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Self-advocacy

Long wait in accident and emergency

HDC referral to provider

Recovering costs

Self-advocacy following a stroke

Self advocacy with breast cancer

Self advocacy becomes possible with key information

Refund of telephone consultation charge and additional billing fee

Surgical repair of a cleft palate follow up

Achieving successful nutrition via an intravenous line

Great outcomes from self advocacy

Empowered by knowing his Rights

Effective self advocacy in the eye clinic

Support for Self-Advocacy

Revisiting a treatment injury

Self advocacy for ageing parents

Help to ask questions

Empowering other rest home residents through speaking up and self-advocacy

Self advocacy restores mana

Successful self advocacy with resolution skills learned from previous complaints

A mother advocates for her son with advocacy mentoring

Achieving a solution for independence

Empowering Advocacy

Unprofessional ACC Specialist

Knowledge of rights leads to self-advocacy

Support is important for confidence to self advocate

Support to approach a provider with a complaint

Assistance to self advocate

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

 

Long wait in accident and emergency

DHB ~ Right 3 ~ dignity

Following a fall at a rest home a consumer was admitted to hospital with back and hip pain. She was assessed in the emergency department and a decision made to admit her as the rest home did not provide care for immobile patients.

The return trip to the rest home was cancelled and the decision was made to admit her to hospital. While happy with the admission decision the family expressed concern that it had taken 16 hours before she was sent to the medical ward.

The family is very empowered but had advocacy  support   to ensure that they were using the right process to address their concerns. After their discussion with the advocate they were happy to go directly to the provider. 

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HDC referral to provider

A complainant rang the advocacy service and advised that she had complained to the Commissioner on behalf of her baby daughter. She had received a letter advising her complaint had been referred back to the DHB to resolve.

She advised that while willing to meet with the DHB's staff she would prefer to meet them in her own home. The advocate supported her to make her desire known and DHB staff agreed to meet at her home.

She later advised that her meeting was very successful. 

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Recovering costs

A complainant sought assistance to recover costs associated with the transfer of his mother from one DHB to another. He had paid half the cost of the transfer and felt that the DHB should have paid the full cost. He was very clear with the advocate that there were no issues relating to the quality of the care provided.

After discussions with the advocate about the process they would use to assist with resolution the complainant decided he would self advocate. The advocate discussed the type of information he might include if he was to write a letter and also directed him to the HDC website and the link to advocacy where he could get further tips on self advocacy. He was very happy to take up the matter without further support from the Health and Disability Advocacy Service.

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Self-advocacy following a stroke

DHB ~ Right 6 ~ fully informed ~ stroke

A provider suggested a man contact the advocacy service when he became frustrated about the care of his wife who had suffered a stroke and was unable to talk. After discussing the man's concerns the advocate arranged to meet with him and the consumer. 

When the advocate arrived at the ward it was very apparent the consumer was most unwell so the advocacy process was not discussed with her at that stage. The main concern for her husband was that she would have to go into care. The advocate gave him advocacy brochures and her business card and suggested he call if he had any concerns during his wife's recovery. The advocate agreed to visit both of thema week later. 

As agreed, the advocate returned a week later, by which time the consumer was a lot better. However the stroke had left her weak and requiring help with all personal cares. The need for assessment had been discussed and both the consumer and her husband were concerned about what this would mean. The advocate was able to assist them to make contact with a social worker to discuss the assessment process. 

The husband of the consumer contacted the advocate a week later to say the social worker had been of great help and that his wife had been assessed as requiring hospital-level care. He had initially contacted the advocate as he felt that the decisions about her care were a reflection of the care he had previously provided to his wife.

He now understood this was not the case and was happy with the decisions that had been made. He thanked the advocate for her support. 

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Self advocacy with breast cancer

DHB ~ Right 4 ~ appropriate standards ~ Right 5 ~ effective communication ~ Right 6 ~fully informed

A consumer relayed the following story to an advocate.  She had been diagnosed with breast cancer, and had had surgery and now had concerns about "missed opportunities" during her care.  She felt she had not had the opportunity to discuss the pros and cons of predictive tools around her treatment. She said she had done some research about her cancer and treatment options available both in New Zealand and overseas.  After discovering what tests were actually available in New Zealand, she felt the information and knowledge to make an educated choice had not been provided to her, nor was she given any assistance to help her find the  information.

The advocate met with the consumer who wanted to know what her options were about making a complaint.  She felt it was appropriate and fair to initially write to the oncologist involved to raise her concerns and point out what information she had been able to discover herself.  

The consumer kept in touch with the advocate, sending through a draft of her letter and asking for suggestions of how she might improve the letter and what other information she could include.

The oncologist responded in writing outlining what predictive tests were available in New Zealand and what had been proven to be beneficial in trials. The letter went on to say they had taken on board the consumer's concerns and as a result they intended developing an information sheet that defined the status of tests and what is available locally.

The consumer was happy with the impact her complaint had had  - that more information will be made available to women. She intends to start a support group for other women diagnosed with the same type of cancer. She requested the advocacy file be closed.

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Self advocacy becomes possible with key information

Rest home ~ Right 4 ~ appropriate standards ~ self advocacy

A man told an advocate he had been his wife's caregiver for six years following her stroke. She had recently fallen, sustaining a fractured femur.

On discharge from hospital the consumer was transferred to a rest home for rehabilitation as she was unable to weight-bear. She had been assessed as requiring level 5 hospital care. The complainant said he became increasingly concerned as his wife appeared to be losing muscle tone and so he began exercising her limbs which no-one objected to. 

The consumer was later moved to another home where the complainant was advised they had a policy that family members were not permitted to carry out exercise programs on consumers. The complainant was also concerned that the move to the second home meant he had further to travel. He would either like to take the consumer home or for her to be moved to a rest home in an area where he had a daughter and son living and they could visit daily. It would also mean he could stay over a couple of nights a week and not have to travel the long distance home.

Issues:

  • If his wife was unable to go home then why couldn't she be placed in a home nearer her family?
  • He was finding the distance to travel to visit his wife was taking a toll on him.

After considering the options the complainant said he felt able to follow up with his wife's assigned social worker to ask for another assessment by the geriatrician to determine whether it was likely his wife will be able to return home. 

He also said he was capable of discussing a referral to the physiotherapist. 

As a result of the information provided by the advocate and knowing he had family support the complainant decided he would advocate on his wife's behalf without further support from the advocate. He was happy to know he could contact the service to assist if that became necessary.

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Refund of telephone consultation charge and additional billing fee

Self-advocacy ~ Right 6 ~ Fully informed  

A consumer contacted the advocacy service to outline his concerns. A ealth provider had undertaken to phone him on a Friday when test results had been reviewed, to discuss a possible treatment. The provider had given the consumer a prescription but told him not to fill it until the provider had phoned him with the test results.  

It was confirmed in a consultation with both parties that this was the process and that the provider would phone the consumer to advise on treatment. 

When the consumer had heard nothing he phoned the provider late afternoon on the Friday to be told the provider had finished for the day and other staff did not have expertise in advising the consumer what treatment option he needed to take. The consumer had been told there were two possible scenarios and depending on test results a treatment regime that the provider had prescribed, may or may not be appropriate and so the consumer was to do nothing until advised by the provider.  

The provider phoned the consumer the following Monday and the clinical issues were sorted out but the consumer received in the mail the very next day an account for a telephone consultation and a billing fee. No charges for a consultation had been discussed with the consumer at any stage by any staff and the organisation had no past history of charging for such telephone calls. 

When the consumer same in to see the advocate, he had drafted his complaint letter and advised he felt able to do this due to working with advocacy on other complaints through the year.

The advocate made a couple of minor suggestions to add to the letter and typed it up for the consumer to post.  A few days later was delighted to receive a very positive response.

The charge and fee were both withdrawn, an apology for the stress the situation had caused was given, and the matter was placed on the staff meeting agenda to ensure staff were aware of charging policies so such a situation could not occur again.

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Surgical repair of a cleft palate follow up

DHB ~ Right 1 ~ respect ~ Right 4 ~ Appropriate standards ~ Right 6 ~ Fully informed ~ Right 7 ~ Choice & consent ~ Self advocacy

The parents of a 13-month baby girl contacted the advocacy service with concerns about their daughter. She had had a cleft palate operation as a baby and needed further surgery.

The parents asked that the tongue tie be snipped. When this was done the baby's tongue flipped back and blocked her airway. There was a lack of coordination amongst senior staff and the pain was not adequately managed causing the baby to scream.

The following issues were identified:

 

  • the parents were not listened to.
  • the surgeon was under work pressure, the baby was put in danger. The surgeon had been called in after working in another city.
  • Lack of co-ordination amongst staff.
  • Pain was not managed adequately, tongue sewn to lip and clamps applied. This was dangerous practice with the  infant thrashing about. 
  • Given Pamol and Iviprofin until the parents asked for more effective treatment and that the anaesthetist   be called.
  • Had to initiate own process and ask for a social worker.
  • the paediatrician was not called for three days.
  • Inaccurate information was provided to parents who were told intubation couldn't be done at night time in the Intensive Care Unit (ICU) 
  • Parents had to refuse treatment of silver nitrate because they knew it didn't work. This should have been  documented and checked to reveal this had been an issue in the past.

The parents were able to write their own letter covering all the issues listed above. After waiting a considerable period of time, they asked the advocate to phone the Quality & Risk Manager to find out why they had not received a response to their letter.

Resolution was met by self advocacy after discussion with the advocate who would be away at training at the time, and no other advocate was available. 

The parents reported back that the Director of Operations was present at the meeting along with other staff including the surgeon. The meeting went very well and the staff present couldn't believe what had happened. They thought the parents had 'got it wrong'.

The parents had clearly asked for a paediatrician.  It was also beneficial having the surgeon present because he kept the meeting on track and 'real'. The surgeon asked 'how do we decide who has a paediatrician when clearly this child needed one?'

This has resulted in a change of practice within the hospital system which the parents were very happy about.

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Achieving successful nutrition via an intravenous line

DHB ~ Dialysis ~ Right 5 ~ Effective communication ~ Nutrition via an intravenous line

A man phoned an advocate seeking advice about what actions he could take to raise concerns on behalf of his wife who was on dialysis. Prior to each treatment she had been receiving nutrition via an intravenous line. She was recently advised that she would no longer receive this and had not been provided with any alternatives. 

The advocate provided information to the man about the Code of Rights and the role of the advocate and discussed processes that had assisted others in resolving similar situations.

After receiving this information, the complainant elected to write directly  to the provider, so the advocate discussed the format and type of information that would be useful to include in his letter.

The complainant later thanked the advocate for the information and assistance. He and his wife had received a response advising that the nutrition via the intravenous line would be continued. They were both overjoyed at this outcome. 

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Great outcomes from self advocacy

Self advocacy ~ Empowering consumers ~ Mental health

The consumer had called his local advocate over a number of years, mainly about historical concerns which have been investigated relating to mental health treatment. The advocate was always respectful but firm with the consumer about the advocate's boundaries and the role of an advocate.  

The calls continue with the advocate listening respectfully to what has been happening and then reminding the consumer of the education previously provided on self advocacy. They talk through what might be the best way to address issues that the advocate can not be actively involved in providing support with, and the consumer decides the best way to proceed.

The calls are lessening as the consumer is becoming more proficient and reports getting really good outcomes from self advocating. 

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Empowered by knowing his Rights

Dental ~ Dentures ~  Right 4 ~ Appropriate standards ~ Self advocacy

A consumer contacted the advocacy service to outline his concerns about ongoing issues with his dentist, and to discuss options to remedy the situation.  He lived some distance from the advocacy office so support was provided over the telephone.

The advocate suggested various options including taking complaints through formal processes, but urged the consumer to try and deal with the dentist face-to-face if possible, in the first instance.

The consumer told the dentist about his concerns about the sets of dentures the dentist had made that still did not fit. The dentist advised there was nothing more she could do. The situation had gone on for several months and the consumer had become very distressed and had lost weight due to not being able to eat.

The consumer then got a second opinion from another dentist who felt they could make a set to fit well, so the consumer contacted the advocate again with this new information.  The advocate supported the consumer to pass this information on to the original dentist, and the consumer then requested a full refund for the faulty dentures. The consumer was delighted to receive a full refund, enabling them to proceed with a new dentist to get a set of dentures that would fit.

The consumer was able to self-advocate and did this very effectively. The feedback from the consumer was that the information supplied by the advocate had given him the confidence to take the matter up himself directly with the provider. 

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Effective self advocacy in the eye clinic

Private ophthalmologist ~ Right 4 ~ Appropriate standards ~ Right 5 ~ Effective communication ~ Right 6 ~ Fully informed

A consumer contacted the advocacy service because he felt he was not being fully informed about his deteriorating eyesight. He said he knew this because his GP had arranged an urgent appointment on Christmas Eve with another private eye specialist.  That specialist not only treated him appropriately but also gave him information about his condition that the consumer did not know, and that he believed his own specialist should have given him.  The specialist also advised him that he could transfer to the public system as his specialist worked in the public as well as the private system.

After hearing information about his Rights, the role of the advocate and processes used by the service for assisting consumers to address their concerns, the consumer decided to write his own letter. He showed it to the advocate before he sent it. The advocate provided him with suggestions about what he might like to include in his letter that could bring about the result he wanted. 

Two days later the consumer emailed to thank the advocate for the help and support, saying that he had an appointment in the public system with his specialist. Following that appointment he contacted the advocate again to say he had had a good talk with the specialist and as a result understands his condition much more now and is happy to be in the public system.

The consumer was pleased he had resolved his concerns through self-advocacy.

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Support for Self-Advocacy

At a meeting with a consumer it quickly became apparent that she was frustrated with the slow progress of her complaint with a provider.

However, she knew exactly what she wanted and how she was going to go about getting a resolution. The advocate quickly understood that her primary role was to simply affirm the decisions and actions the consumer had already taken and to provide information about her right to a response.

The consumer later advised she had received a letter of apology as well as an explanation from the Doctor. 

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Revisiting a treatment injury

Self advocacy ~ Empowerment ~ Treatment injury ~ ACC

Having previously worked with the advocate, on this occasion the consumer sought the support of the advocate to mentor her through the complaint process.

She had undergone surgery four years earlier which had resulted in a treatment injury which had never been acknowledged by the hospital. As a result she had never received any information from ACC about the possible support available.  By drawing her concerns to the attention of hospital staff she wanted an acknowledgement something had gone wrong during surgery, and for them to consider completing paperwork for an ACC claim.

The advocate talked the consumer through the processes by which she could achieve her desired outcome and the consumer elected to write a letter. The advocate provided a written example of the format advocates use when writing to providers and offered to support the consumer by reading over her letter once she had written it. The consumer was pleased to have this mentoring support from the advocate. 

When the consumer received the provider response the provider not only acknowledged there had been an injury to her during surgery but also informed her they had lodged this with ACC at the time (four years earlier) and provided her with the ACC claim number.

The consumer then approached ACC and enquired as to why she had never been contacted by them about this matter, and requesting they take action on it.  As a result ACC agreed to send the consumer paperwork to claim for a treatment injury lump sum payment.

At the point of closing the complaint with advocacy the consumer acknowledged that ACC may still decline her request for a lump sum payment.  However she advised that no matter what the outcome, she had received information about what had happened to her and felt wonderful for standing up for herself at a time when her life had been quite difficult.

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Self advocacy for ageing parents

DHB ~ NASC Older Person's Service ~ Right 6 ~ Full information

An advocate received a call from a woman who wanted to know how to get information for her aging mother about when she could expect to have surgery. The complainant also said both her parents had deteriorating health conditions and needed support at home. 

The advocate discussed the situation, providing information about who to contact at the DHB with regard to the surgery and also who to contact at the NASC service for older people to enquire whether they would be able to make contact with her parents regarding an assessment for support services.

The caller followed up with these suggestions. She later phoned the advocate back to advise that the quality co-ordinator at the hospital had followed up with regard to her concerns and that her mother now had an approximate date for surgery. The co-ordinator had also made contact with the NASC Older Persons Service with regard to a referral for the elderly couple so an assessment for support needs for them would be occurring shortly.  

The caller thanked the advocate for her assistance.

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Self Advocacy for Ageing Parents
DHB ~ NASC Older Person's Service ~ Right 6 ~ Full Information 
An advocate received a call from a woman who wanted to know how to get information for her aging mother about when she could expect to have surgery. The complainant also said both her parents had deteriorating health conditions and needed support at home. 
 
The advocate discussed the situation, providing information about who to contact at the DHB with regard to the surgery and also who to contact at the NASC service for older people to enquire whether they would be able to make contact with her parents regarding an assessment for support services.
The caller followed up with these suggestions.  She later phoned the advocate back to advise that the Quality Coordinator at the hospital had followed up with regard to her concerns and that her mother now had an approximate date for surgery.  The coordinator had also made contact with the NASC Older Persons Service with regard to a referral for the elderly couple so an assessment for support needs for them would be occurring shortly.  The caller thanked the advocate for her assistance.

 

Help to ask questions

GP ~ Right 5 ~ Effective Communication ~ Self advocacy ~ Practised questions

A consumer said she often left her GP appointments feeling that she had not been listened to and was therefore unable to express her concerns. She contacted an advocate for support to move to another doctor but was aware of the shortage of doctors in the area and knew it would be difficult to enroll with another GP. 

The advocate suggested that she could support her at her next appointment and help her prepare by writing down questions she felt she needed answered.  As the consumer was seeing the GP the following week, they discussed the type of questions she had and practised asking these questions and waiting for the answers.

The advocate didn't hear from the consumer for a few days. Then she rang and told the advocate that she had practised her questions and gone to the appointment on her own. 

For the first time she came away satisfied that she had been heard.  She had been given the opportunity to ask questions about things that were worrying her and had had a really good conversation with her GP.

Self advocacy can really work with practice.

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Empowering other rest home residents through speaking up and self-advocacy

Rest home ~ Right 5 ~ Effective communication ~ Right 6 ~ Fully informed ~ Self advocacy ~ Speaking up

A consumer and his daughter contacted an advocate to discuss concerns about the rest home where the consumer lived. They were happy to take their own action but wanted to discuss the best way to proceed. Both considered the staff to be rude and that they made no effort to communicate changes being made. As well as the poor communication, the residents never had any input into things that affected them. Recent changes had been made to the lounge area so that residents now shared the area with staff, and alterations being done to the showers were taking a very long time.

After discussing with the advocate the options they could take, they both decided to speak with the manager to discuss their concerns. As the issues affected all of the residents it was agreed a meeting would be held the following week to provide an opportunity for all residents and families to raise their concerns. At the meeting the management made a commitment to respond to the following issues:

1. A manager living on site and the conditions
2. The staff using the residents' lounge area for breaks
3. The length of time for the repair and alterations to the showers

As a result of the consumer and his daughter raising their concerns other residents and their families felt empowered to speak up. They are now more aware of their right to address any issues that arise. In addition, everyone agreed that good communication is really important.

A month after the initial discussion with the advocate, the consumer reported back that the management had followed up on all agreed actions and that communication had improved.

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Self advocacy restores mana

District Nurse ~ Dressings ~ Right 1 ~ Respect

A Māori man complained to an advocate that a district nurse had been disrespectful to him. She had failed to show respect before, during and after her completion of dressing wounds on both his legs. After considering the options, the man decided to speak directly to the nurse when she next visited.  

The concerns he intended to address with her included not introducing herself or explaining what she was intending to do. She also spoke to his wife rather than him, and reminded him of an incident that had occurred the previous year. One of the nurses had told him she would not return to his home and that if he continued to criticise the district nurses no one would come and tend to his legs. 

He felt the threat left him in a vulnerable position. While he believed the district nurse may be good at her job, what she said and how she behaved towards him was inexcusable. She was rude, unprofessional and disrespectful to make a threat that other district nurses may not want to deal with him.

He later contacted the advocate to say he had changed his mind about speaking with the nurse and had instead gone to her manager who had suggested he put his concerns in writing.

He was able to do this himself and said it had helped the healing process of restoring the diminished mana and integrity, he and his whānau had experienced.

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Successful self advocacy with resolution skills learned from previous complaints

Self Advocacy ~ Mental health service ~ Right 4  ~ Consistent with needs

For a number of years a consumer had been a regular user of the advocacy service with complaints about her mental health providers. Each time she considered how an advocate could support her. She had used a range of the support options offered including discussions by phone, help to write her letter of complaint, support at a resolution meeting, and support to make a complaint to the Health and Disability Commissioner.

This year when the consumer contacted the advocate she instigated the discussion about the resolution options herself. She was upset at being allocated the very nurse she had complained about to HDC. She believed it was an inappropriate and unsafe situation.

She decided that she would contact the manager of the community health unit to request a different nurse and to explain why. The consumer rang the advocate two days later to say that the manager had agreed that it was inappropriate to have this particular nurse and had made the change she requested.

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A mother advocates for her son with advocacy mentoring

DHB ~ Mental health service ~ Eating disorder ~ Mentoring ~Right 4(3)(5) ~ Consistent with needs ~ Cooperation ~ Right 5 ~ Effective communication

A mother spoke with an advocate about hospital staff not listening to her or her teenage son. The poor communication also happened between key hospital staff involved in his care. She was very upset that this often resulted in unfair loss of privileges for her son who had an eating disorder. She had just attended a meeting with hospital staff and wished to continue "hands-on" advocating for her son, with assistance from the advocate should it be required. She was also keen to get the staff to try newer models of care than the antiquated regime they were using.

The advocate spoke with the mother about her son's right to the provision of services consistent with his needs as well as his right to co-operation amongst hospital personnel involved in his care. After considering the various options, the boy's mother chose to request regular meetings with key hospital staff to ensure better communication between those involved in his care. She was also keen to use these meetings to provide information on a newer, improved model of care.

Telephone mentoring between the mother and advocate provided support for her ongoing efforts which resulted in improved consistency of care and better communication between hospital staff involved in her son's treatment. She was also delighted at their decision to implement a newer model of care.

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Achieving a solution for independence

Rest Home ~ Self advocacy ~ Right 3 ~ Independence and dignity

A rest home resident spoke to an advocate who had just completed an education session for the residents on their rights.

She was unhappy about aspects of her care. Rather than patting them dry, the staff rubbed the lesions on her hands and body. She also felt the staff failed to follow up on things they had agreed to. However, the thing that most upset her was being made to swallow her medication in front of staff as she felt it took away her dignity and independence.

After considering her options the resident opted to address her complaint in writing. by letter, As she was unable to write due to the lesions on her hands the advocate assisted by typing up her letter and returning it to the consumer the following day. Her letter made it clear that she wanted to take her medication in her own time, unsupervised. Once satisfied with the content she decided to hand deliver it to the rest home manager herself.

When the advocate followed up with the resident to see if things had improved she said it had all been sorted and she was now self-medicating.

She was very happy she had been able to address the matter and get the outcome that was most important to her.

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Empowering Advocacy

DHB ~ Surgery ~ Self advocacy ~ Care plan ~ Right 5 ~ Effective communication

The mother of a nine-year-old girl who had undergone 78 facial surgeries wanted to know how to get information from the surgeon about why her daughter's progress has been so slow.

After receiving information from the advocate about the Code of Rights the mother said she felt able to use this information to advocate for her daughter herself. She was taking her daughter to an appointment in two days time. The advocate discussed how she might manage the process including writing down her questions and if unable to ask them, handing them to the surgeon and asking him to respond in writing.

The mother contacted the advocate following the appointment to say it had gone well. The surgeon had answered all her questions. She also received a follow-up care plan for her daughter which she was very grateful for.  She was pleased to have received assistance from the advocate and was confident she could take the same approach again if she needed to.

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Unprofessional ACC Specialist

Right 1 ~ Respect ~ ACC ~ Assessment ~ Self advocacy

A consumer was unhappy that the specialist carrying out an assessment for ACC was not only late for the assessment but had also been insensitive and unprofessional. However, as her major concern was the content of the report she contacted her case manager at ACC. The case manager suggested she see her GP. At this point the consumer contacted the advocacy service as she was new to the region and she felt there hadn't been enough time to establish a good rapport with her new GP.

The advocate clarified her role in relation to complaints about ACC reports, including options for addressing the consumer's concerns about the way she had been treated. She made it clear that the report was not something an advocate could assist with. As the consumer only wanted to challenge the report, the advocate provided her with information about how she could manage this process herself. The consumer was pleased to have the information to self advocate and to know that if she chose to address the specialist's behaviour at a later stage the advocate would be available to support her. 

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Knowledge of rights leads to self-advocacy

DHB ~ Surgery ~ Rights 5, 6, & 7 ~ Effective communication ~ Fully informed ~ Consent

A consumer who had recently been diagnosed with cancer felt his surgeon was not listening to him about his wish to delay having surgery for two years. The surgeon was always talking about what was clinically best for him, insisting he have immediate surgical treatment without any consideration of his reasons to postpone surgery.

The advocate informed him of his rights as well as his options for resolving the complaint. He was particularly interested to learn about the right to be listened to, to receive full information on treatment options and the right to make his own choices and decided to request a meeting with the surgeon.

Following the meeting the consumer contacted the advocate to say he was very happy with the outcome. He said the surgeon now understood his needs and had arranged for a consultation with another specialist so he could consider non-surgical treatment options. The consumer said that knowing his rights had made a big difference. He felt he  had the confidence to deal with any future issues himself.

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Support is important for confidence to self advocate

A consumer had issues with her mental health team after a previous meeting had not gone well. She had written a letter to her psychiatrist and the case manager and was planning to give each of them a copy at her next appointment. She approached the advocacy service to see if an advocate could attend this meeting with her as she was feeling very anxious about it.

The meeting went well and provided a good opportunity for the consumer to read her letter. The doctor acknowledged the previous meeting had not gone well, and stated how helpful the letter was with the consumer's experiences written down.

A full discussion took place with the consumer feeling confident to tell her story and ask questions. The consumer felt the meeting had gone well and was happy and relieved. She was thankful an advocate had been present to give her the confidence to take her own action.

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Support to approach a provider with a complaint

At a meeting with a consumer it quickly became apparent to the advocate that she was frustrated with the slow progress of her complaint with the provider, but she knew exactly what she wanted and how she was going to go about getting a resolution.

The advocate's role was simply to affirm the decisions and actions she had already taken and to provide information about her right to a response. She later advised she had received a letter of apology and explanation from the doctor.

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Assistance to self advocate

A woman approached advocacy to assist her to access a second opinion with neurological services at a large city hospital. She had been trying for some time to do this, without success. She advised she had been discharged from the service without her knowledge. The advocate discussed the advocacy process and assisted her to write to the neurologist who had discharged her.

During her discussion with the advocate she said that she had been uncertain of making a complaint through the advocacy service, as she did not realise it was independent. The consumer advocated well for herself and thanked the advocate for her assistance.

She later advised that the outcome was very good. She received a referral appointment within ten days and would be seeing a neurologist for a second opinion at a hospital nearer her home within a short time frame.

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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.

 

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