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MND Research and Care Update

We're sharing the findings from an MND Scotland-funded PhD research project and announcing the recipients of the Gordon Aikman Scholarship.

Posted : 06/06/2019

We're delighted to share the results from our MND Clinical Research Fellowship, and to reveal the two recipients of the Gordon Aikman Scholarship into MND care.

Dr. Danielle Leighton was funded by MND Scotland for a three-year MND Clinical Research Fellowship, at the University of Edinburgh. One of the questions she sought to answer was how common MND is in Scotland.

She recently published the findings in the Journal of Neurology in April 2019 and her findings can be found below.

This study investigated the number of people newly diagnosed with MND each year (the incidence) and the number of people living with MND in Scotland at any one time (the prevalence). The research investigated the time period of 2015-2017, and used data from the Scottish MND Register/ CARE-MND platform.

The CARE-MND platform is set up to collect and store information about people with MND. This information helps researchers to build a broad picture of why MND happens to some people and not others, and can be used to audit care standards across different health boards and local authorities.

The team discovered the following:

  • About 200 people are diagnosed in Scotland annually. This represents an incidence of about 4 per 100,000 of the population per year
  • The number of people living with MND at any one time ranges between 400
    and 430. This represents a prevalence of about 8 per 100,000 of the population.
  • The incidence of MND in Scotland is not associated with social deprivation.
  • The incidence of MND in Scotland has increased (compared with 20 years
    ago) and is higher than that of other European countries. It is thought the main
    reason for this is that we have an exceptionally good infrastructure for MND care
    in Scotland, with a recent doubling of the number of MND Clinical Specialists.
    Researchers have therefore been able to identify and record people with MND
    better. Researchers are also now more aware of the different types of MND, and
    include these different types in our numbers.
  • Work is ongoing to explore other reasons which might explain the increased
    incidence, such as environmental and genetic factors. Theories include i)
    improved treatment of other diseases such as heart disease, ii) genetic variations
    which may be more common in Scotland.

Danielle Leighton said: “It was a privilege to take the lead on this study as part of my PhD Fellowship.

“Being aware of how common MND is in Scotland is essential for planning regional and national health services. Hopefully we have also been able to answer some important questions that people with MND and our supporters might have.

“This work is a result of the collaborative efforts of all MND healthcare teams in Scotland. We’ll be reporting back on more research findings soon and hope to continue our work to find out as much as possible about MND in Scotland.”

Gordon Aikman Scholarship

The Gordon Aikman Scholarship was set up in 2017 to support healthcare professionals to develop new ideas could improve MND care.

In June 2017, we announced that we would be match-funding the Scottish Government's annual £25,000 investment into the Scholarship, bringing its total value up to £50,000 per year. We have now selected the two recipients of 2018 funding.

Andy Bethell, MND Clinical Specialist
Mental Health Support Plans for People Affected by MND

This project aims to improve the wellbeing of people who care (unpaid) for someone with MND by creating and implementing a mental health support plan. This plan will provide a tool to enable the person caring for someone with MND to recognise and prevent developing mental health issues in themselves.

Andy said: “Approximately 10% of people with MND suffer from a mental health issue during the course of their disease, however over 30% of carers experience significant mental health issues when caring for someone with MND.

“This has a detrimental effect on both the wellbeing (mental and physical) of the carer and also the level of care they can provide for the person with MND, as well as its effects on the wider family group.

“My hope is that this project will reduce worry, stress and distress for carers which will then allow them to provide a better level of care for the person with MND, and improve the lives of those living with the disease.”

Dr Jenny Preston, MBE
Optimising the Health and Social Care Professionals Team for MND

People with MND are cared for by a number of different healthcare professionals with differing expertise. This group of professionals is known as a multidisciplinary team (MDT). This project aims to review the role of the MDT in the management of MND, and to develop consensus on best clinical practice in the configuration and format of MDT in the UK.

Jenny said: “UK guidelines suggest that each MDT should provide co-ordinated care for people with MND. The team should include health and social care professionals with expertise in MND who see people in their own homes as well as in the clinic. There is evidence that an MDT approach in clinic can lead to improved survival rates, higher standards of care and cost effective interventions.

“However, evidence is lacking in the optimal configuration and format of the MDT clinic. Consequently, clinics vary in how they are formed and delivered. Optimising the professional configuration and format of the MDT is likely to maximise the benefit of these clinics for people with MND.”

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