Group providers : Disability Services Provider
Rights : 4(4)

Names have been removed to protect privacy. Identifying letters are assigned in alphabetical order and bear no relationship to the person’s actual name.

Introduction

This report discusses the care provided to the late Mr B by a supported living services provider. The concerns raised by Mr B’s parents, Mrs and Mr A, are that the provider and individual staff members did not monitor and care for Mr B adequately and did not manage his Prader-Willi syndrome[1] (PWS), which led to a weight increase of approximately 20kg; in addition, the provider failed to recognise early warning signs of illness in the days before Mr B’s hospitalisation, which led to his untimely death.
Mr B was admitted to the local public hospital on 27 May 2023 with diabetic ketoacidosis (DKA) resulting in rapid blood-sugar spikes. On 30 May 2023, Mr B deteriorated and developed multi-organ failure and later passed away due to DKA complicating intra-abdominal sepsis.[2] It was established through the post-mortem examination that the DKA appeared to have been triggered by an infection, which in turn appeared to have been caused by Mr B ingesting an item that had perforated his gastrointestinal tract.
I extend my sincere condolences to Mr B’s whānau for their very sad loss.

Background

At the time of the events, Mr B was in his early twenties. In addition to PWS, Mr B had been diagnosed with autism spectrum disorder (ASD),[3] mild intellectual disability, mental health issues including anxiety and impulse control disorder (ICD),[4] low testosterone, and gastroparesis.[5] Mr B was seen by his general practitioner (GP) on a three-monthly schedule for general health checks and had been assessed as being pre-diabetic. In addition, Mr B was seen by an endocrinologist on a yearly basis, as well as by a psychiatrist six monthly for a review of his mental health status.
In November 2022 Mr B was sentenced under the compulsory care framework and on 9 November 2022 he moved to the provider’s accredited residential unit. Previously, Mr B had lived with his parents and two siblings.

The provider’s response

According to the provider, Mr B was cared for by support workers who were employed by the provider and by staff who were provided through contracted temporary staffing agencies. The support workers supported Mr B in accordance with his primary plan (personal plan) and specialist care plan and with his day-to-day needs to manage household tasks such as cleaning, laundry, and shopping for food and household supplies. Mr B received specialist healthcare services and primary medical care support in accordance with his personal plans, and access to these services was facilitated by the provider. In addition, the provider advised that Mr B was supported to manage his food intake actively and in having healthy meals that aligned with his dietary requirements (due to his diagnosis of PWS), and he was weighed regularly, and records were maintained. The provider stated that Mr B was a specialist care resident, and, as such, he was not permitted to leave the premises at will, but he had regular approved leave to support both his physical health and emotional wellbeing.
The provider noted that for several months prior to the events it had ongoing issues with recruitment and retention, specifically for its specialist supported accommodation services. Consequently, it suffered severe staff shortages of support workers and leadership staff. The provider took several steps to try to support recruitment, and it also alerted Whaikaha to this issue.
I note that recruitment and retention has been an ongoing issue experienced across the sector, which has been acknowledged by Whaikaha.

Overall care of Mr B[6]

The provider stated:

‘Having reviewed the [overall] care that was provided to Mr B, we are comfortable that he was receiving appropriate services that aligned with the requirements set out in his [specialist care plan] and that met our contractual obligations under our agreement with Whaikaha.’

Events as they occurred on 27 May 2024

According to the provider, Mr B went about his day as usual except that he declined to attend an outing at around 11.30am. At handover (3pm), staff were advised that Mr B had spent most of the day in his room. Staff member A recollected that Mr B had been unwell during the day, but the provider noted that this was not staff member B’s recollection.
At around 4 to 4.30pm, Mr B called out to the afternoon staff and stated that he was ‘dizzy and thirsty’. Together with the security guard, the staff member gave Mr B a glass of sugar-free cordial and a glass of water. The staff member stated that Mr B said that he had felt sick since breakfast and that the morning staff did not check on him, and he had had nothing to eat since breakfast (which is in contrast to a statement by the other staff member, who advised that Mr B had had lunch). The staff member stated that at around 4.30 to 5pm he prepared Weet-Bix softened with milk, as Mr B had said that he did not think that he ‘could eat solid food’. The staff member stayed whilst Mr B ate, and the staff member prepared an additional portion of Weet-Bix, cordial, and water, which Mr B consumed. After eating and drinking, Mr B stated that he felt better. The staff member said that, at that point, he suggested that Mr B ‘should have a sleep’ and noted that Mr B ‘appeared’ normal.
The provider noted that staff members checked on Mr B between 5pm and 8pm, and he was offered dinner at around 6pm, which he declined. At 8pm Mr B was woken up to be given his medication, and it was noted that he had ‘urinated’ in his bed, his ‘speech was slurred’, and he told staff that ‘he could not really move’. Mr B was given his medication, and he drank a glass of water. He managed his intravenous injection by himself, although about five to ten minutes after administrating the injection, staff became concerned about Mr B’s appearance, as he ‘seemed hot, the skin on his arms, legs and stomach was red coloured and looked rash-like, the veins on his stomach were visible, his lips seemed dry, the skin around his eyes was a dark colour and [despite this] he was not perspiring’. The impression of staff was that Mr B’s condition had ‘deteriorated very rapidly’.
At 8.19pm staff called the call centre to seek support from the health advisor. At 8.24pm the manager on duty called back and advised staff to contact the health advisor. At 8.34pm staff called the health advisor and were advised to call for an ambulance. Mr B was picked up by the ambulance at 8.48pm, and the ambulance staff were supplied with his folder, which contained background information, including his medication chart.
The provider stated: ‘From our review, it appears that the actions taken by [staff] were appropriate in the circumstances.’

Resolution proposal

On 17 February 2025, I wrote to the provider and outlined that I had received independent advice from Mr John Taylor (attached to this report as Appendix A), which had highlighted several severe systemic shortcomings in the care the provider had provided to Mr B. Based on a review of the complaint, the provider’s response, and Mr Taylor’s advice, I proposed that HDC find the provider in breach of Right 4(4) of the Code of Health and Disability Services Consumers’ Rights[7] (the Code).
On 4 April 2025, the provider responded that it agreed to the resolution pathway that was proposed, which included that the provider accepted that it had breached Right 4(4) of the Code. However, although the provider acknowledged the validity of many of the issues raised by the advisor, the provider raised concerns about certain aspects of his report. The concerns raised by the provider prompted me to seek additional advice from Mr Taylor in respect of the issues highlighted by the provider. The additional advice is attached to this report as Appendix B and includes responses to the concerns raised by the provider. Other parts of the response have been incorporated into this report where applicable.

Changes made since events

The provider stated that numerous changes have occurred since the events. The changes include increased recruitment initiatives for permanent support workers, recruitment of a new team for the care home in which Mr B lived, the creation of a new quality manager role, and a health advisor specifically designated for the provider consumer group. In addition, the provider changed the way consumers are grouped in the care homes to improve compatibility, and other PWS consumers’ files have been audited regarding the arrangements in place.

Responses to provisional decision

The provider was given the opportunity to respond to the provisional decision.
The provider responded that it accepts all the recommendations made by HDC and that ‘Mr B's death and the investigation into care provided to him has been taken very seriously by our team, and we are committed to using the learnings from this investigation to support improvements in our services.’
In addition, the provider reported that some recommendations have already been addressed and some edits have been made to the above section of the provisional opinion in response to its feedback.
Mr and Mrs A were given the opportunity to respond to the ‘information gathered’ section of the provisional decision. Mr and Mrs A responded that they agreed with the expert advice. They highlighted further issues such as that progress notes were missing and lacked depth and consistency and that the provider failed to inform the family when Mr B became unwell and when medical advice/help was sought, despite them being his welfare guardians.

Decision: the provider — breach

The provider has a duty of care to ensure that its vulnerable consumers are receiving an adequate standard of care and support in line with their individual needs, whilst meeting contractual obligations and in adherence to the Code.

Adequacy of overall care provided to Mr B

Regarding the provider’s overall care of Mr B, Mr Taylor advised:

‘It is my view that the service provided to Mr B severely departed from the expected standard of care at a systemic level in a number of aspects. These include the lack of staff knowledge, training and oversight, meaning Mr B was supported without any specialist input or oversight. In addition, a lack of planning for a safe service, in particular relating to:

- the numerous staffing issues leading to inconsistencies in approach and a lack of clarity of roles.
- poor daytime activity planning for appropriate exercise and allowing inappropriate access to high calorific foods.
- Failure to manage Mr B’s diet.
- Failure to institute effective weight monitoring (for the first three months at least).
- Failure to provide adequate supervision, which left him unattended for extended periods where his health wasn’t monitored. This was also likely to be how Mr B ate
  something that caused his intestinal perforation and subsequent abscess.
- Poor health management …

- Poor and inconsistent record keeping.
- Not having the necessary equipment in usable condition (specifically the scales and the landline).’

I accept Mr Taylor’s advice and am critical that the provider did not provide an overall adequate standard of care to Mr B. In my opinion, Mr B clearly needed a consistently high standard of care to maintain his wellbeing and keep him safe, and this did not occur in a number of important respects. The failings included ineffective management of Mr B’s PWS syndrome, inadequate leadership oversight, and inadequate staff member supervision of Mr B. These failings contributed to Mr B’s rapid weight-gain, to ‘food incidents’ such as Mr B eating all the ham and drinking all the milk, and to a lack of supervision when he became unwell, as discussed further below. Accordingly, I disagree with the provider’s statement that Mr B ‘was receiving appropriate services.’
Mr Taylor advised:

‘All of this was avoidable if the provider had engaged in learning about [PWS] and using the family resource available to them as it appeared the specialist youth support service did. Because Mr B was in compulsory care, the expectation was that the care be at least safe is even more imperative and, in my opinion, was not met.’

I accept Mr Taylor’s advice and am very critical that the provider did not engage in learning about PWS, and it did not provide appropriate training and resources to its staff members to allow it to provide a safe standard of care to Mr B. There was also a missed opportunity to utilise the family resources available to the provider that had been provided by Mrs A, who effectively had been supporting Mr B to manage his PWS when he was residing at home.

Adequacy of care provided to Mr B when he became ill

Regarding the provider’s care provided to Mr B when he became unwell, Mr Taylor advised:

‘It is my view that there were severe departures at a systemic and operational level from these expected standards of care. Namely:

1. His specific health needs were neither known to his staff nor monitored adequately.
2. There was no clinical oversight other than an optional on-call number.
3. When Mr B became unwell it went unrecognised because clear symptoms were missed, probably because they were unknown to the attendant staff.
4. The provider had failed to provide the requisite training to assist with Mr B’s safety.
5. The provider did not appear to have systems in place to ensure close observation.
6. The provider did not put in place safety plans to mitigate staff shortages that could impact safety.’

I accept Mr Taylor’s advice, and I am critical that Mr B was not supervised, monitored, and cared for adequately when he became unwell. I am concerned that the provider staff members’ recollection of events on 27 May 2023 varied greatly, which raises doubts about the accuracy of the staff statements.
I note the statement of a staff member that at around 4–4.30pm on 27 May 2024 Mr B said that he had felt sick since breakfast and he was dizzy and thirsty, and the morning staff had not checked on him, which is highly concerning. In response, staff gave Mr B two portions of Weet-Bix and four drinks, which is an excessive amount for anyone to ingest in one sitting and could have been a warning sign of Mr B suffering from diabetes complications.
In my view, staff missed several opportunities to contact the health advisor earlier to seek advice — first, in the morning when Mr B told staff member A that he was sick, and second in the afternoon when Mr B stated that he had been sick since the morning and was ‘dizzy and thirsty’. In addition, staff missed other vital signs that Mr B was unwell, including loss of appetite, frequent trips to the bathroom, and excessive thirst. Based on this, I am critical that staff did not contact the health advisor earlier to initiate more prompt intervention.
I consider that it is more likely than not that Mr B was seriously ill much earlier than indicated by provider staff, and Mr Taylor has indicated that the non-identification of Mr B’s illness likely occurred because of a lack of staff knowledge, supervision, and monitoring, which I agree with. Accordingly, I disagree with the provider’s statement that ‘[f]rom [the provider’s] review, it appears that the actions taken by [staff] were appropriate in the circumstances’.
I accept Mr Taylor’s advice that ‘these severe departures from the expected standard of care stem from the poor systems, inadequate staff training, and inconsistent staff oversight and support provided by the provider and not from any particular individual who may have been involved in Mr B’s direct care’.
I note that Mr and Mrs A apportioned blame for inadequate care, including when Mr B became ill, not only on the provider as a company, but also on individual staff members. However, I share Mr Taylor’s opinion that the severe departures stemmed from the provider’s overall poor systems and support of its staff and not any particular individual involved in Mr B’s care.

Conclusion

At the time of the events, the provider should have had robust policies and procedures in place and should have provided training, support, and oversight to its staff members in order to provide a supportive and safe environment for Mr B. In my opinion, taking into account the complaint, the provider’s response, and Mr Taylor’s advice, the provider breached Right 4(4) of the Code, which states that every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer. I find that the provider did not provide services to Mr B in a manner that minimised harm to him and or optimised his quality of life.
I note that the provider has accepted this finding.

Recommendations

I note that in its response the provider states that it has already addressed some of the recommendations below, which is commendable. However, for ease of reference in the provider’s reporting and due to recommended follow-up action, the original full recommendations have been left in situ.
I recommend that the provider:

1. Provide a written apology to Mrs A and Mr A and their whānau for the deficits identified in this report. The apology should be provided to HDC, for forwarding to the family, within three weeks of the date of this decision.
2. Audit the personal and risk management plans for all residents who are being cared for under compulsory care and have serious medical conditions or diagnoses that require ongoing monitoring or management for the resident’s safety. The audit is to determine whether the residents’ plans accurately reflect information gathered from all relevant sources (e.g., specialist care plan, specialist or medical advice, support needs assessment, input from family or whānau) and whether this has resulted in specific and measurable outcomes in the residents’ action plans for managing and monitoring these conditions, and clear instructions on how to recognise any warning signs and escalate concerns. Consideration should also be given to whether the plans meet the requirements of a care or support plan under Ngā Paerewa and whether the plans are in accordance with the provider’s own policies. The provider is to report back to HDC with a summary of the methodology used and the findings of the audit, and with an action plan to address any issues identified, within six months of the date of this report.
3. Revise its standard operating procedure (SOP) for onboarding support staff to ensure that the provider is meeting the specialist supported accommodation Service Specifications and is ensuring that staff are well trained and qualified to support the person positively and meet their needs. This review should include consideration of how staff are orientated and trained in the specific care plans, needs, and requirements of the residents they are supporting. The provider should also consider pre-emptive risk-management strategies to ensure that care plans are being adhered to during times of staff shortages (including those occasions when staff from contracted temporary staffing agencies are being used). The provider is to report back to HDC with a description of any changes made and supporting evidence, within six months of the date of this report. The provider is also to monitor the adherence to any new policies or processes and report back to HDC on their effectiveness within three months following their implementation.
4. Review five random specialist care consumers’ files, and in particular their progress notes, to ascertain the overall current quality/standard of the written progress notes.
5. Develop and implement guidelines on how to write records, including the content required to be included in each record.
6. Provide training to all relevant staff members, and thereafter re-audit five random care consumer’s files to ascertain whether changes have occurred. The progress notes and review report, including guidelines, findings, and evidence of staff attendance at the training session/s should be forwarded to HDC within six months of the date of this report.
7. Conduct a comprehensive review of the daily notes and shift handovers for the residents who are currently under specialist residential care at Mr B’s previous address to determine whether the notes show that the objectives of the residents’ action plans are being carried out and the overall quality/standard of the written notes reflect that which would be expected to enable cohesive care of a resident with complex support needs. If any issues are found, an action plan should be developed to address these issues and prevent recurrence. A report on the outcome of this review and a summary of any action taken subsequently should be provided to HDC within six months of the date of this report.

I recommend that the provider consider sharing the anonymised final report, or parts of the report, across its facilities to support education about providing safe care to residents with PWS. The consideration and, if applicable, evidence that this has occurred, should be provided to HDC within six months of the date of this report.
Previously, on a separate investigation, HDC recommended that the provider provide further training to staff on the following topics:

1. Incident reporting;
2. Roles and responsibilities of support workers;
3. Documentation standards; and
4. Reporting changes in behavioural patterns using the STOP and WATCH tool.

I recommend that the provider extend this training to staff working in specialist residential care with adaption for any requirements that are specific to this type of care, including additional supervision requirements and training in relation to relevant neuro-developmental and other disabilities. Evidence of the training, the form of training material, and staff attendance records is to be provided to HDC within nine months of the date of this report.

Follow-up actions

A copy of the final report will be sent to the Coroner and Work Safe New Zealand. The Coroner and Work Safe New Zealand will determine whether further action on their part is called for.
A copy of the final report with details identifying the parties removed, except the advisor on this case, will be sent to the Ministry of Social Development and HealthCERT and placed on the Health and Disability Commissioner website, www.hdc.org.nz, for educational purposes.
A copy of the final report with details identifying the parties removed, except the advisor on this case, will be sent to Health NZ, and they will be asked to review the specialised services currently available to support consumers with PWS and whether they are adequate.

Ms Rose Wall

Deputy Health and Disability Commissioner

Appendix A: Independent clinical advice to Commissioner

The following independent advice was obtained from Mr John Taylor on 5 February 2025:

‘Complaint:	Mr [B] (dec)/[…] ([The provider]) […]
Our ref:	23HDC02317
Independent advisor:	Mr John Taylor ONZM

I have been asked to provide clinical advice to HDC on case number 23HDC02317. I have read and agree to follow HDC’s Guidelines for Independent Advisors.

I am not aware of any personal or professional conflicts of interest with any of the parties involved in this complaint.

I am aware that my report should use simple and clear language and explain complex or technical medical terms.

Qualifications, training and experience relevant to the area of expertise involved:

I have the following qualifications and experience to fulfil this request.

Qualifications: MPhil (Distinction) in Disability Studies, Education and Evaluation; DipPGArts (Distinction) Social Work; BSc (in ethics and science); LTh.

Experience: 37 years of working within the disability sector, including the following roles: direct support worker, agency management (over 20 years), agency governance, behaviour specialist (over 10 years), national sector roles such as Chair of NZDSN, National Reference Group for the MoH’s New Model, National Leadership Team for Enabling Good Lives, a range of contracted roles, and I have helped set up a number of support agencies and disability-related businesses.

I have had considerable experience in the support of people with Prader-Willi Syndrome (PWS) since I became involved in approximately 1995. I then worked alongside the Prader-Willi Association of New Zealand (PWSANZ) for the following 10–12 years, assisted the establishment of specific living situations for people with PWS, provided training and presented at international conferences on the topic. I remained engaged in directly supporting people with PWS until late 2023.

Documents provided by HDC:

Letter of complaint dated 13 December 2023.
[The provider]’s response dated 11 March 2024.
[The provider]’s clinical records and attachments dated 12 April 2024.
Services’ response dated 2 July 2024.
Services’ needs assessments documents (2022 PDF and 2023 […]) review PDF), Client Support Plans (2021 and 2022 Specialist care plan PDF) dated 7 August 2024.
Postmortem Report dated 8 April 2024.
Ambulance records dated 27 May 2023.
Whaikaha Critical Incident Report by Mrs [A].
Whaikaha Initial Death Review (IDR) Form.

Documents accessible through websites:

[…] ([Specialist supported accommodation]) Tier Two Service Specification (Whaikaha’s website).
[…] [Compulsory Care] (Ministry website).

Referral instructions from HDC:

Please advise if [the provider] provided adequate care to [Mr B], including adequacy of management/monitoring of PWS, PWS staff awareness and training, weight management, access to inappropriate food and snacks, access to meaningful activities, [Mr B’s] ability to communicate with his parents, health information in plans and assessments regarding PWS and his other medical conditions.
Please advise if [the provider] provided adequate care to [Mr B] when he became ill, including adequacy of monitoring, progress notes, staff interactions/actions and escalations.
Please advise of any other matters in this case that you consider warrant comment.

Factual summary of clinical care provided complaint:

Brief summary of clinical events:	The complaint I am considering in this response was lodged by [Mr B’s] mother — [Mrs A]. In that complaint, [Mrs A] alleges that […] [the provider], among others, failed to provide the necessary level of support to safely support [Mr B], resulting in his untimely death. On 22 June 2022, [Mr B] … was taken into custody to […] prison and then moved to […], [a specialist youth support programme service]. He was subsequently admitted to a property run by […] [the provider] as part of their “[…] service on 9 November 2022 under [compulsory care] at the Court’s direction. Six months later, on 30 May 2023, [Mr B] passed away due to diabetic ketoacidosis complicating intra-abdominal sepsis. At the time of his admission to the [provider’s] facility, [Mr B] was a 19-year-old with well managed Prader-Willi Syndrome (PWS). In the first 12 weeks of being with [the provider] he gained approximately 16kgs of weight and he developed pre-diabetes. (Rapid weight gain is something people with PWS are prone to do if their diet is unmanaged and, traditionally, death from obesity-related issues has been very common among this population.) [Mr B] gained a further 4 kgs over the subsequent 10 weeks. The complaint from [Mrs A] provides significant detail on the failings she considered occurred with the support [the provider] provided. In summary being that [the provider] failed to adapt their support to meet the needs of an individual with Prader-Willi Syndrome, failed to provide training to their staff to operationalise these specific requirements and then failed to act with sufficient urgency when [Mr B] became unwell, leading to him being admitted to hospital with little hope of survival. In their response, [the provider] stated that they were aware that [Mr B’s] parents were concerned by his weight gain but that they were taking steps to address this. They also state that, in the days prior to the hospital admission, [Mr B] did not display symptoms that he was unwell and that once he did, a few hours prior to them calling the ambulance, they acted quickly. NB: Throughout my response I will use ‘[the provider]’ to denote the service [Mr B] was supported by […].
Question 1: Please advise if [the provider] provided adequate care to [Mr B], including adequacy of management/monitoring of PWS, PWS staff awareness and training, weight management, access to inappropriate food and snacks, access to meaningful activities, [Mr B’s] ability to communicate with his parents, health information in plans and assessments regarding PWS and his other medical conditions.
List any sources of information reviewed other than the documents provided by HDC:		[…] Compulsory Care [legislation] […] Health and Disability Commissioner (Code of Health and Disability Services Consumers’ Rights) Regulations 1996 Ngā Paerewa Health and disability services standard NZS 8134, June 2021. Prader-Willi Association NZ Website Tier Two Service Specification for […] (Specialist supported accommodation]), October 2015
Advisor’s opinion:		Prader-Willi Syndrome (PWS) is a relatively rare disorder and is poorly understood across the entire disability support system from a policy perspective, to funding, to service delivery. Because people with PWS typically have an associated intellectual disability/learning disability, they tend to be dealt with through that lens. This is a wholly unsatisfactory and unsafe approach that ignores the primary health issues associated with PWS. Some other jurisdictions (eg: USA, UK, many EU countries) have acknowledged this difference and have specialist services in place. That said, it was still the responsibility of […] ([the provider]) to understand the specific support requirements of any person they offer service to. This is both contractually required and is the expected standard of care within the disability support sector. In my opinion, and in the opinion of peers who I consulted with, [the provider] completely failed to understand the impact Prader-Willi Syndrome had on [Mr B] and the need for specific support to be designed so he was safe. They failed to: teach their staff how to support someone with PWS, provide adequate diet management, timely weight monitoring, adequate health monitoring and appropriate daytime activities. Their decision to limit [Mr B’s] phone communications with his parents removed a critical safety channel. Below I will give a brief commentary on each of these areas. Staff awareness training [The provider] was provided with a lot of very useful general information regarding PWS and very detailed specific information relating to [Mr B] prior to and during his admission to their […] property. It was suggested by the referring agency and by [Mr B’s] mother that there be staff training as soon as possible to operationalise this information. This never happened. Instead, [the provider] left it to their direct support staff to assimilate and act on the necessary information from “a pink box in the office labelled PWS what to do and how to do it.” In their response to this complaint, they wrote to the HDC about their expectations for how staff would manage [Mr B’s] support needs. They commented that the: “Responsibility for these tasks sat with each of the support workers who was involved in [Mr B’s] care” albeit with oversight of an equally untrained team leader. ([the provider], in their response, refer to these staff as “non-professional community staff.”) This laissez faire approach is consistent with little or no understanding about the support needs for a person with Prader-Willi Syndrome and ignores their contractual obligation to do so. It was further complicated by the number of disruptions to staffing that occurred. (There were three changes to the [manager], the service manager was on extended sick leave and there were frequent occasions when agency staff were used as relief staff.) Diet management With regard to managing [Mr B’s] diet, which is probably the most critical area of support for a person with PWS, [the provider] did not do this as would be expected for a person with PWS. As a result, [Mr B] had easy access to inappropriate food, leading to rapid weight gain and developing pre-diabetes. Worse than that, some of the advice [the provider] did provide their staff most likely exacerbated the problem. Below are two examples of what was suggested as good practice and what [the provider] did. Advice provided to [the provider]: “[Mr B] can be quite obsessed with food — he thinks and talks about it a lot. [Mr B] will over-eat if he has the opportunity. He has stolen in the past to get food, so access to food needs to be supervised or managed.” Advice [the provider] gave their staff: “[Mr B] knows what he can/cannot eat”^[8] Advice provided to [the provider]: “Serve equal overall quantities of food on plates so that it ‘looks’ the same [as everyone else].” Advice [the provider] gave their staff “Staff are to serve small portions [of what everyone else was eating] of potatoes, rice and pasta and are to support [Mr B] in avoiding sugary items, sweets and high-calorie snacks.” In a similar vein, an incident report from 22/3/23 demonstrates the lack of food management and the lack of attention to advice provided. In brief, on this occasion, food for all residents was left out on a table in a buffet style. [Mr B] had access to this and there were no staff present to supervise. He duly ate all the ham meant for all the residents. (The advice provided to [the provider] was: “Plate-up food out of sight if possible (avoiding buffet type meals).”) [The provider] did make some attempts to manage [Mr B’s] diet in the later months of his time there once his weight gain was noticed. However, these appeared to be ad hoc and largely inadequate given he continued to gain weight, albeit at a slower rate. For example, his parents found a receipt for an Indian takeaway he had for lunch on 19 May 2023, about 10 days before he passed away. The lunch was enormous for any person. For someone with PWS who was supposed to be on a weight management diet, it was unconscionable. (The [provider] notes indicate this did happen and he subsequently drank all the milk at the residence adding more dietary intake and demonstrating the lack of oversight for [Mr B].) Weight monitoring As mentioned in the introduction, people with Prader-Willi Syndrome are severely prone to weight-related issues, including diabetes and other obesity-induced conditions. For this reason, diet and regular monitoring of the person’s weight are required for their personal safety. [The provider] was required by the Specialist care plan to weigh [Mr B] regularly. Best practice for someone with PWS is to have no longer than weekly intervals (daily is not uncommon). [The provider] interpreted this as monthly intervals. These monthly weigh-ins did show steady and excessive weight gain, and it wasn’t until February 2023 that [the provider] appeared to see this as an issue. By then he had already gained 16–20 kgs. Once [the provider] did start monitoring [Mr B’s] weight they began to manage it better. At various times when [Mrs A] was trying to get regular monitoring in place, she was told that the scales didn’t work and/or didn’t have batteries and/or people had over-looked it. [Mrs A] offered to buy a set of scales so that this important, and increasingly urgent, process could happen. In their response, [the provider] seems to have missed the significance of this failure in their support. Instead, the provider commented: “We acknowledge that [Mr B’s] parents are concerned about his weight gain while under [the provider]’s care …” Appropriate activities. From the notes provided it appears to me that [the provider] did plan a number of useful activities for [Mr B]. Where they fell short of the mark was that many of their community activities revolved around food-related activities and [Mr B] had a very sedentary routine. With a better understanding of PWS, this would not have happened as it did. As it was, these community outings provided access to inappropriate amounts of food, and that, coupled with low exercise, would have contributed to his rapid weight gain. Health information and monitoring. […] [The provider] was given health information about [Mr B] that included issues such as slow gastric motility, potential constipation, probable gastroparesis, and his propensity to gain weight. They were also given various indicators to be alert to that could suggest a health issue. None of this appears to have been attended to. The more general PWS information they were supplied alerted them to an important aspect of people with PWS, which is that they typically have very high pain thresholds. What this means is that by the time they are showing signs of not feeling well they can be very unwell. This aspect of support was not evident in any planning for [Mr B’s] support. I will discuss this in relation to [Mr B’s] final days with [the provider] in the next question. In a broader sense though, I did not find any [provider] document that planned for or acknowledged the need to plan for [Mr B’s] specific health needs other than allergies and skin picking. The health information did not appear to be readily available to staffl; certainly this was commented upon by the ambulance service. In a care summary, the ambulance service commented: “Medical hx not immediately available … Staff not sure how to access relevant information … Relief carer unable to get medical advice through own channels … Ongoing issue with this facility.” Communication with family [Mr B] had both the right and the need to communicate with his parents. They were his primary support, and they were able to assess his needs through conversation. [The provider] had a policy that did not allow [Mr B] to have a private phone. He had access to a landline that was periodically faulty, and therefore often not available. This limited [Mr B’s] communication with this very important source of support and health monitoring and, almost certainly, reduced his overall safety. It seems entirely likely that had [Mr B] had access to direct communication with his parents he would have told them he was feeling unwell prior to 27 May 2023. [The provider]’s response to this restriction they imposed demonstrates both a lack of understanding as to the specific need for this communication for [Mr B] and a concerning lack of imagination when it comes to managing the risks that they perceived from private phones.
What was the standard of care/accepted practice at the time of events? Please refer to relevant standards/ material.		In brief, the expected standard of care is, and was at the time, that [Mr B] is supported in such a way that his needs are met, he is safe and he can participate to the greatest extent possible in meaningful and safe activities. Specific codes that underpin this general standard and indicate a failure to meet those standards are: The NZS 8134. Specifically: 2.3.2 Service providers shall ensure their health care and support workers have the skills, attitudes, qualifications, experience and attributes for the services being offered. 3.5.1 Menu development that considers food preferences, dietary needs, intolerances, allergies … HDC Code of Rights: Right 4 Right to services of an appropriate standard (1) Every consumer has the right to have services provided with reasonable care and skill. (2) Every consumer has the right to have services provided that comply with legal, professional, ethical, and other relevant standards. (3) Every consumer has the right to have services provided in a manner consistent with his or her needs. (4) Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer. (5) Every consumer has the right to co-operation among providers to ensure quality and continuity of services. […] [Compulsory care legislation] […] Right to receive visitors and communicate orally with persons outside facility Every care [consumer] is entitled, at reasonable times and at reasonable intervals, to receive visitors and to communicate orally with persons outside the facility, except where the [manager] has reasonable grounds for believing that a visit or communication would be detrimental to the interests of the care [consumer] and to his or her care. […] [Specialist supported accommodation] Service Specification Service Objectives: The Provider will: … c. Ensure People live in an environment that safeguards them from abuse and neglect and ensures their personal security and safety needs are met. d. Encourage People to experience opportunities for optimum health, wellbeing, growth and personal development including staff proactively seeking opportunities and experiences for People they support … f. Ensure support staff are well trained and qualified to positively support the Person and meet their needs. g. Ensure the Person, and his/her family/whānau/ guardians/advocate (with the consent of the Person), have input into all aspects of the service (such as staffing, Individual Planning, and Governance) … i. Provide support at the level necessary for people to have a safe and satisfying home life. 6.1.4 The Provider will: d. Closely observe the Person and maintain safety through proactive intervention. 7.1.1. Planning for and with [care consumers] Work with others to develop a comprehensive understanding of the [care consumer’s] needs 8.1.1 The provider will: a. Ensure the service is provided by a mix of clinical staff (professionally qualified e.g. nurses, psychologists, occupational therapists), senior staff with relevant expertise and support workers. b. Ensure sufficient staff to provide a level of service to meet the Person’s assessed needs. c. Ensure staff receive training that enables them to deliver a service in keeping with best practice.
Was there a departure from the standard of care or accepted practice? No departure; Mild departure; Moderate departure; or Severe departure.		[The provider] failed to meet its contractual obligations to provide adequate care for [Mr B], including safeguarding him from neglect, ensuring his health and wellbeing, and ensuring staff were properly trained. The service did not meet the quality standards expected in the Health and Disability Service Standards NZS 8134, and there was a failure to provide appropriate mental health support. To recap the circumstances: [Mr B] entered the Justice system because of his own actions. He spent over 4 months being supported in that system with no apparent ill effects. Within six months of support with [the provider] he was 20kgs heavier, pre-diabetic and then passed away due to becoming ill, most likely from something he ate causing sepsis exacerbated by pre-diabetes, and his symptoms weren’t noticed until it was too late to save him. It is my view that the service provided to [Mr B] severely departed from the expected standard of care in a number of aspects. These are: The lack of staff knowledge, training and oversight, meaning [Mr B] was supported without any specialist input or oversight. A lack of planning for a safe service, in particular relating to: the numerous staffing issues, leading to inconsistencies in approach and a lack of clarity of roles, poor daytime activity planning for appropriate exercise and allowing inappropriate access to high calorific foods Failure to manage [Mr B’s] diet Failure to institute effective weight monitoring (for the first three months at least) Failure to provide adequate supervision, which left him unattended for extended periods where his health wasn’t monitored. This was also likely to be how [Mr B] ate something that caused his intestinal perforation and subsequent abscess. Poor health management (covered more fully in Q2) Poor and inconsistent record keeping Not having the necessary equipment in usable condition (specifically the scales and the landline). All of this was avoidable if [the provider] had engaged in learning about Prader-Willi Syndrome and using the family resource available to them as it appeared the [specialist youth support service] did. Because [Mr B] was in compulsory care, the expectation that that care be at least safe is even more imperative and, in my opinion, was not met.
How would the care provided be viewed by your peers? Please reference the views of any peers who were consulted.		The peers I consulted unanimously agreed that the support severely departed from the accepted standard, and they were dismayed that these departures could happen to the extent that they did and with the outcome that occurred.
Please outline any factors that may limit your assessment of the events.		None that I am aware of.
Recommendations for improvement that may help to prevent a similar occurrence in future.		There are a number of improvements that suggest themselves. The main one I would recommend is that [the provider] engages with individuals differently so that the person’s specific characteristics, needs and aspirations are elevated to the point where [the provider] shapes their service to accommodate them.
Question 2: Please advise if [the provider] provided adequate care to [Mr B] when he became ill, including adequacy of monitoring, progress notes, staff interactions/ actions and escalations.
List any sources of information reviewed other than the documents provided by HDC:		[…] [Compulsory Care [legislation] […] Health and Disability Commissioner (Code of Health and Disability Services Consumers’ Rights) Regulations 1996 Ngā Paerewa Health and disability services standard NZS 8134, June 2021. Prader-Willi Association NZ Website Tier Two Service Specification for […] ([Specialist supported accommodation]), October 2015
Advisor’s opinion:		[The provider] did not provide the staff that supported [Mr B] with any training on Prader-Willi Syndrome, and the notes provided by [Mrs A] ([Mr B’s] mother) relating to this and more specific support for [Mr B] had been filed for staff to look at as they saw fit. In this circumstance, it is reasonable to assume that the direct support staff had no understanding of the critical need to monitor [Mr B] for certain signs of serious illness. When these signs presented themselves — particularly his loss of appetite, which should have seen the staff immediately ringing for medical advice/observation — it was not recognised for what it was. Nor were other symptoms that were consistent with diabetes attended to, such as frequent trips to the toilet and excessive thirst. [The provider] did have health advisors (nurses) available to support the direct support staff but only on an “as requested” basis. This means that “non-professional community staff” who were untrained in PWS and other medical issues were expected by [the provider] management to be able to know when someone with complex health issues needed medical intervention. It appears likely that these nurse advisors also lacked knowledge about Prader-Willi Syndrome and possibly [Mr B’s] specific health needs from the one time they appear to have been consulted. They suggested an additional laxative in the days preceding [Mr B’s] death but did not follow up to see how he was doing. The need for a laxative should have been a potential ill-health alert. [The provider]’s failure to train its staff was then exacerbated by the number of temporary positions in place at both management and support worker level. This would usually be seen as a risk to good support that needed a plan to minimise; none was offered by [the provider]. At the very least, a safety plan should have been present to acknowledge the staffing gaps, with the consequent knowledge gaps, so that extra care was taken with the people supported. The fact that there is no evidence of this happening demonstrates a significant failure but is consistent with certain features such as the records relating to [Mr B’s] support being poorly maintained. There were multiple failures in the passing on of essential information in shift handovers, resulting in a failure to notice or respond to early signs of illness from 20 May 2023 onwards, such as frequent bathroom visits, abdominal pain, abdominal distension, vomiting, and loss of appetite. Staff did not recognise the severity of [Mr B’s] condition and failed to seek timely medical assistance. They also failed to check on him, monitor his condition or provide adequate hydration. Instead they relied entirely on [Mr B] to self-report health issues. This latter is a remarkable failure in understanding about the abilities of someone with PWS, or indeed any person with intellectual disability. This group of people are known to generally look to please those in positions of power; and support staff within a compulsory care facility would certainly fit that description. Over the days preceding [Mr B’s] admission to hospital, it is evident that he spent a lot of time in his room. Although this may have been normal for him at this facility, it is difficult to see how this fits with the contractual requirement to “Closely observe the Person and maintain safety through proactive intervention.” It appears that he was largely left alone in his room with no proactive checking. On the morning he was taken to hospital, it appears that the usual staff member didn’t turn up to work and a reliever was called in and this reliever was unaware [Mr B] was in the house for quite some time. It is the opinion of [Mr B’s] mother and the medical people she consulted that [Mr B] was likely to be showing signs of being unwell for at least two days prior to [the provider] staff ringing for an ambulance. Certainly, the lack of proactive observation would have made this possible, and its likelihood is further supported by the ambulance staff. The ambulance records show that [Mr B] was already experiencing significant symptoms such as abdominal pain and breathing issues on May 27, 2023. The notes state “Lower abdomen pain radiates from RLQ to LLQ, nil increase in pain on palpation described as stabbing pain. Firm abdomen not normal for pt. Bowel sounds heard. Nil BM in 3 days. Normal urination, however pt had loss of bladder control this evening …” This indicates a delay in recognizing the severity of [Mr B’s] condition. There are queries about the competence of agency staff to assess [Mr B’s] health status, as evidenced by the statement “We note here that [Mrs A] has queried how agency staff could know whether [Mr B] looked ‘normal’”. This seems a fair question given that on 27 May 2023 the staff who were supporting [Mr B] included only one [provider] employee. The other two were an agency staff person and a security guard. I would note here that [the provider] commented that: “[the agency staff] has expertise in working with clients with intellectual disabilities, including those under [compulsory care legislation], and its staff are trained for delivery of services in community settings. All [agency] staff receive an orientation to the unit and have access to a client folder which contains key information about each resident.” This comment avoids the issue of specific knowledge about Prader-Willi Syndrome, about the nature of the orientation (presumably from other non-qualified staff) and about their personal knowledge of [Mr B]. Many of the records of the support [Mr B] was supplied are inconsistent, missing, or not completed to the extent that [the provider] can have little confidence that they know what transpired during his time with them and specifically would struggle to provide any surety about actions taken during his final few days at the [provider’s] facility. In summary then, it is my opinion that [the provider] did not provide an adequate standard of care to [Mr B] as he became unwell. His symptoms were missed or misinterpreted, progress notes were poorly maintained, and staff placed too much focus on [Mr B] being able to self-report. Because important cues were missed, staff did not escalate concerns as they should have been and therefore [Mr B] did not receive timely medical attention. From reading all the material, the overall environment in which [Mr B] lived for his 6 months with [the provider] seems to me to be one of very poor care, or at least, very impersonal care.
What was the standard of care/accepted practice at the time of events? Please refer to relevant standards/ material.		As in the above Question one, the same expected standards apply. That is that the expected standard of care is, and was at the time, that [Mr B] is supported in such a way that his needs are met and he is safe. NZS 8134. Specifically: 2.3.2 Service providers shall ensure their health care and support workers have the skills, attitudes, qualifications, experience and attributes for the services being offered. HDC Code of Rights: Right 4 Right to services of an appropriate standard […] [Specialist supported accommodation] Service Specification Service Objectives: The Provider will: … c. Ensure People live in an environment that safeguards them from abuse and neglect and ensures their personal security and safety needs are met. f. Ensure support staff are well trained and qualified to positively support the Person and meet their needs. 6.1.4 The Provider will: d. Closely observe the Person and maintain safety through proactive intervention. 8.1.1 The provider will: a. Ensure the service is provided by a mix of clinical staff (professionally qualified e.g. nurses, psychologists, occupational therapists), senior staff with relevant expertise and support workers. b. Ensure sufficient staff to provide a level of service to meet the Person’s assessed needs. c. Ensure staff receive training that enables them to deliver a service in keeping with best practice.
Was there a departure from the standard of care or accepted practice? No departure; Mild departure; Moderate departure; or Severe departure.		It is my view that there were severe departures at a systemic and operational level from these expected standards of care. Namely: His specific health needs were neither known to his staff nor monitored adequately. There was no clinical oversight other than an optional on-call number. When [Mr B] became unwell, it went unrecognised because clear symptoms were missed, probably because they were unknown to the attendant staff. [The provider] had failed to provide the requisite training to assist with [Mr B’s] safety. [The provider] did not appear to have systems in place to ensure close observation. [The provider] did not put in place safety plans to mitigate staff shortages that could impact safety. The only staff observing [Mr B] were poorly trained “non-professional, community” staff and security staff. The recording-keeping was below standard, and this was a moderate departure from the expected standard of care although it likely contributed significantly to the fatal outcome.
How would the care provided be viewed by your peers? Please reference the views of any peers who were consulted.		The peers I spoke to unanimously agreed that these were severe departures from what was the expected standard of care.
Please outline any factors that may limit your assessment of the events.		There may be additional information not presented. For example, I was not supplied with the [the provider’s] Critical Incident Report to Whaikaha.
Recommendations for improvement that may help to prevent a similar occurrence in future.
Question 3: Please advise of any other matters in this case that you consider warrant comment.
List any sources of information reviewed other than the documents provided by HDC:		Nil
Advisor’s opinion:		There is one further matter I wish to comment on: the matter of record keeping. I noted above that record-keeping was not done to the expected standard. However, there were records taken and there were sufficient records taken to be of some use. What is not mentioned by [the provider], and what I saw no evidence of, was these records being used to assist with the support of [Mr B]. Recording what is happening is not just useful for “covering one’s back” but is a very useful tool in understanding what is happening for a person. Examining the record can often uncover patterns and associations that are not easily observed on a daily basis. In my experience this is a critical feature that should be happening for any person with complex support needs; and one can assume anyone under [compulsory care] […] meets this threshold. There is no record of this activity in relation to [Mr B]. It may have been happening and [the provider] just did not comment. In which case it seems that certain patterns were missed. If a regular examination of the support logs and incident reports was not occurring, then this would constitute a severe departure from the expected standard.
What was the standard of care/accepted practice at the time of events? Please refer to relevant standards/ material.		The expected standard of care is to have a suitably qualified person look at these entries on an at least weekly basis to identify any trends or other issues that might be hard to find on a daily basis.
Was there a departure from the standard of care or accepted practice? No departure; Mild departure; Moderate departure; or Severe departure.		If the absence of evidence of this process is because this was not happening, then I view this as a severe departure from the expected standard of care and acknowledged safe practice.
How would the care provided be viewed by your peers? Please reference the views of any peers who were consulted.		I did not ask about this specific question, but I would assume our peers would hold a similar view to my own.
Please outline any factors that may limit your assessment of the events.
Recommendations for improvement that may help to prevent a similar occurrence in future.		If [the provider] is not routinely using health professionals to review the support notes generated about people with complex needs, then I suggest they commence this expected practice as soon as they can.
Name: Mr John Taylor
Date of Advice: 5 February 2025’

Appendix B: Further independent clinical advice to Commissioner

The following further advice was obtained from Mr John Taylor on 2 May 2025:

‘Complaint:		Mr [B] (dec)/[…] ([The provider]) […]
Our ref:		23HDC02317
Independent advisor:		Mr John Taylor
Please provide a response below to comments from [the provider] and advise if their comments have altered your previous advice in respect of standard of care deviations from accepted practice. Please advise if [the provider] provided adequate care to [Mr B], including adequacy of management/monitoring of PWS, PWS staff awareness and training, weight management, access to inappropriate food and snacks, access to meaningful activities, [Mr B’s] ability to communicate with his parents, health information in plans and assessments regarding PWS and his other medical conditions.
Introduction For this additional response, I will make a comment that relates to each of the five points raised by [the provider] individually. After this I will then reflect on whether my overall opinion has changed in relation to any departure from the standard of care or accepted practice that I observed in my first opinion.
Comment 7a “there are important contextual factors that are not referenced at all in the expert opinion. By way of example, the expert advice does not acknowledge the restrictions that applied to Mr [B] under [compulsory care legislation] […], which had a substantive impact on his day-to-day activities”
Response to comments:	In my original advice, the main comment I made relating to [Mr B’s] day-to-day activities was: “From the notes provided it appears to me that [the provider] did plan a number of useful activities for [Mr B]. Where they fell short of the mark was that many of their community activities revolved around food-related activities and [Mr B] had a very sedentary routine. With a better understanding of PWS, this would not have happened as it did. As it was, these community outings provided access to inappropriate amounts of food, and that, coupled with low exercise, would have contributed to his rapid weight gain.” There is nothing within the legislation nor within the Service Specification that [the provider] was operating under that would provide restrictions or difficulties to an organisation developing a programme of day activities that avoided a focus on food, nor any restrictions that would cause issues with assisting an individual to have adequate exercise. The context here is that [the provider] was funded to provide a high level of support, up to and including one-to-one support, for [Mr B]. This should make implementing a well-matched support plan achievable, as it appeared to be accomplished for the four months he resided in a similar facility run by [the specialist youth support programme service]. (They would have also been subject to similar legislative and contractual constraints.) The real issue was that [the provider] did not engage with the Prader-Willi Syndrome diagnosis to design a well-matched support plan in the first instance.
Comment 7b “there are comments in the expert report which do not correlate with the records held by [the provider]. By way of example, the expert advice has referred to [Mr B] vomiting (both in the context of an excerpt from paramedic notes and also later in the expert advice). We are not sure of the basis on which the expert has determined that [Mr B] had been vomiting, as this does not accord with our records or the recollection of staff”
Response to comments:	The Ambulance report provided as part of the complaint stated that [Mr B] had experienced nausea and vomiting the day prior to their attendance. This information was provided to them directly by [Mr B]. There is no reason given by [the provider] as to why such a comment from [Mr B] to a third party (the ambulance crew) should be disregarded or considered false. [Mr B’s] mother, in her complaint, commented that this would have been a significant disclosure from [Mr B] that he would not have made frivolously. The fact that this information does not appear within the [provider] record does not signify that it is not correct. That fact that staff did not report it more likely relates to the poor oversight provided to [Mr B] and/or the poor level of record keeping than that it didn’t happen.
Comment 7c “parts of the expert advice do not appear to take into account explanatory information that has been provided by [the provider] or takes portions of records without their context. By way of example, the expert advice notes that [the provider] was provided with advice regarding [Mr B’s] diet, but states that [the provider] advised its staff “[Mr B] knows what he can/cannot eat”. The expert has commented that [the provider]’s advice to its staff “most likely exacerbated the problem”. The quotation “[Mr B] knows what he can/cannot eat” is taken out of context and does not recognise the information which was provided to staff with the quoted sentence (we have attached diet management plan which shows how this statement was made). While we acknowledge that there were issues with weight management, it is important that quotations are not used out of context;
Response to comments:	The comment “[Mr B] knows what he can/cannot eat” turns up three or four times in the instructions to staff in slightly different ways. For example, in the Risk Management and Behaviour plan it states: “[Mr B] should take an active part in food planning and preparation (he knows what he can/cannot eat).” Again, in the Health and Wellbeing Support Requirements, it is stated: “[Mr B] is very knowledgeable about the foods he can eat and the amount of food he can eat in a day to remain healthy.” So, although the way I wrote this may have appeared to have been out of context, it was merely intended as a representation of the advice given rather than referring to every instance. My comment was also within the context of my criticism of [the provider] for not providing adequate training to their staff despite having been provided with copious quantities of information by [Mr B’s] mother. The critical point here is that [the provider] did not maintain a healthy diet for [Mr B]. They allowed him to have relatively free access to food, especially in the first 3 months, to the extent that he gained 16 kilos in those 12 weeks. For clarity, that means he would have been eating about twice as much as he should have been. [The provider] does now say they acknowledge there were issues with weight management. This appears to be progress as in their previous information they only acknowledged that [Mr B’s] parents were concerned about his weight and that initially staff did not appreciate the extent of the risks related to diet and food management. I reiterate, the issue here is that [the provider] did not engage with the Prader-Willi diagnosis and did not give their staff the training they would have required to adequately support [Mr B]. Even after those initial three months, [Mr B] continued to gain weight at an average of 1.33kg per month for the last three months he lived with [the provider].
Comment 7d “the expert advice does not consider resource constraints that [the provider] was managing. For example, there is criticism of [the provider] using agency staff, without acknowledging the sector-wide shortages, recruitment efforts, and documented discussions with the funder regarding resource constraints”
Response to comments:	First, I would comment that I did not criticise [the provider] for using agency staff per se. My critique was focused on whether or not said staff were provided with sufficient information about [Mr B] to do their job well. The critique was really focused on the apparent lack of staff training and support [the provider] provided to all the staff involved in [Mr B’s] support. Second, the requirement to provide competent, trained and sufficient staff is part of the contract [the provider] will have agreed to and is required by the relevant standard and service specification. While I acknowledge that many organisations, especially large organisations, struggle with staff recruitment from time to time, it is my opinion that the responsibility lies with them to manage this. If they think they have insufficient staff to fulfil a contract then there are mechanisms for them to raise this with their funder, which they did. If that is not successful, then they can delay entry to service for an individual until such time as they do have sufficient staff if accepting a new person is likely to be dangerous to that individual or others. In fact, this is tacitly required of them by the HSE Act.^[9] [The provider] did not do this, so an obvious assumption is that they did not think that their levels of staffing would inhibit the support for [Mr B], nor endanger him in any way. Raising staff recruitment now as an ameliorating factor appears to do little more than underline the systemic issues I wrote about in my first opinion.
Comment 7e “the expert advice does not acknowledge changes that have been made within [the provider’s service] since [Mr B] was under [the provider]’s care”
Response to comments:	This is correct; I did not make comment on changes within [the provider’s service] since the death of [Mr B]. Most of these changes involved employing personnel into positions that were needed. The others related to: their iPlanit CRM, to the particular way they group people, and staff training on PWS. It is my hope that these changes are sufficient to avoid a repeat of the errors in support provided to [Mr B], but the level of detail provided by [the provider] does not allow me to comment further on the likelihood of this.
Has the departure from the standard of care or accepted practice changed?	Nothing in these comments caused me to change my original opinion, which was that [the provider] severely departed from the accepted standard of care and failed to meet its contractual obligations to provide adequate care for [Mr B], including safeguarding him from neglect, ensuring his health and wellbeing, and ensuring staff were properly trained. It is my opinion that all of this was wholly avoidable if [the provider] had engaged in learning about Prader-Willi Syndrome and had used the family resource available to them as it appeared the [specialist youth support service] did.
John Taylor ONZM
Date of additional advice: 2 May 2025’

[1] PWS is a rare genetic condition that causes hunger, obesity, cognitive impairment, and other problems.

[2] A life-threatening reaction to an infection.

[3] ASD is a neurodevelopmental disorder characterised by deficient reciprocal social communication and restricted, repetitive, and inflexible patterns of behaviour.

[4] ICD is a class of psychiatric disorders characterised by impulsivity — failure to resist a temptation, an urge, or an impulse; or having the inability not to speak on a thought.

[5] Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying, which can affect digestion. The cause may be damage to a nerve that controls stomach muscles, and symptoms include nausea and a full feeling after little food is eaten.

[6] The information below is derived from the contents of a letter the provider submitted to Whaikaha dated 13 July 2023, following an internal review the provider completed shortly after Mr B’s death and before the provider was notified of the formal HDC investigation. The provider stated that at that stage, they had no information about the cause of Mr B's death, and their view was based on the information they had gathered through their internal review.

[7] Right 4(4) states: ‘Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.

^[8] This advice was taken from the Specialist care plan but is taken out of context.

^[9] Although the agreement the provider had with the Ministry may have required they provide service to referred individuals, it is not possible to contract outside of the law, so requirements of the HSE Act pre-empts any agreement.

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Inadequate care provided by disability service to consumer with Prader-Willi syndrome