Utah Hemophilia Foundation HEMOPHILIA TREATMENT CENTER
TREAT BLEEDS EARLY!
by Heidi Lane, HTC Physical Therapist
TAKING CHARGE OF YOUR LIFE
by Dana Appling, HTC Social Worker
HTC GRIEVANCE POLICY
The HTC staff is committed to resolving any issues that the community may have with service, staff, etc. Please read the official HTC grievance policy to better understand what steps are needed to resolve any problems.
GRIEVANCE PROCEDURE AVAILABLE TO PATIENTS WITH HEMOPHILIA IN THE MOUNTAIN STATES (REGION VIII)
The Hemophilia Treatment Centers in Region VIII have adopted the following patient grievance procedure with regard to Hemophilia Treatment Center (HTC) Staff. Each institution (University of Colorado Health Sciences Center; University of Arizona Health Sciences Center; University of New Mexico; Primary Children's Medical Center & the University of Utah Medical Center; Phoenix Children's Hospital) has formal institutional grievance policies and procedures in effect. For grievances within the institution, the agency grievance procedure should be followed. If that procedure does not address the issue, the following steps should be considered:
1. With any grievance against an individual member of the HTC staff, the patient is encouraged to attempt to discuss the issue with the staff member involved. The HTC social worker that has been providing psychosocial services to the patient will support the patient in this endeavor if requested by the patient or family. If the grievance is against the social worker, step two should be taken.
2. If the grievance is unresolved by using Step one, the grievance may then be addressed to the HTC Medical Director for resolution. The Medical Director will be available for a scheduled meeting with the patient/family to discuss the problem in person or via telephone to discuss possible solutions. He/she will then intervene on the patient's behalf if so requested.
3. Grievances unresolved at the HTC level may then be referred to either the Regional Coordinator or the Regional Director for mediation. Either one of these individuals will be available to the patient/family to discuss the problem in person or via telephone. Possible solutions with the patient and the HTC staff will be discussed. The Regional Director may render a decision as the final individual in the appeals process.
The Hemophilia Treatment Centers in Region VIII are committed to resolve patient grievances in a manner that is non-discriminatory. Culturally sensitive and language appropriate mediation will be offered regardless of the patient's race, sex, national origin, immigration status, functional ability, beliefs, values, educational or financial status. An interpreter will be provided where language is a barrier to successful resolution of the problem.
TREAT BLEEDS EARLY!
by Heidi Lane, HTC Physical Therapist
At the first sign of a joint bleed, treat according to the treatment plan you received from your annual comprehensive HTC visit. If it has been more than a year, call the HTC and schedule a visit.
Immediately following a joint bleed, it is important to rest the joint for the first 24 hours. Keep it elevated, wrap it with an ACE wrap and use ice frequently. RICE the joint.
Rest the Joint: Limit activities and/or limit putting weight on the bleeding joint. Use crutches for joint bleeds in the leg, a sling for joint bleeds in the arm. You may need to splint the joint. A splint is custom molded to fit the joint and keep it from moving.
Ice the Joint: Use ice packs or a bag of frozen vegetables (peas or a zip lock bag full of Karo syrum works best). Use a towel or an ACE wrap to secure the cold pack. Place a moist washcloth between the pack and the skin to make it more comfortable. Use ice for no more than 15 to 30 minutes every two hours.
Compress the Joint: Use an ACE wrap to compress the bleeding joint. The compression will help decrease the amount of bleeding. Start by wrapping below the joint with moderate pressure, and gradually loosening the pressure as you move up the joint. Don't wrap so firmly that you cutt off the circulation to your hand or foot. Unwrap the joint two or three times each for one hour.
Elevate the Joint: Lie flat and elevate the joint above your heart. Try to elevate the joint for an hour or two frequently throughout the day.
After the first 24 hours, you may begin to gently move the joint within a pain-free range of motion. It is very important to regain full strength and motion in a joint. A stiff or weak joint will often bleed again, becoming more damaged with each bleed.
If you suspect weakness or loss of function, feel free to contact Heidi, the physical therapist at the HTC (801-662-4766, Heidi.Lane@intermountainmail.org)
TAKING CHARGE OF YOUR LIFE
by Dana Appling, HTC Social Worker
The NHF's National Prevention Program, "Do the Five", brings together the entire hemophilia community through a concentrated effort at preventing and reducing complications of bleeding disorders. It's a common sense approach that incorporates the various elements of living with a bleeding disorder.
At the HTC, we have been working with "the five" for a long time, simply because it is a common sense approach. Each of the various disciplines at the HTC work both uniquely and communally in disseminating information and supporting an accessibility to, and integration of the information, be it physically oriented through medical and physical therapy or psychologically and socially oriented through social work.
As a social worker at the Hemophilia Treatment Center, I look at "the five" from a psychosocial perspective that speaks of finding one's authority in one's own life. This may sound simple; however, when it comes down to actually living from that position, it becomes a bit more complicated for all of us than one might think. Psychologically, we all yearn to be taken care of, to be mothered shall we say, as adults as much as when we were children. The yearning itself is not really an issue, but what we do with the yearning.
In general, by it's very nature, health care (whether from a physical or mental position) often steps into a care-taking role. From this position, it can actually foster a dependency that both subordinates patients and providers alike. For patients, depending on someone outside of themselves for their own self care does not allow for them to step into that self-supporting role of acting on personal choice. They consciously or unconsciously look to others to be responsible for their lives. As providers, getting responsible for patient's lives sets up the dynamic that supports patient's dependency. The very dynamic of taking care of another allows providers to drop their own authority in taking responsibility for their own lives, what often leads to what is referred to as "burn-out". From this perspective it becomes clear that authoritative health care is a co-creative process involving everyone.
So, you may ask, what is the role of the HTC in providing care to hemophilia patients? Where does "taking care" turn into "care taking"? As I understand it, the HTC is there to privde information and support accessing and utilizing the information so that it leads to patient's and families' independence in their choices of self-care. In this process, our hope is that patients and families find that they can and want to lead lives that are separate from and yet a part of this unique community...a community that in turn supports us, as providers, to do the same.
The Five
1. Get an annual checkup at the HTC.
2. Get vaccinated against Hepatitis A & B.
3. Treat bleeds early and adequately.
4. Exercise to protect your joints.
5. Get tested regularly for blood borne infections.