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Standing Committee on Health and Ageing
Dementia: early diagnosis and intervention

WILLIAMS, Mrs Lorraine, Regional Manager, Sue Mann Nursing and Community Care


CHAIR: Welcome. Although the committee does not require you to speak under oath, you should understand that these hearings are formal proceedings of the Commonwealth parliament and giving false or misleading evidence is a serious matter and may be regarded as a contempt of parliament. I now invite you to make an introductory statement before we proceed to questions.

Mrs Williams : I am here on behalf of Sue Mann herself, who unfortunately could not make it today. I would like to give a brief overview of the nursing service. The nursing service was established on the Central Coast by Sue Mann in 1984. It has flourished over the years, going from a one woman home nursing service to an industry leader in community care. Sue has guided the staff we are working with. With her leadership and pioneering vision in the home nursing industry, the service has grown and thrived through her passion and her commitment to clients and staff. Sue takes a lot of pride in selecting her staff. She only has staff working with her who are compassionate and caring to clients and to staff as well.

Today Sue is the largest community care provider in the Central Coast region and a leading provider in Australia. Sue Mann's nursing service delivers to over 1,500 clients on the Central Coast through a range of Commonwealth and New South Wales government funded community care programs and we employ over 150 staff. As a family owned business run by people with a strong attachment to the local area, Sue's nursing service has focused its energy and expertise exclusively on providing a superior level of care to the ageing population of the Central Coast.

We have a range of funding. We have HACC funding. We have clinical nursing, personal care, social support and domestic programs. We also run a dementia specific HACC funded program. We have CACP packages for low level care clients and EACH packages for higher level care clients.

That is basically an overview of the service. I have lots of stats as well. I do not know if you want to ask about those.

CHAIR: Perhaps instead of going through all those stats you can table them and we can then use them as evidence. We will table that at our next meeting and it will become evidence for our report.

Mrs Williams : Okay. These are the stats for our nursing service as of yesterday.

CHAIR: Thank you. I will now start our questions. Once a client is diagnosed with dementia, how do the staff assess the needs of that particular client? Could you run us through the process that is followed. How are the client's needs followed up and what interaction do you have with carers and health professionals? How do you connect them all? Once they are diagnosed and have come to you, how do you assess the needs? What is the process that takes place and how do you connect them with health services for their other needs?

Mrs Williams : Of the 1,500 clients that we have on the Central Coast, there are not a lot who have been formally diagnosed with dementia. In our stats you will see there is actually only a low percentage that do have a formal diagnosis, and then there is another percentage that have an informal diagnosis. We get referrals from GPs, families, community-care access point, geriatricians and hospitals, and we do people that are going on to packages that have previously been assessed by the aged-care assessment team. Some of those do have a formal diagnosis. What I particularly do with Sue Mann is follow the aged packages through, which is a high-level care. We get an ACCR from ACAT and then I do an intake assessment. To do that we do lots of homework; we talk to providers that are currently involved with the clients, we talk to families, we talk to GPs and we establish a really clear picture of the client themself. Obviously, we have to wait for a package to be available; there are long waiting lists, which are in the stats as well. Sometimes people can wait up to three to five months to get onto packages. But with the HACC services we put services in place and help with personal care. There is SSD—the Dementia Support Program—we help with monitoring, shopping, meal preparation. Basically, we follow a client right through.

We try to put staff in; we use person centred care. We take a lot of time to get to know the client and what makes them tick, and then we try to put in staff who may have some interest that could help that client. We network a lot. We liaise with lots of other service providers, we encourage dementia support groups, we work with the mental health people a lot, and they are very supportive of us when we need it. We get referrals from geriatricians—they send us really good assessments. We use a lot of assessment tools ourselves, and obviously we review and evaluate when we have programs in place.

CHAIR: You would obviously have clients who have been diagnosed earlier than others. Do you see a difference in the quality of life in the—I don't want to use the word future—are there things that can be put in place through the care you are giving them which betters their life compared to others that have been diagnosed very late or later.

Mrs Williams : I guess I see the advantage of early diagnosis in that it gives people the opportunity to deal with what they are going through. You can support them with advanced care planning and really help them through the journey of dementia. Some people do not ever get diagnosed—that is just how it is. With a lot of things to do with getting a diagnosis, you really have to do your homework: it is looking at the big picture, it is talking to families and finding out the history of when they started to notice things happening. It is not something you can pick up on a visit. In support of a lot of GPs, I see a lot of clients go to GPs. The family takes them, they are well dressed for the day, they might have had breakfast that morning and they present really well. But we as community care nurses see the real picture. We know that they may be hydrated on that day or they may be dressed beautifully, but we see the other six days a week when that does not happen unless they are supported through having to be presented that way.

Ms O'NEILL: How easy is it for you, with those assessments and observations you are able to make over a longer period of time, to feed into the GP and provide a perspective?

Mrs Williams : It depends on how receptive they are to our doing that.

Ms O'NEILL: So there is no formal process?

Mrs Williams : We have to be very careful not to be seen to be stepping over, but we do. We put it out there if we are concerned and we do put our assessment tools out there.

Ms O'NEILL: Can you talk me through a process of—where is the line you don't cross? What is the process if the line disappears and you are allowed to intervene, how does it work?

Mrs Williams : I think, working with Sue Mann, there is hardly a GP on our coast who does not take our calls. They will speak to us and we can send our assessment tools across. It is just communication—it really is communication.

But you can come against a brick wall; families sometimes do not want a diagnosis, either. They do not want to hear that someone is living with dementia, so that comes into it as well.

Ms O'NEILL: I will not ask about the family perspective and why, but I am still not clear about this process of you having your own diagnostic tools.

Mrs Williams : Our tools would support a diagnosis of dementia; the geriatricians make that diagnosis.

Ms O'NEILL: Good. So once you have this documentation that would support a geriatrician with whom would your first point of contact be?

Mrs Williams : The GP.

Ms O'NEILL: And do you provide these observations about people's behaviour—I am assuming that is what it is—and family feedback?

Mrs Williams : Yes.

Ms O'NEILL: So it is quite a full piece of information, much fuller than the doctor could get in a short period.

Mrs Williams : Totally.

Ms O'NEILL: Say I am a doctor who is receptive to that and you send it to me because you have built this relationship of trust over 20 years. Then what happens?

Mrs Williams : The GP would refer to a geriatrician.

Ms O'NEILL: So they take that on board and refer it along. How long is the process then? What happens then?

Mrs Williams : I do not know exactly how long it is. Sometimes it does not take that long, but I do not know the answer exactly.

Ms O'NEILL: Hopefully, we will be able to ask a little bit later on about what happens after the information moves on from you. How many of the people you are looking after would you find in that situation where you are able to have a look and think, 'There could be dementia here'? How many of your clients?

Mrs Williams : If you have a good registered nurse out there, or the care workers, you can pick it up. You get to know the client and you see the signs. You can look through the fridge. We are very privileged in what we can do; we are in people's homes and we can pick up if they are having delivered meals and you see fridges full of delivered meals that are not eaten, or out-of-date food. If they are not washing or showering, if they are incontinent and pads have been hoarded and not discarded properly—these are the kinds of things we see.

Ms O'NEILL: In terms of the training you offer your workforce would you say they are quite skilled in being able to observe behaviours and make the connection with that and dementia?

Mrs Williams : Yes. The model that Sue has in place has registered nurses that case manager the areas, and AINs do the care work. We do the care work initially to write up a plan. All the staff do dementia training through Handicare, and there are always lectures happening on professional boundaries in services. We are very big on education. The staff who work for Sue Mann are really up-skilled.

Ms O'NEILL: You mentioned in particular the EACH high-level packages. We have EACHD packages as well. Do you have any EACHD packages?

Mrs Williams : Yes, we have 22 EACHD packages.

Ms O'NEILL: And are they separate from your EACH high-level packages?

Mrs Williams : They are.

Ms O'NEILL: Is that sufficient to meet the needs you have?

Mrs Williams : No. You have only to look at the waiting list to see it. At the moment I have 52 clients on a wait list for my EACH packages. That is EACHD and mainstream combined.

Ms O'NEILL: How many of those do you think would be EACHD?

Mrs Williams : From memory there are 14 EACHD packages.

Ms O'NEILL: And how many on the EACH high-care packages would be people who may not yet have been diagnosed with dementia?

Mrs Williams : There are percentages there that tell you that. It is a high percentage, and that is because the diagnoses are not there.

Ms O'NEILL: But in your observations you are able to organise your planning around a loose diagnosis that each person has.

Mrs Williams : I have been setting up the packages with Sue as long she has had them, which is six or seven years. To be honest, having that diagnosis of dementia is not the be all and end all. The clients get the same care whether they are on a mainstream package or an EACH package. If they need that level of intervention they get it.

Ms O'NEILL: Thank you so much for saying that. At the practical level you are able to respond and diagnosis does not unleash a different range of responses.

Mrs Williams : No. In some cases, having that diagnosis undoes families. The sad thing is they seem to need that diagnosis to get the extra bit of funding.

Ms O'NEILL: When you can see a diagnosis would you say it was at a developed stage rather than at an early stage?

Mrs Williams : You see both actually. You see it early on—you see it when it is happening progressively and you see it, obviously, end stage as well.

Ms O'NEILL: If you see somebody and you think they are in the early stages of dementia and you send your notes, would you say, 'We think it's early,' as opposed to 'We think it's—

Mrs Williams : We have to be careful. We cannot actually make a diagnosis; we can only suggest.

Ms O'NEILL: I understand that you need to be careful, but I am trying to think about the possibility—

Mrs Williams : We can be forceful in putting our point across. We do not sit back if we think something should be happening.

Ms O'NEILL: If dementia is picked up early in somebody—I think Steve asked this question—can you really see there is a very different pathway if they get connected early to the care? What is different about it?

Mrs Williams : Inasmuch as they are aware of it and they can put systems in place. It is more holistic. They can plan for end stages, as opposed to people who have been picked up late, who were never picked up or who were never given an opportunity to make choices to end stage of life.

Ms O'NEILL: What about medical intervention? How does that change the life experience?

Mrs Williams : I do not know the stats on medication. You would have to speak to a GP about that. I think the fact it is community orientated, it is more hands-on, more big picture stuff that I kind of have good knowledge of.

Ms O'NEILL: Thank you.

CHAIR: Thank you for giving evidence today.

Ms O'NEILL: Is there anything else you want to add?

Mrs Williams : No. The stats are really good. As I said, Sue and Andrew are sorry they could not be here, so if there is anything else they want to put forward then they are more than welcome to do that.

CHAIR: Yes, feel free to let them know they can put forward anything that they wish.