Patients and Families

A Check List for Patients

• Have a semi-annual or annual comprehensive checkup at a hemophilia treatment center
• Receive hepatitis A and B vaccination to prevent Hepatitis
• Receive treatment for bleeds early and adequately
• Exercise to protect your joints
• Be tested regularly for blood-borne infections

Consumer Advocacy

HCWP Consumer Advocacy Committee (CAC) Frequently Asked Questions

What is the purpose of CAC?

It offers the HCWP staff the opportunity to hear what patients/parents have to say regarding programs and patient care issues. 

When was the CAC formed? 

The current committee met for the first time on June 27, 2005. 

How often does the CAC meet? 

There are two meetings at HCWP and one conference call per year. 

Who are the CAC members? 

The committee is made up of volunteer patients and parents.  They represent hemophilia A, hemophilia B and Von Willebrand patient populations.  Both HCWP social workers also serve on the CAC. 

How can patients/parents participate? 

• Talk with members at NHF Chapter events. 
• Attend one of the CAC quarterly meetings. 
• Consider applying to be a CAC member. 

Will the patient/parent suggestions make a difference?

Every suggestion will be discussed in-depth at the CAC meetings.  The social workers will then take the ideas to the next HCWP staff meeting.  After careful consideration, the staff will attempt to implement the suggestions or address issues in a timely manner, as appropriate. 

The committee's advice will help the staff to review patient programs and issues. 

This interaction between CAC and HCWP staff is very beneficial to patients and promotes healthy dialogue and communication.

Who are the CAC Committee Members? 

Janet Barone
Mike Covert
Rita Dull
Lenore Hiller    
Brendon Simpson
Karen Slater
Madonna Smith 
Diane Standish, L.S.W.   
Carol Stauffer, L.S.W., A.C.S.W.

For more information or to inquire about becoming a CAC member, call 412-209-7280, option 7. 

First Step Program

First Step Program Frequently Asked Questions

What is First Step?

First Step is a collaborative program in which chapters, hemophilia treatment centers, and families work together to provide education and support for new parents and families of children newly diagnosed with bleeding disorders.  Early education and prevention starting from the first years of life is highly effective. 

How does First Step work?

The First Step team primarily coordinates two types of local activities:

1. Small meetings or get-togethers which can have both a formal and an informal component.  Education on specific new family issues is the formal component.  The opportunity to meet, talk and network with other parents, some of whom are new and others of whom are more experienced in dealing with bleeding disorders, is the informal component. 
2. Family-to-family through the linking of new parents with mentoring parents.  It fosters a collaborative approach to preventive care for new families. The family-to-family mentorship is ideal for new parents who want to share their stories, questions, or feelings with an experienced parent on a more frequent basis or in a more private setting.  More experienced parents with older children with a bleeding disorder serve as mentoring parents.

How can I get more information?

If you are interested in talking with a parent mentor, becoming a mentor yourself, or attending the educational meetings, call 412-209-7280, option 6/7.

Bleeding Disorders Camp

There are two summer camps available for children and adolescents with bleeding disorders.  The camps feature week-long programs and are held in July and August each year.  The Hemophilia Center of Western PA mails camp brochures to all patients ages 7 - 16 as they are received. The Center nurses participate in camp each summer to provide infusions and assessment of bleeds.

Camp Hot-to-Clot, co-sponsored by the Western PA chapter of the National Hemophilia Foundation and the Lucas Family Foundation. The camp director is Jackie Lucas. More information about this camp can be found at:

www.westpennhemophilia.org

Camp HemoVon; sponsored by the hemophilia treatment center at West Virginia University, is held at Camp Happy Valley, WV. The camp director is Anita Graham, MSW. The camp’s main website can be found at:  

www.charlestonsalvationarmy.com 

Why attend camp? 

Enjoy nature and outdoor activities Make new friends (including others with hemophilia or Von Willebrand) Learn to self-infuse (gain independence and self-reliance) Have fun!

Chapter Events

The Western Pennsylvania Chapter of the National Hemophilia Foundation provides educational and social programs for hemophilia and Von Willebrand patients and their families. For a current listing of events, please click on the following link:

www.westpennhemophilia.org

FAQ

What information do you need from my doctor?

We will need basic information such as diagnosis or reason for referral, urgency of the referral, copy of medical records, bleeding or clotting history, physical exam findings, and key laboratory tests.

Do you see adults and children?

HCWP provides services to affected individuals of all ages, from infancy to old age.

What will a clinic visit cost me?

Patients should check with their insurance carrier for applicable co-pays/deductibles. The HCWP insurance specialist will assist in this process.

Parking is on site and free.

How do I find your clinic?

Click here for directions

What should I expect at my clinic appointment?

Please allow a few hours for your first appointment.

All patients must complete demographic information forms, insurance forms, and a checklist of topics for further discussion.

Next, a HCWP registered nurse will obtain vital signs, height and weight, medication history, and other pertinent information. Health education and information regarding HCWP and staff roles in your care will be provided.

After this, a history and physical exam will be performed by one of the HCWP physicians. Your records will be reviewed, lab tests discussed, and a treatment plan formulated. All of your medical questions will be answered.

As part of our service, you will meet with one of the social workers to discuss issues involved with managing a chronic medical condition. The HCWP physical therapist will also perform an evaluation.

After these evaluations are completed, you will leave the office with a treatment plan, recommended prescriptions, and a follow-up appointment, if necessary.