The NDIS, Quality and Safeguards

Many of you many have heard about changes to funding of disability services in the ACT and nationally.

You might have heard the term NDIS which stands for National Disability Insurance Scheme or the NDIA which stands for National Disability Insurance Agency (the Agency implementing the NDIS).

So what is the NDIS?

Here is some information from the NDIS FAQ page

The NDIS is a new way of funding individualised support for people with disability (including psychosocial disability) that involves more choice and control and a lifetime approach to a person’s reasonable and necessary support needs.

It will focus on early intervention, recognising that timely support can minimise the impact of a disability. It will provide assistance at the right time, rather than only when people reach crisis.

If you are able to access the Scheme, the National Disability Insurance Agency (the Agency implementing the NDIS) will work with you to:

• Discuss your individual goals and reasonable and necessary support needs;
• Develop an individual plan that will help you achieve your goals;
• Consider the supports needed to strengthen family and informal caring arrangements; and
• Connect you to mainstream services and community supports.

What are the access requirements?

To access the NDIS you need to meet the access requirements, which means you must:

• Have a significant and permanent disability that affects their ability to participate in the community and employment and they require care and support, or could benefit from early intervention requirement.
• Be an ACT resident.
• Be under the age of 65 on 1 July 2014.

You can check if you might be eligible for the NDIS in the ACT by using the My Access Checker available on the NDIS website.

I recently went along to a consultation on the quality and safeguarding of the Scheme as we now with any consumer scheme where you are being asked to by services (for instance a used car) there is a risk that you will not get what you paid for because you don't have the same level of knowledge around the product as perhaps the salesperson does.

Safe guarding is a really important part of this new Scheme as we are talking about potentially vulnerable and marginalised groups trying to access services.

Some of the ideas discussed were;

• The use of a 'Trip Adviser' like program to allow users to rate services and steer people towards good service
•  Ensuring that there are good programs in place to grow the skill base of individuals using the service
• Making sure the safeguards include mention to the National Disability Standards and the National Mental Health Standards
• The role the safeguarding process will have in determining risk
• Can you regulate mainstream services like cleaners and shopping aids without over regulating?
•  Safeguarding framework must include the role of community and advocacy groups
•  Should the agency oversee complaints?

It was a very interesting discussion for me particularly because HCCA has just finished it's submission for the review of the National Registration and Accreditation Scheme for Health Professionals which is the scheme that looks at the registration of health professionals such as nurses and doctors. There were many parallel questions posed about the new NDIS system and how this will work. 

Are you eligible for the NDIS? What has your experience so far been like ?

Eleanor Kerdo

Policy Officer 

Conference Report Community Health: Making Accreditation Work for You By Sue Schreiner

Community Health: Making Accreditation Work for You  July-December 2014

Workshop held 26 September at Canberra Hospital

The workshop went from 9am-4pm with half hour lunch break.

There were 16 participants - all from Community Health (except me).

The presenter was Sue Gilham whose background is in nursing but who now is a Surveyor with The Australian Council on Healthcare Standards(ACHS).  She trains other Surveyors and has been involved in training hospitals in India, Asia the Middle East and Ireland in how to reach accreditation standards.

ACHS is one of 13 bodies whose  business is accrediting health entities’ compliance with National Safety and Quality Health Service Standards(NSQHS) and accreditation. It has a number of Surveyors, including a Surveyor who is a consumer. This organisation is the one chosen by ACT Health. Services to be accredited can choose whoever they wish and significantly, the accrediting bodies do not operate in the same way- so that what one finds acceptable another may not.

The purpose of the workshop was to explain what the Surveyors employed by ACHS expected and would be looking for when deciding accreditation of Community Services provided by Community Health - in particular looking at how Community Health could and should  comply with the Standards. Safety and quality of care for the patient is paramount. The standards and principles which apply to Acute health services also apply to Community health. The measures are the same. There is close scrutiny of claims about how the standards are met - “we look at the clinical content of the record and its quality”.

NSQHS standards consist of 10 Standards and 41 Criteria (209 Core actions and 47 developmental actions)   

Basically what the Surveyors are looking for is how the Standards are met by the organisation (ACT Health) as a whole and by each of the services. The Standards will be surveyed “by discussions with all groups. Reviews of policy and related documents,committee and departmental minutes,mandatory audits and reviews, active use of the findings, communication to senior level and to clinical teams, review complaints,clinical handovers and feedback both positive and negative; visits to community sites, talk to managers and staff members about their outcomes of care, review the clinical indicator reports; review client records for the use of screening and assessment tools. documentation of care plans and intervention, evidence of the engagement of clients in planning care.”

We went through in small groups what 3 of the Standards required. Services are required to prove how they comply with each Standard.  There was much discussion as to what constitutes proof. e.g. policies and procedures,clinical performance indicators, copies of internal and external audits contracts, department and committee quality activities staff training records, feedback and communication,keeping minutes, written records of activity, patient satisfaction surveys.

In greater detail for example against" NSQHS 1 (Governance for safety and quality in health service organisations was : “Measure of patient experience of admitted overnight patients - there could be a list of mechanisms such as surveys,interviews or focus groups used to seek feedback about experiences from admitted overnight patients where feedback is monitored within the organisation’s governance system”.

“Other Performance Measures” were complaints,incidents, near misses, safety assessments, patient satisfaction surveys.”

“Surveyor Verification” consists of; 

1. examining evidence demonstrating how the service has achieved the standards and how they have been incorporated into everyday practice
2. Interviews-staff, client focus groups, service providers, consumers, stakeholders
3. observation
4. review documentation

This is an attempt to summarise the workshop, some of it taken from powerpoint slides. Written material was given to participants and is available if you would like it.

The main points from my perspective are that Community care is judged in the same way as Acute care and that there is close scrutiny of each stage of the accreditation.It is all spelled out and available and gives Community Health clear guidelines as to what is expected. If these guidelines are followed the consumer will be well cared for.

Sue Schreiner 

Report on Primary Health Care Research Conference 22-25 July 2014

Report on Primary Health Care Research Conference 22-25 July 2014

By Joanne Baumgartner, HCCA Representative. 

I was lucky enough to be able to attend this conference sponsored by HCCA and I thank the organisation for that as it was a very useful and worthwhile conference to attend. Unlike the previous PrimaryHealth Care Conference that I attended in Brisbane a few years ago, this one was definitely aimed at including the consumer perspective in the majority of sessions that I attended. 

I started off the conference by participating in a Higher Degree Workshop where we were given polo shirts to wear with the words “Agents for Change” written on the back as a catalyst for the day’s workshops. The workshops focused on how we could get our research published and how to write for different purposes and it was a very practical and inclusive day. My reason for being able to participate is that I am currently a Masters student at the University of New South Wales. An added bonus is that I have been given a research profile on the Primary Health Care Research and Information Service, ROAR (Registration of Australian Research) website where my published works are available to read at: www.phcris.org.au/roar/profiles/1751 

Some of the workshops that I attended during the following two days included a very interesting workshop on the use of Tibetan Sound Bowls in a nursing home for people with dementia where people were accommodated in separate houses for 6-8 people and the Sound Bowls were played like musical instruments while everyone sat around a large table , placing their hands on the table so that they could feel the vibrations from the music. The results were that there was a significant drop in the agitation and medication required to subdue people as they were calmed down by the sounds coming from the bowls music. The presenters showed a video of the process of playing the Tibetan Sound Bowls and the subsequent reactions from the people residing in the Aged Care Facility. 

The conference as a whole focused on patient or consumer engagement. A very interesting and particularly enlightening speaker right throughout the conference was Professor Nancy Edwards from the University of Ottawa who presented papers on Implementation research which had the focus of being very practical in that all of her research was developed with specific outcomes as an end result and a requirement of her projects. Her main question to all of us was “How are our research methods driving the questions we ask? ”, and  “What types of interventions do we want ?”. Again I was fortunate enough to be able to attend a follow up workshop with Professor Edwards at the Australian National University as an Alumni of the ANU on the following Monday where we had further discussion on Implementation Research and this knowledge will definitely assist me with my postgraduate studies and further research papers that I may think of writing. 

Since the conference and ANU workshop I have submitted another paper for publication with the Operational Research Society in the United Kingdom of which I am a Member, based on the report that I wrote on Infant Mortality in the Australian Capital Territory 2001-2005 when I was HCCA representative on the Maternal and Perinatal Information Network at The Canberra Hospital.

I hope that this report is useful to health care consumers and again thank you to HCCA for sending me to the conference and I was glad to attend the extra two workshops which were free to me as a postgraduate student.

Joanne Baumgartner

Canberra Home Doctor Service

Many of you may be aware of the new after-hours primary health care service the National Home Doctor Service. 

HCCA met with staff from the Home Doctor Service to find out more about what it can offer in-terms of after-hours care and ask about any issues we could possibly see with their model of care and business model.

The National Home Doctor Service is a pre-existing that has been running for over 40 years in other states and territories with the service running in Canberra since August this year.

The Home Doctor Service provides house calls to people living in the ACT and surrounding areas in the after hours period. 

This is a bulk-billed service for those with a medicare card or those who are part of the Global Assistance Program (for example international students) with no out-of-pocket-cost to the consumer. If you do not have a medicare card there is a flat rate of $200 per hour, but they are looking at working with private health insurers to try to potentially cover people without medicare cards.

This ABC news video released at the start of August explains the billing model and explores the notion that this type of billing may not be the most cost- effective way to spend the health dollar. We asked the Home Doctor Service about this, particularly in relation to whether their call centre referred people to other ACT after-hours services like the Walk-in Centres. Essentially their business model relies on medicare after-hours billing code and they do not refer to other services if they can be seen by the house call doctors, however call centre staff do triage callers and refer them to emergency services if needed.

The Home Doctor Service currently works in both private homes and in residential aged care facilities. They provide electronic health care summaries to peoples regular General Practitioners or GP practices by 8 am the day after receiving the house call. They are also currently set up to upload directly to the Personally Controlled Electronic Health Record, however this is not yet active.

As of September this year the service employed eight local Canberra doctors and two experienced Melbourne locums to help guide the new practice. The number of doctors is likely to have gone up due to the high demand for these services.

HCCA asked the the Home Doctor Service about quality and safety assurance and the use of consumer feedback and was informed that they have an 80% approval rating from feedback provided via e-mail from users. They have Clinical Governance through a Canberra based doctor and are developing a Clinical Governance Committee for the ACT. HCCA has asked that they consider having a consumer representative on this committee.

The Home Doctor Service aims to see people within 3 hours of receiving a call, however due to the huge demand in the ACT the wait may be longer. The Home Doctor Service also informed us that those using the service tended to be sicker than usual presentations in other states and territories. HCCA believes this is demand is likely to be due to the history of under service in primary health care and after-hours services to the ACT community.

Have you used this service? We are always interested to hear about your experiences and to feed this important information to service providers to ensure continuous improvement!

Let us know what you think!

We are open to hearing whether this new service meets the needs of consumers in the ACT and provides better access to after-hours primary care.

Eleanor Kerdo
Policy Officer  



    

Medicinal Cannabis and the ACT Clinical Senate

Greetings from the Policy Officer Eleanor Kerdo! This is the first of several blogs I will be uploading on various health policy topics.

The topic of medicinal cannabis is currently of great interest to the community and Australian media. This is can be seen by the recent proposed trail of medicinal cannabis by NSW and ACT. 

As part of my role here at HCCA I am a consumer representative at the ACT Clinical Senate.

The role of the ACT Clinical Senate is to provide a forum for a multidisciplinary group of clinicians, health experts and consumers with diverse perspectives to share their collective knowledge in discussing strategic clinical issues and to make recommendations to the Director-General, ACT Health an

d the Chair of the ACT Medicare Local.

At the last meeting of the Clinical Senate the topic was the use of cannabis for medicinal purposes. 

In the context of the high degree of interest in this issue being expressed in the Australian community and among politicians at both jurisdictional and Federal levels, the topic’s pertinence both to the situations of health consumers and to the practice of health professionals, and the legal and regulatory barriers that currently exist to accessing cannabis for medicinal use, members were asked to consider and respond to questions relating to:

• Possible models to provide access;
• Apparent drivers for making medicinal cannabis available
•   Possible issues to be considered in the context of a proposed national trial.

As part of this discussion I was asked to deliver a ten minute presentation on consumer perspectives on medicinal cannabis. You can read my talk below:

Hello All,

Thank you so much for having me here today. I would like to acknowledge the traditional owners of the land on which we meet, and pay our respects to their elders – past, present and future. My name is Eleanor and I am the Policy Officer at Health Care Consumers Association of the ACT. I've been asked to present a consumer view of medicinal cannabis and I will say I have no personal experience relating to this issue. I think it’s also important to start off by saying that there is not one consumer perspective on this issue or in reality on any health care issue. At HCCA we are yet to establish an organisational position on this issue, however it is one that is of interest to a great number of our individual members as well as organisational members such as bosom buddies – a breast cancer support group, The AIDs Action Council, pain support ACT and Alcohol Tobacco Other Drugs Association a peak body in the ACT which seeks to prevent and reduce harm associated with ATOD, and I would like to especially acknowledge Carrie Fowlie the executive director of ATODA who joins us here today. My talk is informed by input by these individuals and groups.

This evening, I want to talk about why the introduction of legalisation to permit the compassionate approach to the use of medicinal cannabis represents an important increase in choice for consumers that is, what medicinal cannabis can mean to consumers and what are some of the key implementation challenges from a consumer perspective.

Two thirds of the Australian community in a recent ReachTel survey support the use of cannabis for medicinal purposes with highest support between the 51 and 65 year olds. For many consumers the use of medicinal cannabis is about palliating symptoms and suffering for those with terminal or serious health conditions that are not responding to other treatments. So for many it is about compassion and the alleviation of great suffering.

On the 23^rd of September ATODA, AIDS Action Council and the Public Health Association held a public forum at the Legislative Assembly on understanding evidence based options for medicinal cannabis in the ACT, The speakers and audience included academics, politicians, clinicians, consumers carers and the public. All agreed there was strong evidence for the use of medicinal cannabis to relieve great suffering. With an expert clinician stating " this works fantastically for some people who are suffering unbearably". It was an extremely interesting evening.

 For me, outside of learning more about the current scientific evidence on the use of medicinal cannabis I was particularly touched by two members of the public who shared their stories about medicinal cannabis and what these changes in legislation could mean to them. I will share them now noting that they have been made anonymous.

A 50 something man stood up wearing a suit and tie. He told us he has recently lost his wife, one month ago to an aggressive form cancer which took three months from diagnosis to her death. Cannabis was the only thing that seemed to ease her suffering, when they tried to remove it from her treatment regime after a doctor expressed concern, quickly began being unable to cope. Cannabis, he told us was the key for them in allowing his wife to have a beautiful death. It was extremely moving. He counted himself lucky that he knew where to get Cannabis through his uni days, he could make an oil for her, but not having a legal supply – buying from the pimply teenager on the corner presented it’s challenges and he wanted to advocate for a legal and safe supply to allow everyone to access this treatment and he was particularly concerned for the older population

This was echoed by a young professional looking mother her child suffered from extremely severe epilepsy that meant they had seizures almost around the clock. She knew the evidence that cannabis has been shown to help ease some of these symptoms but how to access, grow, identify the most useful strains for treating her child and prepare this for her was not something she knew how to do. A legal supply and education on this meant a possible ease to her daughters suffering.

Again this is not all consumers, we know that some mental health consumers feel and have experience that medicinal cannabis relieves their symptoms with little scientific evidence to support this and in some cases directly contradicting this believe.  We have to acknowledge that there is no one consumer or public perspective on this.

A legal safe supply is essential for many in an ideal scheme as those suffering with serious illness are often conflicted with the hope they can ease their suffering and knowing they need to engaging in illegal activity or not being able to source the drug from drug dealers in a safe or timely manner.    The legislation to allow for the limited use of medicinal cannabis is the first step to allow a choice. A choice to people suffering or watching family suffering to talk openly with their doctors, to get advice and to try a treatment that may offer them some relief. A compassionate staged implementation approach offers those identified as eligible for medicinal cannabis treatment some options now, while we move towards access to cannabis of a known quality through a legal source.

Thank you.

We know this is a topic that is of interest to many of our members and we are keen to hear your thoughts. Let us know what you think!

Eleanor Kerdo

policy Officer