Mental Health Needs of People with MS An enormous amount of progress has been made over the past decade in the availability and effectiveness of treatment options for people with certain forms of MS (relapsing). But from my perspective, much remains to be done in the area of mental health. An article (Patients' perspectives on quality of mental health care for people with MS) recently published in the journal General Hospital Psychiatry confirmed my suspicions. Dr. David Rintell of Boston's Partner's MS Center and his colleagues conducted a series of focus groups with people with MS who had received some kind of mental health care in the prior 2 years. He found the following:
Need for Mental Health Services Immediately Upon Diagnosis Participants said there was a need for mental health services immediately upon hearing the diagnosis of MS. They said the diagnosis was life changing and that people with MS should have mental health issues addressed immediately at the time of diagnosis.
Ongoing Attention to Mental Health Issues Critical Because of the complexity and unpredictability of MS, it is important for healthcare providers to be aware that emotional issues can arise at any time, not only at the time of diagnosis. Some participants reported that these issues were only addressed when they reached a crisis. Others said that they asked their providers for help only after struggling with depression or anxiety for years and when other life events overwhelmed them. It is important for healthcare providers to ask their patients about these issues directly at each visit.
Offer a Counseling Referral - Not Just Medication
Finding a Mental Health Provider Can be Difficult Participants reported that it was frequently hard to find a mental health provider that was a good fit. Wait time to see a provider was considerable. Patients were often left on their own to find a provider and needed to meet with several before they found one they felt would meet their needs. They said they found it discouraging to tell their stories repeatedly, particularly when the therapist did not understand MS and MS-related concerns. All participants agreed that there were not enough qualified providers in their communities.
Physical Barriers Make it Difficult to Access Care Stairs or lack of parking make it difficult to enter the provider's office. Some providers were willing to see patients in their homes if they were unable to navigate their offices.
Address Financial Barriers to Care
Desired Characteristics of a Mental Health Provider
Familiar with MS--do not want to educate the provider about the disease
Understands how MS affects mental health, cognitive function and family and the side-effects of the medications used to treat MS
Understands the burden of a chronic and unpredictable disease and are able to suggest ways to handle practical problems related to MS
Has experience working with people with MS
Understand that MS is not the only stress in their lives--MS is not the whole picture
Most important quality is that the provider was caring about their client and sees them as a whole person--not just someone with MS
Understands what it is like to live with the uncertainty of MS
Accepts the way each person chooses to deal with the illness and that some degree of denial was helpful at times
Understands some of the key issues of grief and loss, self-image and relationships
Is open to including family members in counseling (or not, depending on the desire of the client)
Open to the benefits of antidepressant medication and willing to monitor the response and side effects
Willing to communicate and coordinate with the with the rest of the treatment team, especially around medication issues
Capitol Hill Healing Center 750 E. 9th Ave., Suite 208, Denver, CO 80203 firstname.lastname@example.org 507-400-2778