Challenge Newsletter Spring 2017: Checking Up on Health

Vivien Cooper, CEO of the Challenging Behaviour Foundation, introduces the Spring 2017 Newsletter, 'Checking Up on Health'.

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A photo of CBF CEO Viv Cooper

Health Hope and Happiness

If you ask people what is important, most will say they want to be happy, and they want good health. Our mental and physical health impacts on everything we do - and of course this applies to people with learning disabilities too. The difference is often they are not able to tell us in words how they feel, and so we have a responsbility to find other ways to make sure people with learning disabilities have the same opportunities for good health as we do. We know there are huge health inequalities and we have to make the system work much better. There are many ways this is starting to happen - from having learning disability liaison nurses in hospitals, to regular health checks, and more accessible health screening processes which provide hope for improvement. 

But there is still some way to go. And it is not straightforward. We know there is a strong link between physical health and behaviour - if a new challenging behaviour emerges, it is essential to get a physical health check to rule out a physical cause. Increased headbanging may be due to an ear infection, or toothache. Increased aggressive behaviour may be due to pain. Equally, a person may not be "their usual self". My son is subdued (as opposed to quite lively!) when unwell - and there can be assumptions made by health professionals: "Well he is sitting there quite calmly so he is probably OK" - when the reality is if he was OK there is no way he would be sitting still! Regular health checks, including dental checks, can reveal otherwise "hidden" issues. A recent routine dental check under general anaesthetic revealed my son had an abscess and severe infection - he would have been in a lot of pain and yet we were completely unaware. 

At the CBF, many families who contact us describe cocktails of medication their relatives have ben prescribed, often with no significant benefit and with serious side-effects. There remains a medicalisation of behaviour - despite the NICE guidance clearly stating to "consider antipsychotic medication to manage behavour... only if psychological or other interventions alone do not produce change within an agreed time, treatment for any coexisting mental or physical health problem has not led to a reduction in the behviour, or the risk to the person or others is very severe...".

A recent CBF survey of family carer's experiences on the use of medication revealed families needed accessible, timely and practical information about medication - potential benefits and disadvantages - as well as alternative approaches to medication. Often the medication was prescribed to address a symptom (living with people they didn't get on with, or being awake at night when there were no night staff) rather than addressing the underlying issue. 

The recent Dispatches programme showed the stark contrast of the wrong kind of support in inpatient institutionalised services - and the life changing difference that the right support delivers. There is welcome talk of being "outcome focused" and it was clear from the documentary that having your basic human rights met (including health needs, and social and emotional needs) results in a fairly fundamental outcome - feeling happy. Children, young people and adults with learning disabilities who display behaviour described as challenging have the same rights as the rest of us to health, hope and happiness. 

Vivien Cooper OBE

Chief Executive and Founder of the Challenging Behaviour Foundation


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