Transcript The role of Advocacy in ensuring dignity.

Elssa Wheeler- IMCA Operations Manager
Advocacy Matters Ltd Charity No: 1148198 Company No: 07987156 Tel: 0121 321 2377
What is Advocacy
INDEPENDENCE
structurally independent
from statutory organisations
service provider agencies.
The advocacy scheme will
be as free from conflict of
interest as possible
"ADVOCACY
IS TAKING ACTION
TO HELP PEOPLE SAY
WHAT THEY WANT,
EMPOWERMENT
SECURE THEIR RIGHTS,
The advocacy scheme will
REPRESENT THEIR INTERESTS
support self-advocacy and
AND OBTAIN SERVICES THEY
empowerment through its
NEED. ADVOCATES AND
work.
ADVOCACY SCHEMES WORK
EQUAL OPPORTUNITY
IN PARTNERSHIP WITH THE
Recognises the need to
PEOPLE THEY SUPPORT AND
be proactive in tackling
TAKE THEIR SIDE.
all forms of inequality,
ADVOCACY PROMOTES
discrimination and social
exclusion
SOCIAL INCLUSION,
COMPLAINTS
EQUALITY AND
The scheme will enable people
SOCIAL JUSTICE"
who use its services to access
external
independent support to make
or pursue
PUTTING PEOPLE FIRST
The advocacy scheme will ensure
that the wishes and interests
of the people they advocate for
direct advocates’ work.
Advocates should be nonjudgmental and respectful of
peoples' needs, views and
experiences. Advocates will
ensure that information
concerning the people they
advocate for is shared with these
individuals.
ACCESSIBILITY
Advocacy will be provided free of
charge to eligible people.
CONFIDENTIALITY
information known about a
person using the scheme is
confidential to the scheme
and any circumstances under
which confidentiality might
be breached will be in policy
Action for Advocacy
Non Instructed Advocacy: Human
Rights based approach
‘You could think about my rights (which are the
same as yours!) and make sure I get what I am
entitled to, that I’m safe and that my rights as a
citizen and user of health and social care
services are upheld. If you think something is
happening in my life which breaks a law or
infringes my rights you may need to get legal
advice or representation’.
Andy Bradley Action for Advocacy 2008
Non Instructed Advocacy: The
Watching Brief
You could think about the quality of my life and
think about how changes or decisions about my
life will affect me. You can ask questions of
powerful people who are making decisions
about me to make them really think about the
decision from my point of view – this keeps me
at the centre of the decision.
Andy Bradley Action for Advocacy 2008 Brief developed by Assist Staffordshire
The eight domains to a quality life
Domain
Definition
Focus
Avoidance
Competence
to have a level of skill to
be able to be as
independent as
possible
learning and developing
skills which lead to a
greater independence
or allow minimal
support dependence
and inactivity
having to rely on
others, not taking risks
or allowing people to
do things by themselves
Community
Presence
having a sense of
belonging to a local
area by means of access
and use
encourage a high
frequency of use and
involvement in local
public facilities and
amenities
using segregated
services or not using
local facilities enough
Continuity
having a past, present
and future with key
people and events in
your life
meaningful
relationships which last
over time planning out
your life's hopes and
ambitions
stagnation and loss no
past and no future, only
the present
Choice and influence being able to determine self determination,
the course of events,
looking at situations
from your perspective
self advocacy, asking
your own decisions and
choices because you
want to
domination over
protection,
no involvement in the
way your life is directed
The eight domains to a quality life
Domain
Definition
Focus
Avoidance
individuality
a unique person in your
own right
individual needs and
wishes, support that is
responsive to individual
demands
grouping and labelling
status and respect
having value in the eyes raising others
of others
expectations and the
removal of social
stigma and prejudice
not placing value on a
person by degrading
them by age, culture or
activity
partnership and
relationships
having meaningful
interaction with other
people
valuing interaction and
friendship, promoting
social networks
having no one in your
life who is important,
only associating with
other devalued people
well-being
having a state of
physical, psychological
and social health
to maintain a balance
between all health
needs,
to promote health
accepting illness and
disability, not securing
appropriate health
support and treatment
Dressed in others
clothes, not always the
right gender.
Not allowed a sexual relationship with a partner
Talked about
as if not
Dirty soiled clothes
there in a
Left with food on face or
derogatory
clothes after feeding.
No bath wash or shower
manner
Inadequate Personal Care
Left in distress when
needing assistance with
toileting etc, requests
ignored.
Dignity Issues?
Belongings not valued or seen as
important- photo’s etc
Shared rooms, no
privacy
Women left with facial
hair
Hair left un brushed and
untidy.
Placed in incontinence
pads when not in continent
for the ease of others.
No individuality, becoming
objectified
Death in hospital
No visits to hair
dressers/ barbers
when this is important
to the person
Food and drink left out
of reach
No meaningful activity
No access to finances, no appointee/
deputy. Cannot buy toiletries, clothes
engage in activity.
Never going out of the care home or
residential.
Given food that is
disliked or does not
reach an
individuals cultural/
religious needs
Not given time to eat,
rushed.
Coercion
Lack of culturally sensitive
support
Funding
Post Code Lottery- no older
adults advocacy
Language barriers
Barriers?
Staffing issues
Venues
Attitudes
Family disputes
Lack of privacy- no
where confidential to
speak
Internal politics
Lack of knowledge about
the role of an advocate
Fear of sharing information or
lack of knowledge on when to
share
Advocacy Story
Arthur a gentleman in his 80’s who had become aphasic following a stroke
and been in a stroke rehab unit for some months.
Arthur was physically mobile; he had been assessed to lack capacity for
deciding where he should live on discharge from hospital. Prior to admission
he lived in his own home with his wife and had adult children all living away
from home.
Whilst attending a Multi-Disciplinary Team Meeting one of the professionals
involved (Staff Nurse level) voiced her personal knowledge of Arthur as she
stated one of her children had been at school with his child and that Arthur
was “not a very nice person” and that he was not well liked by his children
and had not treated them well. She also made a further comment with the
implication that due to this fact he did not ‘deserve’ to be funded by the NHS
nor to get Continuing Health Care funding (which was under discussion).
I wrote to the CHC Manager requesting that an Assessor was appointed who
was independent of the Hospital this gentlemen was placed in and had no
working relationship with any of the staff there.
Advocacy Story
Frank described how on the night of an operation he was crying out in pain all
night but “no one came” and how this had “suddenly changed” the next
morning but he couldn’t understand why. He had then overheard one of the
nursing staff say “This man has been extremely ill and needs to be taken care
of”.
Apparently both of his nephrostomy bags burst or leaked that night. Frank
told me the next day that he had called over one of the nursing staff when he
felt something wet which he described as “blood and urine” mixed
together. He told me the Nurse came up to him and said harshly “Oh what
have you done? You’ve pulled them off – why have you done that?!”. He said
she then went off and left him for a long time and no one came.
I placed a complaint into the NHS the CEO of this Hospital about Frank’s
treatment and the lack of dignity afforded him. However this was only after
he was discharged as he was scared of being treated badly by the ward staff if
they knew he had complained about them.
Advocacy Story
Brian is a man in his late 70’s who had inoperable bowel cancer. I reported an
incident that Brian had told me whereby he urgently needed to open his bowels.
He called out repeatedly for help he said and no one came (which he has
reported has happened on a number of occasions) and finally had no choice but
to resort to doing it in a tissue at the side of the bed. He then had to keep
calling till a nurse finally came and said (something to the effect of) “Ugh what
have you done now” before putting on gloves to remove the tissue and
contents.
A Best Interest decision was taken by that Consultant for Brian to have no
further treatment, which had also been his stated wish. However, without
warning or consultation with myself or his wife, I arrived at the Hospital a few
days later to find that a new Consultant (who we had no prior contact) had
apparently overruled this decision and ‘persuaded’ Brian to have further
procedures.
Brian is now lying in a hospital bed virtually unable to do anything for himself,
his dignity is in shreds and he faces and long, prolonged and uncomfortable
death which – I feel – is the result of all the unnecessary cascade of
interventions he has been made subject to which when he was able to state he
did not want.
IMCA Story Mr. X
Case: Accommodation decision for client in Hospital with no home to be
discharged to, Social Worker had commented on how client was ‘obsessed’
with getting access to money or belongings and therefore ‘refused’ to discuss
anything else:
Mr X was very concerned when meeting the IMCA at the fact he had no
money and no possessions – and was very worried about how he was going
to get any. It may be quite understandable that he would be preoccupied
with this when meeting anyone that he thinks may be able to help him sort
this concern out. Mr X does need to be provided with items of clothing such
as trousers, shirt, socks, slippers, underwear etc and any toiletries that are
not normally provided such as soap, toothbrush etc as his Dignity is
seriously compromised by a lack of these and without the means to
purchase them. Also – he needs to be provided with practical assistance
and advice as to how he can sort out his financial situation either with
accessing his money or processing a benefits claim.
IMCA Story Mr. Y
Case: Accommodation decision for elderly client with dementia in
intermediate care regarding whether he should return home or go to
placement:
There is note in the Care Plan regarding the Deprivation of Liberty
authorisation for Mr Y “Under DOLS staff can remove Mr Y’s mobile phone
from him if it is felt the callers are causing distress to him. This needs to be
documented in his notes as to the reasoning for this”. However, a
subsequent entry in the file notes the next day states “Prompted Mr Y to
give his phone to me, I explained it was important to turn phone off,
because I had great concern that his phone was not working correctly, Mr Y
handed the mobile phone over without any problems. Both phone and
charger in the safe for security”. This does not appear to accord with the
documented condition under which Mr Y’s phone can be removed. There is
no documented reason regarding an incident of callers causing distress to
Mr Y. There is no documented note of a telephone call being received by Mr
Y and leading to the removal of his phone.
IMCA Story Mr. Y Cont..
The power to remove his phone under certain, specifically stated
circumstances should not be taken as an automatic right to do so with no
stated reason. There also appears to have been no true explanation given
to Mr Y with regards to its removal. Mr Y’s dignity and his right to be given
a full and truthful explanation of what is happening to him and why should
be at the centre of all actions taken. If Mr Y’s phone is removed (with good
reason) then in addition to the reasons behind its removal being fully
documented it would be good practice to set a date to review this action
and consider returning it to him. If Mr Y asks where his phone is he should
also be given a true explanation of its whereabouts and the reason for this.
IMCA Story Mrs. K
Case: Accommodation decision for elderly lady with dementia moving from
own home to potential placement and currently in Hospital.
Mrs K should be placed in accommodation that is of a no lesser standard
than her own home that she has been accustomed to living in – including
considerations such as the standard of décor, cleanliness and environment,
furnishing and general upkeep. There is no evidence to indicate that Mrs K
would have wished to occupy a shared room – unless it was with someone
she knew and chose to share with. Therefore single occupancy should be
sought as it could compromise Mrs K’s privacy, dignity and choice to be
placed in close proximity to share a bedroom with a person that is a
stranger to her. As the information gathered indicates that Mrs K previously
expressed a wish to have “her own things around her” then arrangements
would need to be put in place for her to take some of her belongings and
possibly some of the smaller items of her furniture with her to a care
home. It might also help her to become orientated more quickly in a new
environment if her own room contains items familiar or meaningful to her.
IMCA Story Mr. M
• Case: Accommodation decision for client in Hospital with no home to be
discharged to, Social Worker had commented on how client was
‘obsessed’ with getting access to money or belongings and therefore
‘refused’ to discuss anything else:
• Mr M was very concerned when meeting the IMCA at the fact he had no
money and no possessions – and was very worried about how he was
going to get any. It may be quite understandable that he would be
preoccupied with this when meeting anyone that he thinks may be able
to help him sort this concern out. Mr M does need to be provided with
items of clothing such as trousers, shirt, socks, slippers, underwear etc
and any toiletries that are not normally provided such as soap,
toothbrush etc as his Dignity is seriously compromised by a lack of these
and without the means to purchase them. Also – he needs to be
provided with practical assistance and advice as to how he can sort out
his financial situation either with accessing his money or processing a
benefits claim.
IMCA Story Mrs. C
Accommodation decision from own home shared with long term
friend/lodger to possible placement – client had previously had radiotherapy
on her scalp that had left scarring on her head which apparently she was very
self conscious about. Mrs X’s friend/lodger, Mr Y, advised of this fact when
talking to him on the phone and he emphasised how important it was to her
that her hair was combed over to cover this up and also advised that he had
told Hospital staff this on more than one occasion but there was nothing
recorded on her notes/file regarding this. During course of involvement it
was discovered client was dying and was not able to go home at all.
Mrs X’s personal dignity requirements also need to be met by ensuring
details that were important to her such as combing her hair as she would
wish it to be combed (to cover the scars on her scalp) and ensuring matters
of personal grooming – such as cutting her toenails are attended to in a
timely manner. Again Mr Y should be fully consulted in any care plans made
in this area as he has a long standing knowledge of Mrs X’s values and
beliefs.