FAQs about myBreathing

Learn about how to get the most from the myBreathing website. Find out who created it, and about the sources of information and research it is based upon.

What’s on myBreathing?

myBreathing has a range of short videos and related text. These come under four main themes, which can be accessed from the menu at the top of every page. You can follow them through in chronological order using the orange ‘next’ and ‘previous’ buttons, or choose any order you like.

How should I 'watch' myBreathing?

The site is very flexible – we suggest watching just a few videos at a sitting, and coming back again later. You may want to watch with your family or carers. Allow time to reflect upon and discuss what you see, and how it relates to you and your life.

Who decided what was included?

myBreathing has been created in collaboration with people living with MND/ALS and their families. They took part in several workshops that were facilitated by web designers and filmmakers.

All the clinical information has been developed with and checked by clinicians who specialise in the care of MND/ALS and related respiratory issues. The content and films have also been reviewed by the MND Association for balance and accuracy.

Who is in the videos?

The films feature people affected by MND/ALS – either people living with it, or their families and carers. Many of these people also took part in the design workshops. They made many of the choices about what was filmed and why. The films also feature clinicians to help give some additional information and context.

Who created myBreathing?

myBreathing is part of wider project called myMND, bringing together different approaches for supporting people living with MND/ALS.

Patient and carer group:
James and Steph Douglas
Julie and Russ Drakeley
Chris and Andrew Horsfield
Trevor Leigh
Mary Mycio
Jude Sellmeyer
Ann and Graham Walker
Phil and Helen Wathall

Additional input from:
Vince and Helen James
Eric and Muriel Swift
Phil Wall

Project lead: SITraN (Sheffield Institute for Translation Neuroscience), University of Sheffield
Clinical input: Sheffield MND Care and Research Centre, Manchester MND Care Centre and the North West Ventilation Unit
Content feedback: MND Association Care Information Team
Additional advice from: Oxford MND Care and Research Centre and St Luke’s Hospice Sheffield

Filmmaking and content: Optical Jukebox
Digital concepting: Ammba Digital
UI design, coding, logos: Design By Glass

With many thanks to everyone who reviewed the site and content.

What information was myBreathing developed from?

Some of myBreathing is based upon research studies about the effectiveness of NIV for MND/ALS. These findings are covered briefly in Why Consider NIV?  You can find a summary of the research in External Resources.

Respected clinical guidelines and sources of care information were also consulted. Clinicians from specialist MND care centres and respiratory centres in the UK were also involved.

Our design group of patients, families and clinicians discussed the research and guidance in relation to their real-life experiences. This helps to make the research findings more accessible to you for day-to-day use.

Where can I find the original information?

A range of research and clinical guidelines were used to guide the development of myBreathing.

You can read a simple summary of the main research evidence around NIV in External Resources.

Research that has informed myBreathing:

Baxter S, Baird W, Thompson S, Bianchi S, et al (2013) The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes. Amyotrophic Lateral Sclerosis and Frontal Degeneration. 14(2):105-110

Baxter, S, Baird W, Thompson S, Bianchi S, et al (2013) The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation. Journal of Palliative Medicine. 16(12):1602-1609

Baxter S, Baird W, Thompson S, Bianchi S, et al (2013) The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitative exploration of family carer and health professional experiences. Palliative Medicine. 27(6):516-523

Baxter S, Johnson M, Clowes M, O’Brien D et al. (2019) Optimizing the noninvasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review. Amyotrophic Lateral Sclerosis and Frontal Degeneration 20(7-8):461-472

Berlowitz D, Howard M, Fiore Jr J, Vander Hoorn S, et al. (2016) Identifying who will benefit from non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease in a clincial cohort. Journal of Neurology, Neurosurgery and Psychiatry. 87:280-286.

Bourke SC, Tomlinson M, Williams TL, et al. (2006) Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: A randomised controlled trial. Lancet Neurology 5(2):140–7.

O’Brien D, Stavroulakis T, Baxter S, Norman P, et al. (2019) The optimisation of non-invasive ventilation in amyotrophic lateral sclerosis: A systematic review. European Respiratory Journal. 54(3):1900261

Clinical guidelines that have informed myBreathing:

Association for Palliative Medicine (2015) Position statement: Withdrawal of ventilatory support at the request of an adult patient with neurological or neuro-muscular disease. Online here.

Association for Palliative Medicine (2015) Withdrawal of ventilatory support at the request of a patient with motor neurone disease: Guidance for professionals. Association for Palliative Medicine for Great Britain and Northern Ireland: Southhampton. Version 1.0

National Institute for Health and Care Excellence (2016) NICE Guideline [NG42] Motor neurone disease: assessment and management. Online here.

Care information for health professionals developed by the MND Association that has informed myBreathing:

MND Association (2015) Motor neurone disease (MND) in acute, urgent and emergency care. Online here.

MND Association (2017) Managing respiratory symptoms in motor neurone disease. Online here.

MND Association (2019) A professionals guide to end of life care in motor neurone disease. Online here.

MND Association (2019) MND respiratory pathway. Online here.

MND Association (2019) Just in case kit for motor neurone disease. Online here.

Plus the MND Association’s care information provided for people living with MND/ALS that are listed in the External Resources section.

How can I get in touch?

If you have any questions or feedback about the myBreathing website please get in touch with the team info@mymnd.org.uk

Please note: for any clinical queries contact your own local care team. We cannot offer any health advice, and do not check the email account daily.