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STANDING COMMITTEE ON COMMUNITY AFFAIRS
Patient assisted travel schemes
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STANDING COMMITTEE ON COMMUNITY AFFAIRS
ACTING CHAIR (Senator Moore)
Patient assisted travel schemes
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STANDING COMMITTEE ON COMMUNITY AFFAIRS
(Senate-Friday, 6 July 2007)
CUDMORE, Dr Gerard
CHAIR (Senator Humphries)
STUCKEY, Ms Sarah
Senator CAROL BROWN
GOSMAN, Mr Alex
FORD, Dr Peter William
Senator CAROL BROWN
YATES, Mr Ian Garth
LAWRENCE, Ms Monica
SMITH, Ms Terri
OLVER, Professor Ian
KWOK, Dr Wei Leng
THOMPSON, Ms Kate
Senator CAROL BROWN
D’ARCY, Ms Marg
WITHERS, Mrs Michelle Louise
MARSH, Ms Anne
MORTON, Ms Rebecca
NORTH, Ms Jennifer Roslyn
DAGG, Ms Diana Edith
ACTING CHAIR (Senator Moore)
BOYD, Ms Nikki Ann
PEARSON, Mrs Adrienne Joy
WEBBER, Dr Kim
WADIWEL, Dr Dinesh Joseph
PICA, Mrs Eileen Mary Bernadette
SCOTT, Ms Elizabeth
- Ms Stucky
Content WindowSTANDING COMMITTEE ON COMMUNITY AFFAIRS - 06/07/2007 - Patient assisted travel schemes
ACTING CHAIR (Senator Moore) —Thank you for coming. We would like to hear your opening statements and then we will go to questions.
Ms Dagg —Thanks very much for the opportunity to present today. We in Ronald McDonald House Charities appreciate this inquiry. We appreciate very much the Patient Assisted Travel Scheme and what it offers our families across Australia and the opportunity to have input. We are looking forward to some changes and we hope that, as a result of this inquiry, the scheme will be more relevant and user-friendly for all the families who use our services.
I am going to provide a very quick overview—I am based in the national office—and then I am going to hand over to the people at the service delivery level who deal with the families. They will be able to provide you with the information about what is happening at our houses from an administrative level in the scheme and also, probably even more importantly, what families are saying about it and experiencing in it. We are going to move through in order, and Nikki Boyd is going to finish with a list of our recommendations. That will allow plenty of time for you to question us.
Our organisation, Ronald McDonald House Charities, was established in 1985 by McDonald’s. McDonald’s pays our national salary. We are a very small team based in Sydney. It pays a national salary for administration, and the rest of it is up to the houses. There are 12 houses around Australia that we call our ‘cornerstone program’ because they are the reason, we feel, that we exist. We provide support to the houses, but it is the house leaders in the houses that provide the services for families. At any given time around Australia we provide accommodation for up to 237 families. One of the issues for the houses is that each is a separate incorporated entity, and that impacts on the PATS scheme. They have separate constitutions and they are run by a board. Funding and cash flow are major issues for houses. They cannot afford to have delays in funding for lengthy periods. Staffing is minimal because we want the support to go to the families. Each house is supported by a very committed core of volunteers. We call the houses ‘homes away from home’ for families with children who are seriously ill. We are going to give you more insight into some of those issues through the presentations today. Our houses are located next to major children’s hospitals across Australia. We have 12 that are located in six states, so we have a fair understanding of many of the issues in the PATS scheme for families with seriously ill children. I am proud to be able to say that we are the major provider of accommodation for families whose children are in paediatric hospitals nationally. Since we started, over 50,000 families have used our services, and the majority of them are from remote and rural areas. Eighty-five to 100 per cent of those families use the PATS scheme.
The key issues for the charity that we are going to talk about today, which will be concisely developed by the other speakers, are: our concerns and family concerns about the lack of consistency of implementation of the scheme on a state level and even between different hospitals; the underfunding—as we see it—for accommodation, fuel and travel; the delays in compensating houses and families—I mentioned the issues around cash flow and the day-to-day existence that we all have—and the complexity for families in applying for the subsidy. Thanks for your time. I am going to hand over to Jennifer North from our Monash house. She is able to speak both as a house leader and as a parent.
Ms North —Thank you for the opportunity to speak as an executive officer and also as the mother of a sick child presented in the submission. We did it as the case study, and I am more than happy for it to be referred to and included. I acknowledge your initiative in recognising the need for reform to create a national and equitable culture in the delivery of Patient Assisted Travel Schemes. Ronald McDonald House Monash is the house that love built—by the community and for the community—as Sandy Ridge House Inc. An average of 380 families per year has stayed in the house since it opened in 1993, equating to 6,000 bed nights per year. Eighty per cent of the families come from Gippsland; also included are Tasmania and King Island. The house has 15 rooms with a small staff of three and 60 volunteers, who have contributed 110,000 rostered hours since 1993. Serious illnesses for families include cancer, heart disease, renal failure, eating disorders, cystic fibrosis and premature babies.
I want to present the case study of Jamayca and Quinton, parents of baby Evie, where a shocking and debilitating financial burden cost this young family $16,000. This happened because of the inconsistency of criteria across the states. On 27 October last year they went to Queensland for four days on what was meant to be a four-day getaway. Jamayca was 25 weeks pregnant and had checked with the obstetrician and was given the all clear to fly. On 29 October she went into labour and gave birth to her beautiful little daughter, Evie, 15 weeks early. She weighed 650 grams. I would like to present this document. Jamayca and Quinton have asked me, as a part of the family, to use this as a case study in this inquiry.
ACTING CHAIR —So we can keep this?
Ms North —Please keep it. Little Evie is now nine months old.
ACTING CHAIR —And well?
Ms North —And well, which is absolutely wonderful. Huge variations in distances within Australia require flexibility and a national model for the delivery and provision of PATS to enable access to specialist health services throughout the regional, rural and remote areas and interstate. I can speak personally about that and testify to that.
As a parent, I believe the PATS form needs to be made user-friendly as families experience enormous stress and anxiety and have great difficulty in concentrating. I know myself as a parent that each line runs into the others and even the doctors have trouble identifying where they have to sign et cetera, and this can create terrific problems for the houses. Consideration also needs to be given to where literacy issues exist. These issues may exist with parents and there can be a fear factor in having to fill out a form. Colour coding and development of a user-friendly form would assist. I would now like to introduce Adrienne, from Westmead in New South Wales.
Mrs Pearson —It is a pleasure to be here today to represent the 23 families that stay at Ronald McDonald House in Westmead in the grounds of the Children’s Hospital at Westmead. Every night we are full. We are turning families away. Again, there is some documentation on your desk about the forms that the New South Wales families have to fill out—the wad of forms there. Brian, who is an eight-year-old boy from Wagga Wagga, who stayed with us for 18 months, got home for about eight months and has now relapsed with his brain tumour. This is the second time. He is on six months of radiotherapy. His mother is illiterate. She cannot fill out the forms. My staff fill out the forms for her every time. We read the letters out to her. We explain everything to her. They can go home between the radiotherapy treatments for a few nights—we call it a window of opportunity to be normal—and those forms have to be filled out when they return every time, plus they have to pay $92, which they do not have. The mother has been diagnosed with an anxiety disorder. She thinks she is going to lose Brian. She is on IVF because she wants another child in case Brian dies. It just gets so complex with these families, so my staff are there supporting her all the time. The father gets casual work in Sydney. They do the best they can do and try to manage.
When families leave the house, my staff ensure the doctors have signed in the right places for every form that leaves our house. We put them in stamped, addressed envelopes. They get petrol vouchers in the envelope for the way home and then they sometimes post it. When they get home they may forget to post it. They may not ever want to have anything more to do with the children’s hospital, nor Ronald McDonald House, so it gets lost somewhere. These families are just so stressed and so relieved to be home that some of them do not even want to know us again, as wonderful as we think we are!
I also present the remittance advice form, which I have just highlighted, for a family who stayed in September last year, 2006. We were paid on 17 May 2007. The long gaps until payment mean that we run on a shoestring. What money comes in is from IPTAAS, or we have to fundraise to keep those families. These outstanding debts can be insurmountable sometimes, as the general manager. On average it costs $65 a night to open a room, and the $33 a night does not cover that. We raise that as a charity to supplement our income.
If a child passes away, if the staff feel that it is inappropriate to ask those parents to sign the forms, we do not ask them to sign forms; the charity waives that. It is inappropriate sometimes to put that extra stress and burden on families. For a family in the unfortunate position of having a child with cancer—and most of ours are; we do have some children from Western Australia who have liver transplants, depending on how far away they are and the diagnoses of the children—the out-of-pocket expenses are insurmountable. We provide many meals and food for them. The day-to-day washing and laundry is free, including soap powder and all of those sorts of things. We try to reduce those costs for those families. While IPTAAS provides the accommodation and travel assistance that they do—we are thankful for that—the costs of the additional support can never be quantified, I do not think. I would like to pass on to Nikki to sum up.
Ms Boyd —Further to what Adrienne has mentioned, I would like to touch on three points. We accommodate 38 families at Ronald McDonald house in Parkville every night. We are always full and have a list, at times, of people who are waiting. The first thing that I wanted to cover was the 100-kilometre distance range for families who can claim. I am aware that that has changed over the years: it was 200 kilometres and is now back down to 100. That change obviously did have an impact on our families, which was great, because the families in that gap then could claim. The 100 kilometres is such a clear-cut figure that it is often hard, given that if a family lives 90 kilometres outside of Melbourne it is not feasible to come to the hospital and then go home straightaway. Then there are all the costs associated with accommodation. Given that they cannot claim, we suggest that there be discretion around the individual case of the family and what situation they are dealing with as opposed to it being a clear-cut distance range.
The second point I wanted to talk about was the $30 per night that the families can claim. That $30 per night rebate has not changed since 1985. Therefore it is not in keeping with CPI increases, the cost of hotels and how expensive it is for families to come to the hospital. In line with medical costs, transport costs and accommodation costs, the figure does not quite cut it, as Adrienne said, even though it does help. So maybe there is some room for improvement or change. For example, if that cost were to go up by a small $10, that would have a big impact on families. They could claim that little bit more to help them out. A small $10 increase per year would mean about $100,000 extra per house. This was an example for our house, given the number of rooms that we have. That funding is important and vital in keeping our operation open for the families that need our house. Many would have stayed in various places—wards, cars and things—before we came along.
The third point I wanted to discuss was not part of our proposal. We talked about having some kind of service provider system made available. I will explain that. We are the major provider of accommodation for families with children staying in a paediatric hospital. Given that we are that major provider and we do have a connection, perhaps there could be some kind of system that we could lodge on a monthly basis saying: ‘These are the families who have stayed with us. This is documentation from the hospital to say that, yes, these families have stayed with us.’ So, once the original verification is done, it is done and it is in the system.
If we lodged that on a monthly basis, it would make it easier for the families, because the forms are quite tedious. As you can imagine, they are stressed by the situation with their children, and that form is quite lengthy and often confusing. They would be able to not worry about that aspect and we could lodge it on a monthly basis for cash flow purposes for the house. It would make a big difference. As Adrienne mentioned in her example, having the payments come through eight months after the application was lodged is not very handy for cash flow for the house, given that we do run with such a small staff base and small funding in that area. Perhaps there is something that could be looked at as a suggestion there.
Both of the Victorian houses do have a little bit of a problem with the Bendigo branch. With that branch there is a four- to 12-month delay with payments at times. As I said, cash flow is quite important for the house—as it would be important for any business. You can imagine how important it is for us as opposed to a money-making business—or not a not-for-profit, if that is the term I am trying to find.
In summary, our recommendations are: to decrease the complexity of the administration associated with the forms and applications; to increase the consistency of the implementation process across the country and states to bring them in line a little bit more than they are at the moment; and to increase the amount of the subsidy that the families can claim for accommodation, to make it a little more relevant to their needs and today’s day-to-day costs.
CHAIR —Thank you very much. I am sorry I was late getting back here.
Senator ADAMS —Tell me about the process of a rural person trying to come into one of your houses. If a GP is sending a child up for specialist treatment for something, how do you start off? What is the process, on the communication side of it? Do you know anything about the family when they are coming—that sort of thing?
Mrs Pearson —They are usually referred by the GP. They have to have that form filled out by the referring doctor. They will be flown in or will drive with the seriously ill child to the Westmead Hospital. They will be admitted to the oncology department and we may hear—or we may not—that there is a new oncology family and a referral. The parents will be in the hospital for a day—24 hours, 48 hours. They sleep beside their child. If there are other children, they may come afterwards with dad or grandma or whoever and they come to the house and book in.
The book-in process is: we take them into a room—and it is usually quite stressful, like a whole new world that they have entered—and they have to fill out the forms. We help them do a lot of that. Then we discuss the fact that they will be in the hospital and backwards and forwards to Ronald McDonald House in the next week and that they should not worry about any forms or anything after that. That will be sorted. We try to take that stress away from them in the first week, because they need to be with the sick child.
Senator ADAMS —Do they know that they are going to have accommodation with you before they come?
Mrs Pearson —Yes. It is guaranteed. If they are oncology, it is guaranteed at our house. We may have to bump someone else out, because we only have 23 rooms—and that is the sad part about it. If they are a liver transplant, we will not take them pre transplantation because we do not know how long that child will be waiting for the transplant if they are very sick. If we know it is a transplant and they have come in and had it, they will come to us. So we have people from Western Australia and from the Northern Territory with those, because we do a lot of liver transplants.
Senator PATTERSON —Do you get assistance from those states for accommodation?
Mrs Pearson —Yes, we do, and they are very prompt and they are wonderful. Our own state is not.
Ms North —Within our house a lot of families come from Tasmania, and 80 per cent of our clients come from Gippsland and they do not know about Ronald McDonald House. So the first point of contact is really through the nursing staff or doctors at Monash Medical Centre. We are also letting GPs know about our services throughout the state. We travel around having awareness and information days, because a lot of GPs in the rural areas just do not realise or do not think in their consultation to let them know what we offer. Also, with the broad types of very serious illnesses that we do have, quite often people just unexpectedly end up at Monash Medical Centre.
Ms Dagg —I think it is an example of the 12 different federated entities—the 12 houses—having different constitutions. While Westmead will give priority to oncology patients, some of the other houses will not; it will depend on other issues. So they will take a broader range of patients as a priority. I think Monash is one of those.
Ms North —Yes. One of the areas now included in the breadth of the services that are provided is young people with eating disorders. It is very important that their families have access. Because it can be for such a long period of time, we now have in our latest extensions two fully self-contained units where families and siblings can stay. Then there is that stepping down process within the hospital so that they feel as if they are in a community environment within Ronald McDonald House. We do have success. The hospital is the bureaucracy; Ronald McDonald House is the home away from home.
Ms Boyd —With regard to the differences in the houses, we have 38 rooms at the houses and we do give preference to oncology families. We do often find that the families who are coming to the hospital whose child has recently been diagnosed do not yet know that they have accommodation. We have connection with the ward. The ward or the social worker will ring us and say, ‘We’ve got this new family,’ and preference will be given to that family. But they often have to pick up their lives and be gone—they do not know. It works differently in different states, in different hospitals and in different houses, but we do get a lot of families who will come down to the hospital and will have no idea and will not have thought that far. They have just left at a moment’s notice.
Senator ADAMS —What do you do for the ones that you cannot accommodate? Do you become involved in assisting them to find somewhere else?
Mrs Pearson —Yes, we have four places and our house. We have a printed list they can follow through. They will start with the Catholic welfare league ladies, who run a house. Then there are some nuns who run one up the road. From there we fan out. We say to them: ‘If you’ve got any relatives or if you know anybody in Sydney, just call on them. You have to do this.’ This is one of the things.
Ms Dagg —The unmet need is increasing—as you would anticipate—because, with increased medical technology, children are staying alive longer and their needs are more complex. That is something we as a national charity are dealing with. As Adrienne said, we are developing more sophisticated techniques for dealing with the families who we cannot accommodate. Sometimes they can come back at another time. Sometimes, if we know ahead of time, we can negotiate with them and the hospital for them to come back the following week. If it is an emergency, as Adrienne said, it is no holds barred. But the house will work with the family to make sure that they have somewhere to stay. We will not put them outside with a list; we work with them.
Mrs Pearson —We make sure that they have got a home they can call.
Senator ADAMS —There is also the issue of allied health. Often when children have been really sick they need to come back to that hospital for treatment or follow-up. That may involve physio for a week of the school holidays or something like that. Can they book ahead to stay with you?
Ms Dagg —Yes.
Senator ADAMS —And are they eligible for PATS?
Mrs Pearson —They can stay if there is a vacancy. The children who are seriously ill in the house have priority. I always feel so bad turning them away, but the children that are the sickest get priority.
Ms Dagg —They can book ahead if there is a vacancy. Then, even on the day, they might be tipped out by a family—from Australia or from overseas; we take some overseas families as well—with an emergency. So we may have to ring the family and negotiate with them around how we can meet their needs but also meet this emergency. We do that all the time.
Mrs Pearson —We have a policy of letting them know within 48-hours whether the answer is yes or no or that we are getting them further accommodation.
Senator ADAMS —Are they eligible for that if they are coming back for other treatment, other than going to see a specialist?
Ms Dagg —If it is related to that original condition.
Mrs Pearson —If it is an appointment with a specialist doctor, then, yes, they do. I do not know of any others that would come back for any other reason.
Ms Dagg —But the other issue is that every time they come back they have to fill out a whole new set of forms. They have to do that again and again.
Senator PATTERSON —Is that where your suggestion of a monthly statement would come in? Would that stop that happening? The group before you—the women’s hospital—said that if somebody were to go home for a day’s break and come back again they would have to fill out the forms again. This would stop all of that, wouldn’t it?
Mrs Pearson —Yes.
Senator PATTERSON —Nobody is going there for a Club Med holiday. They have to be sick to be there.
Mrs Pearson —Exactly. And we would know, on, say, a Monday night, about the 23 rooms and the 23 families, and we could get the doctors to sign those forms. Our oncologists and cardiologists would know—
Senator PATTERSON —Why would you need them to sign the forms?
Mrs Pearson —Well, they would have to trust us.
Senator PATTERSON —You would not have people in there who were not sick.
Mrs Pearson —No.
Ms Boyd —If there was an initial sign-off to say, ‘This covers this from this period of time’, then that would cover them coming and going. We could just say, ‘Yes, this family did stay in our house in this month; this is the monthly amount.’
Senator PATTERSON —And you would have their details.
Ms Boyd —Yes, and we could just do it that way. That would take the pressure off them. They would know that that had all been covered. And we would know that the cash flow was coming through the house as well.
Senator PATTERSON —You would think that it would make the administration easier. You would not have 25 families’ application forms.
Ms Boyd —Yes.
Ms Dagg —Yes. And you are more likely to be able to get paid as well.
Senator PATTERSON —You might wait longer for more!
Ms Dagg —There are so many sensitive, difficult issues with families. And we are shoving a form under their noses when they are dealing with the stresses that they are dealing with. As you say, they are not there for a holiday.
Senator PATTERSON —The only thing that would not work would be their petrol to go home. But people have to take some responsibility for themselves and so you would give them a form for their petrol and send them home. But everything else would be covered.
Ms Dagg —The other interesting thing is the differences between our states. We were pleased that Adrienne was able to come so that we could demonstrate the differences. Adrienne spoke about the $33 allowance, whereas Nikki spoke about the $30 allowance. Adrienne is from New South Wales and Nikki is from Victoria.
Mrs Pearson —But you get more money.
Ms Boyd —That is different. That is what we claim for if the patient actually stays and you have the escort and the patient, so it is $30 for the escort and $30 for the patient if they have stayed as well, whereas in New South Wales it is $33 if the escort stays but then an extra $11—
Mrs Pearson —No, $13.
Ms Boyd —It is $13 and then it goes up to $46 in total. So it is a different amount.
Senator PATTERSON —Also, one of the other groups told us that if the patient goes back into hospital the escort has to pay the full amount; they do not get any support at all until the patient comes back out and is staying in the accommodation.
Mrs Pearson —Not in our case, because the children are all under 18 so the escort simply has to be with the child.
Senator PATTERSON —That is a bit different.
Mrs Pearson —The mother is always the escort and she will stay in the hospital with the child. The room stays with the family because there might be dad and four other kids as well in that room. You cannot just bump a child because someone has gone in, particularly with the oncology treatments. They might just be going up for PAC one day and for their chemo the next day. They may not be inpatients—they are outpatients—but then if they get really sick they can be in. But the room stays with the family because there are other siblings.
Senator PATTERSON —But wherever the patient is they still get the escort. We have to be clear on this, if we make a recommendation; we must acknowledge that for children it is different.
Ms Boyd —Yes, for children it is different.
Mrs Pearson —And of course that is what we do; we keep the family together. There might be brothers and sisters, babies; the mother gets such separation anxiety. She has one sick child but there are the others. To give an example: there is this mother who has a one-year-old, a four-year-old and a six-year-old, who is the sick boy. Her separation anxiety is also to do with separation from the other two children; they can be close for her when she needs to come down to the house and go back again.
Senator PATTERSON —The one at Parkville takes people from Tasmania. Does the Monash one do that?
Ms North —Monash takes people from Tasmania as well.
Mrs Pearson —And I have some from Tasmania too.
Senator PATTERSON —And Tasmania pays?
Ms Boyd —Yes, the bill goes back to the relevant hospital.
Mrs Pearson —There is no problem with Tasmania; they pay very well.
Senator PATTERSON —How many volunteers would you have working?
Mrs Pearson —About 120. When we go home at night, we have overnight volunteers who sleep overnight at the house. If a mother has to rush up to the hospital with a sick child, the volunteer will mind the children and the mother can know that they are in the room. They are fully trained volunteers with police checks. These people are community members who come in and help us run that house, and that keeps our overheads down.
Ms Dagg —We have around 2,000 volunteers across Australia.
Ms North —And these are people who have had police checks. They are committed. They have rostered volunteer hours. We have volunteers at the houses 24 hours a day. They give over and above that, as well as fundraising.
Ms Dagg —We have business volunteers as well.
Ms North —They are the volunteers we do not always talk about.
Ms Dagg —There are some wonderful things. The capacity is increased by the input of a whole range of different people. We could have a bank or a business call one of the houses and say: ‘We’d like to do some community services. We want to come in and clean for the day, or we want to come in and cook for the day.’ The house leaders are experts at setting that up and making it happen.
Mrs Pearson —We have a fortnightly Friday night dinner program where Rotary clubs, Lions clubs and community people come in and cook a full Friday night dinner. Tonight they are having a Christmas in July. North Rocks Rotary club are coming in. They have Santa—they do everything. They are having a full roast meal there tonight. That takes the pressure off mum, who has been in hospital all day. The kids can have a lot of fun. It is a little time and space away from the illness. That happens every fortnight. We do not impose things on families, but we like to give them a little bit of release. The volunteers are fabulous.
Ms North —There is the casserole club, too. When I say there are 60 volunteers, they do not always include the casserole club. There is always a meal in the fridge for families that are coming in the night, or if mum is over at the hospital with the child and dad needs something to eat. The other good thing is corporate sponsorship. For example, at Monash, Bosch put in all new microwaves et cetera when the house opened 14 years ago, and they have just come back in and renewed all the appliances. They are now putting it out to all Ronald McDonald houses nationally. They are the things that are not always recognised or that people do not always understand. It is remarkable.
Ms Dagg —The house leaders work very hard to maintain that.
Ms North —Yes, in developing relationships.
Mrs Pearson —When I first went to the house five years ago they paid $1.20 to wash and $1 to dry, and I thought, ‘No, I’ve got to change that.’ I raised the money with the Rotary groups and now it is free. With a sick child you need to be able to wash your clothes. You need to be able to wash the bed linen and whatever. So it is all free. One of the mothers said it cost her about $1,500 in the time that she stayed there just to do her washing. So we take those financial burdens away from them wherever we can. There is always food in the fridge. There is always milk, tea and coffee. They do not have to be out of pocket for anything. They could live in the houses with the supplies from community and non-perishable pantry items. In our house they could survive—and they do survive. It is incredible, but they do survive with next to nothing.
Ms Dagg —We buy a lot of that, as well. We buy many of the goods to support that.
Ms North —It is not all donated. The other wonderful thing is having that telephone beside the bed that is automatically connected to the hospital. There is security: they can request to take their family across to the hospital, and at night security will bring them back to the house to make sure that they arrive safely and do not get lost.
Senator PATTERSON —There is a solution for our women’s hospital. They were worried because the hospital is moving and the accommodation is down the road. So there is a suggestion. I had better ring them up.
Senator MOORE —What ages does the facility cover?
Ms North —From newborn right through, for us, to 18. But then we have people who have been very sick and have to come back, so that is also a rollover. They are always included in our events, because there are those relationships that have been developed over the years, and they are a part of the extended family.
Mrs Pearson —As long as they are being treated in the children’s hospital, they can be accommodated. Some of the girls coming back for late-effects clinics for treatments for chemotherapy and things like that can be taken in. When they come back, they are great role models for the younger ones.
Ms Dagg —We also take in women who are having difficulty with pregnancy, so there are older patients as well.
Ms North —I am finding that, for people living so far away from the metropolitan base and having to have access to the expertise and knowledge in Melbourne, we are having a role in coordinating appointments and services back home in the rural and remote areas. When the hospital rings up the local GP to say that someone is being discharged today and it is essential that they have an appointment in two or three days, it might be four weeks before they can get in to see their doctor. So we help with that.
Senator MOORE —We have heard evidence from a number of people about their being unsure about what happens after they have had treatment and about getting home safely—knowing where they are and knowing where they go next.
Ms North —Exactly—so that they do not feel abandoned.
Senator MOORE —You help out with that?
Ms North —We certainly do. We are always there by the telephone to assist, and when they come back for ongoing appointments we make sure that those relationships stay in place.
Senator PATTERSON —Even if they are not staying overnight?
Ms North —Even if they are not staying overnight. They can come in and have a cup of tea; they can just come in and park themselves for the day. But, more often than not, because they travel such enormous distances, they may have to stay overnight.
Ms Dagg —I do not know whether this is relevant, but it may be of interest to you. Ronald McDonald House Charities also run family rooms located in hospitals, which cater for people who live nearby who have seriously ill children and need to be close to them. These rooms comprise a kitchen, a couple of rooms that they can sleep in, somewhere they can have a shower, and a couple of washing machines so that they can get the washing done without having to go home or to farm it out. Demand for that is increasing and it has been very well utilised. For instance, at John Hunter Hospital in Newcastle we have something like 400 families a month come through the family room. The other thing we offer is a learning program which fills the gap for children who have had a serious illness and have had to be away from school. We fund tutors who are qualified and have undergone working with children checks. They bring the children back up to a level whereby they can go back into mainstream school with more confidence.
Senator BOYCE —Is that in their homes?
Ms Dagg —We try to do it out of their home—at their local school or at the house—so that we are starting to get them out into the community.
Ms North —Ronald McDonald Charities has committed $200,000 for the family room at Monash Medical Centre. We at the house and volunteers have committed to raise at least another $200,000 to $300,000 to make sure that that happens—because that is what it is going to take. We are negotiating with the hospital to make sure we have space for the facility that Diana was speaking about.
Mrs Pearson —Also, the CEO of our hospital is on our board. We specify how many people from the hospital are on the board and how many people from McDonald’s and community representatives are on the board. We are doing a house expansion at Westmead. It is really good to be proactive, because we now know the needs of the hospital health plan. There is a really great intervention radiologist at Westmead who can do wonderful treatments for children with brain tumours. Also, there is a need for ventilated children who come into the hospital and come back for appointments. When we do this expansion plan we may need to have part of the house where we have two rooms for them, for example. We will not be doing the ventilation—they will come with their people—but if they need to come in and stay overnight they will have that special provision provided for them. This is where we need to look at cutting costs and knowing what our population needs in the next few years.
Ms North —Diana mentioned the importance of schooling. That is about wellness. Speaking as a mum, my daughter was 13 when she got sick and 16 when she went back to school, straight into year 11. Bless her heart, she is now at second year at university. She has made a full recovery. She is doing a bachelor of arts, and now a double degree in business and commerce. It attests that if you can fill the gaps with a mentor—and it is all about wellness—it does work.
Senator MOORE —It is hard enough to go into grade 11 without missing all those years.
Mrs Pearson —Yes.
CHAIR —I did not catch whether there is any means testing at all of the people who come into the houses.
Mrs Pearson —No. As an example, we were a double-income family. I was working with the developer of a $23 million project. When my daughter got sick my life stopped. There is no question. You have to be in that hospital beside the bed, because your child is fighting for her life. It cost us thousands. We got 14c per kilometre. By the end of that four years, by jingo, we needed that 14c per kilometre. After being discharged from hospital, for the following 12 months we were in Melbourne every week, going backwards and forwards, because we needed to have a normal life. So we were down here for two to three days every week, and that 14c per kilometre allowed us to do that. It would have been great if it had been more. You talk about means testing. You can be very easily reduced to your knees. There was that young couple whom it cost $16,000 over those weeks in Queensland: if they had not had family and friends, goodness knows what would have happened. And their relationship is still intact. It is the same with our relationship. Thank goodness for the houses. We are a very strong family, a very close family. If it were not for family and friends and their contributions, who knows? So, as to means testing, no.
Mrs Pearson —No, we do not means test.
Senator PATTERSON —Do you have anybody doing any research on families that have access to something like the houses versus families that have not had support, as to whether there is any difference in their marriage outcomes 10 years later? Has anybody done any work on that?
Mrs Pearson —I do not know of the longevity research, but we commissioned a needs analysis two years ago and we had a person interview families. Some of the comments were just so humbling—the fact that we were there, the fact that we would keep in contact with these families. If their child dies we are probably the only people who ring them and say: ‘Tomorrow is going to be a really bad day for you. We’re all here for you.’ We all have fairly strong relationships in our house, too. But we see those mums and dads come through that door. I always have a little chat with them and say, ‘If there’s a chink now, it’s going to get bigger. You have to work twice as hard as anybody else to stay together.’ Dads always get left at the door. The doctors always talk to the mothers and explain to the mothers. The fathers we have to really work with. We have to bring them in and try and explain to them what is going on as well. Thank goodness I have a nursing background, so I can sort of bring it to their level. We do work on that. With a very small staff it can sometimes be difficult. You know you have your fundraising to do over there, but these families definitely come first. They regard us as family, I think.
Ms Dagg —We are very keen to get some longitudinal research on the impact on families.
Senator PATTERSON —It has not only a policy implication but an economic implication. I know this is a bit off the topic, but it seems to me that a link with the local family relationship centre might not be a bad idea. If it is getting rocky, they might help. Family relationship centres are not about divorce; they are about helping families stay together. It might not be a bad idea to link with them.
Mrs Pearson —We do that. Children’s Cancer Welfare Services raise money so that when families leave us they can have a choice of what they would like: some counselling sessions, the school fees to be paid, school shoes, schoolbooks or whatever. This other cancer welfare organisation will pay that. We do include counselling.
Senator PATTERSON —But we now have family relationship centres. There might be some near you.
Mrs Pearson —Yes. That was identified.
Senator PATTERSON —A child is more likely stay well and is less likely to need PATS and everything else when their family is intact.
Ms Dagg —That is right. Adrienne mentioned the needs analysis. One of the recommendations that came out of that was the need to look very closely at after-care and continuing support for families. They come into this cocoon in their houses, which is a wonderful thing, and we want to make sure that we continue to support them in whatever way we can so that their relationships do not fall apart. We are talking to one of the universities about conducting some research into the impact of the houses. In our submission, we refer to some interesting research, which was conducted in the United States, into the impact of these houses on the hospitals and on the children and their families. I will email a copy of that to Owen, because I am sure you will find it interesting. Over a period of time, they saw that the number of hospital admissions decreased and that it led to more positive health outcomes for the families. We would like to replicate that here.
Senator PATTERSON —And more PATS for other people—if you are going to push how it is related to this.
Ms Dagg —True.
Senator BOYCE —In one part of your submission, you suggest that the existence of the houses leads to people being discharged earlier from hospitals. It is as though there is some sort of cost-shifting going on. Would you like to comment on that?
Mrs Pearson —Yes, there definitely is with hospital beds. When a child is on that brink and the hospital needs the bed, because we are in the grounds of the children’s hospital they discharge the children a little bit too early sometimes. If the mother is concerned, I will say to her: ‘You need to take the child straight back to hospital,’ or ‘Go straight up to accident and emergency.’ The child may still be very ill in some cases, but the hospital needs the bed for someone else. Because we are there and they know we are within walking distance of accident and emergency, that is a good way of moving them through.
Senator BOYCE —Is that happening at all the houses?
Mrs Pearson —It happens at ours.
Ms Boyd —We get situations where a child is in hospital and the hospital says to the family, ‘Because you are actually staying at Ronald McDonald House, we can let your child out that little bit earlier,’ or ‘We can let them out now so that they are close to the hospital.’ They can accommodate.
Senator BOYCE —Do you think that is for the hospital’s benefit or for the family’s benefit in the majority of cases?
Ms Boyd —It is probably a bit of both. Sometimes it is for the family and then there would be different situations when the hospital says, ‘Yes, we need the bed.’ We know that it is a problem with the hospital system, but there are probably cases as well where it might be a benefit to that family to have their child in more of a home environment as opposed to a clinical one, and it assists the families with that.
Mrs Pearson —We have five units further up the road. So we have our 18-room house and our five units where we transition people who are going home. They become quite dependent on the medical personnel and staff and us. Even though we say that we cocoon them, we need to be very careful that we are not making them dependent upon us. After they have been in the house for eight or nine months and we know that they are going home in a few months, we will let them live in a unit so that they can start to be a bit further away before they go home. Those families transition back into the community so much better than others.
Ms Dagg —The point that we would make is that, while it is very often negotiated between the hospital and the house, the impact on the hospital from a house being close by is not recognised. It allows the hospital to do what they might not otherwise have been able to do with families who live some distance away.
Ms North —I think, too, there is the issue of payment to the hospitals involving the administration of long-term patients. If the hospital can discharge them and then do a re-admission, that affects government payments into the hospital. For instance, a long-term patient is in hospital for over three weeks; they are discharged and then they are readmitted.
Senator PATTERSON —If they are on DRGs, they would be a new case.
Mrs Pearson —They would be a new admission.
Ms North —That is why that happens sometimes.
Senator BOYCE —So you might have a couple of overnighters who just go back the next day, so to speak?
Ms North —Exactly.
Ms Dagg —I do not know about that. The point of the submission, as I saw it, was what we are offering. We are working in partnership with hospitals in a really constructive way and, as a result of that, we negotiate around the welfare of patients. Sometimes that is not necessarily recognised. As we were writing the submission, some of these things came up for us and we recognised this issue.
CHAIR —Thank you for those comments and for your insights into what you are doing. Someone on the committee suggested that, if you were interested in supplying us with a list of your volunteers—maybe their names and addresses—we might be able to organise some letters or certificates of appreciation.
Senator PATTERSON —We have some new certificates. That is why I asked you how many volunteers you had. We might have to have all the committee sign them.
CHAIR —We could divide them up by state or something like that.
Senator PATTERSON —The Senate has every state covered and what states are not covered we will get another committee member to sign for it. The certificates can be presented on a volunteers night.
Ms Dagg —They would love that. Thank you.
Mrs Pearson —We would like to invite you to the houses to talk to these children and their parents —
Senator PATTERSON —I feel guilty because my office is close to your place. I go past it every day.
Mrs Pearson —because sometimes the families open up and tell you things that we do not even know.
CHAIR —Thank you very much.