Sharing information that is about an adult

Jane Ingram 18/11/19 Dignity Champions forum

Can anyone out there help us!! We work with adults who have learning disabilities and we are having real problems with sharing information that we may hold on them, about their day-to-day lives, with family members in particular. We believe that, as adults, the people we support should be treated as such and that information on them should only be shared on an as needed basis. The starting point for us is often 'if this person did not have a LD - would they be sharing the information?' We do however, find ourselves being increasingly asked for information about our service users that is of an intimate nature and we find this to be in complete contradiction to the way we want to practice when it comes to people's rights and treating them with dignity and respect. We are aware of what the MCA says and have also contracted the ICO - but we are finding that the law is ok, but something that others are not prepared to uphold when needed, sometimes leaving us without support. What do other people do>

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Brendan Whyte 18/11/19

Hello Jane, have you looked at The Caldicott Principles? These may offer you some guidance.

Jan Burns Moderator 18/11/19

Hi Jane I will raise this question on the dignity in action Facebook page. It is a closed group I will not add your name

Jan Burns Moderator 18/11/19

Jane first two responses from f book.
Would it be possible to share an example, which may help people offer an opinion and helpful suggestions. Thanks

From a dignity and moral view as an advocate I will share what I am told I can share by the individual. I would explain to the family that as an adult they have the right to privacy and that unless there is a safeguarding issue I will work in the best interest of the person. If the person has no capacity and there is documentation to prove this then again I would share some information but personal information it’s still a need to know basis. Hope that helps. 😊

Jan Burns Moderator 18/11/19

Next two.
Theres lots of factors to this, one being the previous & current relationship with the person who u may be sharing the information with. Its about working in partnership together, establishing with the person accessing the service who they want involved in their life and what they want sharing but this doesnt mean telling them every little detail there is ways of making people feel involved but not revealing everything. Working with them will help you gain more information about person you care for x

I don't know how many people you support but is it possible to maybe take 5 minutes per person and write up a quick feedback sheet every week. A quick note on emotional wellbeing, physical wellbeing, sociability, challenges, health and any other. Maybe a bit of weekly feedback posted/emailed to the primary contact would ease any worries they have and give them a sense of being fully involved in their care.

Jan Burns Moderator 18/11/19

and another response Jane:
Where I work, we have the confidential daily notes and care plans etc , but we have started to put together project books called “all about me” we work with our residents to gather information about their past, their current lives, where they live, their aspirations and the activities they take part in and any aspirations that are fulfilled, this is their book that is full of things that they want to share with family, friends etc, information they are happy for others to see. They are always accessible to them and These have been used quite regularly since starting them, to show to visitors, bank staff etc, this gives them the control over who sees what about their lives. If something like that isn’t an option, what about some sort of home to family link book where non confidential details about their social activities, the meals they have enjoyed, appointments they have attended etc are communicated to family if permission to do so is given of course. X

Graeme Stark 19/11/19