Useful information for patients, carers and families
Below are a number of resources that patients or family/carers might find helpful:
When someone is living with a life limiting condition, it can be helpful to plan ahead for a time when you might be less well and approaching the end of your life. This might involve thinking about what you would or wouldn’t want to happen and what is important to you. We call this advanced care planning. We would encourage discussing these wishes with family or carers but also to share this with health professionals involved in your care.
Advanced Care Planning
AtaLoss.org is the UK’s national bereavement signposting website. You can easily find bereavement support services appropriate to your loss and wherever you live in one place, along with practical information, helpful resources and helplines. AtAloss.org also hosts GriefChat- a free web chat service if you would like advice or to ‘talk'. Our service is offered free to anyone bereaved - whatever their age, gender or cultural background - and anyone supporting bereaved people.
At a Loss
We live in a world increasingly reliant on the internet and many of us have virtual lives through social media platforms. However, do you know who owns the data that is held in these platforms? Invariably it is owned by the company that owns the platform.
Do you know what would happen to that data when you die?
If it isn’t owned by you, it can be deleted by the company and your family or loved ones may not be able to have access to it. This may include memories, photographs, messages.
Your identity can also be lucrative for fraudsters after you die, so ensuring your information is held appropriately is important to safeguard against this.
It is therefore becoming increasingly important that we not only plan for our physical end of life, but also plan for our virtual end of life.
The Digital Legacy Association https://digitallegacyassociation.org/ has some useful information to help support you in planning and safeguarding your digital legacies after you die.
Other Local Support
For impartial advice and support on your rights and legal issues for example regarding benefits, housing, work.
There are a number of national disease specific charities with more specific advice on support and treatment.