A Roadmap from Hospital to Home: A Guidebook for Loved Ones Involved in a Network of Care

Roadmap Æ’rom Hospital to Home A

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Loved Ones Involved in a Network of Care ( LINC )

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You or someone you love has been diagnosed with a mental illness.

You want to know what to expect.

You want to know how to help.

With the right treatment and support, individuals living with a mental illness can and do get better.

Loved Ones Involved in a Network of Care ( LINC ) can help.

Loved Ones Involved in a Network of Care ( LINC ) is a partnership of MetroHealth and the Best Practices in Schizophrenia Treatment ( BeST ) Center at Northeast Ohio Medical University

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Loved Ones Involved in a Network of Care ( LINC ) deďŹ nes loved ones as family members partners/spouses/signiďŹ cant others friends clergy sponsors neighbors or anyone who cares about someone with a mental illness

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Table of Contents Welcome to the LINC Program................................................................................ 07 Addressing Concerns .............................................................................................. 08 Scheduled Appointments ......................................................................................... 11 Medications ............................................................................................................. 14 Current Health Information and Medications List .................................................... 18 Questions for Community LINC Clinician or Psychiatrist/Physician Assistant/Nurse Practitioner................................................. 20

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Roadmap ƒrom Hospital to Home A

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Loved Ones Involved in a Network of Care ( LINC ) AUTHORS Danelle R. Hupp, Ph.D. Clinical Psychologist Senior Consultant and Trainer for Family-Based Services Best Practices in Schizophrenia Treatment (BeST) Center and Clinical Assistant Professor of Psychiatry Northeast Ohio Medical University Mary C. Borovicka, Pharm.D., BCPP Clinical Pharmacist – Psychiatry MetroHealth System CONTRIBUTORS Debra R. Hrouda, Ph.D., MSSA, LISW-S Director of Practice Implementation and Evaluation Best Practices in Schizophrenia Treatment (BeST) Center and Clinical Associate Professor of Psychiatry Northeast Ohio Medical University Erik Messamore, M.D., Ph.D. Medical Director Best Practices in Schizophrenia Treatment (BeST) Center and Associate Professor of Psychiatry Northeast Ohio Medical University

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Welcome to the Loved Ones Involved in a Network of Care (LINC) Program This guidebook will provide information needed to help you and your loved ones thrive. The LINC team understands that you may have questions about illness, medications, and what to do next. The LINC team is here to provide support and guide you as you or your loved one leave the hospital and prepare to receive services in the community. We encourage you to ask questions. We are here to help!

What to Expect You and your loved ones have the opportunity to get better, do better and stay better by participating in LINC. You and your loved ones will attend several sessions with a specially trained LINC clinician at a mental health agency in the community. Your community LINC clinician will assist with: understanding the illness • explaining the how and why of the recommended treatments • improving communication • solving problems • working toward recovery We are here to support your needs. You and your loved ones decide when to meet and what you would like to address. The community LINC clinician can assist so that no one feels overwhelmed, overlooked or unsupported.

How to Help Learn about the mental illness together. Let’s start off by talking about what you have heard about the mental illness, treatment and the day-to-day life you and your loved ones might expect after leaving the hospital. You and your loved ones will have continuing opportunities to learn about treatment and recovery by working with your community LINC team.

Be present. It is important that loved ones are present when the hospital staff discusses how treatment will continue outside the hospital. Extra eyes and ears can gather and remember information, ask questions and seek clarification. The more loved ones know about what to expect and how to help, the better everyone does!

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ADDRESSING CONCERNS The hospital can be an excellent place for healing and rest. However, leaving the hospital often raises concerns. Here are some things to think about to make the transition successful.

What to Expect Leaving the hospital can be a very exciting and also a very nerve-racking time for you and your loved ones. It can be hard to know how to best support one another after a hospitalization.

This uncertainty can lead to increased visits to the local emergency department, calls to 9-1-1 or the opposite — waiting too long to seek help. LINC will help you and your loved ones to monitor how everyone is doing and to know what to do when.

How to Help Follow all treatment recommendations or support your loved one in doing so. Taking all medications as directed and keeping all appointments are key to staying well and reducing the likelihood that you or your loved one will have a return or increase of symptoms again.

Monitor how you or your loved one are doing. When you or your loved one notice a change or worsening of symptoms, contact the community LINC team to discuss concerns and options. Having supportive and knowledgeable loved ones is another way to reduce stress — and can reduce the chances of symptom flare-ups.

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If you or a loved one are: • Having thoughts of hurting yourself, having thoughts of harming someone else, experiencing feelings of agitation or feeling aggressive • Experiencing severe side effects, such as trouble breathing, racing heart, seizures, severe rash, trouble shallowing, high fever or extreme confusion

THEN… Call 9-1-1 or go to the nearest emergency department. When calling 9-1-1, be sure to request a Crisis Intervention Team (CIT) officer. CIT officers are specially trained to respond to mental health emergencies.

Additional resources: National Suicide Prevention Lifeline: 1.800.273.8255 National Helpline 1.800.662.HELP (4357) Crisis Text Line Text HOME to 741741 about any type of crisis from anywhere in the U.S. 24/7

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If you or a loved one are: • Having side effects, such as involuntary movements, restlessness and the inability to sit still, dizziness, nausea or vomiting

-OR• Experiencing symptoms, such as hearing voices or seeing things that others do not hear or see, having a hard time paying attention or thinking or speaking in a disorganized way

THEN… Call the community LINC team. Issues like medication side effects and persistent symptoms are serious concerns and deserving of prompt but not emergencylevel attention. Your community LINC team will often be better-suited to fully address these concerns. We do not want side effects or symptoms to get in the way of recovery, so be sure to discuss any concerns and options with the community psychiatrist, physician assistant, or nurse practitioner.

Community agency: Phone number:

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SCHEDULED APPOINTMENTS What to Expect The hospital team will schedule appointments for you and your loved ones to attend after leaving the hospital. Working with the LINC team and engaging loved ones are also important components for physical and mental health and wellness.

How to Help Be prepared. Keep (or, if necessary, reschedule) appointments, and bring a photo ID, a list of all medications and any insurance information to appointments.

Individuals who do not keep their ďŹ rst mental health appointment after leaving the hospital are

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more likely to return to the hospital within the year

Provide practical help. Loved ones can help by providing reminders about appointments, assisting with transportation to appointments, providing child care during appointments, helping to write down questions to discuss with the community LINC team and accompanying individuals to appointments.

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SCHEDULED APPOINTMENTS The hospital team has scheduled the following appointments: Purpose of appointment: To provide you and your loved ones with an opportunity to meet with a community LINC clinician Name of person you will be seeing: Day/time: Location: Phone number:

Purpose of appointment: To review medication options with a community psychiatrist, physician assistant or nurse practitioner Name of person you will be seeing: Day/time: Location: Phone number:

Purpose of appointment: To meet with a case manager who will assist with coordinating care and community (outpatient) appointments Name of person you will be seeing: Day/time: Location: Phone number:

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Purpose of appointment: To provide initial information to a community mental health agency clinician if you are not already receiving services there (commonly known as an intake appointment) Name of person you will be seeing: Day/time: Location: Phone number:

Purpose of appointment: Name of person you will be seeing: Day/time: Location: Phone number:

Purpose of appointment: Name of person you will be seeing: Day/time: Location: Phone number:

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MEDICATIONS Medications can reduce the length and severity of many symptoms and, when taken as directed, they can reduce rates of symptom relapse and return to the hospital. When used as instructed, medications can help the body improve its ability to tolerate stress, regulate emotion or focus attention. They can help other treatments like talk therapy become more effective. As part of a multi-faceted treatment plan, medications can help to reduce or eliminate symptoms, and help people recover from mental illness.

What to Expect You or your loved one will be given enough medication to take home to last until the appointment with a community psychiatrist, physician assistant or nurse practitioner. MetroHealth Outpatient Pharmacy will prepare medications and bring them to the hospital room.

It will take time for the medications to work. Some people begin to experience improvements within a few days of starting a medication. Many people find that the benefits unfold over the course of weeks or months. Those who get the greatest benefits from their medications are usually those who take their medications consistently, stay physically active, and participate in other therapeutic activities. Medications reinforce the benefits gained from other treatments.

How to Help You and your loved ones may have questions about medications. It is important to ask your community psychiatrist, physician assistant or nurse practitioner: • Please tell me why I am taking this medication and what changes or improvements I can expect and by when.

• Would you please tell me how to take these medications correctly? Would you please write out these instructions so that I do not forget or get confused?

• What side effects might occur and what do I do if I experience a side effect?

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• How many refills do I have?

• What should I look for to know the treatment is working?

• What it is the plan if the medications do not work?

Keep taking all medications as prescribed. Most medications are designed to work best when taken every day over long periods of time. It can be tempting to skip doses when things seem to be going well.

This can lead to problems, such as a rapid return of symptoms, and may end up making the treatment less effective in the long run.

It is best to discuss changes in dosage or stopping medication altogether with the psychiatrist, physician assistant or nurse practitioner. They can help to discuss options and develop a plan.

• If a dose is missed, call the community psychiatrist, physician assistant or nurse practitioner for advice.

• Some medications can be given in the form of a long-acting injection. With a long-acting injection, the medication can be given once every few weeks. In some cases, it may be possible to take the medicine once every three months. Long-acting injections can eliminate the hassle of having to remember to take the next dose. Many people appreciate not having to think about medications as often. Long-acting injections often allow for lower doses of medication over time and can greatly reduce the risks of symptom flare-ups. The community psychiatrist, physician assistant or nurse practitioner can advise if the medication that you or your loved one is taking is available by injection.

• Some medications are prescribed to be taken “as needed.” It is important to take these medications only for the symptoms that they are intended to treat.

The LINC team wants you to be comfortable with medications! The community LINC team knows that medications come with side effect risks — and the psychiatrist, physician assistant or nurse practitioner know of ways to reduce or eliminate side effects. Everyone on the LINC team wants you and your loved ones to feel comfortable with treatment. We encourage you to speak up about any concerns.

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MEDICATIONS Provide or accept practical help with medications. Request or provide assistance with picking up prescriptions or setting up reminders to take medications and request refills. Make a calendar, set up a pill box or set an alarm on the phone to go off when it is time to take a medication.

Provide an accurate, current list of medications and other health information. Every doctor you or your loved one sees will need to review a current and complete medication list. Be sure to carry a complete list of: • ALL the medications being taken now (not just the psychiatric medications) — and include vitamins, herbal preparations, supplements and over-the-counter medications • ALL allergies • ALL names and contact information for current health care professionals One of the most important things that you or your loved one can do is to keep track of every medication taken in the past. Make a list of the dates that the medications were prescribed, the dosages and when the dosages were changed. The list should also include whether or not the medication (or combination of medications) was helpful. If it was helpful, make note of what symptoms improved. If the medication (or combination of medications) did not work, please note if symptoms got worse or there were associated side effects. You or your loved ones are in the best position to track this information, and this medication history can help your psychiatrist, physician assistant or nurse practitioner determine the most effective treatment.

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Avoid smoking or using alcohol or non-prescribed drugs, especially marijuana, when taking mental health medications. These can interfere with the effectiveness of the medications and can cause troubling symptoms.

Do not wait until medications have run out to call for more! When there are about seven days of a medication left, it is a good idea to call the pharmacy and request a refill. Some pharmacies have phone numbers that you can call and leave messages about prescriptions that you need refilled. Be prepared when you call: You will need name, date of birth, contact information, the prescription number on the bottle, the name of the doctor who prescribed the medication, the name of the medication and the dose.

Discard extra medications. When a medication is changed or the amount of medication is increased or decreased, there may be extra medications that are no longer needed. To avoid confusion, do not save extra medications. Check with a community pharmacist about how and where to dispose of medications safely.

Do not go online for information about medications unless a health care professional specifically recommends a site. The internet is full of conflicting and inaccurate information. The psychiatrist, physician assistant, nurse practitioner or pharmacist are the best sources of information about specific medications and needs.

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CURRENT HEALTH INFORMATION AND MEDICATIONS LIST Date Last Updated:

Name: Emergency Contact Name/Phone Number/Relationship to You:

Allergies:

Pharmacy Name, Address, Phone number:

HEALTH CARE PROFESSIONALS Name and type of provider: Phone number: Name and type of provider: Phone number: Name and type of provider: Phone number: Name and type of provider: Phone number: Name and type of provider: Phone number:

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Date of Birth:

CURRENT HEALTH INFORMATION AND MEDICATIONS LIST Date Last Updated: Name:

Name of Medication (including over-the-counter)

Date of birth:

Strength and Frequency

Condition Medication Taken For

Medications Discontinued:

When:

Medications Discontinued:

When:

Medications Discontinued:

When:

Medications Discontinued:

When:

Medications Discontinued:

When:

Professional Who Prescribed

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QUESTIONS FOR COMMUNITY LINC CLINICIAN OR PSYCHIATRIST/PHYSICIAN ASSISTANT/ NURSE PRACTITIONER You and your loved ones have the opportunity to get better, do better and stay better by participating in LINC. Please jot down any questions you may have about the following to discuss with your LINC team members: The LINC Program:

Mental Health Condition:

Addressing Concerns:

Scheduled Appointments:

Medications:

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NOTES

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NOTES

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NOTES

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Promoting Innovation. Restoring Lives.

Best Practices in Schizophrenia Treatment (BeST) Center, Department of Psychiatry, Northeast Ohio Medical University.

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