All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.
Article 1 in the Universal Declaration for Human Rights addresses the issue of dignity. But what is dignity for a spinal cord injured person?
We estimate that around 25,000 people with spinal cord injury receive some form of care or support to meet their health and social care needs.
People with higher level spinal cord injuries often receive 24 hour care, seven days a week to help with day to day tasks as well as fulfil medical needs. Having someone there to turn you over in bed, to get you out of bed, provide bowel and bladder care is very intrusive.
What helps is when people’s preferences are listened to. Often these relationships can work well when people actively engage, interact and, as strange as it sounds… be human.
A respondent to our care survey told us, “the carers I have are fantastic, and I think of them as friends and equals. The social services team my Council are brilliant and so are the rehab team at my hospital who had the first contact with the social workers.”
Some on the other hand have a personal preference to have their personal assistants come in, do the job and leave. Personal assistants, district nurses and carers need to be mindful of the need to listen to the person they are caring for.
Even when undergoing assessments for disability benefits or social care provision assessors are seeking minute details on people’s lives. Often this is beyond what is actually relevant to the support being assessed for.
When it comes to personalised social care, what people spend their direct payments on is heavily monitored by some local authorities. Of course they have a duty to account for money that they are spending on care packages, but some of systems for reporting information are far too invasive and intrusive. Some local authorities still insist on receiving paper copies of every penny people spend with their direct payments, making the whole process bureaucratic and burdensome at the same time.
People deserve the right to be treated with dignity and local authorities and health commissioners need to be mindful of the feelings of the person being cared for too when carrying their duties. Regular training to care agency staff to instil a culture where the person’s wishes are always at the forefront of staffs’ minds would go a long way to ensure people are helped with greater dignity.