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Helping families understand decisions taken by a relative with learning disabilities

Feedback from a relative highlighted the advantages of working closely with families and carers of people with learning disabilities

Feedback from a relative highlighted the advantages of working closely with families and carers of people with learning disabilities


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Working with families can be a challenge, particularly when people have long-term support needs that mean they struggle to function independently and rely on others for help.

However, it is also essential that we as learning disability nurses respect people’s choices, and if they have capacity allow them to make ‘unwise’ decisions.

One experience, and the feedback I received during it, stood out for me and highlighted the importance of trying to engage with families and support them and our service users to have a mutual understanding of issues.

It involved a service user I had worked with for a long time. They have a learning disability and mental health problems. This proud and independent person has never wanted their family to know some of the difficulties they have and the support they need.

Supporting people to make choices

This changed when they had a bad accident and ended up in hospital. The family was understandably concerned, and also raised some issues about the support that had been provided to the person and how they had ended up in this situation.

Relatives rallied round the individual and I got to know one of them well. I engaged with them to help them understand the person’s problems and point of view, and also gave them information about the Mental Capacity Act and how we work within it to support people to understand and make choices.

On discharge the family member remarked to me that they now understood why the person talked about me all the time and that they really appreciated the support that I had provided to them.

This feedback highlighted how I always try to prioritise the person, but it also reinforced to me the importance of working closely with families and carers of people with learning disabilities, identifying sources of conflict and tension, and supporting people to work together to achieve the best outcomes. Thankfully the person recovered well from their accident with no lasting effects.


Marina Russ is an advanced nurse practitioner in a community learning disability service at East London NHS Foundation Trust

 

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