FOLLOWING A BBC South 'Inside Out' programme in October that showed the moment in January 2009 when a nurse switched off a ventilator that led to a disabled man being permanently brain-damaged, film of the incident went 'viral' on the internet.
The victim, Jamie Merrett, a former plumber who was paralysed in a car accident in 2002, received care at his home in Devizes, Wiltshire which was funded by his local primary care trust. Before the 2009 incident Jamie used a ventilator both day and night, but like many who are tetraplegic he lived independently, operated an electric wheelchair on his own, and used a computer.
Media reports painted his personal situation partially in tragic tones. But examples, such as the writer and academic Mike Oliver and BBC radio producer and New Statesman blogger Victoria Brignell, illustrate that tetraplegia itself is not a barrier to a full and varied life.
Rather it is social factors such as access to personal assistance or care workers, accessible housing and transport, high-quality health services and comfortable living conditions that are key. The tragedy of Jamie's situation is that a lack of support was not a factor, but rather the way it was delivered.
Because of his concerns, Jamie had set up a camera above his bed to record how he was being cared for. After his ventilator was switched off, the BBC film showed the nurse and a second care worker panicking as they did not know how to restart it. The nurse tried to manually resuscitate Jamie using an Ambu bag, but failed to connect it to his tracheotomy. 21 minutes later, paramedics restarted the ventilator.
As someone who uses ventilation at night, I am aware of how critical it is that my helpers do not alter the settings on my ventilator. I am fortunate that the health element of my support is delivered through my local authority care package so I am able to use the same personal assistants all the time.
They are therefore familiar with the various pieces of equipment I use, and follow my instructions and respect my approach to personal care matters.
In Jamie Merrett's case, he used agency staff from Ambition 24hours. The assumption is that agency staff have the skills to follow a care plan and use any equipment. The fact that both the nurse and care assistant could not restart the ventilator demonstrates this assumption is wrong. Equipment and personal care routines differ from person to person. Therefore training and shadowing should be carried out first.
But the resources are simply not available to do this for agency based care packages that already cost in excess of £90,000-£100,000 a year.
For many years I have used the British Nursing Agency (BNA) for cover when my personal assistants are on holiday or are sick. Recently I rang my local office to find I was speaking to someone based in South Africa. BNA had been taken over by the A24 Group and its administrative operations merged with Ambition24hours. The local BNA office had closed.
Whilst the South African staff are always friendly and diligent, workers in a local office get to know both their staff and disabled clients over time, and understand which workers are the best match for particular disabled people.
In a globalised world where capitalist companies are looking to cut costs, moving administrative functions abroad to countries where labour costs are much lower makes sense to them. Profit is the bottom line. If this can happen with an agency, it is easy to imagine how the administrative side of local authority social services could go the same way.
Jamie Merritt understood straight away the gravity of his situation and made clicking sounds through his face mask to warn the nurse and care assistant.
For severely disabled people, small mistakes can be catastrophic as the impact on Jamie shows.