Improving The Cancer Journey

[SarahB]

My partner passed away from a metastatic rare cancer earlier this year. I attended a couple of meetings with his consultants this week, as his diagnosis was badly presented and I wanted to point this out. The consultant asked me to put in writing my thoughts as to how the cancer journey can be improved.. the way information is delivereed, follow ups, environment, literature, smiling faces, how to bring up concerns? Implementable suggestions will be put into practice at the royal in liverpool, UK, with the option to roll out further if they work. If you have a moment please jot down your thoughts - things that were brilliant, things that were terrible, so that this piece of work is informed by more than mine and Brian's experience alone! ........Thank you, Sarah x

[SarahB]

Right,
My thoughts so far....

So much of the cancer journey could be improved by good communication.. there are a lot of services on offer, but unless you ask you don't find out about them. You shouldn't have to search for support.
On a basic level I'm going to suggest that a diagnosis of cancer is followed up after a few days with a phone call, to identify how the person is coping with their new status, to ask if they understand what's going to happen next, to see if they have any questions... I regularly checked that Brian understood what was going on, but no medical professionals did, unless in clinic, when you're allready stressed and taking in new information.

I think that posters about support groups etc are good, but it would be much better if the hospital receptionists or consultant's secretarys championed them, told you about them when you arrive, the cursory - 'you can call us anytime' wasn't very inviting.

All staff dealing with cancer surgery should understand the difference between palliative surgery and potentially curing disease. Training should be given to all nurses from local palliative teams, to better understand the emotional impact of a palliative/terminal diagnosis. Brian's priorities changed as his time grew shorter, I suspect that's not unusual. At times his tether grew short too, and this was not well received in hospital, where he became seen as aggressive, rather than scared (and right to be annoyed!)

Anyone agree, disagree, anyone got other areas to discuss...?
xx

[sharon]

There are some really great online support groups, and some not so great ones. Also, there are many face to face groups that are both good and bad. I went to a support group for regular breast cancers and got a lot of general information from them (ie. exercises, lymphadema info, etc.). But, the hospital facilities giving out support group information might feel that they cannot be responsible for the contents or information received in them. Legally, that might put them in jeapordy.

Honesty would be my first 'need'. I had doctors who bold faced lied to me about whether they had ever treated anyone with my rare cancer. And, when I caught them in the lie (by asking more definitive questions), they admitted it as if it were nothing to lie. That really upset me. Then, I met the medical oncologist that I chose to spear-head my case. He said that he knew nothing about my particular rare cancer. He also honestly told me that he and his staff could not invest the time in doing research on my rare cancer; explaining that it was a matter of statistics - he needed to spend his precious research time helping a large percentage of his patients. I was told that he most likely would never see my cancer again, so that research would not benefit a large number of patients. I could understand that. But, he said that he would take the time to read any research that I printed out and brought to him - and I did that. I went to my hospital's medical library where a very sweet librarian helped me research my rare cancer online and in publications. She was a great asset. Most larger hospitals or universities have a library with quality information in them.

In general, I don't think that many hospital and clinicians understand the dying process and how emotional support can make such a great difference in the quality of care. A little over a year ago I was helping one of my closest friends who kept getting sicker. I took him from doctor to doctor with no help. It is a good thing that I have the background that I do, because I figured it out before the doctors did. The odd part about this is none of the doctors who were treating him would say the word Cancer. They used every word they could to avoid saying it. And, they wanted to test him, do surgery, etc. (he was 81). Finally I had an honest talk with him and the we called the doctors into the room and I said "I think he has widely disemminated cancer throughout his peritoneal cavity. Could have started in a number of places, but it has seeded extensively in the ascites within is peritoneal cavity. And, I think he is terminally ill." The doctor in charge of his case said "I would say you are right." Still, not saying the 'words'. I cannot feel like my doctor is really 'taking care of me', if he/she is not honest. These doctors do not seem to be trained in treating patients on a personal level. Either they need/want to stay detached or they just were never taught.

My uncle was in the ICU a year ago. I flew in to town to be with my Aunt and realized on day one that my Uncle was terminally ill. Once again, the doctors avoided the issue. I talked to one of the nurses, privately. She eplained it to me this way - this was a Catholic hospital. There number one priority was keeping the patient alive, at all costs. All of the staff had been trained this way, so meeting the needs of the dying was not 'their thing'. That is where hospice comes in. I have had so many personal experiences with hospice - in an institutional setting and at home. This IS their speciality and I have yet to run into a bad situation with hospice. I am so grateful to them for their kindness and help. Everyone has a right to die with compassion and dignity. Hospice has always helped me to make sure that this happens for those I love.

K, long winded, but lots to say on your subject Sarah.

[Olivers mama]

Sharon - that was FABULOUS! In fact, I'm taking it with me when (or if) I see the med oncologist next month. (I say "if", because, once my treatments were over, he & his staff showed little - if any - interest. So I spent the rest of this year cancelling appts...)

I would say Honesty & Communication - definitely. Cancer patients should be given all the info up front. You're in such a daze once you get the diagnosis that you have absolutely no idea what to ask. Or, at least, I didn't.

Support groups? Not so much. I tried 2 & left just gagging for all the woe-is-me crap I heard. I have found waaayy more info here.

Research the local hospice groups carefully. (My experience was horrible, but it wasn't for cancer, it was an Alzhiemer's patient. As a former nurse, I wanted to belt that hospice nurse so many times, it wasn't funny. We finally had her moved to a long term facility & out of his clutches. That was 13 months ago. Had she stayed with this particular hospice, she would've been dead within 2 weeks.) Palliative doesn't mean you sit back & do nothing. It means you do whatever it takes to take care of the physical AND emotional needs of the patient. And someone needs to be there for the family support people, as well.

And DEFINITELY do NOT forget about the patient when treatment is done. All their wondrous chemicals & radiation won't help if the patient starts feeling abandoned & falls into a depression. (Or, in my case, just got more obstinate! )

Sarah - I am so sorry for your loss. But I thoroughly applaud you in this endeavor. You are a True GEM!

[chestnutmare]

I have nothing but praise for all the wonderful NHS staff who have treated me but there is one in particular I should mention. Every cancer sufferer should have a key worker/nurse. My nurse is called Nuala and I was introduced to her as soon as a consultant had given me my diagnosis (and he came right out with the C word Sharon). She has been a godsend. she always gets back to you if you phone with a query and I am sure she helped me get a swift appointment with the specialist surgeons when I started to get symptoms of jaundice. She knows everyone in all the local hospitals and seems to speed up communication between them to get things done.
So that is my suggestion for improving the cancer journey. Every patient should have a Nuala fighting for them.
Best wishes to everyone, Marian

[SarahB]

Brilliant, thank you all, definately a pro-active cancer specialist nurse is a god send, my Mum had one, Brian didn't so I saw the difference.
Someone outside of this group suggested a buddying system, between diagnosis and treatment, ideally someone local who has gone through similar treatment, our local laryngectomy group are good at this, and they want to spread it across other cancer services.
In terms of support groups I agree they're not for everyone, I don't think they were for Brian, but my point is that if support is out there it's good to know about it, and someone needs to be proactive in signposting what support is available.
I spoke to a specialist nurse yesterday about an information prescription (her term not mine) where you find out what info someone needs and get it all to them in one pack.
There's pockets of good practice, but without honest, positive communicators good work gets lost...

[magdawojnar]

Hi Sarah

I am sorry for your lost. I am facing the fact that in so young age I will probably lose my 35 young fiance. I am pointing out our age because when you are young I think it is more difficult accept these facts. I know that in every age it is difficult. But my feeling is that oncologist and staff who are dealing with terminally ill shoud learn what message should be delivered do the patient and the family. They should watch reactions and contol reactions…

For example when Gregory was diagnosed the message that he cannot be cured almost killed us just at the beginning of now 9 months journey. I could not wake up, walk, stop crying, look after him etc. The message could be delivered for example : “there are minimal, very minimal chances that you can be cured”. This could make a big difference for us. During that journey when the patient and family see how the cancer is progressing, eveybody is getting use to it gradually. From my point of view I cannot wake up and carry on life without any hope. Gregory and I needed hope to wake up every day. We knew that the chances are like 5% and getting smaller every month but we could enjoy better the life thinking about miracles and 5% than nothing. And we still need it even if at this moment his chances are probably 1%. But I am very strong person and I clearly communicated that too all doctors who are looking after Gregory and the seem that they got that message.

People are different, some of them want to hear the wors, other want to concentrate on every day without predicting. Also I know the is a culture difference. We are Polish and we did not use to tell the brutal truth starighth away. We rather say” it is very difficult but we will see what can be done but it will be very difficult” instead “we cannot do anything only try to prolong your life”… It is basicaly the same message but it is told in different way. I feel that some people need to find uot gradually not during one day. Some of us have to prepare ourselves and Gregory and I we are one of them…

Magda

[SILLY]

I think counselling should be offered to all cancer patients early on in their treatment .This is especially important if there are on-going problems caused by the cancer diagnosis and /or the treatment.If one is left with disfigurement ,pain or daily living issues the emotional toll can be huge .Some people have difficulty getting through treatment and some don't feel they want to go on. It should be freely available to all.