Muscular Dystrophy UK is calling on Derby and Derbyshire Clinical Commissioning Group (CCG) to rethink its cough assist machines policy, which claims there is not enough evidence to support funding the equipment.
Through our Right to Breathe campaign, we have been working with CCGs to ensure they have an agreed policy in place for the commissioning of cough assist machines But Derby and Derbyshire CCG has introduced a policy which means they won’t be funded.
What is a cough assist machine?
Cough assist machines help to clear secretions for the lungs, and help users with their breathing. They reduce the risk of chest infection and blocked airways.
A cough assist machine typically costs around £4,500 to £5,000 – the same as 48 hours in an intensive care unit. People with muscle-wasting conditions including Duchenne muscular dystrophy, SMA and congenital muscular dystrophy may need one.
What does the policy mean?
Under this policy, funding will not be provided for cough assist machines in Derbyshire.
This means patients will be unable to access this equipment or have to fund it themselves. We know some families who have had to do this because their local commissioners will not provide what they need.
What do we think?
Muscular Dystrophy UK is deeply concerned by this news. We have written to Derby and Derbyshire CCG, calling for the policy to be reviewed.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
Being able to access equipment like a cough assist machine should not depend on where you live. We would strongly urge Derby and Derbyshire CCG to change its policy so cough assist machines are routinely commissioned when there is a clinical need.
With winter approaching, we cannot stress how important it is that those who need a cough assist machine have access to this equipment. Cough assist machines give some people with a muscle-wasting condition a better quality of life. They can reduce hospital admissions and the need for long stays in intensive care, which as well as benefitting the patient can save the NHS money in the longer term.
What do the experts say?
A substantial body of expert neuromuscular opinion and guidelines recommend the use of cough assist machines for some patients with muscle-wasting conditions.
Dr David Thomas, speaking on behalf of the East Midlands Children’s Home Ventilation and Neuromuscular Service, said:
We unequivocally recommend daily use of a cough assist device when children and young people with muscle weakness are no longer able to take a deep enough breath to combine with the action of coughing. Routine measurement of cough strength guides us to intervene at the right time. These devices generate an effective cough and preserve breathing capacity when used regularly, typically twice daily.
And what do families say?
Families in Derbyshire have been in touch to tell us about their experiences of cough assist machines. In many cases, this equipment has helped to prevent emergency admissions to hospital and improve quality of life.
Brothers Steve Kerrison, 25, and Joe Kerrison, 24, have Duchenne muscular dystrophy and use their cough assist machine daily. Their mum, Trish, said:
Steve and Joe haven’t been admitted to hospital since 2015, when they received their cough assist machines. For us, that’s one of the best things about it. If they have a cold, we have the weapons to fight off the potential chest infection. It means that they can continue to live their lives. It is not acceptable for the CCG to see chest infections and hospitalisations as an inevitable part of being in your twenties and having Duchenne muscular dystrophy.
You can read Steve and Joe’s full story here.
Kieron Parkin, 25, also has Duchenne muscular dystrophy and uses his cough assist machine twice a day. His grandparents bought the machine to replace an older one Kieron had been using since 2012. His mum, Raynor, said:
The cough assist machine has helped keep Kieron out of hospital. Without it, he wouldn’t be here now. It has a battery pack, which means he can use it when he goes out, giving him independence. If cough assist machines aren’t funded, it will cost lives.