How can we truly transform care for people with complex needs?

A woman and man touching via fingers

Ahead of tonight’s Dispatches ‘Under Lock and Key’ programme on Channel 4, I’ve been thinking about where we’ve come with the NHS Transforming Care programme and how much further we still have to go.

It’s now nearly six years since BBC Panorama broke the story of the Winterbourne View scandal and three years since Sir Stephen Bubb’s review on transforming the commissioning of services for people with learning disabilities and/or autism.  Yet still, we are in the situation where there are over 2,500 people with learning disabilities and/or autism currently in inpatient settings, 63% of whom have been there for two or more years¹.

Whilst I don’t deny that for some people, care in an inpatient setting is something they need for their safety and care, for many others this is not the case and something has to change.

Personalised communication

At Sense, we have over 60 years of experience in supporting people with complex needs and are specialists in personalised communication.  We view behaviour that challenges to be a form of communication, and rather than attempting to stop the behaviour we try to find out why the individual is displaying that behaviour.

We know that prevalence of sight and hearing impairment is higher for people with learning disabilities and know from experience that unmet information and communication needs can lead to behaviour that challenges.

I’ve spoken with staff at Sense who have shared their experiences of supporting people with behaviour that challenges, who have been prescribed medication or placed in a secure setting in a bid to manage and control the behaviour.  Staff have worked with and supported these individuals, establishing methods of communication that meet their needs such as objects of reference or other forms of non-verbal communication.  As a result, many of these people are now living in community or supported living settings with little or no medication required and with control over their own lives.

Having heard these examples from colleagues, I can’t help but think of those currently in inpatient settings.  How many of them have an undiagnosed or unmet sensory impairment?  How many of them could have been prevented from being admitted if their needs had been met and how many need to have their transition to community based settings tailored to their sensory impairments? Even if it’s just one person, that’s too many, but I fear there are many more.

So many times I hear the need for a personalised approach to services and people having choice and control over their care.  How can this be achieved for those with sensory impairments and complex needs, if their information and communication needs aren’t met?  The Accessible Information Standard goes a long way to tackle this but it will only be effective if it’s implemented.

What strikes me the most in all of this is that the focus is put on trying to ‘control’ behaviour that challenges.  This isn’t a solution; it’s merely sustaining and deepening the issue.  We need to be truly getting to the heart of what people need and how they communicate it and we need to be doing it now.

Read our report Equal access to healthcare on the importance of accessible healthcare services for people who are deafblind.


Author: Sarah White

Sarah White is the Head of Public Policy and Campaigns at Sense.

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