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Oncology

Preventing a recurrence of poor care

Assistance needed for reassurance of breast cancer fears

Cancer patient suffers chemotherapy overdose

Less than optimum service for a 'terminal' patient

Distressing communication by a radiographer

Assisting a prisoner to access urgent treatment

Delayed diagnosis and poor communication

Knowledge of rights leads to self-advocacy

Assistance with questions prior to specialist appointment

Communication with the family of a terminally ill man

A strong woman feels vulnerable

Maintaining effective communication

When systems fail

 

 

 

Preventing a recurrence of poor care

DHB ~ Urology ~ Right 4 ~ Appropriate Standards ~ Consistent with needs

An advocate was approached by family members who had attempted to address their concerns directly with the hospital,  but were not satisfied with the response. The family felt their father had died in pain as a result of inadequate monitoring and treatment of his cancer. They sought a review of the urologist's practice as they did not want anyone else to be put in a position of unnecessary suffering.

After considering their options, a letter was sent to the hospital outlining their concerns. In addition, they requested a review of their father's case by the urologist's peers, as well as a meeting to discuss this review, with the advocate supporting them.

At the meeting with hospital staff it was acknowledged there had been early diagnostic errors. As a result of the peer review the urologist was on a supervision programme to prevent a similar occurrence.

The family were very pleased to hear this and accepted the acknowledgement and apology from the urologist. They were happy to know that their most important concerns about the serious care issues had been addressed and that steps being taken to prevent this happening to someone else.

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Assistance needed for reassurance of breast cancer fears

DHB ~ Mammogram ~ Breast lump ~ Biopsy ~ MRI ~ Family history ~ Right 5 ~ Effective communication

A consumer contacted the local advocate as she was very concerned about recent results she had received after a mammogram and breast biopsy.  Although the specialist had told her there was nothing to worry about, he had used words she didn't understand. She was too embarrassed to ask any questions and was very worried as she could still feel a painful lump. Following the appointment, she discovered her grandmother had died of breast cancer so this increased her level of concern. She asked the advocate to support her at the next appointment so she could get the answers she needed.
 
At the appointment the specialist told the consumer that although a lump could be felt, the biopsy had revealed it was not cancerous.  The consumer told the specialist about her family history and that she was still worried as the lump was painful. The specialist offered her an MRI scan to rule out any possibility of cancer and to put her at ease. She was pleased she got to ask the questions that she wanted and was very relieved to be having an MRI scan. The consumer told the advocate that she was very grateful for the support as she had felt very overwhelmed by the situation.

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Cancer patient suffers chemotherapy overdose

DHB ~ Oncologist ~ Chemotherapy overdose ~ Right 4 ~ Appropriate standards

The niece of a woman in intensive care telephoned the advocacy service very upset that her aunt had been given ten times the amount of chemotherapy treatment that should have been prescribed. She said that the drug had "burnt all her aunt's insides". The consultant had prescribed 180ml/g of chemotherapy drug, and had not placed the decimal point to make it 18.0ml/g per day for four days.

The pharmacy duly dispensed the drug as prescribed and a specialist nurse administered the treatment. At no point was the dosage questioned or checked with the Consultant even though staff thought the dose was large.

A meeting was arranged to discuss what had occurred. The Consultant and Team Leader of the ward were present. The Consultant was very remorseful in the meeting and apologised sincerely for her mistake. The family accepted her apology but were very concerned about the systems in place to protect consumers.

The Team Leader acknowledged that there had been a breakdown somewhere and that checking points had been put in place to avoid situations like this occurring again. These areas would be regularly revisited and reviewed.

The consumer's condition was critical, but she survived and made a recovery from the overdose. The family were happy with the meeting with the Doctor - her acknowledgement of what had happened as well as her genuine remorse. In addition, they were pleased to hear about the changes the hospital had made towards ensuring better patient safety.

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Less than optimum service for a 'terminal' patient

DHB ~ Oncology ~ Right 4(3) ~ Services consistent with needs ~ Right 6 ~ Fully informed ~ Right 8 ~ Right to support

A man and his partner discussed their concerns about an unsatisfactory hospital experience with an advocate. Earlier in the year the man had been diagnosed with cancer symptoms and was admitted to the hospital oncology ward for further tests. From the ward he was taken to see the oncologist who told him his condition was terminal. At the end of the consultation he was left to wait alone for some time before an orderly arrived to take him back to the ward.

As soon as he arrived in the ward discharge arrangements were underway. He felt his discharge was rushed by the occupational therapists and nurses and heard comments about everyone wanting to get away quickly for the weekend. As he was leaving the ward a staff member from another ward noted his IV cannula was still in-situ.

Although this was eventually removed, he felt his discharge was so rushed that he did not leave with the information he needed. He wasn't told how to access counselling and support services or given any information on follow-up care. Given the nature of his diagnosis he also felt he should have had the opportunity to have a support person at the consultation with the oncologist.

After considering the options he was clear that he wanted his concerns to be addressed to someone who had the authority to act on them to improve the service. He also wanted the information that he should have been given to be put in a handbook for future patients in a similar situation. For these reasons he opted to send a letter to the Director of the Oncology Unit.

Several weeks later he received a reply from the Director of the Unit acknowledging his concerns and an apology. The Director advised that staff were receiving further training as a result of his concerns, and that his suggestions about the information to go in the handbook were being considered.

The man was very satisfied with this outcome and felt his wish to influence the service for future patients had been recognised. He accepted the apology given and the acknowledgement that he had received a far from optimum service.

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Distressing communication by a radiographer

Rights 5 & 6 ~ Effective communication ~ Information ~ Breast cancer ~ Mammogram

A woman who had previously had breast cancer had been given the all clear after fourteen months of medical intervention including a mastectomy and chemotherapy. Once the treatment was completed she was advised to have annual mammograms. After her first annual mammogram and a 15-minute wait she was told it was all clear. She left feeling elated and was very upset to receive a call to her home 30 minutes later saying 'Oops we made a mistake - you need to come back'. The impact of this 'destroyed her world'.

In her conversation with the radiographer the woman was not told why they thought they had made a mistake, nor was she told what the abnormality was or where it had been found. The consumer was sure her cancer was back and felt extremely distressed about this. However, when she returned to the clinic she was told the cause for concern was in the other breast, that is was very small and thought to be a cyst.

The woman spoke with a social worker from the Cancer Society who recommended she contact the Nationwide Health and Disability Advocacy Service which she did. During the meeting with the advocate the woman identified her issues and her desired outcomes, and decided she would send a letter of complaint to the provider and request a meeting. She said she wanted to discuss the casual way she was informed of the mistake, the language used, as well as the lack of empathy and information. The staff at the radiology practice agreed to meet and discuss her concerns. Following the meeting the woman received a letter of apology along with an outline of the changes made by the practice as a result of her complaint.

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Assisting a prisoner to access urgent treatment

DHB ~ Diagnostics ~ Oncology ~ Radiology ~ Right 4(4) ~ Appropriate standards

A prisoner with limited access to phone calls contacted the advocacy service for help (following the suggestion of another health provider). He had been diagnosed with throat cancer a few weeks previously and was very concerned that the hospital kept postponing the urgent specialised scan and surgery from week to week. He had a family history of throat cancer and was alarmed that the lump on the side of his neck had doubled in size in just two weeks.  

After discussing the options available and due to the urgency of his situation, the consumer asked the advocate to phone the hospital on his behalf to see why his appointments kept getting postponed. The Manager of Outpatient Services said she would raise the consumer's referral at the Team Meeting the following morning. The next day she rang the advocate back to say they would be doing both the scan and the surgery the following week. The consumer was extremely happy and relieved to hear this.

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Delayed diagnosis and poor communication

A consumer saw her GP about a lump on her leg, and was sent for a scan. The radiologist advised she may need a biopsy. The GP made a referral to the hospital. However, she was told that as she would not be seen within six months, and her GP arranged for her to be seen privately.

Following the scan, the specialist advised that he thought the lump was harmless but referred her for further tests including an MRI. The MRI confirmed the specialist's diagnosis that the lump was harmless and despite her leg becoming increasingly painful she did not worry. Later the same year she had a routine mammogram and was diagnosed with breast cancer which was operated on two months later.

Her pain in her leg increased as the lump continued to grow. Eighteen months after she had first seen her GP about the lump, she was referred back to the first specialist who had been so reassuring and had another MRI. The consumer then asked her GP to refer her to another specialist who requested an urgent biopsy be done. The lump was found to be cancerous and was removed within a month. While in the hospital she had a chest CT scan.

The consumer read her discharge summary when she got home and discovered there were nodules in her chest and her prognosis was not good.  She had not been given any of this information while in the hospital, or prior to her discharge.

When the consumer spoke with the advocate she was clear she wanted an explanation and an apology for the distress that was caused by her experience and because an incorrect/delayed diagnosis had led to her having a shortened life-span.  She wanted to know how this had happened. She also wanted an apology from the public hospital that had discharged her with no discussion about her situation, leaving her to learn about it from reading the discharge summary.

With the assistance of an advocate a letter was sent to the providers involved in her care and treatment. The hospital responded with an apology in writing and a staff member made contact by phone to discuss the issues. The consumer felt that this issue was resolved and that she had received a genuine apology.

The response letters from the other providers did not answer her questions and as a result she requested the advocate assist her to refer the matter to the Commissioner.

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Knowledge of rights leads to self-advocacy

DHB ~ Public hospital ~ Surgical ~ Oncology ~ Rights 5, 6 and 7

A   60-year-old consumer diagnosed with cancer contacted advocacy for advice as he felt his surgeon was not listening to what he really wanted. The consumer wanted to delay his surgery for two years but the surgeon was in favour of immediate surgical treatment. He was frustrated that the surgeon was always talking about what was clinically best rather than listening to what he wanted, and his reasons for postponing the surgery.

The advocate advised the consumer of his right to be listened to as well as his right to full information on treatment options and to make his own choices. The advocate also informed him about his right to have a support person present.

The consumer contacted the advocate after meeting with the surgeon to say he was very happy with the outcome. The surgeon finally understood his needs and arranged for him to see a specialist to discuss non-surgical treatment options while delaying his surgery.

He said that knowing his rights had helped him during the consultation with the surgeon and he now felt better prepared for future consultations with medical specialists.

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Assistance with questions prior to specialist appointment

Following chemotherapy and radiation on a nasal tumour, a man was advised surgery could not be performed for three months while the swelling subsided. The swelling had not gone down after three months and the consumer was unsure of what was to happen next, and contacted advocacy for support. He advised that he had an appointment later in the week for a CT scan, and an appointment with a specialist.

The advocate spoke to the consumer about his rights under the Code, and the support an advocate could provide. She assisted him to document his questions. The man said he would take his family to his appointment and that he felt confident to ask his questions.

Following the appointment, he advised the advocate that the specialist had provided explanations, answered his questions and discussed his ongoing treatment plan. He felt that his discussion with the advocate prior to the appointment had assisted him to feel empowered enough to get the information he needed.

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Communication with the family of a terminally ill man

The family of a terminally ill man had requested that nursing staff advise them immediately if his condition deteriorated, as they wanted to be with him at his time of death. At 8.10am the family were notified and returned to the hospital, and their father died at 9am. The family were disappointed to later learn that their farther had started to deteriorate at 5.30am and they had not been notified.

They sought advocacy support to raise this issue with the provider.

The provider agreed to meet with them to discuss the issue. An advocate attended to provide support. The provider acknowledged that the situation could have been managed differently, apologised and agreed to review processes and procedures around communicating with families in this type of situation.

The family was satisfied that their concerns had been heard and that the provider had shown a willingness to look at how they could prevent a similar situation occurring.  

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A strong woman feels vulnerable

The daughter of a deceased consumer contacted an advocate as she felt her mother had not received adequate pain relief during her final days. Although she had already written to the hospital she found their response disappointing.

After discussing the situation with the advocate, she decided to write another letter to the hospital with some specific questions she wanted answers to. The most important question was how, as a family, could they have communicated more effectively with the oncologist and helped their Mum communicate with him more effectively regarding her needs and the knowledge of her approaching death.

In her letter the daughter requested a meeting with the oncologist as she felt the unanswered questions were impacting on her work as a nurse. She said that if a meeting was agreed to she would be bringing the local advocate for support.

The oncologist agreed to meet and was very receptive to concerns. She felt his responses to her were open and honest. She was also pleased to hear that he would use this situation as a learning experience with other members of his team.

She found the advocacy support very helpful as although she is usually an empowered person this very personal situation and the initial response from the hospital had left her feeling disempowered and vulnerable.

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Maintaining effective communication

A woman with learning difficulties, whose youngest child was in remission from cancer expressed concern that the relationship between her and the nurse co-ordinator heading the hospital team had deteriorated to an extent that she thought her child's care was being compromised. She sought assistance to resolve her concerns as she recognised that it was imperative to have a good relationship with the hospital team caring for her child.

A meeting was arranged between the parties with the advocate supporting the woman. The woman expressed her concerns about the communication breakdown.

The provider acknowledged that they were aware of the mother's own learning difficulties but had not taken account of this when communicating with her about the care of her child. They offered her additional support.  Following the meeting, the woman felt that the relationship had been sufficiently repaired that the care of her child would not be compromised.

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When systems fail
The niece of a Samoan woman telephoned the advocacy service very upset about her aunt having been given ten times the amount of chemotherapy prescribed. She said the drug had "burnt all her insides". The consultant had prescribed 180ml/g of the chemotherapy drug, failing to put in the decimal point to make it 18.0ml/g per day for four days.

This pharmacy duly dispensed the drug as prescribed and a specialist nurse administered the treatment. At no point was this questioned or checked with the consultant even though staff involved thought the prescribed dose was very large.

A meeting was arranged to discuss what had occurred. The consultant and team leader from the ward were present. At the meeting the consultant was very remorseful and apologised sincerely for her mistake. The family accepted her apology but were very concerned about the lack of adequate systems in place to protect the consumer.

The team leader acknowledged that there had been a breakdown somewhere and that check points had been put in place to avoid situations such as this. She undertook to make sure these areas would be revisited and reviewed.

Although the consumer's condition was critical following this incident, she did recover.

The family was happy with the outcome of the meeting. It was important for them to have the acknowledgement of what had happened and to hear the doctor's remorse. They were also pleased that steps had been taken within the hospital to work towards ensuring patient safety and preventing such an event happening again.

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