This step-by-step guide has advice for what you can do when you or someone close to you has been given a terminal diagnosis, and the ways you can access hospice care.
How you might feel
Hearing that an illness cannot be cured can be a shock, and it can be frightening.
It is common to feel lots of different emotions, including numbness, shock, anger, sadness and even denial.
Whether you have a terminal diagnosis or are caring for the person who has, you don’t have to go through this alone as there are people and services available to support you.
What to do next
After receiving a terminal diagnosis, there are two important things you should do next:
- Make an appointment with your GP to find out what support is available. If you are the person with the diagnosis, consider whether you want to take a family member or close friend with you, or would rather go alone. You might be feeling lots of emotions which can make it hard to take information in.
- Make contact with your local hospice to find out what support they can offer. Their staff are specialists in end of life care and will help you understand what you are facing, and suggest appropriate care. Hospice care is free for patients, their carers and family members.
If someone living at home receives a terminal diagnosis
If you think hospice care could be helpful for yourself or the person you are caring for at home, contact a GP or district nurse to discuss your situation and ask if they can refer you to the local hospice:
- In England visit NHS – find a GP
- In Wales visit NHS 111 Wales
- In Scotland visit NHS Inform
- In Northern Ireland visit NI Direct
Some hospices can take self-referrals, so it might be worth contacting them directly to ask about this.
Once you’ve spoken to a doctor or the hospice, the following things will usually happen:
The doctor will arrange a health needs assessment to make sure the right access to care, support and equipment is provided.
Equipment to make things more comfortable and safe might be necessary. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available – ask the GP or nurses about this.
Talk to an occupational therapist about what equipment you might need. A physiotherapist or occupational therapist can also help with things like breathing difficulties.
If someone in hospital receives a terminal diagnosis
Many hospitals have access to a palliative care team who can provide advice and support.
- Ask your nurse or doctor if you can be referred to the hospital’s palliative care team
- The palliative care team can help with a referral to the local hospice so that you can get support from the hospice when you leave the hospital.
What do I do now?
Hearing the news that someone you love, or a friend of yours, has been diagnosed with a life-limiting condition will be a real shock.
This video is intended to help you support them, and find out more about what will happen next. It's important to know that you will not be alone. There is help out there not just to support and care for your loved one, but for you as well.