Priority 18 from the Advanced Heart Failure PSP

UNCERTAINTY: How do people get support to continue as their heart failure becomes more advanced? (JLA PSP Priority 18)
Overall ranking	18
JLA question ID	0098/18
Explanatory note	No significant evidence for people with advanced heart failure - more about access to services which is likely to variable across different geographical regions
Evidence	No systematic reviews on this topic in past five years
Health Research Classification System category	Cardiovascular

Extra information provided by this PSP
Original uncertainty examples	Patients with heart failure usually have lots of experiences of hospital admission that has helped so when they become 'end of life' it is harder for them to see that hospital admission would not help and in some cases when they have been told this it turns out to be wrong. We have a more distinct pathway for cancer patients and I would like it to be looked at differently and more training around the differences to support us looking after end stage heart failure patients. ~ I think that HF patients get support and help in the early stages but can seem to me to be abandoned ~ Post diagnosis review by consultants should be as meaningful as possible. I sometimes felt I was given pills and told to come back in six months. .
Submitted by	1 x patient, 1 x health professional

Extra information provided by this PSP

Original uncertainty examples

Patients with heart failure usually have lots of experiences of hospital admission that has helped so when they become 'end of life' it is harder for them to see that hospital admission would not help and in some cases when they have been told this it turns out to be wrong. We have a more distinct pathway for cancer patients and I would like it to be looked at differently and more training around the differences to support us looking after end stage heart failure patients. ~ I think that HF patients get support and help in the early stages but can seem to me to be abandoned ~ Post diagnosis review by consultants should be as meaningful as possible. I sometimes felt I was given pills and told to come back in six months. .

Submitted by

1 x patient, 1 x health professional

PSP information
PSP unique ID	0098
PSP name	Advanced Heart Failure
Total number of uncertainties identified by this PSP.	65 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	13 February 2019