People in the West Midlands denied life-saving breathing equipment

Published Date
04/06/2018
Author
Alexa Follen
Category
None
Bryan Gould 260815-64

We’re calling on NHS commissioners in the West Midlands to provide life-saving cough assist machines to people with muscle-wasting conditions.

Birmingham and Solihull CCG (Clinical Commissioning Group) & Sandwell and West Birmingham CCG are reviewing their policy on cough assists, which could result in patients being denied this vital piece of equipment.

The CCGs’ current position is that there is a lack of evidence that cough assist machines are clinically effective. This is simply not the case. A substantial body of neuromuscular expert opinion and guidelines recommend these machines for people with muscle-wasting conditions, including NHS England’s 2013 specialised neurology service specification.

Bryan Gould is Co-Chair of the West Midlands Neuromuscular Network and has oculopharyngeal muscular dystrophy (OPMD). He writes:

It is outrageous that patients in the West Midlands can’t access life-saving cough assist machines. Every person with a muscle-wasting condition who needs this equipment shouldn’t have to struggle to get it. NHS commissioners in Birmingham need to act now so no more lives are put at risk.”

The review of cough assist machine policy in Birmingham follows our 2015 Right to Breathe report  which found that the West Midlands was one of the worst areas in the UK for cough assist machine provision. Families were being repeatedly turned down for respiratory equipment by local commissioners and this is continuing to happen in much of the region. However, in some areas there has been progress. After the publication of our report we worked with Walsall CCG in the West Midlands to ensure cough assist machines were provided to people who needed them. Now NHS commissioners in Birmingham and across the West Midlands need to follow their example by ensuring their patients can assess life-saving respiratory support.

Join our campaign!

Make your views known by attending our patient consultation event at Birmingham Heartlands Hospital on Birmingham and Solihull CCG & Sandwell and West Birmingham CCG’s cough assist machine policy from 2pm-4pm on Tuesday 19th June 2018. Details on how to register are here.

If you can’t attend this then the CCGs are also holding wider consultation events, which will be looking at a range of policies including cough assist machines. Details here.

You can also tweet Birmingham and Solihull CCG (@NHSBSolCCG) & Sandwell and West Birmingham CCG (@SWBCCG) to let them know your views.

Suggested tweet: I urge @NHSBSolCCG and @SWBCCG to ensure all people with #neuromuscular conditions who need #CoughAssist machines can access this life-saving equipment

Their consultation ends on Friday 22nd June 2018 so we need to act now!

For more information, please contact David Stephenson on d.stephenson@musculardystrophyuk.org or call 020 7803 4826.

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