Biogen Inc. today announced the launch of a free, new, digital self-help tool to help people living with multiple sclerosis (MS) navigate the emotional challenges of life with the disease. The tool, named ACT MySelf, was developed by Biogen in collaboration with people living with MS, the MS Trust, a team of MS specialist nurses and an MS clinical psychologist. The tool has been developed in response to UK research revealing the emotional pressure points experienced by people living with MS, particularly at diagnosis and early in the disease1.
Recent data from the NHS and the MS Trust have also suggested that the number of people living with MS experiencing these emotional pressure points may be increasing2,3. In 2019 alone, the NHS reported a 24.5% rise in anxiety disorders amongst people living with MS3, and a recent survey published by the MS Trust revealed that 72% of people living with MS report that they have felt anxious or depressed for more than several days a month2.
With the rise in anxiety levels among the general population following the COVID-19 lockdown4, and the increased pressure on healthcare professionals during the pandemic, utilisation of self-help digital tools, such as ACT MySelf can help provide additional support to those living with MS, as well as MS nurses, neurologists and mental health services.
“It is deeply concerning that so many people affected by MS are not receiving the emotional support they need. Living with a long-term condition like MS does not only mean facing physical challenges, it can mean overcoming mental challenges too, and we believe it is absolutely vital that the support and information is out there to help people with MS, and loved-ones, who are struggling with their mental health,” said David Martin, Chief Executive at the MS Trust and Vice Chair of the Neurological Alliance.
ACT MySelf guides people through exercises based on Acceptance and Commitment Therapy (ACT), a validated psychological therapy that is used in the management of conditions such as anxiety, depression and pain, and which has been shown to benefit people living with MS5. The tool helps people to learn strategies to live life more in the present, with more focus on what’s important to them and less focus on painful thoughts, feelings and experiences6.
“There is often limited resource within MS services dedicated to psychological or emotional support. We developed the ACT MySelf tool to help address this, as a widely available tool for those who do not require specialist intervention. It’s an easy-to-use resource, incorporating simple exercises that those living with MS may benefit from to help them live a valued life,” said Carolyn Patterson, Clinical Psychologist, Ayrshire Central Hospital, NHS Ayrshire and Arran and one of the experts involved in developing ACT MySelf.
The tool was developed in response to research sponsored by Biogen, which revealed that people with MS in the UK experience feelings of anxiety, fear, confusion and uncertainty around key points in their diagnosis and treatment journey1. The research highlighted that women experience their MS very differently from men, with far more women reporting feeling fear when noticing symptoms or seeing a neurologist. However, men are much more prone to depression in the pre-diagnosis stage, at least three times as much as women1.
“There are now more than 130,000 people living with MS in the UK, and MS nurses, who can be a vital source of emotional support, are facing increased demands on their time,” said Alexandra Handrich, Biogen Vice President, Managing Director UK and Ireland. “We believe that digital tools like ACT MySelf, and the Cleo health and wellbeing app launched in the UK last year, can play an important part in putting support into the hands of people affected by MS where and when they need it.”
1: Biogen Data on File – NPS001
2: MS Trust. People with MS aren’t getting enough mental health support, survey shows. Available at: https://www.mstrust.org.uk/news/people-ms-aren’t-getting-enough-mental-health-support-survey-shows Last accessed: May 2020.
3: Secondary care data is taken from the English Hospital Episode Statistics (HES) database produced by NHS Digital, the new trading name for the Health and Social Care Information Centre (HSCIC). Copyright © 2020, the Health and Social Care Information Centre. Re-used with the permission of the Health and Social Care Information Centre. All rights reserved.
4: Office for National Statistics. Coronavirus (COVID-19) roundup. Available at https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/coronaviruscovid19roundup/2020-03-26#wellbeing Last accessed: May 2020.
5: MS Trust. Acceptance and Commitment Therapy. Available at: https://www.mstrust.org.uk/a-z/acceptance-and-commitment-therapy-act Last accessed: May 2020.
6: Association for Contextual Behavioural Science. ACT for the Public. Available at: https://contextualscience.org/act_for_the_public Last accessed: May 2020.