COVID-19 Statement and FAQ

There has been considerable anxiety amongst people with neuromuscular conditions about the risks of Covid 19. While there have been anecdotal reports of people developing Covid 19 and recovering, any source of respiratory infection is very concerning for people whose neuromuscular conditions involve any degree of respiratory weakness. Covid Vaccines Advice from Professor Francesco Muntoni, […]

Transport – introducing your options

Public transport Buses Buses are normally expected to be wheelchair accessible nowadays, although rail replacement buses are not. Local buses can be quite narrow, and the wheelchair space can be quite small, but it should exist. Sometimes there can be disagreements about whether a wheelchair user or pushchair have priority in the wheelchair space. Legally […]

Managing Your Care – the basics

There are two main avenues of care funding; Social Services, and Continuing Healthcare. Social services fund care for people whose needs are primarily around nutrition, personal care, dressing, and daily life, whereas Continuing Healthcare (CHC), which is NHS funded, is more for the management of medical conditions. While there are no clear-cut factors that define […]

FAQ’s about ventilation

a photo of a Nippy 3+ ventilator

While we’re currently uploading all our advice resources online, take a look at our pdf guide here:

Wheelchairs, beds and mattresses

photo of a green and black F3-Corpus power chair

Equipment for daily living Wheelchairs The main avenue for provision of wheelchairs is wheelchair services. You can be referred to them by your specialist clinic, GP, physiotherapist, occupational therapist etc. Wheelchair services can carry out full seated positioning assessments and to ensure that your wheelchair provision is comfortable and appropriate. They will often only provide […]

Adaptive Android

A photo of Jamie Hale with dark red hair and glasses in a blue and white shirt at the summer miniconf

Accessibility features on your Android device you might find useful

Getting used to living with a tracheostomy

BOBBY SHEARER sitting outside with his tracheostomy showing

BY BOBBY SHEARER So far my health during my life with Duchenne has been pretty dope. I’ve never had any real problems apart from the obvious. That changed a bit early last year when I had a bad chest infection, where I had to have a trache fitted. A trache (or tracheostomy) is a small […]