Joy Duxbury
Terri O'Brien
Helen Ellis
Sue Yates
Kay Sheik
David Pulsford
Mary Matthiesen
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Aims of the carers and patient focus groups
End of Life Care Pathway
Recruitment process
Carers focus groups demographics and discussion
topics
Carers’ groups: emergent themes
Patient focus group sample and emergent themes
Conclusions: Implications of the findings
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To find out family carers and patients
experiences of end of life care
To identify their views on education and
training provision for Health and Social care
staff in End of life care
To identify any gaps and make
recommendations for education and training
requirements
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Focus Group Recruitment Process
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General press release – October 2010
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Press release Cumbria - January 2011
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Invited presentations
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End of life care leads
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Hospice contacts
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Patient/family
carer recruitment
leaflet
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Number of Number People cared for
carers focus of
groups held carers
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15
Mother - 2
Husband - 4
Partner - 1
Father - 2
Father-in-law -1
Daughter - 1
Son - 1
Husband and daughter -1
Mother and father - 2
Range of illness of
people cared for
Dementia - 3
Cancer - 4
COPD -1
Heart failure - 1
MS and diabetes - 1
Brain tumour - 1
Genetic disorder -2
Dementia and Strokes - 1
Stroke - 1
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Age range Carers’ Carers’
of carers ethnicity sex
20 -29 x 1
40- 49 x 5
50- 59 x 4
60 -69 x 3
70 -79 x 1
80 -89 x 1
Past or
present
carers
All white 14 female 10 past
English 1 male
carers
5 current
carers
Geographic area where those
cared for received care
Cumbria - 4
Lancashire - 7
Wirral -1
Lancashire & Manchester - 1
Cumbria, Manchester & Oxford - 1
Leeds - 1
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 Overall experience of care
 Communication skills
 Assessment of the persons needs and
preferences.
 Assessment of the family carers needs
 Advance care planning and preferred
priorities of care
 Care in the last few days of life
 Areas for improved training and education
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Communication difficulties
Lack of clarity about assessment
Coordination of care
Information
Staff attitudes and values
Environment
Symptom control
Training and education
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Importance of feeling listened too
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You were very careful that you picked the right
moment and the right member of staff to approach
with any concerns to feel that you would be
listened to. CarerG3
Written communication between staff
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‘They didn’t know she had dementia, they didn’t
have the notes, they didn’t know she was on the
end of life plan. CarerG1
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Difficulty knowing what help is available, no central
point of information
I’ve found it’s hard to find out what is actually
available ..., there’s no one body to go to,
everybody directs you to a different place, you
spend an awful lot of time and energy trying to just
find out what is out there, ... and you’re very
emotionally upset and you’ve got [their illness] to
cope with, and then finances all start going pear
shaped …. CarerG4.
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If you could have a booklet or a leaflet that
brought all these things together, like
wheelchairs’ CarerG1
I wish I’d known a little bit more about the
Alzheimer’s, ... to have been able to help him
more and understand better. CarerG3
Where to get information, where to get help...
my local hospice was brilliant CarerG2
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End of life care plan wishes ignored
She ended up in hospital because the worker phoned an
ambulance . CarerG1.
Assessment: Initial carer’s assessment, but no follow up
review
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When we first got carers in the social worker was very good
and she said what you can have etc., but they don’t come
back and revise it . CarerG4.
Problems with the assessment process
There needs to be clarity on the expectation of what the
assessment’s about, how we can help you, do you feel you’re
getting the full support, that type of specific focus. CarerG4.
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The district nurse listened but they couldn’t always
put it in place...There wasn’t oxygen [at home] so
he ended up in hospital. CarerG1
Different staff every time, don’t know the patient
very well.
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The day to day carers come from the same agency
but they’re not always the same people. They’ll
have had a briefing ... but some of them don’t
know him. CarerLG4
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Lack of holistic care
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Stop being like a baker in a cake shop
because they don’t see the cakes anymore...
the health professional needs to see the
patient, the person. It’s just personalisation
isn’t it? CarerG1
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Doing a task but not engaging with the patient.
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People should realise that it’s not just washing
their feet and combing their hair, it’s the social
interaction not just care of a person’s body.
CarerG2
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[The nurse] was doing their nails, and all the time
she was either watching the television or talking to
another carer and not talking to the person who’s
nails she was doing. CarerG3
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Going the extra mile
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She will do something which is probably outside
her remit, for instance, when the light bulb went
she went upstairs and found something suitable, a
lamp, and put it in his room, and let us know, ...
which I don’t think the others [carers] would have
done. Carer4.
[A male carer] who used to go and buy razor blades
out of his own money.. ...to shave the fellas, if
there was none. Carer3
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Number
of
patient
focus
groups
held
1
Number
of
patients
Age
range
sex
4
Between 1 male
45 -70
3 female
Type of
Illness
Northwest
Home
address
All in
All live in
advanced Lancashire
stage of
cancer
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Core theme
Sub theme
Communication Use of terminology
Key quotation
‘End of life ‘ too final and ‘shocking’ to some.
Difficult to talk about and come to terms with’
‘Don’t think about EOL, just get on with it’
Lack of communication/
information at diagnosis
‘Left floundering’ at diagnosis’
GPs and consultant
communication- need
more training
‘Poor bedside manner’
‘Got more human as time has gone on’
‘You’ve got to ask the right questions, otherwise
there’s no answer ‘
‘He (consultant) wouldn’t tell me the stage of my
cancer...said I didn’t need to know’
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Core theme
Sub theme
Key quotation
Coordination of care
Problems with Social Services
and coordination across
different areas
‘Everything is in isolation. It all
needs joining up’
Would like to have one key
person to coordinate care
‘You need to know what to ask
for’
Out of hours service patchy
but reassurance badly needed
sometimes during the night
‘ You have to explain
everything again to each
different person’
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Core theme
Sub theme
Key quotation
Training
Help with benefit forms is lacking –
Age UK / Citizens Advice helpful
‘There’s no other support,
nothing about benefits and the
forms are frightening’
Preferred Priorities of Care
document
‘Only heard about it through
another patient’
‘No-one asked me what I
wanted’
GPs communication training.
Need to listen
‘Never enough information’
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Experiences of mixed care by focus group
participants
More work on training and education
particularly for generalist staff
More focus on ‘joined up working’ within, and
between, organisations
Continue to monitor practice to evaluate how
far policy is being implemented
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