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More importantly they point to a clear role for support staff and professionals, that of health detective. Staff have a crucial role to play observing and recording what they see, reflecting on this and finding out what health issues people may have. It doesn't stop there though – we need to identify what we can do to help and find ways to be taken seriously when working with health professionals.
Supporting healthy living is vital – we all need to make friends, keep active, eat and drink well, discuss our feelings, have a break, do things we are good at and have a sense of purpose. As professionals and support staff we need to find ways to support well-being.

As people with CRS grow older it seems that they are more prone to other eye conditions than the general population
It is therefore crucial that everyone with CRS has regular eye checks. For some people these eye checks can be difficult but they are worthwhile for everyone. The key to successful eye checks is to build good relations with the eye clinic and to prepare well.
When a deafblind person receives treatment in hospital they will need support: preparation (such as familiarising them with the room where they will be staying) will make this much easier.
While we can use standard checklists to assess a person with CRS’s behaviour, looking for possible neural impairment, we must always bear in mind the powerful effect of deafblindness itself. So while a person’s changing behaviour may be due to impairments in the brain, it may also be due to the way that deafblindness affects their ability to communicate and understanding of the world.
The incidence of CRS is low enough that many non-specialist health professionals know little about it. This can be enormously frustrating for people with CRS and their families. So we have a duty to learn more, to support better and to listen properly.