AN ‘OUTRAGEOUS’ ‘postcode lottery’ that denies people with muscle-wasting conditions NHS access to potentially lifesaving equipment must be changed, says a Stourbridge sufferer who lost his sister to such an illness.

Bryan Gould, 58, from Stourbridge, has oculopharyngeal muscular dystrophy (OPMD), as did his sister Christine, who died in 2014 from complications relating to her condition.

Accepted medical expertise suggests that cough assist machines could aid such conditions – but healthcare chiefs in Birmingham have rejected that notion, although they are now set to review that decision.

Christine, who experienced severe respiratory complications associated with OPMD, resulting in several bouts of pneumonia and several emergency admissions to hospital, never had access to a cough assist machine.

And brother Bryan has been angered by Clinical Commissioning Groups (CCGs) in Birmingham who claim there is a ‘lack of evidence’ of the effectiveness of cough assist machines – a stance that contrasts with neighbouring Walsall.

Mr Gould, co-chair of Muscular Dystrophy UK’s Neuromuscular Network said: “It is outrageous that some patients 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 simple ability to cough effectively can prevent severe chest infections, pneumonia and costly hospital admissions.

“Everyone who needs access to a cough assist machine should have it, but it’s a postcode lottery.

“So many clinicians and respiratory specialists speak positively about the effects, but their views are being rejected, and I feel angry, frustrated and very sad about this.

“I witnessed a loved one go through awful respiratory complications, but she did not receive the help she should have.”

Birmingham and Solihull CCG and Sandwell and West Birmingham CCG recently ran a consultation on the issue, which ended on June 22.

They claim there is a ‘lack of robust clinical evidence’ about cough machines – which is in direct contrast to neighbouring Walsall, which does use the machines.

However, Bobby Ancil, Senior Neuromuscular Outreach Manager at Muscular Dystrophy UK, challenged that decision.

Mr Ancil said: “Cough assist machines improve the quality of life for hundreds of people with muscle-wasting conditions, are recommended by experts, and can prevent emergency hospital admissions, saving significant amounts of money for the NHS.

“All people affected by muscle-wasting conditions should be able to access appropriate respiratory care, regardless of where they happen to live.”

Dr Nick Harding, chair of Sandwell and West Birmingham CCG, said the policy would be reviewed in the light of new evidence, offering a ray of hope to sufferers and their families.

He said: “We sympathise with how desperate patients with this debilitating condition, and their families, feel. I also want to assure them that we are listening to their concerns.

“Cough assist machines are a relatively new treatment and we haven't routinely commissioned them because we felt there was insufficient evidence to prove their effectiveness.

“We are now reviewing that decision. This involves talking to patients and clinicians about their experience and reviewing the latest research. Our decision will be clinically led and based on proven benefits to our patients.”