In February 2015, Muscular Dystrophy UK published Right to Breathe, a report which found that a third of families are being repeatedly turned down for respiratory equipment by local NHS commissioners. Despite respiratory infections being a primary factor in deaths for some types of muscle-wasting condition, adults and children across the country routinely struggle to access the equipment they need at the time that they need it.
Costing in the region of £5,000 – equivalent to a 48-hours stay in an intensive care unit – cough assist machines are considered vital by respiratory specialists and are routinely used during hospital appointments. However we know that some families have had to go online and pay themselves for second-hand equipment because their local commissioners will not provide what they need.
We have worked with Walsall Clinical Commissioning Group (CCG) to create a cough assist commissioning policy which we have recommended all CCGs in the country adopt. We know that some CCGs now have a policy that makes clear that their organisation will fun and deliver cough assist machines to patients in thier area, but we are also aware that many more still don’t have a formalised policy.
Our campaign centres around:
- Ensuring that all CCGs have an agreed commissioning policy in place for the commissioning of cough assist machines
- Ensuring that all individuals with a neuromuscular condition and respiratory complications have access to a specialist respiratory team
- Ensuring that 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.
Emma Parkes whose son Freddie (pictured) died from a chest infection said:
“While Freddie waited for a cough assist machine to be provided he started to develop a chest infection and generally felt unwell. Between us as a family we called his doctors and respiratory consultant and anyone else we could think of asking why he had not got a cough assist machine yet.
We were finally told it would be ordered, but by this point though Freddie had really deteriorated and from the end of October he barely left his bed as he was struggling to breathe and was using his bipap machine almost constantly just to keep him comfortable as his breathing was so bad.”
- Our West Midlands Neuromuscular Network is now organising a regional respiratory event for health professionals and NHS commisisoners to be held in early 2018.
- We will be surveying all the CCGs in the country asking for their current policy on commissioning cough assist machines for both adults and children
- We will continue to raise awareness and campaign on this critical issue through links in Parliament, NHS England, CCGs and the media
We want to hear about your experiences of getting a cough assist machine. If you’ve got a machine, whether the experience was good or bad please get in touch with David Stephenson on firstname.lastname@example.org or on 020 7803 4826.