Personalisation is driving the transformation of adult social care and increasing the health service also. Sam Newman, explores one relatively untouched area; the sector's complex use of language.

Vocabulary used in the sector is largely professionally dominated; words are targeted at the understanding of the professional rather than the person needing support.

Often over medicalised, the language tends to be extremely confusing for many trying to find their way through the system. It creates barriers and many report difficulty in being able to navigate the world of health and social care. It often indicates a negative attitude towards people's needs, rather than a positive.

It is focused on what people can't do rather than supporting peoples potential. For some this has become an experience that is disrespectful and rude as it focuses on dependence, passivity and an assumption that the ‘system' knows best.
There is an assumption of incompetence once someone needs support to get on with their lives.

A hundred years ago people were ‘patients', ‘cripples', ‘idiots'; cruel words later replaced with ‘client', ‘service user' or just ‘user' that still describe people as a function of the system rather than a person in their own right.

These words clearly tell a story where the power is with the professional rather than the individual requiring support. This is where cultural change and transformation is urgently needed.

There is nothing that is sacrosanct. The word ‘care,' suggesting dependence and being controlled needs to be replaced with the concept of 'support' to live life independently. People (not service users, customers, clients) need to feel that they are in control of their support, and therefore are self-determining the kind of life they lead.

Rosemary Berks, service co-ordinator at Darlington Association on Disability, commented: ‘We are not people with disabilities. We are disabled people disabled by an unequal society. Language is something I feel very strongly about and something that at times can be very powerful and therefore, should not be underestimated.

‘We don't have "special needs". We have the same needs as everyone else. We are people who require support to live our lives – not help or care but "support".

‘Although appropriate terminology is key for a better future, more importantly it is about being equal and removing barriers to inclusion'

A personal approach

A new relationship must be established with people who require support. Through co-production we can have a revolution led by the experts i.e. people and their families.

The first step is for health and social care professionals to understand they have something to learn. Then through collaboration and good listening we can build respect, and trust. Creating a new language will be a positive step forward for the sector and as a result, people will be more likely to receive the right support and experience a better quality of life.

Ms Berks continues: ‘Individuals are too quick to assume and issue labels. Labels are for jam jars, not for people.
‘I am not a case study or "phys dis" (physically disabled) nor am I physically challenged – I am an individual with mobility, visual and cognitive impairments. What do I want to be called? Rosemary, thank you.'

‘Empowerment' or acknowledging where the power rightly lies?

A more constructive and respectful language built on citizenship and rights is the foundation of a much better relationship between people and the systems that administer resources and support. We have sometimes called that ‘empowerment'.
But pause for thought for a moment; did we ever have the right to take power away and then generously give it back? Changing language is about acknowledging that people have the right to determine their support and their lives. People working in ‘caring' professions joined as caring, helpful and kind individuals.

Now it is time for the sector to offer tools to equip its workforce and design a language that reflects their respect and values that brought them into the job.

The voice of the individuals seeking support is the most important element of designing a new language in the health and social care sector.

Sam Newman is personalisation programme director at OLM Group