CUTHILL, Mr Harvey, National Councillor, Pharmacy Guild of Australia

LEAHY, Mr Denis, Committee Member, New South Wales Branch, Pharmacy Guild of Australia

Committee met at 08:31

CHAIR ( Senator Siewert ): I declare open this public meeting and welcome everyone who is present today. The Senate Community Affairs References Committee is inquiring into palliative care in Australia and today is the fifth public hearing of this inquiry. These are public proceedings, although we may agree to a request to hear evidence in camera if we think that that is appropriate. I remind witnesses that in giving evidence to the committee they are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to the committee and such action may be treated as contempt of the Senate. It is also a contempt to give false or misleading evidence to a committee. If a witness objects to answering a question, the witness should state the ground upon which the objection is taken and the committee will determine whether to insist on an answer, having regard to that ground. If we determine that we would like a witness to answer, the witness may request that that evidence be given in camera. You also may ask to go in camera at any time.

I welcome representatives from the Pharmacy Guild of Australia to today's hearing. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. We have your submission, No. 51. I invite you to make an opening statement. Then we will ask you some questions.

Mr Cuthill : On behalf of the Pharmacy Guild of Australia, I thank the committee for the opportunity to give evidence in relation to our submission on the provision of palliative care in Australia, which specifically highlighted where we believe that community pharmacies should be engaged to achieve further accessible and coordinated palliative for Australians. The guild, as you are aware, is the national peak pharmacy organisation representing proprietors of community pharmacies—people like me. It strives to promote, maintain and support community pharmacies as the most appropriate primary care providers of health care to the community through optimal therapeutic use of medicines, medicines management and related services. With approximately 80 per cent of patients receiving palliative care in a community setting, the infrastructure and network of community pharmacies in providing support for people requiring palliative care is essential.

I will now provide a brief overview of the guild's key concerns as outlined in the submission. I look forward to discussing in more detail the issues that interest the committee. In the first instance, there needs to be a recognition of the potential role of a community pharmacist within a multidisciplinary team to assist patients requiring palliative care to remain in the home and receive the best care possible. For example, structured care plan arrangements involving pharmacists need to be formalised. I highlight to the committee that there would be significant benefits to the government and people requiring palliative care and their families to fund dose administration aids, DAAs, for this population in line with the Department of Veterans' Affairs DAA funding model. This would provide a greater capacity for patients to remain living in their own homes and result in reduced hospitalisation and a better quality of life for the patients and their carers. It would also recognise that these services are labour intensive, requiring significant professional input from pharmacists.

Community pharmacists can make a valuable contribution to the provision of palliative care to terminally ill patients by assisting with appropriate pain and symptom control. Further, a palliative care patient's clinical outcomes will benefit from management by a multidisciplinary primary care team involving a community pharmacist. At this point, I will hand over to my colleague, who will highlight issues with access to palliative care medicines.

Mr Leahy : Good morning. I would like to focus on the schedule 8 medicine regulations, because there are differences that apply across jurisdictions that can hinder the access of palliative care patients to medicines. This is particularly problematical in communities on the border or across territories where patients may travel across jurisdictions to access appropriate care. I can provide the committee, if you wish, with a table comparing the schedule 8 regulations. It highlights issues across Australia.

Senator MOORE: That would be very useful, Mr Leahy.

Mr Leahy : It is a very comprehensive document. Quite obviously, streamlining this or changing the regulations would greatly assist people to get their medication. If you are going to have a national monitoring scheme for opioids, you should have regulations in a standard format in place before you start.

Senator BOYCE: It would not seem to require a lot of wit to fix it, just a bit of application.

Mr Leahy : I am not sure why it has not happened in the past. To have this legislation in common across jurisdictions would facilitate the care of patients. The disposal of controlled drugs in a proper manner could be achieved by having a safe disposal system put in place. Safe disposal is essential to avoid accidental poisoning of household members, particularly children, medicine abuse and toxic release into the environment. As such, the guild would recommend that a return system be considered. That would assist in removing high-risk medicine such as schedule 8 medicines and cytotoxic medicines from households where they are no longer required.

In order to maximise comfort for patients in the last stage of their lives, we should rationalise and optimise medicine regimes as much as possible. The community pharmacy can assist in identifying pharmacological therapy solutions. In terms of cost and effectiveness, such mechanisms would include syringe drivers and preparations that may be needed in palliative care. We are concerned that the preparations that may be prescribed to patients receiving palliative care listed on the PBS may not be totally adequate. There are medicines commonly used for palliative care that are not specifically registered on the Australian register of therapeutic goods for this purpose. We believe that this issue could be addressed.

In addition, the dual listing of medicines used in palliative care should be made possible and the palliative care section on the PBS should allow quantities and the number of repeats appropriate for palliative care to be included. It should also include the use of syringe drivers. Syringe drivers should also be listed on the PBS to facilitate the appropriate delivery of pain management.

Finally, other key issues that we would like the committee to consider include additional training for community pharmacists on palliative care. This should involve other health professionals. There should also be a focus on addressing any mental health issues that palliative care patients and their families might have. We would envisage and hope for global palliative care funding being made available to include such things as wound care, compound medicine and nutritional assistance. We believe that this could be achieved by the expansion of the palliative care schedule that already exists. Any controlled drug monitoring system should take into account that there will be high use of opioids by this particular group of people during the palliative care phase. Thank you very much for taking our submission and listening to our opening remarks. We are very happy to answer any questions that you may have.

Senator MOORE: Is that the Pharmacy Guild tie?

Mr Leahy : Yes. It is very distinctive.

Mr Cuthill : I agonised this morning as to whether to wear mine. I have also been chair of the Cancer Council of Australia. I did not know whether in this place the Pharmacy Guild tie or the Cancer Council tie would have more influence. I opted for the corporate tie in the end.

Senator MOORE: It has the same colours as a school in my home town. Where are your pharmacies? I know that you are talking on behalf of the guild. But this committee has looked at the fact that a lot of a person's care depends on which part of the world that they live in. You both of pharmacies. Where are they?

Mr Cuthill : I have an interesting mix of pharmacies. They are all community based pharmacies but some of them contracts with hospices. My wife is involved in palliative care as a community health sister, so there is a broad spectrum of knowledge in the household. My pharmacies are in Launceston and in Hobart.

Senator MOORE: We hear a lot about Tasmania.

Mr Cuthill : We have contractual arrangements with the Little Company of Mary and Calvary Healthcare, who provide palliative care for the state. In my home town of Launceston they also provide palliative care for the state hospital system. That is a contractual arrangement. End-of-care patients in particular are cared for within the private system under that arrangement. On a day-to-day basis, I have a high degree of interaction with palliative care. As I have previously mentioned, I was also chairman of the Cancer Council, so I have some involvement from that angle as well.

Mr Leahy : My pharmacy is situated in Stanmore in inner city Sydney.

Senator MOORE: Totally different.

Mr Leahy : It is a totally different from Launceston. We tend to have a variety of people who live in accommodation that would be classified as boarding houses. There are a number of people who are gentrifying the area as well. We have come into contact with the need for palliative care for people living in one-bedroom apartments by themselves. We work with palliative care nurses and doctors to try and deliver the best outcome possible in fairly poor circumstances.

Senator BOYCE: That is where there is no natural unpaid carer.

Mr Leahy : No. You might see a relative occasionally when you go there. I will not let any of my staff deliver medicine. I take the medicine, because it can be too upsetting for my staff. When they can link in with palliative care nurses and doctors the people get offered what is available currently on the scheme. But there are some limitations on what can be offered to help them. Somebody who may have adequate income or family support may have access to other medications, devices or aids that are not generally available to everybody.

Senator MOORE: One of the things that has come out of the inquiry is that there are so many variations of care across communities. You have touched on this through that discussion of your own regional areas. There are people who are formally receiving palliative care services through the state provided services, which may be contracted services.

My understanding is that most of those actually arrange their pharmaceutical needs through their personal contracts. So if you are being cared for in a palliative care service, part of that service will be the pharmaceuticals that will be needed by you as the patient. If you are not getting formal palliative care, it will be up to you and your doctor to arrange what drugs you need—and all of that kind of thing—with your local pharmacy. Is that right?

Mr Cuthill : That would be a fair statement. There are levels of categorisation of the drugs and of the support that patients need. As you move into the more specialised end, and the variation end, you do tend to find—particularly in a place the size of Tasmania—that there is a degree of specialisation. For example, because we as Harveys Pharmacies already service the hospice and hospital space, a number of my other pharmacy colleagues will say to patients: 'Look, we can organise this through Harveys Pharmacies.' Having said that, we try to work with them so that the service delivery is via the local pharmacy.

At the end of the day, there is more to this than just carting the stuff around to the door. There is a high degree of emotion and, often, a high degree of family involvement; although as Dennis said, in his environment there is a lack of family support. Our community is a more family orientated community, I would suggest. Many of the families want to be closely involved at this time in the patient's end-of-life care, so they sometimes take a more active role in the acquisition of the patient's pharmaceuticals and so forth. And you have also got palliative care teams. You are absolutely right, it is a mixed bag of service provision. One of the big issues is: when is a patient really palliative? There are plenty of definitions. I am sure you have had them provided to you.

Senator MOORE: I think that is the first chapter of the report.

Mr Cuthill : Indeed. But the question is: is anybody prepared to categorise that patient? As far as access to pharmaceuticals goes, there is a palliative care pharmaceutical schedule, but there is a definition around who is eligible for that, and there are sometimes bureaucratic hurdles put in place by the authority based system. If the patient could be formally categorised as a palliative care patient, that entry could be made much easier. We are moving to electronic pathways—with the exception of those that decide to opt out—and I think it would be fair to say that most of these patients would prefer to have some sort of categorisation so that they are able to easily and simply access all the support services in the community. That is what the patients want and that is what their supporters want. I do not think they would be too fussed about a formal categorisation as such.

Senator MOORE: Further, is it correct that the contracts you have with the Little Company of Mary Health Care and Calvary Health Care—which have formal palliative care services—have given the pharmaceutical responsibilities for those services to your group? They do not have in-house hospital pharmacists issuing—

Mr Cuthill : No, they do not. We have a contractual arrangement. In Hobart, we have an in-house pharmacy. In Launceston, because of the size of the facility, it is external. Having said that, I have pharmacists and clinical pharmacists on the premises seven days a week and 24 hours a day sometimes. But we do maintain a specialist range of drugs specifically for those patients. We also have community pharmacies, which service a different client base. And, as I have said—and uniquely in Launceston—we also look after the public sector palliative care patients because they do not have a palliative care unit at the Launceston General Hospital. It is—

Senator MOORE: So that is totally contracted out.

Mr Cuthill : a contractual arrangement with the Little Company of Mary Health Care.

Senator MOORE: The focus of much of your submission is the need for the skills of pharmacists to be taken into account in the development of effective palliative care, that would seem—

Mr Cuthill : The core of our submission is that pharmacists need to be involved in collaborative groups. Inherently, once you are involved through, say, a contractual arrangement with a hospital which extends out, you automatically become involved in that group—

Senator MOORE: That is what I thought.

Mr Cuthill : because you become involved by contractual arrangement. That arrangement, which works well in that setting, needs to be extended further out into the community setting, because it is a collaborative behaviour that folk want. But, in small towns, like the one I practise in, often they are the same personalities. It is often the case that the people who are involved in the community team are the same people who are involved elsewhere; they may have worked in the hospital or worked in that sector in the past. Support workers and psychological support and so forth are often provided.

Currently, with my Cancer Council work, we are building a new facility in Launceston based on the Maggie's Centres, which is a British model of care for patients, particularly cancer patients, which provides a much more extended service—not only for palliation but for those people living with cancer. We are certainly working actively on that in our community. We have had some federal funding, as well, to construct that building.

Senator MOORE: On page 8 of your submission you list your perspective of what the core skills of pharmacy would be in palliative care. They all make sense. I am interested in the point, 'provision of locally relevant information and other healthcare services and resources'. We have had considerable evidence that one of the major issues for families and for people who are looking at making decisions is that there is not one place that will be a one-stop shop. They are constantly searching for information and finding out too late. I know the role that pharmacies play in regional centres. Is it a formal recommendation that pharmacy could have a list of local health places, or is it just that by practice individual pharmacists do it?

Mr Cuthill : I think it could be formalised.

Senator MOORE: It is not now?

Mr Cuthill : No, it is not, now. That is one of the keys of our recommendations: it could be a much more formalised process. It would obviously involve some additional training. It would also obviously involve some additional resources.

The point that we have always made about pharmacies is that we are pretty accessible. We are very easily one of the most accessible health services within the community. That is for a variety of reasons; the predominant one is that we do not charge to come in the door. We charge to go out the door! We are very accessible and it would be very fair to say that we could provide much more resource in this area. There is no doubt about that at all.

Mr Leahy : I think if you developed a care plan or a module that would be best practice for people—it would have a number of elements to it—the advantage in developing that now would be that as you get a corporatisation of medicine they are more likely to take a structure approach to delivering palliative care because they will see that there is a module for delivering it. The days of the family GP looking after somebody for their whole of life are probably fading away now. There are very few people who are practicing alone in the community. So we probably need to look to establishing modules of coordinated palliative care in the way we deal with other things like diabetes and other disease-state managements.

So our recommendation is that the guild would like to be part of that process so that it can be a universal database of information to assist. In an electronic age that should be made available to people.

Senator MOORE: It is certainly my understanding that the relationship with servicing and costing of pharmacies is that that is a process through the pharmacy agreement with government that they do every five years or so. Have the issues of palliative care and pharmacies been discussed to be put into a formal part of the agreement between government and pharmacy?

Mr Cuthill : Not in specific mention. For example, under the guild-government agreement that you are referring to there have been educational projects that have been funded, out of our research funding and so forth, to look at the role that pharmacists play. I have participated in some of those personally. Those have been looking at the extended role of pharmacy in the palliative care setting.

As to whether there are formal agreements and key performance indicators in relation to palliative care—no. Having said that, pharmacy has been very active in extending the palliative care schedule of the pharmaceutical scheme. We have been highly critical of the entry points, which have required an authority prescription. We have suggested that if a patient was classified as needing palliative care that that should be a much simpler process.

We have also tried to be proactive in the areas of medicines that are not necessarily approved for use in palliation. But we have not, as an organisation, individually sponsored those products to go forward to the TGA to be approved—and then ultimately through the—

Senator MOORE: Have you ever done that, as a guild?

Mr Leahy : No.

Mr Cuthill : No, we have not. We have urged and encouraged other organisations to do that. We have suggested that bodies like Cancer Council Australia could be involved in that.

There is an increasing awareness in some of our pharmaceutical community about the so-called 'off', and I am sure you have had it mentioned to you in other submissions—off-licence use of pharmaceuticals which are very widely used. In personal practice, you could say that some of the most widely used drugs in palliative care are not used for the purpose for which they were originally applied and approved. That would be a very true statement.

Senator BOYCE: As Senator Moore alluded to, we have had a lot of evidence suggesting that families often end up being the case managers for people with palliative care needs, because there are so many things to find out and the person is certainly not in the position at the time to do so. Who would the Pharmacy Guild perceive to be the case manager for a palliative care patient?

Mr Leahy : I think you need a formal arrangement for a care plan. Certainly the GP would be pivotal to it. Basically, the management of the patient for their pain is reliant on the GP giving appropriate palliative care. I would have thought that the pharmacist would be in one of the roles played, and the nurses. I do not know that you would have the facilities to have a palliative care coordinator as such, given that the events are obviously going to occur all the time but not as frequently as having a person on other medication for the long term.

Senator BOYCE: This would of course involve bringing in other people such as therapists, psychologists and services such as spiritualists and the like. That is where the knowledge base for individuals can be such a daunting prospect. Mr Cuthill, you said that you should formalise the pharmacy's involvement in this. Where does the pharmacy fit in with the case management scheme?

Mr Cuthill : I suppose that my view, not necessarily that of the guild, would be that pharmacists tend to be pretty good communicators—that is the nature of the business—and that we would definitely, if we were in a formal case care arrangement, be able to be great communicators. We usually have a very good relationship with our clients. Most of our business, quite frankly, is based on repeat business, and repeat business equals involvement with families, communities and whatever else. We are able to speak the language of both professional carers and families. One of our great roles in life every day in a pharmacy is explaining and in many ways coordinating care. We often, daily or hourly, have to explain how to take medicine, what time to take it and how to get it, and ask, 'Can you afford it?' The day-to-day issues of case management are our core business, quite frankly. What we have not been involved in in the past is formally sitting in little isolated spaces somewhere, well away from the patient, making judgments about what is or is not good for them. What we have been good at is interacting directly with patients and their families and, indeed, their carers. You asked me about my personal experience. We enjoy an amazing relationship with our own palliative care teams, our palliative care physicians, and GPs, who we often think need a little bit of gentle hinting and advice about how they might move to the new world.

Senator BOYCE: You might have already answered my next question. A number of submitters, including Palliative Care Australia, have made the point that it is the person receiving palliative care and those who love them or support them that are the 'patient', so to speak, in palliative care cases. Has the guild thought about that extended model about what a patient looks like? If so, how would you support them? You have probably started to answer that question already, Mr Cuthill.

Mr Cuthill : Obviously major interaction with your patients is through their family. Part of the reason is that you are not in the business of doing too many home visits, and that is where the patient is often not able to come. Having said that, a number of palliative care patients are still on their feet and are still anxious to have some additional treatment. That is the whole purpose of the exercise: keep them in the best possible way to do that.

A friendly 'hello' is often as good as two grams of morphine; it is just as important. When you formalise something and say, 'That is the coordinator and everything has to go through them,' that is not the truth. The coordinator is there to ensure that everybody is talking to everybody else. That is what coordination is about. We are not too bad at that. That has been one of our skill sets.

Mr Leahy : If you use the same model that exists now for care plans, the pharmacy and the nurse and the doctor would all be part of the care plan. That is not actually a delivery of a care plan; it simply identifies the elements that the doctor has put in place that results in the management of that patient. From our point of view, if we were actively involved and had a contractual arrangement to deliver, making sure the medicines are on time and looking at other things that are going on in the family, that formalisation of the case-conferencing and the care plan would need to be blended into a palliative care care plan that would be a little different to an ongoing care plan, which usually is the review of the patient's progress to make sure that they have a number of elements that are for their better outcomes. At the present stage, pharmacies are involved in case-conferencing for patients and the case conference of the care plan simply means that you get a fax to say you are on the list of the carers. I think that it would be a pity if our palliative care plan was simply that we were on the list of the carers. We need an active role in making sure that certain elements are provided and there is an interaction between all parties.

Senator BOYCE: You commented before that syringe drivers should be on the PBS. Why aren't they? Have they been rejected? No-one else has ever suggested that.

Mr Cuthill : I think it goes back to the question that was asked previously about the guild-government agreement. The focus of the Pharmaceutical Benefits Scheme has always been about pharmaceuticals. In fact, over the years the guild have made recommendations that that needs to be expanded. There are ridiculous circumstances at the moment. For example, on the Pharmaceutical Benefits Scheme you can get nebulising solutions but you cannot get access to nebulisers. What a nonsense. We have argued that for many, many years. There are drugs that are already on the Pharmaceutical Benefits Scheme that are appropriately used within syringe drivers by there is no access to the syringe drivers themselves. The means of using and administrating drugs in the most efficacious manner for the patient should be part of that scheme. We have long argued for things like 'nutritional'—and when I use that word I am not talking about vitamins and minerals—supplements such as food supplements and so forth. The UK equivalent of the PBS has an extended schedule. I can well understand that the PBAC have issues about, as they call it, slippage or whatever outside the scheme. However, the palliative care schedule provides an excellent example of where they is not necessarily the opportunity for slippage. If a patient is palliative and the patient is classified, they should have access to these sorts of things. It is a nonsense not to have them, quite frankly.

Senator MOORE: How much does a syringe driver cost?

Mr Cuthill : About $180 to $220, probably with Pharmaceutical Benefits Scheme pricing structures. Under the model that we appear to be working under at the moment, about sixpence!

Senator BOYCE: About $180 per driver?

Mr Leahy : Yes.

Mr Cuthill : The way the prices are coming down. It may well be a loan arrangement. Most syringe drivers at the moment that are used in the community are provided through loan schemes. There would need to be a little innovation there. Nutritionals would quite simply be, 'You can get six bottles of this, two bottles of that.' It would be quite easily defined—no great issues there. Nebulisers could be the same. There are nebulising solutions that are very useful in palliative care. It could be quite simple. Salty water is pretty good for patients; not necessarily drugs. It is a nonsense that that schedule does not include other things which we provide in our daily lives to every other patient but are not able to provide in a subsidised way or care plan.

Another thing on care plans is that the guild do not see a care plan as a payment methodology. The guild see a care plan as an access methodology. If a patient is included in a care plan, it is a way of accessing pharmaceutical care and so forth; it is not necessarily part of the structure.

Senator BOYCE: We had evidence earlier that there can be issues for palliative care patients in rural and regional areas getting drugs in a timely way or pharmacies being in a situation where they can hold drugs that they may or may not be required to dispense. Could you talk about the guild's view there?

Mr Cuthill : We are more than happy to. There is as an element of the Pharmaceutical Benefits Scheme a community service obligation.

Senator BOYCE: That is why I was surprised to hear that it could take up to 48 hours to get drugs.

Mr Cuthill : I have sat on other committees in the past, the palliative medicines advisory committee for the PBAC and so forth, where we have had this issue but there has been limited evidence. I think yes, at 10 o'clock at night there will be circumstances where you will not have enough morphine tartrate or whatever, which is the most solubilised form of morphine that is often used in syringe drivers. There is often an option of subcutaneous injection overnight or something like that. As to the longer term difficult availability, I am suggesting that in most cases—

Senator BOYCE: People were talking about perhaps 48 hours or so.

Mr Cuthill : I would respectfully suggest that it would mostly be better than that. There have been discussions in the past whether there should be a core pharmacopoeia of drugs—and the palliative care schedule of the PBS could be the basis for that, one could argue—which could be centrally held. My understanding is that the majority of the pharmaceutical wholesalers and distributors in Australia would keep in stock regularly most of those drugs quite adequately. I think where you do get some supply problems is the off-label use where there are few drugs used. You also get practice. For example, in my city recently we had an issue where we did not have one particular palliative care drug, hyoscine hydrobromide, widely used in other settings, because in our city it is not used by the palliative care cohort. In other cities, yes, it is still widely used. When I look at Australian warehouse withdrawal figures, which are the gold standard of what is selling in the country, it is widely used but in my city it is not used.

Senator BOYCE: So it is partly your knowing the prescribing habits of the practitioners in your city.

Mr Cuthill : Absolutely.

Mr Leahy : It could well be that the person's dose has increased quite substantially. They are not getting adequate pain relief from the medication they are on and they go to a strength that is almost double. The pharmacy may not have anybody else on that. Providing that you know, on one day you could actually increase the person's medication with existing meditation, so the transfer to the new medication would commence the next day. So there are ways of managing it. I do believe in general most of the medications would be delivered the next day if you ordered today. In country and rural areas you would expect delivery by tomorrow.

Senator BOYCE: Would you anticipate that GPs or other practitioners are generally good at thinking, 'Gee, I'd better let the pharmacist know I have prescribed that'? Or do they tell patients to tell people that?

Mr Leahy : That is a very rare—

Senator MOORE: This is going to be on Hansard, Mr Leahy.

Mr Leahy : That does not often happen.

Senator BOYCE: That is a very polite answer.

Mr Cuthill : Changes in the patient's drugs during the course of palliative care are often preconsidered by the prescriber but they often do not convey that: 'I'm considering that as an option. Do you need to get ahead of the mark?'

Senator BOYCE: So that is one of the things that a collaboration might assist with.

Mr Cuthill : Absolutely. But during that collaboration you would also say, 'That is 24 hours, that is 12 hours and that is 14 hours.' You would know that instantly. You would understand that our stock holdings and our regular uses are all now driven by electronic algorithms of previous use and so forth. If you go outside those sorts of patterns of usage, that is when you will cause temporary issues. Denis is quite right, though, that the system is basically geared for, at the absolute worst, a 24-hour turnaround. If there was an absolute need, there are always ways and means by which you can source certain drugs, sometimes a little bit outside the square but there are certainly ways in which you can do it. Your experience in doing that in an appropriate and timely manner also gets back to experience, might I say. One of the issues I am sure you have had put to you is that there are a number of patients who receive palliative care where the practitioners involved do not have many palliative patients within a given period of time.

The higher and more experienced you are, the better you are at solving these problems. It is like life—you have done it before; you can do it again. It is no different, really.

Senator BOYCE: You have given evidence here about the inconsistencies with drugs between states and so forth. Are you able to give us an example from your own experiences, either of you, of this happening?

Mr Leahy : The most obvious one is where you have people living on the border where the regulations for notifying continued use across New South Wales and Queensland are different. It is my understanding that the Northern Territory, which had national registration of prescribers, allowing a person who was nationally accredited to prescribe in the Northern Territory, is going to go back to the situation where not only does the prescriber have to be nationally registered but they have to be resident within the Northern Territory to prescribe schedule 8s. That is a pretty retrograde step on behalf of getting easy access. People may go to Adelaide for some care and the doctor may write out a script there and it would not be valid if the person went home to Alice Springs or somewhere like that. So there are issues like that. That table we left with you would certainly have somebody sitting down for many hours working out the solutions to each of the regulations there.

Mr Cuthill : The problem has been compounded in recent times.

Senator BOYCE: Who should fix this?

Mr Leahy : I think it is part of the Commonwealth initiative. It would ask for the states to have uniform regulation for the supply of schedule 8s. It is a common-sense approach and a lot of other things under COAG have been established to deliver a uniform set of rules. Providing the Commonwealth were putting a strong case that this was needed for a universal control system as well as for other more humane and medically based conditions, that argument should certainly win the day. I think the Commonwealth would need to take the lead role.

Senator MOORE: What is the argument against it?

Mr Leahy : There is no argument against it, except the states like to control what goes on. The argument the states could run is that, even though there would be a centrally based scheme of approval, if something went wrong they would have to clean it up. They would like to have control within their own states to make sure nothing goes wrong that would be adverse to the patient. So you have an issue there of the cost to the state if there is a misadventure, as opposed to an argument about the universality of availability. You would probably need to address those questions about what the funding mechanisms are to monitor at a state level, as opposed to having regulations that are all-encompassing across state borders.

Mr Cuthill : Having said that, the first step in the process has been put into place. We now have national registration of health professionals. We all have a number, whether we like it or not, and that is already in place. There are linkages in our dispensing systems and our recording in Tasmania and narcotics are recorded live to the state health department. It is a model that is going to be rolled out around the rest of the country as a government initiative. But we report live dispensing of narcotics back to both the patient and the prescriber. We have national registration of prescribers.

The problems and the patient issues that Denis talks about—you asked about personal circumstances—are that we have a number of patients who move from jurisdiction to jurisdiction and they complain bitterly that they cannot have narcotics dispensed on a legitimate prescription written by their own doctor. The doctors say to the patients, 'But I am nationally registered now—everything is fine.' The answer is: 'I am nationally registered now—everything is fine. The state legislation has yet to be dragged out of the dark ages and amended to ensure it is fine.'

We have just rolled out a new initiative within another part of the Pharmaceutical Benefits Scheme, and that is paperless claiming for continuing medication of patients within nursing homes. The federal legislation, as I understand it, and the funding mechanisms and so forth have been put into place. The states are yet to enact legislation to enable it to occur. This is the same issue. The schedule that we provided to you has that unique header across the top. They have every state as a different thing. Pharmacists now have national registration. The doctors have national registration. All that needs to happen is for the whole thing to be aligned. It is no more complex than that.

CHAIR: I have a final question about off-label use. Can you give us an indication of the size of the issue? We are obviously not just talking about a few drugs here; from the evidence we have received we seem to be talking about a lot of pharmaceuticals. What would be your estimation?

Mr Cuthill : With this august company and with buttons being pushed upstairs, I am anxious to give you numbers. I would respectfully suggest you could be looking at between 30 and 45 per cent of prescriptions that are dispensed in this space could well be for off-label use.

Mr Cuthill : For example, the hypnotics and benzodiazepines that are used have often been approved for sleeplessness or anxiety but in fact in this space are used for delirium, tremors and something similar, and on and on it goes. Quite a substantive volume of the drugs that are used in this space are used for so-called off-label use. It is quite a legitimate use. There are some connotations out there that it is illegal. It requires extra work on behalf of the prescribers to provide adequate patient information and that is that you need, as I understand the law, to have an informed patient in this instance. In the case of palliation, that is sometimes quite a difficult space to go into—to have a patient who is informed, if you are using an end-of-life drug for something like delirium, is an extraordinarily challenging circumstance; good luck.

CHAIR: We are out of time, Senator Boyce, but do you have any questions you want to put on notice?

Senator BOYCE: It is probably a more difficult one to answer on notice but, if you could, you talk about pharmacists providing domiciliary pharmaceutical care. I think I have a picture of what that looks like but I would very much like a picture of what a pharmacist who provides domiciliary pharmaceutical care does, how they do it, how regularly they do it and who else would be involved in delivering et cetera.

Mr Leahy : I will take that on board.

Mr Cuthill : We have a formalised medicines review program where we have an obligation and we make that—

Senator BOYCE: I am more interested in what exactly it looks like. I come on Wednesday morning and this happens—that sort of thing.

Mr Cuthill : 'Late home for tea' is a good example of practical domiciliary service for palliative care patients.

CHAIR: Thank you very much. That is a small bit of homework we gave you. Your time here and your submission are all very much appreciated.

Mr Cuthill : Thank you.