Message to health, social care workers and government

Many people were grateful for the care they had received during their illness and wished to pass on their thanks to all those who had helped them. They also had important messages that they hoped to convey to doctors, nurses, other health and social care workers and government ministers’

She wishes to thank all those who have helped her.

Age at interview 71

Gender Female

Age at diagnosis 71

View profile

Health professionals

  • Give patients more time, invite them to ask questions
  • Don’t make assumptions: take time to identify patients’ real concerns about their treatment and prognosis
  • Listen carefully to what patients have to say, they know what is happening in their own bodies

Doctors and nurses should recognise that patients in hospital are vulnerable.

Age at interview 75

Gender Female

Age at diagnosis 74

View profile

Health professionals should listen to patients.

Age at interview 50

Gender Female

Age at diagnosis 48

View profile

  • Be honest but tender with people who have terminal illness
  • Don’t treat patients as numbers – look at the whole person
  • Talk to patients in a private, quiet setting
  • Don’t have whispered conversations -patients have a right to know what is happening to them

People feel better if they know what is going on and are included in conversations with…

Age at interview 52

Gender Male

Age at diagnosis 37

View profile

  • Tell patients about the side effects of treatments
  • Pay more attention to nutrition
  • Make positive suggestions if possible
  • Reduce the jargon
  • Continuity of care is important
  • Assume patients are aware of what is happening even if they can’t communicate

Health professionals must assume that even if patients can’t communicate they are aware of what…

Age at interview 49

Gender Female

View profile

  • Offer thorough follow up checks to give patients peace of mind

Continuity of care and thorough follow up checks give patients peace of mind.

Age at interview 68

Gender Female

Age at diagnosis 57

View profile

  • Social services should be better organised.
  • Social care staff need to explain their systems to others (e.g. that patients will need to sign a piece of paper so that agency staff can show they have done the work required)


  • Help is needed to set up support groups
  • Patients need advice about benefits, wills, Advance Decisions and other practical matters

Thinks he should have been given advice about practical matters such as a ‘living will.

Age at interview 53

Gender Male

Age at diagnosis 50

View profile

  • The government should provide money to help user groups concerned with palliative care to work together
  • User involvement must not be tokenistic – they need to make a difference
  • Small changes can make a big difference, e.g. transport to hospitals, drinks being easily accessible in hospital outpatients
  • More hospices are needed for non-cancer patients (see ‘Insufficient hospice care’)

Where people want to die

People often say that they would like to die at home, as long as they are not a burden on the family. '70% of people...

Message to others with a terminal illness

People offered many different types of advice to other patients, based on their experiences at different stages of their illness. People are all different and...