Muscular Dystrophy UK calls for NHS bosses to urgently provide lifesaving equipment

Wednesday 27 June, 2018
  • CCGs in Birmingham claim ‘there is a lack of evidence’ on effectiveness of lifesaving cough assist machines – despite substantial expert opinion suggesting otherwise
  • Muscular Dystrophy UK calls for NHS bosses to provide these kits urgently

People with muscle-wasting conditions in Birmingham who need special cough assist machines to avoid life-threatening infections will be denied access to them on the NHS, if a proposed policy by clinical commissioning groups (CCGs) is agreed.

Two-year-old Malani Stewart, from Oldbury, has spinal muscular atrophy (SMA) type two, and would benefit from a cough assist machine – but an application submitted by her expert physiotherapist to Sandwell and West Birmingham CCG was rejected this week. It comes as the CCG, along with its counterpart in Birmingham and Solihull, reviews a policy on the commissioning of the equipment – which save lives by reducing the risk of infection and blocked airways – claiming a ‘lack of robust clinical evidence’, despite substantial expert opinion advocating their use.

In the past six months, Malani has been admitted to hospital six times with respiratory complications, and on three of those occasions she was intubated on a ventilator. Malani, who has a twin sister, Destiny, cannot clear the mucus that builds up in her throat, which causes breathing problems.

Malani’s mum, Nicola Stewart, said:

“Malani has problems breathing because of the build-up of mucus, and as a parent it’s terrible to watch. She has been in and out of a hospital, and this will keep happening until she has access to a cough assist machine. It’s something that I can use at home, and would prevent future trips to hospital.

“I feel disappointed and frustrated. If you need a cough assist machine, you should be able to access one. I don’t understand how Malani can be denied one; I don’t know what you would have to do to qualify.”

Bryan Gould, 58, from Stourbridge, has oculopharyngeal muscular dystrophy (OPMD), and is Co-Chair of Muscular Dystrophy UK’s Neuromuscular Network. Bryan’s sister, Christine, had the same condition and experienced severe respiratory complications and pulmonary aspirations associated with OPMD, resulting in several bouts of pneumonia and several emergency admissions to hospital. Christine passed away in 2014 due to complications with her condition, having never had access to a cough assist machine. Bryan said:

“It is outrageous that some 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 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. They cost £4,500 to buy, and service users or carers can be trained in their use; this seems a small price to pay to drastically improve someone’s quality of life and save the NHS money.

“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 ran a consultation, which ended on Friday 22 June. Leading experts and doctors in the West Midlands have written to NHS decision makers in Birmingham, while the issue has been raised in Parliament by Steve McCabe MP.

The CCGs’ stance contrasts with neighbouring Walsall, where cough assist machines are funded and delivered to patients. Walsall worked with Muscular Dystrophy UK and neuromuscular expert clinicians to create its policy, which the charity recommends all CCGs adopt. Respiratory difficulties are a common feature of muscle-wasting conditions, because of weakness in muscles in the throat, chest wall and diaphragm, which are required to move air in and out of the lungs.

Muscular Dystrophy UK estimates there are 1,727 people living with muscle-wasting conditions in the Birmingham and Solihull and Sandwell and West Birmingham CCG areas. The charity estimates that 18% [1] of those people – or 310 – have a respiratory condition, which a cough assist machine can help with.

A cough assist machine costs about £4,500 – while a week-long stay in an intensive care unit can cost more than £13,000. Muscular Dystrophy UK’s 2015 Right to Breathe report highlighted a study of 39 patients who received respiratory support, including a cough assist machine, at home. Thirty-four hospital admissions were prevented for this group of patients.

Bobby Ancil, Senior Neuromuscular Outreach Manager at Muscular Dystrophy UK, said:

“People living with muscle-wasting conditions should have the best quality of life possible, but when those with complex respiratory needs don’t have access to important equipment, this clearly isn’t the case. 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.

“Muscular Dystrophy UK would strongly encourage all CCGs locally and nationally to follow the example of Walsall by creating a commissioning policy that funds and delivers cough assist machines. All people affected by muscle-wasting conditions should be able to access appropriate respiratory care, regardless of where they happen to live.”

Dr Martin Samuels, a Consultant Respiratory Paediatrician at the University Hospital of North Midlands, has treated children in the area covered by the two Birmingham CCGs. He said:

“As a respiratory paediatrician with an interest in sleep and ventilation, I see a lot of children and young people from across the West Midlands with neuromuscular disease and weakness. The use of MIE (cough assist machines) can reduce hospital admissions, need for intensive care and maintain good respiratory health for years. That is why it is so disappointing that children in Birmingham are being denied this vital piece of equipment.”

[1] Based on Muscular Dystrophy estimates that 70,000 people in the UK have a muscle-wasting condition, and 18% have one that has respiratory effects.

 

For media enquiries, please contact Laura Burge on: 020 7803 2870 or l.burge@musculardystrophyuk.org

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Notes to editors

About cough assist machines

  • A cough assist machine helps to clear secretions from the lungs by helping users with their breathing. It reduces the risk of chest infection and blocked airways.
  • A substantial body of expert neuromuscular opinion and guidelines recommends the use of cough assist machines for patients with muscle-wasting conditions. These include:
    • Airway clearance techniques in neuromuscular disorders: A state of the art review, Touissant (2018 )
    • Diagnosis and management of Duchenne Muscular Dystrophy, part 2: respiratory, cardiac, bone health and orthopaedic management, Birnkrant et al, 2018
    • Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management, the Lancet (2018)
    • Service Specification for Neurosciences: Specialised Neurology (Adult) D04/S/A, NHS England (2013)

About Muscular Dystrophy UK

  • Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions.
  • We offer practical and emotional support for people with a muscle-wasting condition and their families at every stage.
  • We are working to ensure everyone with a muscle-wasting condition has the right specialist NHS support and healthcare, whatever their age and wherever they live
  • We fund world-leading research and won’t stop until we find treatments and cures for all our conditions
  • We help people with all muscle-wasting conditions to improve quality of life, make the most of their independence and ensure every day counts
  • For more information or to help support our work, visit musculardystrophyuk.org or call our free helpline during working hours on 0800 652 6352.

About muscle-wasting conditions

  • More than 70,000 children and adults in the UK have a muscle-wasting condition.
  • Muscle-wasting conditions cause muscles to weaken and waste over time, leading to increasingly severe disability. Some affect the heart and muscles vital for breathing, cutting lives short.
  • Muscle-wasting conditions may be inherited or strike out of the blue.
  • There are currently no effective treatments or cures available, but research to develop potential treatments is showing great promise.

 

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