Muscular Dystrophy UK’s Right to Breathe campaign is fighting to ensure people with neuromuscular conditions, who need cough assist machines, can get access to this equipment, wherever they live in the UK. We are working with NHS Clinical Commissioning Groups (CCGs) to get them to agree to develop and implement policies that will ensure the timely commissioning of these essential devices.
Cough assist machines provide vital respiratory support for some people with muscle-wasting conditions. However, there is a postcode lottery around access and we often hear of families having their requests for cough assists denied by local NHS decision makers.
Kerry Thompson (pictured) has FHL1 Gene Mutation muscular dystrophy and shares her experiences of using cough assist machines below.
Earlier this year I was admitted to Milton Keynes University Hospital after becoming seriously ill with pneumonia and a collapsed lung. It was the first time my condition had deteriorated like this and the effect that this illness had on my ability to breathe was really scary.
During this admission to hospital was the first time I have ever used a cough assist machine. I was amazed at just how much this equipment helped me. I was able to clear my throat and breathe properly for the first time since this bout of illness began.
Without the use of a cough assist machine and the support from the physios in hospital I truly believe that I would have had a much longer admission. Since returning home, I have also continued to use a cough assist machine and believe it plays a vital role in keeping me out of hospital.
I find it difficult to comprehend that there are people with muscle-wasting conditions in other parts of the UK that are denied the opportunity to benefit from using this life-saving equipment.
Muscular Dystrophy UK’s ‘Right To Breathe’ campaign has been created to address the issues highlighted by Kerry to ensure that all people with muscle-wasting conditions have access to high-quality respiratory care.
The campaign aims to:
- ensure all CCGs have an agreed commissioning policy in place for the commissioning of cough assist machines
- ensure all individuals with a neuromuscular condition and respiratory complications have access to a specialist respiratory team
- ensure all individuals who have an NHS provided cough assist machine have an agreed aftercare plan which clearly states who is responsible for the replacement of machine parts if required
To find out more about our ‘Right To Breathe’ campaign and to get involved, contact David Stephenson at firstname.lastname@example.org or on 020 7803 4826.