A family
feels pressured to withdraw life support
Confidence to
address concerns
Support to
self-advocate
The importance of using easy-read
language
Self advocacy: dealing with
cuts to services
Dental complaint:
self-advocacy
Being properly
informed
Information
provides options for self-advocacy
A family
feels pressured to withdraw life support
DHB staff gave a family seven days to make the decision to
withdraw dialysis treatment from their mother. The family felt
pressured as it appeared the hospital had already decided to
withdraw treatment. They felt that the situation had been
mismanaged and that they had not been treated appropriately, and
contacted advocacy for assistance
The advocate outlined their options and offered to contact the
DHB customer services office to arrange a meeting so they could
express how they felt. The family felt they had sufficient
information on their options and would contact the advocate if they
required further assistance.
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Confidence to address
concerns
A consumer felt she was not being listened to by her GP, and
thought this was because her health was very complex and the GP was
trying to brush her off.
After explaining her concerns to an advocate, and speaking about
the options available, the consumer decided to write a letter to
the GP. The consumer said that with the information she had
received from the advocate, she did not feel a need for the
advocate to support her at the meeting.
The consumer revealed she had almost died from blood poisoning
after an operation. The advocate advised her she could make a
complaint if she wished, and also gave her information about
accessing her medical file.
The consumer later said that with more knowledge about her
rights she had felt empowered to address her concerns with a nurse
at the Practice, and was able to speak with more confidence about
accessing her notes, getting an explanation about her condition and
to say when she felt she was not being listened to.
The consumer was very happy with the support and information
gained as a result of her contact with the advocate.
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Support to
self-advocate
A consumer in hospital contacted an advocate expressing concern
about the behaviour of people visiting another patient. She felt
intimidated by the attitude of the visitors toward her. She advised
that the nurses had not taken any action about her concerns as the
person being visited was very unwell.
The advocate discussed the options available including taking
her concerns direct to the provider. After further discussion about
how this might be managed, the consumer advised she would request
to speak with the Charge Nurse and voice her concerns, following
which she would let the advocate know if she required further
support.
Following her discussions with the Charge Nurse, the consumer
phoned back and advised her discussion had gone well and the Charge
Nurse had taken action to rectify the situation. The consumer said
she was happy she had been able to resolve her concerns quickly and
that it was the guidance and information she had received from the
advocate which had made her feel confident to self advocate.
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The importance
of using easy-read language
A consumer with concerns she wished to address to a hospital,
decided to self advocate and wrote to the hospital with her
concerns. However, she contacted the local advocate after receiving
a response from the DHB which she did not understand due to her
literacy level. The letter contained words such as "insufficient",
"designated", "disrespectful" and "expedite". None of these words
had any meaning for the consumer who thought the provider was
"speaking another English".
With the consumer's permission the advocate phoned the Complaint
Facilitator advising her that the consumer did not understand the
response due to the language used, requesting a letter be sent to
the consumer using words she could understand. The Complaint
Facilitator requested the concerns be put in writing. This was done
and the consumer received a response to that letter, again using
words she did not understand.
The consumer's concerns were then brought to the attention of
the Advocacy Team Manager who regularly networks with the DHB
Complaint Facilitator. The Team Manager raised the concern with the
Complaint Facilitator at their meeting and together they were able
to look at the use of easy read language for all consumers.
The consumer who initially raised the concern received a
response which contained information she understood, and the DHB
has altered the language they use in their letters.
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Self advocacy: dealing with cuts to
services
A consumer living in a provincial area was given a caregiver she
wasn't happy with after a number of services and 'drop in centres'
in the area experienced major changes as a result of amalgamations
and complete funding withdrawals or cuts.
She said that when she felt like giving up she remembered what
the advocate had said about her rights and went about acting on her
own behalf.
This proved to be very successful. She now has a key worker she
knows and feels this person really suits her personality. She is
happy to be listened to, and to have good support for maintaining
her stability.
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Dental Complaint -
Self Advocacy
A consumer complained about services provided by a dental
surgeon. He had paid for crowns which had fallen off a number of
times over a period of five months. When the consumer had raised
the issue with the dentist he had been told he would need to pay an
additional fee.
The advocate explained the Code of Rights and how the advocate
could support the consumer. The consumer advised he had a good
relationship with the dentist and felt able to manage the situation
himself. He just wanted information about the options and the
process.
The consumer said he wanted to meet the dentist so the advocate
discussed how he might manage the meeting.
The consumer contacted the advocate following the meeting and
advised that the parties had reached agreement. The
treatment/repairs were to be carried out at no cost to the
consumer. He was very happy with this outcome and thanked the
advocate for the help she had given him to manage the process
himself.
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Being properly
informed
Information ~ Medication ~ Side
effects ~ Second opinion
A woman contacted the local advocate after being thwarted in her
attempts to get information about the side effects of a drug
prescribed by her doctor. Her doctor had been monitoring her blood
pressure for a while and on this occasion as it was still high, he
urged her to start taking anti-hypertensive treatment. Although the
doctor provided her with the name of the drug he was less
forthcoming about the side effects. He told her she would know if
she got them and that she should return if she did. She requested
the details of the side effects from the pharmacy who advised it
was not their normal practice to provide that information.
The consumer was so alarmed at not being able to get the
information and discussed her rights and options with the advocate.
She decided to seek a second opinion from a specialist and
contacted her doctor's nurse to organise a referral letter.
Within an hour her doctor phoned her, having recognised her
distress. He requested to meet with her later the same day. She
reported back to the advocate that the meeting had gone well, she
had received the information she needed, as well as an apology for
the distress caused and the doctor would support her to obtain a
second opinion.
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Information provides
options for self-advocacy
Cancer surgery
~ Public hospital ~ Oncology ~ Information ~ Effective
communication
A woman phoned the local advocate,
worried about her friend's husband who appeared to have been
forgotten following exploratory surgery for cancer. The
hospital had not made any contact and he was feeling worse with
increasing pain as they waited to hear back from the oncology
Service.
The advocate described how advocacy
could help, and encouraged the caller to suggest to her friend that
she phone the hospital directly and ask what was happening.
If her friend was unhappy with the response she could contact the
advocate for further help.
A month later the consumer's wife
called to say she had taken up the suggestion and phoned the
hospital directly. The Registrar she spoke with organised a
bone scan immediately and also arranged for the local General
Practitioner to make morphine available to help control the bone
pain.
She thanked the advocate for the
information given to her friend as following the phone call to the
hospital everything seemed to fall into place and her husband
finally got the treatment he needed.