Photo: Sumitted
By Annie Ellison
Published: Nov.9, 2013
A concerned mother is afraid her son will die if he stays in Lions Gate Hospital for much longer.
Squamish resident Sandy Mannix can only see her son, 19-year-old Cameron, on weekends.
Her son first entered the hospital in August 2012 because of pneumonia. He’s now wearing a trachea device because he suffers from a rare genetic disease that leaves him non-verbal and non-mobile.
“It’s like they’ve stolen him from me. He hasn’t been outside since 2012.” Sandy Mannix
Cameron needs around-the-clock one-on-one care, and staff at the hospital are worried he’ll displace the device if he’s left alone.
This means he’s strapped to a bed or his wheelchair for most of the time.
Mannix wants her son to come home because she says his health is deteriorating in the hospital.
“It’s like they’ve stolen him from me. He hasn’t been outside since 2012,” she said.
Cameron has lost 18 kilograms and now weighs 30 kilograms. Mannix takes the Greyhound to North Vancouver so she can visit him on her days off, but doesn’t think it’s enough.
She wants to bring him home, where she said he would be happier and healthier.
Jeanette Poulsen, an advocate for disabled individuals facing hurdles in the health care system, is concerned about Cameron’s condition.
“For all of us, as humans, we know this is wrong,” she said. “Having someone strapped to a bed is inhumane.”
She said if Vancouver Coastal Health was giving Cameron the best care possible, his case workers would be trying to get him home. But they’re not, she said.
“I’ve never seen anything like this in my life,” she said. “There is another option.”
Individual funding for home care support is available, she said. If Cameron’s mother, Sandy Mannix, took a nine-hour course, she would be qualified to care for her son.
However, Vancouver Coastal Health said his condition is too severe to allow for home care.
Poulsen said now that Cameron is considered an adult, VCH told the family his only option is a residential care facility.
“It’s where they warehouse the dying,” she said. “It’s not a place for a 19-year-old.”
“It’s like being buried alive.”
Vancouver Coastal Health spokeswoman Anna Marie D’Angelo says the health authority understands the family’s perspective, but claims a team of doctors have said Cameron continues to be high risk and needs care at Lions Gate Hospital.
“All his doctors and care team are in agreement that LGH is the safest place for him to be right now,” she said.
Poulsen and Mannix are in the process of applying for Cameron’s home care funding.
Michael Enders says
Bring him home! Lion’s Gate is unsafe. Period. They almost killed my father!
Paul Caune says
As we know in BC, people with developmental disabilities with complex needs do not need to live in institutions. If VCH & CLBC don’t support this family properly, I suspect VCH will try to put Cameron Mannix in George Pearson Centre. For the facts about George Pearson Centre read http://civilrightsnow.ca/2012/03/george-pearson-centre-is-the-problem-not-the-solution/
jeanette says
VCH spokespersons comments are not correct. I refer her to the minutes of the meeting October 16. The expensive red tape process’s is the true issue.
In fact for Cameron to be home would be less costly to taxpayers and it is the right thing to do.
Rick Hardman says
I’ve spent allot of time in the hospital And always wanted to go home BUT the hospital is definitely the best place to be if you’re sick.
The sense of inconvenience this mother is feeling is not nearly as important as the necessity for this boy to be receiving constant medical care.
Sandy Mannix says
Hi Rick… I appreciate your comment. I am Cameron’s mom.. and thought I would let you know, that my son is no longer “sick”, the hospital wants to discharge him, how ever they want to put him in a long term care facilitie instead of letting him come home. which is NOT the place for him. He has a loving home to come to, with family and friends and alot of support from his home community, He thrived and was a very healthy and happy young man before he got sick last year…. he NEEDS to come home!! There is more to this story than what was reported. If he goes into care, his arms and hands will still be tied down to his bed or wheelchair due to the fact that he tries to pull out his trach (he is severely handicapped and doesn’t know any different)…and he will not have one on one care, where as at home he will have that care…..now if that was your child, would you want that??
Anonymous says
Hi Sandy
I can empathize with you and your son’s situation. My daughter too is trached and on a vent at home. CLBC said there was not the funding to bring her home where she wanted to be!! Well, after a long hard battle low and behold we have the funding in place 🙂 My daughter is happy at home living the life she wants, interacting in the community instead of being held in a germ filled hospital! Keep pushing and fighting for what you believe is best for your son!!!
Cyndie
Michelle says
I too have a severely handicap son, who is almost 12 and I’ve had issues with hospitals making him sicker as well, but fortunately I live in Alberta and they have a much better health care system. I hope she can bring him home, it’s where I would want my child as well.
jeanette says
The reality is funding. Health want to put him in a long term care facility – mom said NO! It is about who pays? If he would go to a LTC facility health would be the prime funders. Now that mom wants to bring him home Health will be pushing for CLBC to be the primary funders although his health needs exceed DD. If CLBC are the primary funders Cameron will never be able to come home because there will not be enough funding to meet his needs. So, the push will be residential care at a higher cost to taxpayers and the worst possible outcome for Cameron.
Ed Alder says
Sad state of affairs that red tape is between the best care outcome & the patient. I recently spent 5 days at LGH for orthopaedic surgery & recovery, and I learned that LGH could not make a sick person well! I was very fortunate to “escape” to heal at home, away from that “institution of poor quality care”
Deb McBride says
the case for his home care has been well stated
he doesn’t need food clothing or shelter, Mom has always provided those
as for care: Mom and a home team provide those too
LGH intensive care is not necessary… so… would that it were possible to transition thru Squamish General HOSPITAL or Hilltop and then to home care
It is really a decision that rests with powers in Victoria… go after them… and get doctors to support here
not that you are not already doing that, or that I know anything about anything…
lucky boy to have you backing and fronting for him! those wolves can be taught
Deb McBride says
don’t give up Cameron
your voice carries weight
Sandy Mannix says
Hi Deb… he’s not ever going to give up…neither one of us will! Thanks for your support. 🙂
“I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything
You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar”
Candice says
I’m sorry but Cameron’s care needs are too complex to be handled by untrained people which is why the hospital has not released him. It would be in humane on their part if they would do so knowing that he requires health professionals to care for him. He requires tube feeding, constant care of his tracheostomy tube as he cannot breathe without it. Lion’s Gate Hospital staff and management are all more than capable of providing the care he needs on a 24 hour basis. Given his condition he is unable to comprehend what is happening around him- especially the tubings and other contraptions which are attached to his body. He could have likely removed all the tubings- tracheostomy, gastric tube and what have you which are necessary in order to provide him airway, food and medications. A qualified nurse should be handling his care-you cannot compromise his health and well being. A facility is a much more suitable place for Cameron.
Paul Caune says
Candace: how do you know all these details about Cameron’s health? What is the source of this information? Did Cameron’s mother give you written permission to share this information with whomever you want to? If you are an employee of VCH and you found out this info on your job, have you not violated VCH policy to protect the privacy of its clients?
Furthermore, your assertions that, ‘A qualified nurse should be handling his care-you cannot compromise his health and well being. A facility is a much more suitable place for Cameron” are just opinion. You are entitled to your own opinion but not your owns facts.
Here are the facts:
1) Cameron has a development disability with complex needs.
2) Community Living BC, the crown corporation which funds services for adults with developmental disabilities, has 13, 700 clients, hundreds of whom has needs as complex as or more than Cameron’s, and none of them live in long term residential care facilities. They live in the community cared for the equivalent of RCAs (not RNs). This has been true for DECADES. I repeat: DECADES.
3) BC and the rest of Canada shut down institutions meant only for children & adults with disabilities because these facilities cost too much to run and the parents who had their children in them demanded they be shut down and their children supported in the community. (Many of these facilities, such as the Woodlands School in New West, abused the disabled people in them [the BC gov admitted this in their recent decision to financially compensate former Woodlands residents).
4) Because Cameron has had a tracheotomy, if VCH forced Cameron into a facility it would most likely be into the 60 year old George Pearson Centre where the quality of life & care of its residents is terrible, as is proven in this essay http://urbansherpafilms.com/hopeisnotaplan/the-film/problem-not-the-solution/
Therefore: a facility is not a much more suitable place for Cameron because a facility would compromise his health and well-being.
Candace, the community living movement for people with developmental disabilities in BC proves that your assertion that “A qualified nurse should be handling [Cameron’s ] care” is not based on evidence.
Sandy Koon says
I imagine she found out this information by looking at the picture in the article! There is a vent and a tube feed clearly in the picture. Use your brain for once. If VCH lets him go home and he pulls out his trach and dies, who will be the people sued for letting him go home when it was unsafe? His mother says he was thriving at home. Well, he was likely not thriving since he likely aspirated and developed pneumonia that required him to be trached…
I am sick and tired of reading articles in the newspaper about the terrible care people are getting in the hospital, knowing that the only reason they get away with it is because the health care professionals there are not allowed to comment and provide the whole story. Do you really think that the hospital is so desperate for patients that they are fighting to keep this person there?!? Or that the long term facility is loosing business and is trying to drum it up where ever it can?!? I bet the nurses and doctors want nothing more than to have the patient (and his mother) go home and never return, but are unable to, because it it not safe for him to do so. Squamish is a long way away from higher levels of care – the hospital there is small and doesn’t support ventillated patients. If something goes wrong, the outcome for the patient is bleak. If he is a DNR, then go for it!
Paul Caune says
@ Sandy Koon; Candace stated in her comment, ” He [Cameron] requires tube feeding.” I cannot see a g-tube in the above photo of Cameron, nor does the article state he has one. You can see an IV with a brown liquid in it, which only people in the know will recognize, since Cameron’s tube feeding would most likely be through his stomach. Therefore Candace is someone privy to Cameron’s medical details, which she’ divulged without Sandy Mannix’s consent.
As to the rest of your self-pitying rant, all is proves is your ignorance. As I stated in an earlier comment BC has not institutionalized people with Cameron’s needs for decades. No credible expert on the global best practices for the care of people with developmental disabilities would recommend institutionalizing Cameron.
Also, in regards to what people dependent on vents need I’m a bit of an expert on that. I’ve been dependent on a vent since Feb 2004. I don’t live in a Long Term Residential Care Facility. The workers who do my trach care are neither RNs nor Respiratory Therapists. I live in my own apartment in Vancouver. Once a month a VCH Community Care nurse comes to my home and he changes my trach. All my vent supplies & maintenance from the Provincial Respiratory Outreach Program (PROP), who service 107 vent dependent people in their own homes all across BC. For more on PROP read http://www.bcits.org/proplink.htm
Ms. Koon you’re entitled to your own opinion but not your own facts.
Sandy Koon says
Now you are really showing how uneducated and uninformed you are. Do you really think that brown liquid in a non-sterile bag goes into your veins?? It’s tube feed. Get a brain or do some research before you spew out comments.
Paul Caune says
Good comeback Sandy Koon–I’m sure you meant it to sting.
This give me an opportunity to correct more of your errors.
After my Op-Ed about Cameron was published in another media outlet (the column can be read here http://beaconnews.ca/blog/2013/12/cameron-mannix-bc-health-system-fails-disabled-man/ ) Sandy Mannix contacted me and told me the picture accompanying this article is out of date. Cameron is no longer in ICU, nor is he using a vent now.
In your first comment Ms. Koon you stated, ” If VCH lets him go home and he pulls out his trach and dies, who will be the people sued for letting him go home when it was unsafe?’ The answer to your rhetorical question, “who will be the people sued” if Cameron died in the scenario you hypothesized is nobody.
Why? Because under BC’s Family Compensation Act Cameron does not meet the definition of a “bread-earner” and therefore if anyone causes Cameron’s death due to negligence the responsible party cannot be sued by Cameron’s family for damages. Sounds unbelieveable but it’s true. Read this for the proof: http://www.protectingjusticeforbc.org/campaigns/wrongful-death/
& http://www2.canada.com/theprovince/news/story.html?id=0179dbc0-9c77-4203-914b-8cd9292b5a56
As to Cameron’s being safe in the hospital, that assertion needs to be compared to the evidence that thousands of Canadians are killed in hospitals every year due to the mistakes of medical professionals. Read this for the proof: http://thewalrus.ca/the-errors-of-their-ways/
Merry Christmas Ms. Koon.
jeanette says
In response to Ms. Koon’s comment.
The article we are responding to is Cameron’s story and situation that has become worse due to a fractured system which the ball was dropped hard.
When reading these stories what should come to mind is, this could be my story – may it be you are born with a disability, disabled from injury/accident or aging – at some point we will be effected. Nobody is exempt!
I wish you a Merry Christmas and Good Health in the New Year and Forever.
Barbara says
Candace:
This young man deserves to be at home with his mother where he is loved and can most certainly be taken care of in the home enviroment. As far as I am aware ‘qualified nurses’ work in private settings as well as hospitals and it’s been proven in many studies that people do better in their own homes surrounded by those that love them. The fact that the young man has lost so much weight in hospital is very telling. This mother is being bullied by the VCH – there are ohter options and I can only imagine her frustration, anger at the system and her agony and fear for her son. There is such a thing as quality of life and regardless of your disability you should be allowed that.
Sandy Mannix says
Thank-you Barbara…. mom knows best!! 🙂
Sandy Mannix says
Hello Paul…
Thank-you for your comment. 🙂
I have no idea who this “Candace” person is… I most certaintly DID NOT give her any kind of permission to share any of this information. I too would love to know how you know so much about Cameron , Candace. Please let me know..
Paul Caune says
There’s been more media coverage of Cameron’s story:
http://globalnews.ca/news/1019833/squamish-family-just-wants-son-home-for-christmas/