A mixed method exploration of the impact of COVID 19 on care delivery and experiences of people with Motor Neurone Disease, their family and professional carers

Background
Motor Neurone Disease (MND) impacts on the motor neurons and electrical signals sent to muscles, causing muscles to weaken or stop working. This affects the body in many ways and can impact on all aspects of daily life such as eating, speaking, moving and breathing. Even in normal times, it is a difficult disease with lots of challenges for the person with MND, their friends and family and for health and social care workers. The virus causing the COVID-19 global pandemic was newly discovered in late 2019. Although for most people it causes only a mild illness, for some it is deadly. The experiences and impact of the global pandemic in terms of policy and changes in how care is delivered to people with MND had not been researched before.

The Research
A survey was developed to ask people in the United Kingdom (UK) about their experiences during the first two waves of the COVID-19 pandemic. The survey was advertised on social media and through the MND Association website with a link to more information and the survey questions. Anyone over 16 in the UK with experience of MND during the pandemic was eligible to complete the survey. The survey was open for 7 months (August 2021 to January 2022) and 61 people submitted their answers. These were:
● 23 (37.7%) people with MND, age range 37 to 92 years old
● 20 (32.8%) family members of someone with MND, age range 39-81 years old
● 18 (29.5%) Health and social care workers, age range 34-60 years old

Selected findings
For people who were able to compare the care for MND before the pandemic and during it, care was different and largely perceived as worse. Although most people described general MND care positively, a substantial minority of People with MND (n=7, 30.4%); family carers (n=3, 15.8%) and HSCW (n=3, 16.6%) described it as ‘poor’ or ‘very poor’ during the pandemic. The main areas of concern and problem identified were finance, delays (in terms of diagnosis and equipment provision), communication challenges (including virtual rather than face-to-face meetings), social isolation, and lack of bereavement support.

Conclusion
The COVID-19 pandemic has impacted on the perceptions of care and experiences for people with MND in the UK. For many people getting timely help, communication and social isolation were made worse by the pandemic. Thoughts about the use of virtual, remote communication for meetings with health care providers were mixed as face-to-face was seen as usually better, but it was also commented that because of the practical issues of travelling with MND virtual meetings can be useful when appropriate.

Background
Motor Neurone Disease (MND) impacts on the motor neurons and electrical signals sent to muscles, causing muscles to weaken or stop working. This affects the body in many ways and can impact on all aspects of daily life such as eating, speaking, moving and breathing. Even in normal times, it is a difficult disease with lots of challenges for the person with MND, their friends and family and for health and social care workers. The virus causing the COVID-19 global pandemic was newly discovered in late 2019. Although for most people it causes only a mild illness, for some it is deadly. The experiences and impact of the global pandemic in terms of policy and changes in how care is delivered to people with MND had not been researched before.

The Research
A survey was developed to ask people in the United Kingdom (UK) about their experiences during the first two waves of the COVID-19 pandemic. The survey was advertised on social media and through the MND Association website with a link to more information and the survey questions. Anyone over 16 in the UK with experience of MND during the pandemic was eligible to complete the survey. The survey was open for 7 months (August 2021 to January 2022) and 61 people submitted their answers. These were:
● 23 (37.7%) people with MND, age range 37 to 92 years old
● 20 (32.8%) family members of someone with MND, age range 39-81 years old
● 18 (29.5%) Health and social care workers, age range 34-60 years old

Selected findings
For people who were able to compare the care for MND before the pandemic and during it, care was different and largely perceived as worse. Although most people described general MND care positively, a substantial minority of People with MND (n=7, 30.4%); family carers (n=3, 15.8%) and HSCW (n=3, 16.6%) described it as ‘poor’ or ‘very poor’ during the pandemic. The main areas of concern and problem identified were finance, delays (in terms of diagnosis and equipment provision), communication challenges (including virtual rather than face-to-face meetings), social isolation, and lack of bereavement support.

Conclusion
The COVID-19 pandemic has impacted on the perceptions of care and experiences for people with MND in the UK. For many people getting timely help, communication and social isolation were made worse by the pandemic. Thoughts about the use of virtual, remote communication for meetings with health care providers were mixed as face-to-face was seen as usually better, but it was also commented that because of the practical issues of travelling with MND virtual meetings can be useful when appropriate.