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Social work intervention???

eihtak
Posts: 818
Joined: Oct 2011

Hi everyone.....a question came up during a discussion at school the other day regarding the intervention from any type of social worker during a cancer diagnosis. I said I would ask. It is recommended that upon diagnosis of any cancer that a "preferably" oncology psychosocial worker meet with the patient and family or support people if available at least once, and then more if requested. They should be available to advise on emotional concerns and explain "the process." I know I just went into auto pilot and did what I was told without much thought at first. I didn't even know some of the terminology or what it meant. I still had a daughter in highschool, a sick husband, and other family issues, along with being the main source of income and insurance at the time. I and my family were never offered any social work support, though I know it was available but would have had to be pro-active in seeking it out myself. The people in the discussion agreed it should be part of the initial treatment plan and not just an option. So, I'm just wondering have you or others you know with any type of cancer been offered this, just like offered chemo and radiation as part of the plan??? I don't need names or definate numbers, just an informal survey.   Thanks

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I was not offered any such service.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

I don't remember being offered anything like that - I think it would be a great idea.

Vicki K
Posts: 14
Joined: Apr 2013

No, we weren't offered anything like this, but thinking it might have been helpful.  Although you are in a state of information overload at the beginning!  

They just scheduled everything, and we followed like good kids!

Clovergirl
Posts: 46
Joined: Dec 2012

I was offered a social worker after diagnosis. I was very happy to have her. All cancer patients are assigned a social worker at my facility. I saw her a couple of times a week in the beginning but less now. I just finished treatment on April 12th. I was hospitalized a couple of times during treatment and the social worker came to see me. She was a great resource for me and my family throughout this journey. My teenage daughter was very co mfort. able with her.. No subject was off limits with her and I look forward to seeing her next week.

Marynb
Posts: 1134
Joined: Aug 2012

I was offered services of a social worker, a psychologist, etc. The hospital I go to has every service you could ever think of. It was not part of the treatment plan and I would have had to seek it out.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

MD Anderson has a support system that offers what you described. I was told about it and recieved information about it.  But is wasn't incorporated into my treatment plan per say.  It was up to me to reach out if I wanted it.  I didn't. Not sure why now that I look back.  I think I too was in auto pilot - "let's get this done".  Looking back I would say I needed it more post treatment.  They did include a nutrionist and that was part of the treatment plan....I had to show up or she tracked me down!!

Liz

Phoebesnow
Posts: 447
Joined: Apr 2011

Immediately after meeting the radiation oncologist I was shuttled over to see her.  I was assigned another one and I met with her once.  We didn't click.  10 months later when I realized something more must be wrong with me since I was not recovering from the tx like otherin I sought someone else out.  I saw them up until my dx of ataxia was confirmed.  

 

This word processor makes things up. It's quite annoying.

 

All services were free ofcharges.

jcruz
Posts: 214
Joined: Jan 2013

I don't recall being offered the help of a social worker or a nurse navigator.  They would both have been helpful but I didn't even know those people existed.  I too was basically on auto-pilot, numb and just following any direction given by the doctors.  I did have a patient education session with a nurse practioner but that was mainly about treatment, drug side effects, a shopping list of OTC meds and other helpful supplies, nutrition, etc.  I don't recall that she told me about the services of a social worker.  

I have recently learned that both a social worker and a nurse navigator work in my medical oncologist's office when I contacted my doctor needing advice on finding a therapist.  He put me in touch with the social worker and I had a good conversation with her while we went over a list of potential therapists.  The nurse navigator is for breast cancer patients but the doctor told me a few months back that he'd like to expand that service to other patients and develop more survivorship support services.  

Missgrace's picture
Missgrace
Posts: 36
Joined: Apr 2012

I was automatically assigned an appointment with a social worker after my diagnosis. I was so scared, angry, resentful, etc. that I immediately cancelled. I didn't want to talk to--or especially get advice from--some optomistic stranger.

Frequently, while waiting for radiation, a cheerful woman with a fluffy dog would visit the waiting room and talk to patients. The first time she started to approach me, I gave her a look that said "I will twist that dog's head off if you come any closer." Actually, I love dogs and have one myself but was not feeling very sociable, to say the least. She avoided me after that. Personally, I can't think of anything worse than having to make small talk with a social worker, but that's just me.

Lorikat's picture
Lorikat
Posts: 556
Joined: Jul 2011

My insurance company offered me a "social worker" to help plan my treatment etc.  call me not trusting, but I declined!

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I sort of agree with you.  My ins. co. has nurse "case managers" who try to steer people to certain providers, etc.  To me, it's the equivalent of "phishing."  I think they look for any little thing a patient might say in order to throw up a red flag, resulting in denial of claims.  I am non-trusting of ins. co's. after working in healthcare for many years and dealing with them. 

When I had the intestinal obstruction back in late January, I first called the nurse hotline provided by my ins. co. hoping to get some feedback about what my pain could be and what I should do.  I might as well have just picked a number out of the phone book and called a perfect stranger for advice, as the nurse I spoke with was unable to tell me anything.  I presume this is all because of potential legal issues.  So my question would be, why do you even have this service if it's of no use to anyone? 

I don't trust ins. co's. any further than I can spit, which isn't far!

Marynb
Posts: 1134
Joined: Aug 2012

When I was being treated for my second cancer, my former insurance company offered me with a patient navigator, a nurse. She was less than helpful. She tried to persuade me to switch to a local hospital, which is as close to a third world facility as it gets in this country. Also, the second cancer is very rare, with few experts in the country and no cure yet. She said I should make it easier for myself and stay close to home. Keep in mind that I am being treated at a world renowned hospital a mere 60 miles from my home! Unreal. This nurse had never been to Boston in her life...an hour away! I told her she should take a nice hour ride someday!
She had never heard of the cancer for which I was being treated. Needless to say, I did not speak with her again.

eihtak
Posts: 818
Joined: Oct 2011

I have yet to hear a positive story regarding patient navigators! What type of training do they REALLY have???? I'm glad you were able to make the decisions that were truely in your best interest. I always worry about those that don't know better.

sandysp's picture
sandysp
Posts: 744
Joined: May 2011

Patient Navigators or whatever they are called - nurse services offered by my care plan, which is really good, actually, are such a nuisance. They want you to answer a lot of questions and are clueless to help. I actually felt they were wanting me to say I was not getting satisfactory care, which is so not true. I told them I am getting the best care in the world where I go and am very happy with my providers. I agreed to talk with a nurse but cut the call short as I just didn't have the energy to explain to some person out there in space on the telephone about my symptoms, etc when I could call my provider for any information or help I need.

The social worker at MSK I spoke with was a good listener and nice and I was able to "let out" some of my feelings with her and my husband there in the room. He was making my stress worse by trying to insist I make a trip to California the week before treatments were to begin even though I was still feeling fragile from the recent surgery I had and in a lot of pain. He finally backed off. I think it helped to have her there. I never saw her again, though.

All the best,

Sandy

eihtak
Posts: 818
Joined: Oct 2011

Thank you all for your responses. The discussion actually started with pros and cons of patient navigators and somehow led to social work intervention in cancer treatment.

Martha, I also agree that insurance companies have made a mess of what could have been a helpful resource. I had a patient navigator call me after my breast surgery that left me with more questions than before!! I never spoke with them again.

It seems that social worker intervention is fairly available if wanted, and maybe for those centers where it was not initially offered the oncology medical staff just need to be a little better about passing the info along. There are some patient/families that would surely welcome and benefit from this help, while others would not be interested.

My area has a lot in-person support groups and a "social worker" comes to some of the meetings but the majority of them are for breast cancer (surprise), and one or two other cancer specific with only one general all inclusive cancer support group and as far as I've heard she seldom goes to those meetings. Most people are not up to going to support groups in the thick of treatment anyhow and we were just talking about the possible needs for help early on.

jubillee's picture
jubillee
Posts: 5
Joined: Apr 2013

I am in Australia and when my partner was first diagnosed with anal cancer an appointment was immediately set up with the hospital social worker. 

This has been a brilliant help. She helped us with insurance paperwork, sorted out Sickness benefits for us. Even got me a small carers allowance, free fuel vouchers to get to and from hospital. Arranged to have $500 of our household bills

taken care of and put us in touch with other agencies who could help us financially if needed.

My partner was the sole breadwinner and this helped enormously with the stress we were feeling as he has not been able to work due to severe reaction to radiation.

eihtak
Posts: 818
Joined: Oct 2011

That is great and exactly the kind of help many would appreciate. It sounds like some others were also offered such a service. How nice to have someone to help relieve some stress at that time. I hope that this type of service is made known to others who may be interested and not just assumed that every patient will have the energy or "know how" to seek it on their own. 

I hope your partner is recovering, unfortunately radiation problems seem to continue for some time after treatment is done.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

I agreed to have a "case manager" and found this "free service" of Blue Cross to be totally useless. I actually thought it was going to be helpful, but found when I got my first phone call and actually asked for some assistance, such as what would be a good hospital to go to for a second opinion, the response was "you should get a recommendation from your Chemotherapist."  Duh. Then I would receive an occasional phone call to ask me how I was doing, and also got a couple of really dumb letters with great suggestions like "talk to your Doctor, make sure you get enough rest, make sure you get enough nutrition, make sure you maintain your hygiene."  Duh.  And they sent me a packet one time where it seemed they were just trying to collect additional information from me; I suspect as does Martha that there was another agenda going on with this "service".  And social workers - don't trust them any further than I can throw them. Sorry for my negative attitude. Just based on my life experiences....

 

jubillee's picture
jubillee
Posts: 5
Joined: Apr 2013

Perhaps it comes down to the individual social worker. In Aus we do have a pretty good welfare service I must admit..

We have many offers of help from agencies. All our utilities bills for 3 months are being taken care of even our car registration.

Plus we have access to free milk bread and butter daily. We have $100 shopping voucher from coles.. $325 free fuel.

We would have been in dire straights without all this help so I feel very bad for those that don't have access.

The thing is, it is the word Cancer. If my husband had broken his leg we would not have had access to as much help.

We are going to be fine now as Sickness benefits kick in next week and will not need the help but so very grateful

it was there when we need it.

Yep Radiation has really taken its toll on Hubby. He is flying through his chemo though so as he said "you can't have it all".

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I'm glad to hear that your husband is fairing well with the chemo.  Radiation is definitely the evil twin in this duo.  It's good that you have gotten the assistance.  Having cancer can create such financial hardships.  That said, I would much rather have had a broken leg than cancer any day!  I wish you and your husband all the best and hope he will soon be done with treatment.

Marynb
Posts: 1134
Joined: Aug 2012

It sounds terrific. I don't think we have any finqncial supports in USA. I am a single mother and no such support was ever offered to me! Sure would have been helpful!!!!!!

2tuff4you
Posts: 6
Joined: Apr 2013

My radiologist has someone in his office who offers advice and helps with emotional and physical ailments

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