Dorothy Jarvis Lee: Mental health care must put the individual in control

My organisation ubu has spent over the past two decades working with those people who have complex needs, seeking solutions that will enable them to live happily, safely and acceptably within the community.

Those closest to the person involved are often guilty of the worst prejudice as they seek care for vulnerable adults. Families, carers, commissioners and society think they know what vulnerable adults want. Sadly, they often don’t. The person being cared for does.

Research gathered from around the world has helped ubu develop uStep, a model of community health and social care that is now attracting attention from the Department of Health (DoH) because of the improvements it is making to the vulnerable people we support.

It places our consumers very firmly in control of their own lives.

To achieve real improvements, people with mental health diagnoses must be treated in the way that works for them rather than in the way we think they should be.

It is only by doing this that they will achieve real improvements, achieve their life goals, become integrated members of their communities and our society and make a valid contribution.

We now work with every consumer through uStep, helping them as they decide what they would like to become, how they can achieve remaining motivated and not giving up and in what environment that works for them.

They remain in control of their own lives as we provide the enablement health and social care support packages which are unique to each individual.

Ultimately our consumers flourish and thrive, becoming more independent and less dependent on others and on the state. uStep is helping them to break down the behaviours and prejudice they previously suffered as they become integrated into society and not left on the outside.

Many of our consumers have very complex needs. One gentleman came to ubu having been discharged from long-term hospital care. He was fed through what in effect was a large hole in the wall and “lived” in isolation. He had round-the-clock care and was written off by society. His 
care was very intensive and also very expensive for the state.

Faced with prejudice and ostracised by society his quality of life was negligible. ubu worked with him providing high levels of therapeutic support as he decided how he would like to live.

Within weeks, not months, he started to show improvement. He was able to communicate better with his carers, do more for himself, and develop his own life goals.

In hospital, he had six people with him all the time. Moving to ubu he developed so much he reduced his support by half within months. A year later he had reduced it even further. It’s been success all round.

This gentleman is just one example of how ubu uStep Assisted Living has helped improve the lives of those most at risk in society making it safer for everyone. We put him in control of his own life and we followed his lead. By doing this we helped deliver the value premium that benefits the rest of society.

The cost to society is the key part of the equation missing and one which has to be put at the heart of all future policy making. It is almost as though no one wants to say the words.

This debate must focus on the expense of stigmatising people with mental health issues and keeping them on restrictive care and support that doesn’t allow them to flourish.

Society’s prejudice that people with mental health and other disabilities don’t know what is best for them and should not take the decisions that affect them most is patently wrong.

Vulnerable adults do know what they want from life. They have a very clear idea of the kind of life they want. It is society’s responsibility to ensure they are supported as they work towards achieving those ambitions.

Prejudice is caused by fear, a fear of the unknown. We must cast aside our fears and Government must also put in place systems and measures that will allow those with mental health diagnoses to access the care and support they need to achieve their ambitions.

We do it for everyone else so why not for those with complex needs. We’ll all benefit in the long run.

• Dorothy Jarvis Lee is chief executive of Harrogate-based ubu which cares for more than 500 vulnerable adults in the North of England and the Midlands.