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Thalidomide survivor calls on government to boost annual payment

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OTTAWA — A Health Canada revamp of a compensation program doesn’t boost annual payments to a level that could make the difference between independence and institutionalization, thalidomide survivor Fiona Sampson said Thursday.

Changes to the federal program announced on Wednesday include an increase to a lump-sum payment for survivors — to $250,000 from $125,000 and an update to eligibility criteria that the Trudeau government acknowledged may have excluded some victims.

Thalidomide was a drug billed as a safe, effective sedative and morning-sickness remedy when it first became available in Canada in 1959 but it was banned in 1962 after it was discovered to be causing widespread birth defects and deaths.

Sampson said Thursday she welcomes Health Canada program reforms but she and a group of survivors are upset the government didn’t also increase annual payments for victims suffering long-term harms from the drug.

She said she felt like the oxygen was sucked out of the room and she was punched in the stomach when she learned that Health Canada’s most recent update, due in the spring, will not include additional annual money.

The department currently provides annual tax-free payments to survivors ranging in three categories —$25,000, $75,000 and $100,000 — based on individual disability level.

Sampson’s group wants that range raised to $75,000, $100,000 and $150,000, adding they were given assurances by the Trudeau government it planned to deliver on additional support.

“To be disappointed, to put it mildly, in the results of yesterday’s announcement is a bit tragic, both in terms of adding insult to injury, literally, and it creates really serious health implications for lots of thalidomiders that are living on the edge,” she said in an interview.

“We have been so patient and have invested such faith and such trust in this government.”

The aging process is compounded for thalidomide survivors due to unusual and unique health circumstances, she added, noting that malformations in her hands and arms make it necessary to use her teeth in ways that they should not be used.

Since falling twice in the past couple years, Sampson said she has been reduced at times to complete dependence on her spouse, requiring him to perform a range of functions “no spouse should ever be called upon to perform.”

“If it weren’t for my spouse, I would’ve been institutionalized,” she said. “I couldn’t go to the bathroom, I couldn’t wash my hair, I couldn’t feed myself.”

Changes to the existing thalidomide support program are also to include a boost to an emergency medical assistance fund from $500,0000 to $1 million.

“We will provide new financial support to more eligible thalidomide survivors, because it is the right thing to do,” Health Minister Ginette Petitpas Taylor said in response to the criticism. “The new program will be opened to new applicants, and will make sure that survivors’ annual compensation is reassessed if their needs change as they age.”

That means if people getting payments at one level develop more serious needs, they can be moved into one of the higher categories. And survivors who haven’t been receiving compensation at all can apply anew for the next five years.

The announcement received praise from a separate group on Wednesday — the Thalidomide Survivors Taskforce — that thanked Taylor for working to improve the lives of Canada’s thalidomide survivors.

“Today’s announcement builds on the program announced in 2015 and creates an additional path for those that may have been impacted by thalidomide to be assessed and recognized,” it said.

Outstanding concerns over the inadequacy of annual payments for survivors is a simple situation to fix, Sampson said Thursday.

“It would cost $4 million a year,” she said, adding it is not a long-term commitment.

“We are dying off and we are dying off fast … Thalidomiders are a creation of the government’s negligence. So this isn’t some kind of good deed that the federal government is so generously engaging in. There really is, if not a legal obligation, a 100 per cent moral obligation.”

—Follow @kkirkup on Twitter

Kristy Kirkup, The Canadian Press

Community

Scott: Healthier weight while taking anti-psychotic meds

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photo of Scott

This story was originally published on the PCN website in May 2018.  

Scott: Healthier weight while taking anti-psychotic meds

My health issue is schizophrenia and the side effects associated with the anti-psychotic medication I take. I had a conversation with my family doctor about the bariatrics clinic at the hospital and he assessed my obesity and referred me to the Health Basics course. I had hoped to get control of my body weight because I have had chronic pain, injuries, and intense frustration with my physical abilities.

A major barrier to my mental concentration was the lack of structure regarding my knowledge around health. I had been advised to control my eating by family and friends but I felt that my weight would naturally sort itself out if I could just get my medications decreased. I had previously connected with a dietitian through AHS however I could not keep a food journal or make adjustments that she recommended.

In the Health Basics program, I committed to the group therapy process and began journaling for the first time. I increased the proportion of fruits and vegetables in my diet. I now plan snacks and focus on “in-control” eating. Further, I practice the 80/20 rule regarding the Healthy Road vs. Easy Street and this keeps my spirits up when I slack off. I simply remind myself that I can make a better choice in any moment to “save the day”.

The last I weighed myself, I had dropped fourteen pounds and my waist was quite a bit smaller. I am getting comments about my physique. I am working through the side effects of my medication with gratitude for the treatment team that helps me, and I am overall noticing less symptoms of depression. In addition, I am maintaining my active lifestyle and achieving the high level of performance that I demand from myself.

I recommend anyone needing weight loss and a healthier lifestyle to take the Health Basics course and attend and participate for yourself AND the others in the group. Make your nutrition a priority because I believe “you are what you eat”. Find a career that forces you to exercise at a high intensity. One big motivator to me is that I need to start a family and I believe that I can have more fun in life with a body that I am happy with.

I am on track to continue to be healthy. I eat enough fruits and vegetables. I continue to journal my food intake. I drink water as my main beverage. I stretch daily. I make my soccer referee job the priority in my career. I am currently participating in the sleep course at the PCN to make sure that I am improving other areas of my health as well.

Here are some other stories from Primary Care Network:

Finally the dam broke

Achieving Mental Health is an Everyday Task

About the Red Deer Primary Care Network

We (RDPCN) are a partnership between Family Doctors and Alberta Health Services. Health professionals such as psychologists, social workers, nurses and pharmacist work in clinics alongside family doctors.

In addition, programs and groups are offered at the RDPCN central location. This improves access to care, health promotion, chronic disease management and coordination of care.  RDPCN is proud of the patient care offered, the effective programs it has designed and the work it does with partners in health care and the community.

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Community

Finally the dam broke

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Donna was getting counselling from the Red Deer PCN Mental Health program. She had lived with an alcoholic husband for thirty some years and then lost him and 6 other family and friends within a 4 month period about 5 years ago. Over the years she had always stuffed her feelings inside so had never dealt with her struggles or her grief.

Her counsellor suggested that she attend the Journeying through Grief program. On the first day she attended the program she felt very uncomfortable. Others were visually grieving and she was not. Why? She didn’t feel she needed to be there or that it would help her so she talked to the instructor about it at the end of class. The instructor suggested that she continue to attend as it can take some time to work though.

When on week 4 program participants were asked to write a letter to their loved one, the dam broke for her. She realized that she needed to forgive her husband for all those years of challenging her and to family to navigate through the frustration and hardship of living with an alcoholic. Without forgiving him, she could never move forward to grieve. Donna is so glad that she continued the course as without it there would have been no change to her outlook and her ability to move life forward.

Donna states,” I enjoyed the program immensely!” She went on to take the Happiness Basics and The Moving on with Chronic Pain program from the Red Deer PCN.

She invited a friend who had also lost her husband to attend these with her. Donna says that “Instead of only dwelling on the frustration and emotional pain I had suffered, I am now able to even think back to some happy times my family had. These amazing courses have made a big difference to my life.”

About the Red Deer Primary Care Network

We (RDPCN) are a partnership between Family Doctors and Alberta Health Services. Health professionals such as psychologists, social workers, nurses and pharmacist work in clinics alongside family doctors.

In addition, programs and groups are offered at the RDPCN central location. This improves access to care, health promotion, chronic disease management and coordination of care.  RDPCN is proud of the patient care offered, the effective programs it has designed and the work it does with partners in health care and the community.

Continue Reading

november, 2019

thu14nov5:30 pm7:30 pmH.E.A.R.T.S (Helping Empty Arms Recover through Sharing)5:30 pm - 7:30 pm

sat16nov4:30 pm7:30 pmVisit The Grinch4:30 pm - 7:30 pm Tribe, 4930B Ross Street

tue19nov1:00 pm3:00 pmDiabetes Discussion Drop In1:00 pm - 3:00 pm

thu21novAll Daysun24Festival of Trees(All Day)

thu21nov6:00 pm11:00 pmFestival of Trees - Preview Dinner6:00 pm - 11:00 pm MST Westerner Park, 4847A-19 Street

fri22nov8:00 pm11:00 pmFestival of Wines8:00 pm - 11:00 pm MST Westerner Park, 4847A-19 Street

sat23nov9:00 am12:00 pmFestival Family Bingo - 1st time ever!9:00 am - 12:00 pm MST Westerner Park, 4847A-19 Street

sat23nov6:00 pm11:00 pmMistletoe Magic !6:00 pm - 11:00 pm MST Westerner Park, 4847A-19 Street

sat23nov8:00 pmRed Deer Nov 23 - Calgary's THIRD CHAMBER - EP release show "Harvesting Our Decay"8:00 pm

sun24nov9:00 am12:00 pmBreakfast with Santa9:00 am - 12:00 pm MST Westerner Park, 4847A-19 Street

mon25nov1:30 am2:30 pmPlanning A Calmer Christmas1:30 am - 2:30 pm

mon25nov6:30 pm8:30 pmRustic Succulent Box WorkshopUnique Workshop to create Succulent Box6:30 pm - 8:30 pm

tue26nov1:00 pm3:00 pmDiabetes Discussion Drop InDiabetes Discussion Drop In1:00 pm - 3:00 pm

thu28nov7:30 pm11:00 pmA special Christmas Musical Event at The KrossingBig Hank's Tribute to the Blues Songs of Christmas7:30 pm - 11:00 pm MST The Krossing, 5114 48 Avenue

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