A guide to getting hospice care

This step-by-step guide will inform you of the different ways of accessing hospice care if you are living at home, in hospital, or caring for someone.

What's next?

Finding out that someone close to you has been given a terminal diagnosis will be a shock. However, it is important to know that you are not alone and our new video highlights two important actions you should take. Our new video highlights what you should do.

I need care and I’m living at home

  1. If you think hospice care support could be helpful for yourself or the person you are caring for, contact your GP or district nurse to discuss your situation.
  2. Ask your GP or district nurse about a referral to your local hospice.
  3. Remember that some hospices can take self-referrals so you may like to contact your hospice directly to ask about their referral process works.
  4. Your doctor will also be able to arrange a health needs assessment to make sure that you have access to the care, support and equipment that you might need.
  5. You may need equipment to make things more comfortable and safe for you. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available urgently - district nurses and hospice teams can advise on these.
  6. Talk to an occupational therapist about what equipment you might need. A physiotherapist or occupational therapist can also help if you have difficulty with your breathing.

I am in hospital

  1. Many hospitals will have access to a palliative care team who can provide advice and support.
  2. Ask your nurse or doctor if you can be referred to the hospital’s palliative care team.
  3. 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.

I am caring for someone living at home

  1. There are likely to be lots of different people involved in the person's care. Some of these will be NHS health and care staff, whilst others may be from separate organisations like social care agencies, hospices, or other charities.
  2. When somebody is at home, often the people most involved in their care will be their family, friends and others who are close to them. Their GP has overall responsibility and district or community nurses are usually involved.
  3. Practical help in caring, such as advice on how to move a person or how to give medication or injections, is really important to help your confidence to care. District nurses or palliative nurses can train you in these tasks.
  4. It might be difficult for the person to get out of bed or stand up, so they might need equipment that will make it more comfortable and safe. There are supplies of equipment such as adjustable beds, commodes or incontinence aids that can be made available urgently - district nurses and hospice teams can advise on these.
  5. Talk to an occupational therapist about what equipment the person needs. A physiotherapist or occupational therapist can also help with the person's breathing.
  6. If you are looking after someone who is living with a life-limiting or terminal illness, you can request a carer’s assessment. A carer’s assessment means you can talk about your situation with the social work team at your local council to see what could be done to make things easier for you. In Northern Ireland the carer’s assessment is made by the local Health and Social Care Trust.

If money or practical issues are a worry, find out if you or the person you are caring for can apply for any benefits or payments. If you are caring for someone, contact your local council to ask for a carer’s assessment. You may be able to get more information from your local Citizens Advice bureau.

I’d like to know more

The organisations and resources listed below can help you find out more about planning for end of life and hospice and palliative care.

Dying Matters

Dying Matters aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. They present useful information on subjects including making plans, writing wills, bereavement, talking to children about death and avoiding misconceptions about dying. All the leaflets are freely available to download and print from their website.

Care for children and young people

Together for Short Lives is a UK-wide charity that speaks out for all children and young people who are expected to have short lives. The Together for Short Lives Charter sets out what families should expect to receive from their local children’s palliative care services in terms of information and support.

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