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Support Services for Patients & Families

Mar 1, 2013|

The Roswell Team discusses the vast support services offered patients and families.

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Automatically Generated Transcript (may not be 100% accurate)

This is Roswell. Rookie by Roswell Park Cancer Institute. European opinion -- your total options. Your host him -- welcome back to Roswell listen comprehensive look at all aspects of cancer care and treatment diagnosis and research. From a comprehensive source -- will. -- cancer institute here in Buffalo, New York. Good morning and Tim Wenger and today we're gonna talk about support services for patients and families I think you'll be amazed that. The death of the care here. As they would say I guess for mind body and spirit here at Roswell park. Cancer institute with me in studio today we have Dana Jenkins Dana thanks for being here. You're welcome I'm glad to be here appreciate that us as always and you are the vice president of organizational performance and improvement big job. At Roswell park and now we'll get you in just a moment and you brought with you today Susan sharp cut. A -- -- our senior medical social worker here Roswell Susan thanks for being here appreciate it good morning. Are you end up also Linda Stein Warren thanks for coming in today appreciated and Linda is a cancer survivor and also volunteer now we'll find out why. With the patient education programs Susan thank -- -- Linda thanks for sharing your story today good morning and it should be an interesting experience. I think so indeed -- so many people think of Roswell park. As that place we need to go you know when when you know when we need it you know it's here. In in in this is the place that that so many both locally and regionally nationally internationally choose. But the depth of care goes much further than the clinical side. -- give me an overview of of some of the services and and and care items that are offered here arousal part that I think a lot of our listeners don't understand. Well I think you've just hit the nail on the head with the word need. Few people come to us just casually come to us at a time. When cancer has been dropped into the middle of their life where whatever they were doing and they had. There was a busy life going on there before the cancer diagnosis. So they come here and a whole. New set of needs will rise. And we at at the very outset trying to. Help those who come to us for care understand that we have. I support services for as you -- mind body and spirit we have everything from. Rehabilitation services that can help someone. Being able to do the things they need to do what -- reduced amount of energy. To nutritional services that can help you think of new ways to. Eat during a time when your appetite might not be so great but you need to keep your energy. Two. Just thinking about that things that keep your spirits up. And we try to talk to those who come to us early nine. And describe all these things but you know you don't really pay attention when you're overwhelmed I certainly down. You kind of need to know about these things when you need them. And so we have a group of people -- one group of people called navigators. Who can help someone who is. New into the Russell park system or you might be feeling so overwhelmed with this new. Issue in their life that they just need somebody. To help them navigate. Through. Not only Roswell park but navigate through the treatments. That cancer can bring to your life -- navigators can help with everything from. Who go to that I have some financial need to I need help getting into treatment. Two I'm feeling so overwhelmed and need some support to I'm not sleeping well. Who who can talk to about all of those kinds of things that we patient navigators. We have volunteers and you're gonna hear from wind and the minute we have some amazing volunteers. Who have not only command to do programs that we think are important but they kind of laughed and said. Some programs that we think are important. And they've developed current programs sometimes. To help new patients understand. What's going on sometimes you know patients who are not from the buffalo area. Understand how to get into buffalo Wear them when the stay where they might wanna have lunch while they're here we have all kinds of services to help. Depending upon me and our patients talents they have. I will get into detail on some of those you Bernie really gotten into some detail on the patient navigator which we've done a whole show on its. Amazing in and unique program he said something at the beginning though that I think is really important and really interest thing. And that's that life doesn't stop with the cancer diagnosis you know when we get sick just generally sick people say take -- yourself go home take carriers. Obviously with the cancer diagnosis. Someone else is gonna take care of us. And the clinical side we'll tell me that the that the stronger the patient usually the better the outcome is going to be in the end it the better that they will receive treatment. In to do that you've really got to get her mind. Eighties a little bit right this place keeps moving out there right and they well families they have careers. Absolutely and done it's it's the person to. Understands what they value on life whether that is. Taking care of their children or continuing to take care. An elderly parent or continuing to work. We have many many patients who continue to work all the way through their treatments. But or whether it's being able to fix dinner for your family and I are whether it's being able to concentrate well enough. To read a book because that's how you put yourself to sleep at night. They are all kinds of normalcy. There's there's normal for me and then there is normal for every one of us has -- normal and what we. Tried very hard to do is to help -- patient think about OK but. What are really want to be able to prioritize during this. Treatment period because clearly treatments can take priority if it's going to be. As I -- dropped into the middle of busy life but there are a lot of other things that we wanna keep doing and we try to have the resources. That and help you figure out to some strategies and tactics. To deal with those things and also. Trying to view. Being an environment. Why you're here with us or create an environment. Where you're going when you go home that is. Peaceful restful stimulating. Exciting. Whatever you want it to me. Mary -- at some interesting things and a couple more programs that we're gonna. -- ended up with you about in just a few minutes Susan sharp -- -- with us and as I mentioned at the open. Susan your senior medical social worker I think the perception that a lot of people have of of what a social worker does. Isn't real I don't think that that that I seriously you're smiling but I think the general population doesn't really understand the importance of it. And doesn't feel maybe that they would need someone like you and your staff. At a time of cancer diagnosis what is it that you -- the folks in in social work. Do here Russell. I think you're right there's a great mystique about what it is a social worker does. And I and a lot of misunderstandings. That you know were not social services. We don't. Provide welfare services we EU -- and a man. Department of social services -- social worker particularly here Roswell is a therapist. There mental health provider who is able to sit down and provides an individual counseling. And some family therapy to help people with coping. Cancer is not just disease it's a life changing experience. And as Xena was saying -- -- strapped into the middle middle of a very busy life and you're stuck with thinking. How many gonna support my family how am I gonna get -- informed treatment. Who's gonna watch my children and what am I supposed to do with the fact that look very different than now and looked before. What am I gonna do is the fact that I'm so anxious that I can't even think street I don't know what questions to ask. I am fatigued I am so tired I -- going to do I don't know where my money's gonna come from. All of these things are things that a social worker can help a personal work through figure out. Nowhere to goal would overlook how to get the supports that exist in the community. To help answer a lot of these kinds of questions. And how did garner support from their systems. There are organizations that will help them even online and we are asking for help. Can you take my daughter to the gymnastics class -- and you pick my kids up from school while I'm going to chemotherapy. Can you bring dinner on Tuesday and Thursday because those are my treatment days. And ways to kind of pull all those pieces together without actually having to call everybody you know to put those kinds of home together. And doing some individual counseling -- failings. In and -- Patients. Whether they wanna do that one and wanna whether they wanna do that. We is that the family as a group. And talking about what are the options that they -- what are the choices that they there's always choices to be made. How do you accomplish at this weighty task have you really been assuming someone whose you know life but -- really trying to. Get it back on -- -- keep -- contract hopefully. We do this is a system that side on the phone at home. In writing I mean it all of the above. We do we do that. From here. We don't actually go to the patient's home but we can do that by phone. A lot of times patients are so fatigued by the end of their appointments in the clinic that they just don't wanna wait one more second and I can't blame them. Many times I get phone calls the next day. The actress that I should call eight I don't know why he. And then we start to process through well what's going now what's happening. When did you get diagnosed what's happening with work who's in the family what's going on with them went to the children know what he told them. Have you told the school what do they now are they supporting you. Have they even you know is your guidance counselor who's involved. Are they doing well in school. That's usually where -- start to crop up maybe you can plug in some of the resources available there. You know let's talk about how you might be able to tell the children what's happening. Because he'll make up what they don't know. So they hear things and then they fill in the blanks if you have been told them it's usually worse than what they -- you know what the reality is if you haven't. Let's talk about all of these things and get a feel from the patient and the family. -- their operating system market. What do they usually do what have they done in the past when crises that have happened to them because they hand -- So let's take some of those drinks that they've used in the past and build condos. The patient obviously you know really the focus here. But the patient. You know can be a mom and dad can be a child. The caregivers the support the family are really important to you very kind of address that but. That's a big part of what the social workers involved with right making sure that there. Educated. And know how fast to support him and helped that patient. On education is a huge piece of what we do. Sometimes it's as simple as what did the doctor tell you. And trying to figure out if they really did. Understand. Sometimes in layman's language what we think of this medical talk. And then getting sometimes the physicians to come back and say rephrase all the they didn't understand what you told them. That's an important piece. Are you liaison there you viewing your department liaison and sometimes between the clinical side and the patient patient and very much so. Between not just that the physicians and also the medical team. Including the nurses in the physical therapists and trying to pull everybody in fact we do a lot of what we call failing meetings and we pulled the whole team together and let's talk about. Where we Aaron and we were going from here. Really incredible what goes on here beyond what we already know what goes on here with the medical care of the cancer care. At Roswell park that Susan sharp cuts senior medical social worker here at Roswell park. Before that we heard from -- Jenkins vice president of organizational performance improvement. Here at Roswell park in with us in the Roswell in the studio today is Linda Stein Warren. -- your cancer survivor and now your volunteer with the out patient education. Program how did. This come about that you became a volunteer -- now. I really planning to get something -- when I he cancer I knew that I was going to get better there was no question I think it -- this 100%. And when I retired from teaching it was a powerful public school teacher. I was really depressed and when you do something. And I became a team I'll coach and it's very important I was working with chemo patients. The only thing is is native had developed a relationship with them and it became -- -- depressing when making making it. I really. Had planned to use may educational experience of my people skills. So I became invalid in the yellow chicken pro green -- regrets about. And I what. I give her parents. And you know people come here and there sat. Near -- teens today know since they waiting for. You know the -- felt of their tasks in the -- -- and they're nervous -- there with their FEMA leased. Can't I come along with my cheery yellow wait -- in my yellow sneakers. Which they can start talking about immediately and they just sitting there they don't want any thing that I African peace keen to. -- -- for them some water something just to sit there and talked to them and this is. How it came about this is what I do. I hear their life stories just with a piece -- -- just a piece of chocolate nobody wants anything okay may -- or take a track like maybe they're waiting for attached. And -- -- -- -- -- and don't get me traveling here this is due reward when your finished because thinking gee let me think. So here this when you're finished with your test this is what you're getting -- and we sit there and we start -- how it pretense of say at. About their theme we been considering and we just if it works out and I just can't explain team. The feeling that I sit and giving big but I really getting from the men and helping somebody. Not all volunteers are cancer survivors I think that the volunteers who are there are somewhat you know real special. He would there and you if you recall this kind of attention being real helpful. As a patient. I'm expert design you wish you had I didn't -- it I think that that you know I just -- my themes and I will say that. A lot of people here by himself you'd be surprised that the people that come -- by himself. And don't -- anyone and that's why it's like to sit in child to them. I give him an animal this is correct -- that I didn't give them my home number that they can -- me and some people they have and it is just to let them know that -- Nat alone in this and we do I -- about it you know even. Maybe it's me questions about penal which is really important because they'd been there and and they. And I can show them yes I've lost down my -- yes they lost my anchor of CS I -- my I wish it. It comes -- everything comfy and I explained to them. -- in India and and they -- anything that they are feeling is normal. You're going to lose feeling in your fingertips you going to you know you're joint sick and hurt its Ali normally it kind of stay up. And I can show them that yes I -- an example I'd been there I -- 9 PM with that came out here right Ian I'm working and I know we faded and we -- you you know you go through treatment you get better we can always use another person with a parent so I try and meet them with a smile. The common bond is obviously cancer being treated for cancer being diagnosed with cancer all different types and in the treatments you know range from agency. But that's the common bond the differences though I think probably every patient handles things in a different way right -- probably find a wide range. Look at how normal CJ is normal I mean some people are just felt depressed you can even talk to them and that's why again it was sitting there there they feel the worst. Have to hit the and it's the little jar of water. Little battle Bork he's -- you know here's a little piece of chocolate and we just giving time for a few minutes yes you know in some people -- he's disappointed that they only. And the families in apprehensive and you can sit there too this is -- what I do is to speak to the theme hits and I'll together -- group convincing he now. I've been near detonate it and if they say you leave them with this man so. Dana you know it must be rewarding for you here you know someone like Linda talk the way she is just crazy I mean you have. You know people all over. Hospital with senator. Like her. And -- and your busy as I mentioned you have a big job Susan is a big job and I'm I'm always amazed that the you know the attitude of everybody here Roswell park is so upbeat and so helpful. But you can only do so much so to have people you know like Linda popular -- the patient area I think is really important. Well not only that but someone like -- developed. The yellow jacket program. Our our patient Education Department. Is that is supportive of it but we have volunteers who said we need this kind of thing we did -- think this -- -- fun things on it. Not only patient education literature that. Find things little little stunned that you can holding your hand say. Love her heels or a crossword puzzle book or -- Frankly I would take the candy mountain chocolate pet that's that's where that's where I would guess that most of us after. Just one of. And discs and there are things different sayings and then my relieved. Like. Believe in miracles. He'll -- loud. And I am a little ache in equates being -- teacher in me. I he of these people. Have put their hand in the being close with their IA's mixed sit around and -- something. And you'd be surprised. Them saying that they -- are so appropriate. And I said that you feel when -- challenge this yesterday yesterday was working with this woman. Who was how has been receiving. He was saving surgery and can't -- -- come back. -- -- was just. You know she was there for him. And she was really really apprehensive to. And I made -- -- injure his agent you're going that your sister's hand. And she chose to be even miracles and I that this is what you -- to him hearing his caretaker. That so many people had seen me in the halls and it. I've got X don't you pay me X stormed six months ago when I still -- -- -- and I music when -- -- for -- now I know it's it's you know it's my security blanket so that's a little thing -- we do with this don't -- with. Think liberals don't like it with few drinks so much comfort to people Dana could you imagine cancer care in an environment where it's just. Diagnosis. Treatment diagnosis clinical treatment. Without this intervention that Roswell has with the with the social work that Susan's talked about in the volunteers and other programs that we're gonna talk about it act. I can -- well I can't imagine that because I know access I'm so glad. But that's not the way Russell park Jesus to practice in Jesus to care for those who conned us. For care we try I think Linda has just said it better than -- ever well. We try to meet the patient. Whatever their needs -- everything is normal as you say everything for that individual as normal so we have a boatload. Of things that we can provide that we can offer that we can help facilitate to meet whatever it is neat car. And everybody else is fighting the abnormal heart which is we can't absolutely suit Linda mentioned something earlier that I think is important we talked a lot about. You working with patients that have families that have spouses or children -- you know kids that moms and dads and sisters Brothers whatever the Stanley make -- might be. But Linda said there are people who come here into reality that our -- that may not have. Either someone locally or really someone at all. How do you handle that you must I think that the game needs Stephens step up further from from you and your folks in those regards. We actually see that way more often than anybody realizes. Then either by -- east or by circumstance. People have become inclusive word just chosen to live their lives. Apart from. The rest of the world. And I have not really captured in relationship with others. And you know it becomes problematic when people get very sick. So we again engaging conversation is there anybody from your past that you wanna be back in relationship which is can we help track them down. Is there any community relationships for you are there organizations that we can link you up live. From their senior organizations. There are you know protection kinds of places there are places that you can go to in the community. To try to link people for some sort of support systems they never -- -- feeling there's nothing as good as that. But there are people who really don't have family and it becomes a big challenge. For many reasons of -- becomes too -- people to make their own decisions medically it's a big problem. There's not really anything to do it that we've got to see -- you know some assistance from a court. To say you know we can't make decisions for medical things for a person with nobody. Help where you go. In part of that process and sure upon anyone he admitted are treated here. Is to make sure that those types of things are in order you know that there is someone who can make decisions like you know alien you know that it doesn't come to be the case -- -- -- It is an important part you know anyone with with medicine these days. And that is something that we also assist people it is an advanced care planning and thinking about what I their wishes what would they like to have done. The very few people are wishy washy about that. They feel really strongly either about this thing or that thing. And sort of talking through okay what are your feelings about that what is that you want to have done or not done. And let us know so that we can and act accordingly -- -- I think it -- It surprises me I've known about it for awhile now -- when he first heard about the fact that art plays a role here Roswell park. -- kind of blows my mind and I think when when people are hearing it right now maybe for the first time. I'm an artist in residence program. How does -- play a role in this whole. Maze of care here Roswell. It's interesting you bring that up because I was just thinking about art and music and their pet therapy program because. As -- just is there are so many individuals so many needs we -- respond to different things. We try to help pleasant environment. We try to make the the environmental light. And and music -- that people here when they were coming to the lobby. And our six artists in residence. Are here to bring. Visual and performing arts into our patients and to interact with patients we have people who go to -- side with -- -- it is. I don't know if you've ever heard one minutes a fascinating instrument. And Arab and people love it we have people who write poetry with their patients people who make art with them people who make. Textile art with them so that they leave with something that they've made we have. Pets that come in and and lean in to our patients and offer comfort in a way that I'm. Sometimes you can't get comfort like that except from from from a beautiful. Huge Mastiff named baby. Or are Rory or Chloe. Or that little tiny -- beyond his name I can't remember but the pet therapy is a wonderful thing we really. Tried to bring so many distractions. And as soon mentioned these things help. Patience. Think about times in their life that were less stressful they help families and patients come together and talk we had -- I'm. Family he told me that a painting. In -- clinics. Help their family focused on and remembering how wonderful vacations fit them together. And it brought them to a place we think you talk about what it's going to be like going forward how we you know that. Modify our lives this year because of the cancer diagnosis. And maybe not. In years count going forward this will be passed the worst of it that's it it's it's. There are lots of of reasons that patience. Resonate art and music and you know and our regular lives you know when we're healthy when we deal with a stressful situation when we're trying to you know put something. You know behind us passing time -- season now in -- a lot of these days distract you mentioned are are distracting in a positive way. As we wind down here Linda. I think a lot of people are inspired by what you've been through what you do here at Roswell park. There are people out there listening right now going through what you've gone through there are people who are supporting people that have gone through what you go through what you've gone through. What's your what's your message to them today. My message to them is that everything be experiencing as normal. I mean this is life leaving ES or anything he nearly you know if so is the cliche you can't say. Why needs this to say why napkins in here and that he and cancer he Penske -- when it is sickness -- and be like. But you give a wonderful support system you have your family and you -- rats there are people here for you. I you -- do you really need to ask we're here for you and just you know just just in this is a horrible year out of your life he we have the rest of your life to. Linda thank you so much for being here appreciate it. That's Linda Stein -- she's a survivor and volunteer with the patient education program. Here at Roswell park thanks so much welcome Harry and now with huge today we've got Susan sharp cut. Senior medical social workers Susan thank you very much appreciate it. It's been a pleasure and all you do here in Dana tank inside is always vice president of organizational performance improvement at Roswell. Thanks for all of your insight and good work here Brussels are fine thank you counts all right that is Roswell -- thanks for joining us today if you like to hear this show or many others. In their entire you can do so at the Roswell website and that is Roswell park dot org. Have any questions need some information call Roswell told free that number is 877 ask our PCI. That is 87727577. Listen to Roswell this Sunday mornings at 630 young WB yeah. -- by Roswell Park Cancer Institute your team opinion for your total options online at Roswell this god of war. Hanging. And hanging do you. Then.