality of life and reduces depression or anxiety.

A diagnosis of MND – experience of neurologists and patients

Prof Samar Aoun (Curtin University, Australia) explained that giving a diagnosis of MND was challenging for both the neurologist and the patient. The most critical aspects of the way the diagnosis was given were the empathy and knowledge of the neurologist and the amount of time spent with the person with MND and their family.

The study, which took place in Australia, indicates that nearly 40% of the people felt that the experience of being given their diagnosis could have been better. One of the best practice guideline factors says that 45 – 60 minutes should be spent with the family. This is a challenge for neurologists in the UK who in general hospital clinics are expected to have 15-minute appointment slots!

This highlights the positive work of our own Care Centres and Networks, where so much more time can be spent with patients and their families. Samar said the next steps were to develop an education programme and best practice protocol about breaking bad news…..I look forward to seeing this in the future.

The role of family carers through the eyes of a person with MND

Dr Geraldine Foley from Trinity College Dublin looked at the burden on carers, both from a carers perspective and from the person with MND’s point of view. She shared the results of her research which had considered the role of the family in MND care through the eyes of the person with MND.

Geraldine explained that people with MND often gave emotional support to their family and may accept, decline or delay services because this is what their family preferred, although the view of the person with MND may be completely different. She stressed the importance of health and social care professionals considering the supportive role that the patient played, especially as there is such a strong focus on carer burden in current MND research and practice.

You can hear Geraldine speaking more about her research on our Symposium Live page.

Carer strain over the course of MND progression

The last presentation of the session was delivered by Huub Creemers from Amsterdam who highlighted that the strain on informal carers increased as the person’s MND progressed. His research looked at any areas that could be modified to reduce this strain. The strain and anxiety was increased if carers were not able to find positive coping strategies and it was clear that multidisciplinary care teams should consider the needs of the carer.

This is an area of interest to the MND Association as our recent Carers’ survey highlighted that over 100 hours a week was spent in a caring capacity – far more hours that a recent national survey of all carers.

More information on caring for someone with MND can be found on our website: Information for carers and MND Association publications on this topic

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.