“Children and adults at risk from failure of heart and lung checks”

Muscular Dystrophy CampaignVulnerable patients with fatal cardiac and respiratory problems are not receiving regular heart and lung checks, risking early death, according to a report published this week.

The study by the national charity the Muscular Dystrophy Campaign, reveals that people with severe, life-limiting muscle-wasting conditions with potentially fatal cardiac and respiratory problems are going years between appointments with consultants, with some being told to “go home, we can do nothing for you” by senior medical staff, and even falling out of the NHS system entirely, resulting in costly emergency hospital admissions.

The Muscular Dystrophy Campaign’s patients’ report, State of the Nation, published yesterday (31 Jan), collated the experiences of 600 patients. It also found that:

  • one in five patients said their GP had offered inaccurate advice in the past year; with 45 percent of patients saying that their GP did not understand their condition well enough to plan local care
  • more than one-third of patients had their condition misdiagnosed, with almost 20 percent waiting five years or longer for an accurate diagnosis
  • patients are concerned that GPs, soon to become gatekeepers to vital local services beyond April 2013, lack the specialist knowledge needed to link them to life-saving care
  • more than a quarter of respondents were forced to wait longer than a year to see a specialist consultant – with some forced to wait several years.

Breathing and cardiac difficulties can often affect individuals with muscular dystrophy and related conditions. Cardiac and respiratory management plays a critical role in detecting and treating the deterioration of the heart and lungs, which can accompany the progression of the condition. As this can happen silently, both need to be monitored and treated without delay.

The report also reveals how millions of pounds are being wasted when people are admitted to hospitals as an emergency – a situation that would be preventable if specialist care were provided. A clinical audit of hospital admissions revealed* that around 40 percent of emergency admissions could be prevented if patients were able to access expert teams, specialist physiotherapy and vital medical equipment. This could save the NHS over £32 million per year.

Professor Michael Hanna, Consultant Neurologist, at Queen Square, London, said: “This data indicates that a significant proportion of emergency admissions could have been avoided. Neuromuscular conditions are progressive and it is crucial that patients receive ongoing input from a co-ordinated multidisciplinary team of specialist health professionals to manage changing symptoms, to reduce complications and to provide expert advice on equipment and treatments.”

Dawn Thornton from Sale, has an 11-year-old son, Jason, who has Duchenne muscular dystrophy, an incurable condition which almost always affects boys and causes muscles throughout the body, to weaken and waste over time. Lung and heart problems are the most common causes of death for young men with this condition. Dawn has become desperately concerned over her son’s lack of cardiac monitoring.
“Jason has now had to wait over 20 months for a routine heart check-up, which should at least happen on an annual basis. We are desperately concerned about my son’s heart, given that he is getting to the age where there is a high risk of complications surfacing. Every time he tells me that his chest hurts, I worry is his heart ok? I do not want to have to wait for my son to get the point where he has to be admitted to hospital for his case to get noticed. If there are problems, we want to know about them sooner rather than later. Boys and men with Duchenne may live only to their teens or well into their forties, depending on what care and support are available to them. I feel as though my son has been left in the lurch, despite my best efforts to push for an appointment to be set in stone.”

Mike Brown, 59, from Bolton-le-Sands has facioscapulohumeral muscular dystrophy (FSH) a condition that causes weakening of the facial, shoulder blade and upper arm muscles, leading to increasing disability. He said: “My experience of local health care has been a shambles. Eight years ago I was admitted to casualty with a serious chest infection, where it was discovered that my right lung wasn’t working and I only had two thirds of my left lung functioning. Shortly after this ordeal I saw a consultant, who told me that my lung function was fine and that there were people in the waiting room with only ten percent lung capacity and there was ‘no need to see me again.’

Four months ago, after a year of arm twisting and with the help of the charity’s advocacy service I eventually got a referral. All the specialist did was to run through my history – he was well aware of respiratory problems – and yet he showed no interest in checking whether my lungs had deteriorated further, or to establish the root of the problem. I am in severe pain from my neck downwards and have had to push for pain relief and management through my local GP. It wasn’t something that was offered as a matter of course. I have given any hope of getting help.”
The Muscular Dystrophy Campaign is now calling for:

  • clinicians and the NHS to ensure children and adults with severe muscle-wasting conditions, who have associated respiratory and cardiac issues, should have their heart and lungs checked regularly at a muscle centre or a clinic that has appropriate expertise from a specialist multi-disciplinary team
  • the NHS to ensure a faster diagnosis for both adults and children with symptoms of a muscle-wasting condition, with families supported by specialist, multi-disciplinary teams of health professionals accessible within their local area
  • GP-led Clinical Commissioning Groups to work with specialist neuromuscular clinicians, regional NHS leaders and people affected by these conditions to ensure that (a) the warning signs are picked up sooner and (b) appropriate care and support arrangements are in place locally
  • recognition by the NHS that investment in specialist care can dramatically reduce unplanned admissions and save money, by keeping people out of hospital
  • new guidelines on neuromuscular services set to be published by the NHS on the treatment and care of people with these conditions to be implemented as soon as possible.

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said: “For these vulnerable patients, this could be a matter of life or death. We have heard of too many patients, children and adults alike, diagnosed with debilitating, life-shortening conditions that are going without heart and lung checks.

“Not all patients may be aware that they have underlying cardiac and respiratory problems, and so it is essential that these are routinely monitored and managed so that any changes are flagged to health professionals and treated with immediate effect.

“There are still alarming gaps in specialist care and support for those with neuromuscular conditions across the UK. The NHS needs to recognise that investment in these services cannot only dramatically reduce emergency admissions but save the NHS money, by keeping people out of hospital.”

To find out more about the Muscular Dystrophy Campaign and their work, head to www.muscular-dystrophy.org

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