We campaign across the UK to bring about change and make a difference to people affected muscle-wasting conditions.

Friday 16 September 2011

Hospitals in focus: health care not health risk

A worrying ignorance of neuromuscular conditions among hospital staff and lack of communication with NHS specialists are having a severely detrimental and long-lasting impact on the lives of patients with neuromuscular conditions, according to a new hard-hitting Muscular Dystrophy Campaign report.

Research carried out by the Muscular Dystrophy Campaign found hospital staff at all levels are risking the lives of the UK's 70,000 patients with muscle disease by failing to seek critical advice from NHS neuromuscular specialists on appropriate treatment.

As the Health and Social Care Bill is being debated in Parliament once again, the Muscular Dystrophy Campaign is calling for the implementation of managed clinical networks for muscular dystrophy and related neuromuscular conditions, enabling better communication between hospital staff and specialists.

The Muscular Dystrophy Campaign's report, Hospitals in focus: health care not health risk, examined hospital visits experienced by nearly 500 patients. It found repeated cases of unacceptable treatment which could have been avoided by doctors taking advice from specialists. Findings included:

• cases of irreparable muscle damage and permanent wheelchair-use through inappropriate treatment
• patients' health put at serious risk by lack of knowledge regarding the use of vital specialist respiratory equipment
• essential medication stopped without consultation with a neuromuscular specialist.

The Muscular Dystrophy Campaign has warned that in cases where patients are admitted to hospital for problems unrelated to their existing condition, doctors should seek advice from neuromuscular specialists to ensure the appropriate treatment is given, rather than assuming a potentially dangerous catch-all approach.

Karon Aldridge from North Yorkshire, following her mother's admission to hospital, reported that vital medication to protect her mother's heart muscles was stopped.

My mother was admitted into hospital in February of this year with a suspected broken knee. Despite both my sister and I telling the staff about her muscular dystrophy, she was kept totally immobilised for weeks and is now unable to walk.

Because of her condition, mum needs heart pills to protect her cardiac muscles. I was horrified to learn that these were stopped without consulting a neuromuscular specialist. They did not consider her needs at all. Every day she was in hospital, her health was at direct risk.

The Summary Care Record is an electronic record which will give healthcare staff faster, easier access to essential information about you, to help provide you with safe treatment when you need care in an emergency or when your GP practice is closed. The Department of Health is gradually introducing Summary Care Records across England.

Health Minister, Simon Burns MP, said:

I am very pleased to support the Muscular Dystrophy Campaign in their drive to improve care for their members and welcome their recognition that the Summary Care Record can play a useful role. Their report has shown just how crucial it can be for a patient's care that clinicians have the right information at the right time, especially when treating conditions they may not see very often.

With the Summary Care Record, patients are very much in the driving seat. They can decide, in discussion with their clinicians, what extra information, over and above core data about medications and allergies, they may want to share with those treating them. This could make all the difference in replicating more widely the examples of good quality care the Muscular Dystrophy Campaign have also highlighted.

Nic Bungay, Director of Care, Support and Campaigns at the Muscular Dystrophy Campaign said:

We've heard appalling accounts from patients about the damaging care that they have received in hospitals simply due to a lack of knowledge about muscle-wasting diseases - information that is only a phone call away by speaking to neuromuscular specialists.

We've seen the enormous difference clinical networks can make to people's experiences of hospital care, with the one existing network in place in the South West improving co-ordination between specialists for patients with these rare conditions.

Our report underlines just why it's important to establish similar networks in the rest of the country. As the NHS is reformed, the opportunity to do so is now. By not taking these necessary steps, the NHS is putting the lives of vulnerable families at risk.

To find out more about the survey and the report, please get in touch:

020 7803 2853

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