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The Teenage Cancer Trust

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Most of my work here at the LAF focuses on our programs serving adolescents and young adults (AYA). Recently I was lucky enough to meet with some AYA colleagues overseas. The Teenage Cancer Trust (TCT) is the preeminent cancer advocacy organization for young people in the UK. They offer education and support services, but where I think they really shine is in the building of specialized care units in hospitals just for teens and young adults with cancer.

I was able to tour their unit at the University College Hospital as part of my visit. I was struck by TCT’s presence from the moment we walked into the hospital lobby. In addition to seeing directions to the pharmacy, labs, adult and pediatric units there was a listing for the Young People’s Unit- which put a smile on my face. In the US young adults are often lost between the worlds of pediatric and adult services- no one quite sure who is best suited to care for this population and their psychosocial needs, much less who is best suited to treat their wide range of diagnoses. And there in London, a specialized unit, just for them… it’s a beautiful thing.

Touring the unit was an amazing experience. The Teenage Cancer Trust firmly believes that all aspects of their units should be tailored to the tastes and needs of the population they serve. TCT fully underwrites the costs of creating units that meet their high standards. Patient rooms have murals in the entry and bathroom and a wall of magnetic paint allowing inpatients to decorate their rooms with posters, pictures, and other mementos from home. They also feature a plasma tv and dvd player, and the patient lounge houses a well stocked dvd library. Recognizing how important peer support and contact is for young adults, TCT sees that all rooms have a webcam, wireless internet and a wireless keyboard and mouse; allowing patients to stay connected from any position in their room. Speaking of staying connected, the unit also provides education services including a school room, a mentor who works with students and schools to keep patients up to date with their studies, and they provide ipods and patients can download podcasts of class lessons. And on the TCT units it’s not just about pampering patients with electronics, it’s about ensuring they receive the highest standard of specialized care from a staff that understands and is trained in the unique needs of young people.

I left my visit feeling energized and anxious to tell my colleagues in the LIVESTRONG Young Adult Alliance about what I’ve seen, and am eager to continue our work toward standards for adolescents and young adult oncology units in the US.

  • http://www.caringbridge.org/visit/patrickbeasley Gina Beasley

    I am so happy I could cry! From the very beginning of my son, Patrick’s final dx of DSRCT May 06 I have spent 2&1/2 years ramming my head into brick walls! Patrick was 20, a sophomore in college and had just spent 8 horrible months suffering through mis-diagnosed symptoms. By the time he was finally diagnosed with cancer he was no longer covered under the family health plan. However it was his only saving grace because the county hospital that I had been so terrified of figured out the problem. On the other hand, if Patrick didn’t have a crazy mom who demanded the care every human being deserves he would be dead today. I would have to write a book to even come close to all we have had to go through, and we live in the land of the free, everyone is equal, the almighty USA! A BIG FAT BUNCH OF BULL_ _ _ _! He was too old to get any breaks, and he was considered an adult that should behave properly, sit up straight, and hide that fear like a man!Just who determined a college student just beginning a life was an adult?
    We sold our 3800 sqr.foot home on 3 acres, and currently are living in my sister’s basement. We sold Patrick’s car as well as his 17 year old brothers, and depleted all 3 of our son’s college funds as well as our retirement account. Thank God above we had what we had. We travelled to New York for a 12 hour surgery by the only surgeon in the U.S. that has successfully preformed surgery on DSRCT. Although I was able to get the state of Mo.to agree to pay for the procedure after being denied, the state of N.Y. said NO. We had to pay for it. We did. It has only been by the grace of God that Patrick is alive because we have had to wait until he became Medicare eligible to proceed with the stem cell manipulation at M.D. Anderson Cancer Center in Houston (We leave 7/12/08) All the wasted time, time that other people have died because of. My passion to educate the world of this horrible plight that will continue on another 2 years for my child, not to mention the battle just to live a normal life once in remission, as you and I have lived. We have no home to bring him home to, my other 2 son’s have no college fund and my beautiful family of 5 hasn’t lived as one since that horrible day in May. Now, where does a family go for help? Who do they turn to? Who helps my other children? That’s right, we don’t have the same resources, we are that group stuck in the middle.I will beg at this point, and actually we are trying to figure out how to get our plea for help out there, put I will, I will! Then I will work my mouth and writings to get the nightmare of a reality that came with in one blink and one inhale.

    Gina Beasley
    beasleypg3@hotmail.com

  • michelle madden

    I am so glad to hear that your son is doing well. My son Chris is 22 in his 4 year of college he was diagnosed with cancer in oct. when he was 21. It has been such a battle he has had two surgeries to remove both testicles. We tried to bank sperm to no avail what a devastated child. The cancer from the testicles had spread to both lungs and his abdomen so we went through the harsh chemotheraphy process. This I would not wish on anyone. I have had such a hard time understanding this, My son has always been such a great kid just amazing I raised him as a divorced mom when he was a year old and he has always been such a blessing. He has faced so much and is still just such a good person going to U.G.A being accepted to any college never being in any kind of trouble. Now cancer has taken his ability to be a father and is destroying his credit which we started building right on his 18 birthday so he would never have to struggle like I did. We can not seem to get help from anyone. I told Chris from the day he was born that if you live right and treat others with respect then you will lead a great life now all the pressure Chemo is very expensive. I feel as though once more I have failed my son who honestly deserves so much.