Advanced care plan?

[Louisajane27]

We found out 2 weeks ago that ds2 10months has a life limiting neurodevelopmental disorder they susbect aicardi goutiere syndrome. We already have community nurses that visit our home weekly but this week they are coming to start and put in place an advanced care plan? What does this entail? What questions will they ask us? Any advice would be fantastic thank you.

Sorry to hear you are dealing with this. I am no expert but from what I have seen where I work it is all about discussing what support you would like when you need it and where. Eg home or hospice? It is about making your wishes known about all aspects of care

So sorry to hear about your Ds. I work with a few children with advanced care plans. It's basically a communication tool so that everyone who may come into contact with your son knows about him, his condition and medical needs so that you don't have to explain everything every time. It will also discuss your wishes if he became very unwell. Hope this helps, you should have full ownership of the advanced care plan and what you say at one point can be changed at any point. It should be reviewed regularly. I hope you are getting all the support you need at this difficult time.

Thank you both for your advice, it's great to know what to expect so I can prepare a little. Thank you again for all the advice.

There is a leaflet about it on nhs choices website but phone won't let me link.