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11th December 2013

Are you sure you’re sure?

Are you sure you're sureSupporting people with learning disabilities who do not communicate verbally or who have multiple sensory needs presents a real challenge when it comes to their involvement in the care process.

There are many groups of service users who respond well to being consulted about their care and who can clearly make choices as to how support is given. But what about those whose capacity to give consent is not clear? The regulations require us to ensure that consent is based on an understanding of the choices and consequences of those choices, and to provide opportunities for people to change or stop care if they choose to. Human rights must be protected. This is indeed a noble sentiment but there are two points in the content of Outcome 2 that provide a potential loophole.

Able and Valid 

CQC state that consent should be sought and gained for service users ‘where they are able’ and that the consent should be ‘valid’. These caveats could potentially exclude many profoundly disabled people, if their level of understanding was in question but for the existence of advocacy services and the provisions under the Mental Capacity Act for ‘best interest’ decision making. We have a responsibility to ensure that service users have access to these support mechanisms and that we record their use as part of our evidence of gaining consent.

Where service users appear not able to comprehend information about their care, the use of independent advocates or ‘best interest’ meetings can be useful. But before we rush into either of these options, I feel we must revisit our assumption that informed consent is not a possibility.

Consider potential

The Mental Capacity Act says before we look to ‘best interest’ methods, all practicable steps must first be taken to assist people to make decisions. We should establish the understanding of the person using a variety of means and involving people who know them very well. A service provider I know have begun to use ‘Talking Mats’ to increase service users capacity to make choices and share feelings about the things that are important to them. These are communication tools devised by speech and language therapists that use symbols and pictures to represent ideas and choices, allowing the service user to position these on a special mat in line with their importance and relevance to their feelings.

Using alternative and augmentative communication to gain and confirm consent demonstrates to CQC that you are sensitive to the potential of your user group. It says that you do not default automatically to legal process, but consider the individuals in your care on their own merit.

QCS provides a policy on consent relating to medical treatment, the content covers some of the potential pitfalls and steps to be taken to maintain rights and respect. Consider the ways you can explore capability and capacity to allow real participation of service users in their care.

Ginny Tyler – QCS Learning Disability " href="" target="_new" data-tooltip="Learning disabilities have an impact on a service user’s everyday life, which in turns places specific demands on providers of care who specialise in services that offer support to those with learning disabilities.  Everything from arranging a visit to a shop, to going on a bus, to meeting someone new, can for some be a profoundly difficult undertaking, so appropriately qualified care providers are on hand to offer their expertise and guidance to make the lives of their service users that much more simpler and enjoyable.<br /><br />Learning disabilities are a broad spectrum and include Down’s Syndrome, Autism, Aspergers Syndrome, Fragile X Syndrome and many more.  It is distinct from learning difficulties, such as dyslexia, which do not impact upon intellect.  With the right care and management people with learning disabilities can still lead normal lives. Profound and Multiple Learning Disabilities (PMLD) present even greater challenges to the care service, but there are many services throughout the UK equipped to deal with even the most significant of learning disabilities.">Learning Disability Expert Contributor

Sarah Riley

Senior Customer Care Executive

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