Role of Social Work as Part of PD Treatment

Abstract

The goals of treatment for PD is to maximize function and attempt to minimize the negative impact symptoms may have on a person’s qualify of life. To achieve this physicians, patients and family members may need to explore additional medical professionals to address all the needs, challenges and concerns associated with living with Parkinson’s Disease. Social Workers can play a valuable role in the care, coping and overall well being of the patient and family members and play an integral part of the treatment team providing in depth psychosocial assessment and recommendations to improve adherence to the treatment plan for each patient/family. Social Workers can assist with a range of needs from the time of diagnosis to end of life. Social Workers can provide assistance at all stages of disease progression to the patient, family and the entire treatment team, therefore it is important for treatment teams consider integrating social workers into the multidisciplinary team approach and opportunities in effort to best address the entire needs of the Parkinson’s patient and their psychosocial needs as the disease progresses.

1. Introduction

“While the medical model has promoted great progress in the scientific understanding of etiology and treatment of distinct and unique diseases, the exclusive focus on illness and disease has left out important contextual influences, such as the subjective understanding and adaptation to illness, environmental and social factors” [1]. In my professional experience in working as part of a interprofessional medical department and working with hundreds of Parkinson’s patients or family members, I believe medical providers and patients/family member believe the goals of treatment for Parkinson’s Disease (PD) is to maximize function and attempt to minimize the negative impact symptoms may have on qualify of life. To achieve this physicians, patients and family members may need to explore additional medical professionals to address all the needs, challenges and concerns associated with living with Parkinson’s. Social Workers can play a valuable role from diagnosis to end of life in the success of the medical treatment, coping and wellbeing of the patient and their family members. Integrating social workers into the multidisciplinary/interdisciplinary/interprofessional integrated approach to Parkinson’s care can assist with treatment compliance, identify challenges, problems, and barriers to care all while working with other professionals to ensure proper care and treatment to address the patients complex needs. “Integrative Care represents a promising direction for the future of health services and may be leveraged to improve population health across the life course” [2].

2. Social worker role in health care settings

In many health systems there are social workers providing social care/addressing social needs to patients and families, however it is not widely integrated in all aspects of the health system structure (in my experience social workers are often found in inpatient health settings and less frequently in outpatient settings) therefore some patients are getting social worker support, while others are not. For the sake of this chapter, I will keep the integration of social care to focus on how social workers can be an integral part of the Parkinson’s Care Team which ideally would include a multidisciplinary or interprofessional approach with doctors, nurses and other allied medical professionals and providers that can contribute a benefit to the overall health, coping and well being of the patient and family during their Parkinson’s disease course.

According to a recent publication, “the United States spends 16.3% on health care and only 9.1% on social services, which doesn’t appear to be that telling on its own, but when you compare to other countries that spend more on social services, those countries actually spend less on health care services. This information demonstrates that investing into social service resources and professional’s health institutions can reduce the spending for health care” [3]. Currently there is not many evidenced based studies to reference showing that a social work “service or task” reduces cost of “this or that”, however several small qualitative studies do demonstrate via survey’s and questionnaires that addressing social care needs has demonstrated positive outcomes for the patients in the study. “Integrative models of patient care have been advocated and successfully implemented with positive outcomes for patients with chronic conditions such as cancer, chronic pain and diabetes, leading to higher survival rates as well as significant reductions in pain intensity and disability” [4].

With any recommendations that suggest adding another medical provider to the clinical team comes the question of finances and how do we “pay” for this added service or care. Currently some medical clinics or health systems may recognize the value a social worker can provide to patients and may cover the costs, in other cases specialty clinics will get grants from organizations to help support the costs of a social worker or receive philanthropic support from private individuals. Ultimately the hope is that insurance companies will recognize and be able to quantify the value of social workers time and effort as part of the team to be billed as a provider for reimbursement, but that is not the case in most situations at this time. In 2019, a committee on Integrating Social Needs Care into the Delivery of Health Care to Improve the Nation’s Health; Board of Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering and Medicine published a book that discussed this particular issue and found data to suggest that focusing spending on social care of patients can reduce the overall medical spending of a health system. “Though many other industrialized nations spend less per capita on medical services that the United States does, the spend a larger proportion on social services relative to medical services and their residents have better health and lead longer lives” [3]. Improving the health and quality of life for our patients is the reason most professionals got into the healthcare profession therefore, it would be in the best interest of our patients to consider and offer social care as a part of their medical care and treatment and find opportunities to fund this added cost of a social worker on the team which can and will improve treatment success.

3. What is social care or psychosocial care as it relates to treating PD

Treating patients with PD can be challenging for a variety of reasons some of which can be due to issues or barriers not directly related to PD (depression, anxiety, apathy, stress, housing, finances, lack of motivation, etc). For example, a patient may have difficulty maintaining compliance with medical care if they have financial limitations, insurance challenges, depression, anxiety, limited or no family/community support or if they have unstable housing. These are issues that can be a barrier to medical care and treatment specifically for PD, however they are issues that often can be addressed and resolved with community resources and/or support programs. These barriers or difficulties in adhering to recommended treatment can also negatively impact a person’s health and mortality. Thus, identifying these social care needs or psychosocial stressors will take a specific assessment, most thoroughly done by a social worker (in my opinion) to ask the questions about living environment, employment, financial limitations, functional abilities, emotional health etc. All areas that can be asked by other professionals however is challenging for a doctor, medical assistant, nurse or nurse practitioner, etc. to incorporate into the already lengthy PD medical assessment and neurological exam. Therefore, integrating a social worker as part of your PD care team can address these social care needs and barriers in an effort to better identify patient needs and appropriate treatment plan.

As we all know, life does not happen in silos, we cannot just focus on health and not work, or focus on kids and not address financial needs, etc. We must find an effective balance or way to address all that life presents. In my experience and as literature also suggests, “Illnesses or diseases have been treated as separate entities and by separate specialists. This episodic and fragmented treatment approach, prevalent in the medical model, can be effective for individuals who encounter an illness that is discrete, of short duration and has limited consequences to work and family, but it is rarely effective for people with chronic conditions” [1]. This is where a social worker’s assessment skills can be used to provide more information to the care team to best address the medical needs and social care needs specifically for Parkinson’s disease. The social worker’s role will extend beyond the day to day management of symptoms and include a fuller picture to try to meet the multiple medical and social care needs of a person with PD both now and in the future. A social workers role in a health system setting is to be aware of therapeutic strategies for treating and coping with PD as well as community resources that will offer support and benefit the patient and family in their PD journey. It is unrealistic to expect that other medical professionals can stay current and up to date on the community programs, or resources that are outside the scope of their practice or education. Medical doctors, nurses, assistants, etc. are educated and skilled in medical intervention for a particular symptom or disease; physical therapists focus on a person’s physical wellbeing, strength, and safety; genetic counselors will focus on the biology and genetic implications for the person and future generations and researchers and scientists will focus on finding meaningful and effective treatments. All these professionals are needed and required to effectively treat and support a PD patient and family, but also needed is a professional to focus on the emotional and social care needs of the person, which is where social workers can be an integral and valuable part of the treatment care team to address the needs of the whole person.

4. Social worker education

Social workers are educated and skilled in many areas. However, the cornerstone of social work practice and skill is building trust and rapport with patients to gain better understanding of the person to best meet their complex needs as a human being. Social workers attempt to provide a safe and judgment free, culturally sensitive and collaborative environment in which we can work with the patient to address needs or concerns. In addition to offering support to individuals’ social workers will advocate and develop plans to better meet individual and community needs. I describe social workers as part detectives, part negotiators and 100% advocates for others. “The core values of social work support the role of social workers on integrated care teams to be advocates for patients [2]. At minimum social workers will have a bachelor’s of social work (BSW) degree however many social workers will also pursue higher education and get master’s level or even doctoral degrees (MSW or PhD in Social Work). Social workers are not required to be licensed to practice social work, but many will pursue State or Federal licensures which require adherence to a code of ethics, participating in continuing education and annual professional development. There are practice standards and guidelines that social workers are encouraged to follow (unlicensed or licensed) called the Social Work Code of Ethics which guide social work principles and practice in all environments from working with individuals, families, to communities or social systems.

“Social work education in the bio-psych-social perspective focuses on the biopsychosocial stressors of chronic illness for the individual and the family. Its person-in-environment approach encourages continuous assessment of the whole person, his/her unique situational context and the social determinants of health. Social work training and skills in relationship building, facilitating communication, counseling, advocacy and community resource access bring unique strengths to interprofessional and integrated chronic care practice settings” [5].

The interdisciplinary or sometimes called interprofessional team approach can be very beneficial not only to the patient, family but also to the medical care team. Social workers can be available to identify issues and challenges and help the other medical providers in establishing a care plan that will best work for the patient. For example if the patient would benefit from a specialized procedure (i.e. Deep Brain Stimulation, DBS) but does not have transportation to get to surgery or a person to care for them after the surgery or to get to follow up appointments, they are not likely to get that procedure done. In some cases this patient might be labeled, uncompliant or does not seem to care about their health, however if a social worker was able to complete an assessment, identify this social care need, then social worker and team can explore more realistic options or assist in finding resolution to the barrier to treatment. This can reduce the providers frustration with patient, reduce what might be labeled as “non-compliant”, and may assist in avoiding crisis or unnecessary hospitalizations or emergency room visits.

5. What does social work involvement look like?

“Social workers frequently support patients and their families as they navigate complex health systems, coordinate multifaceted care plans, provide patient psychoeducation on health and wellness, address behavioral health through a variety of treatment modalities, facilitate connections to needed non-medical resources, and advocate for patients across care teams to improve overall access of care” [6]. Initially when social workers meet patients or family members for this first time we take time to establish rapport and trust with the patient, the biggest focus is to ensure that the patient is the person in charge (if appropriate) and the social worker is there to assist and help as the patient/family needs or requests. The first step is to share what the social worker role is as often times patients may have misunderstanding of what social workers do, and in fairness there are social workers in various aspects of life and thus the roles are different for the setting we are working in. In this case we are referring to social workers in a medical setting working as part of an interdisciplinary team for person’s with PD. Once the patient is aware of our role and has opportunity to ask questions, express concerns, and agree or disagree to move forward with the assessment we can start building trust and better understanding of the whole patient. As alluded to above, if a patient does not want to participate at that time, social workers will respect that wish and let them know that if they change their mind or would like assistance at another time they can always reach out then. With patient/family participation, social workers will move forward with psychosocial assessment (assessment of the social aspects of the person—education, employment, family, finances, fun, personal care needs/ability, responsibilities, etc. as well as the psychological—emotional health, coping strategies, life stressors, trauma, safety, etc). The assessment will offer additional insight for the treatment team about the patient’s daily life, family life, emotional health, coping skills, motivation, stressors, abilities, needs and limitations. Some of this can and will be gathered from other medical professionals as many medical professionals will assess mood symptoms, however with a Social Worker we can dive deeper into the triggers or cause for increased mood symptoms or changes in behavior, which can free up the doctor, physical therapist, nurse practitioner, etc. from having to explore these nuances and human complexities that maybe even the patient has not fully explored or identified and thus the other treatment team professionals can focus on their area of expertise. The Social worker can then work with the patient or family on how all the recommendations from the other professionals can be implemented into their daily life for better medical management of their PD.

Maybe this sounds too good to be true. And truth be told some patients/families will embrace the social work assistance and others will not, but even having the knowledge of a person not wanting social worker involvement can speak to other issues/concerns that the patient is experiencing. If a patient has had a negative interaction with a social worker, they may be reluctant to utilize that resource again, just as if a patient has a negative experience with a medical professional they may seek care elsewhere or stop seeking care altogether. So, no, social workers cannot solve, identify, and make all patients cooperative and compliant (that is a miracle worker and when you find one, please let me know). However, when the social worker is able to complete the assessment and identify stressors, barriers or areas that may cause interference with compliance or quality of life, he/she can offer information, education as well as resources to address these social care needs. For another example, if finances are a challenge or concern and the patient is having to choose between this or that due to limited money, the social worker can explore with the patient what he/she might be eligible for in regards to government financial programs or explore reduced rate utility programs, or medication assistance programs so the person can make their income cover more needs and maintain the wellbeing of the family.

Equally impactful for the patient is a social workers role to help patients cope with PD. Parkinson’s symptoms cannot be stopped or cured and therefore patients and families are forced to adapt to the changes to maintain a quality of life of which they seek. This can be difficult to cognitively and emotionally process and, in most cases, patients will need support and education to effectively process this new “road” they are forced to go down. This is another area in which a social worker can assist patients: supportive counseling, compassion, and education about what to expect, normalizing their experience and connecting them with others in similar situations so they do not feel so isolated and depressed. Helping them process the impact PD will have on future hope, dreams, and abilities is important to maintain their sense of purpose, value and quality of life. Social workers can intervene at that time of diagnosis to lessen the negative emotional impact this may have on a person’s life as the disease progresses.

For this they need to have a trusted professional to discuss what they may be feeling and to normalize and offer strategies to help them process their feelings to minimize potential exacerbation of depression, anxiety, irritability, anger or suicidal thoughts. Mood and cognitive changes are common in persons with PD and while medication is effective to treat it, we also want to ensure that the patient and family has effective coping strategies to manage mood, cognitive changes and any stress in an effort to positively impact their overall compliance with treatment plan and quality of life. To address emotional health and improve ability to cope, we have resources such a talk therapy, counseling, exercise programs, education, support groups, community events, social gatherings and events, etc. that can offer emotional support but are also effective strategies to manage mood and quality of life. Some patients may not want to accept support because maybe they feel they are not deserving or others are worse than they are and they deserve the help more, or it may trigger feelings of failure that they cannot “do it all themselves, independently”. All these feelings are valid and must also be addressed and explored to help the person process the feelings and changes they are experiencing and to help them find a way through the feelings (which are often related to grief/loss) as a result of the PD diagnosis.

Living with PD can be described as a series of grief/losses that patients and their loved ones will have to go through as the disease progresses that will impact quality of life. Learning how to live with the disease knowing that the symptoms of Parkinson’s will change their life in many ways (i.e. impact on interpersonal relationships, ability to work, ability to engage in pleasurable activities, ability to take care of themselves, etc.) takes time and will not be resolved in one clinic appointment. Therefore, the social worker can continue to monitor and assess for any impact grief and loss the patient or family may be experiencing throughout the PD journey and address them as appropriate in hopes to minimize any negative impact on treatment or prevent a crisis situation.

In a clinical environment the medical doctor can only prescribe treatment to the patient, however the patients well-being, compliance and ability to participate is often directly influenced by the family (spouse, adult children, siblings, friend, or other care providers) and without addressing the stressors and social care needs of the family, the Parkinson’s Care team is ignoring a large and influential piece of the patient’s success with treatment. While other professionals are not able to put the time and effort into the family needs or have the skills to navigate the complex family dynamics that are often involved, the social worker can take the time to address these complexities and social care needs which often does improve cooperation and treatment compliance. Which leads us to another aspect of where social workers can be increasingly valuable and effective on the PD care team is identifying the family or social support system the patient lives within.

Throughout this chapter I have referenced patients meaning the persons diagnosed with PD symptoms AND I have referenced family referring to those that interact, support or provide care to the person with PD. While the patient is the center or direct focus of the treatment and the one receiving direct medical intervention and care for PD they are not the only person that may be impacted by this diagnosis. In most situations patients are a part of a family system which also needs to be included in the assessment of social care or psychosocial needs, because family support is often a significant influence on a successful or unsuccessful treatment plan. The entire family or support system of the patient and needs to be recognized and understood as interrelated to best treat the patient successfully. While the patient and doctor relationship are essential to the management and effective treatment of PD symptoms, the rapport and relationship the PD care team has with the family is also essential to the overall cooperation, compliance and success of the individual’s medical care.

In my experience, most people do not recognize their limitations, severity or impact one’s health or symptoms can have on others around them. For example, it is rare that a person will acknowledge they are a “bad” driver yet ask their partner or passengers and you may get a different perspective. This is clearly an oversimplified analogy to demonstrate that the family or other persons involved in the PD patient’s daily life can offer a different, sometimes more accurate, perspective on what is being experienced outside the medical office. PD patients might report feeling good and doing well, taking medications, getting their exercise, following all the medical recommendations, but then you look at their family sitting next to them and their body language, facial expressions or words tell a different story. Exploring what the family is experiencing is necessary and will positively or negatively influence the patient’s medical treatment. If the family is struggling because now they are shouldering the responsibilities the patient used to manage, they may not be able to continue to take the patient to therapies, or manage the medications, or get them to appointments, etc. and this will negatively impact the patients compliance with PD care.

6. WHEN to involve social work and WHAT needs will be addressed

As with most illness early intervention and treatment usually brings the best benefit to the patient and that is certainly the case with involving social workers early on as close to the time of diagnosis as possible. The earlier social workers can build the trust and rapport, the earlier they can have difficult discussions, avoid struggles and help the patient/family avoid possible crisis situations. Early social care intervention can help people with coping, but also with practical life issues that come up with a disease like Parkinson’s. For example, social workers can help patients think about workplace accommodations or future in home care needs and discuss what is available now and what they may need to consider in the future. Social workers can help a person prepare for the changes he/she will face as PD progresses. Social Workers can educate and assist the medical team in knowing what to document so that the patient/family can obtain or utilize disability programs, government programs or long term care needs. Having the medical documentation that medically justifies symptom progression and functional decline early on will assist in avoiding delays in the application process and approval for most programs. This will help reduce stress for patient and the team, allowing for a better transition for the patient and family as the personal care or social care needs of the patient as PD progresses.

7. Social work role at each Parkinson’s disease stage

7.1 Early stage/initial diagnosis (stage 1 or 2)

In early stages social workers can assist with connecting patients and families to education, information and support specific to Parkinson’s so the patient and family can better understand and process what this diagnosis means for both the short term and long term. This can be addressing patient and/or family members feelings about the diagnosis, addressing any questions about disease process as well as assistance with patient and family establishing the support system, they will need to address their social care needs. Areas of focus in early stages often include:

• Coping: emotional health and coping with new diagnosis, mood symptoms,

• Finances: income, financial responsibilities, limitations, or concerns

• Safety: both physical and emotional safety. Suicide assessment

• Employment: workplace accommodations, short term and long-term disability,

• Future planning: Advance Health Care Directives, Wills, Trusts

• Transportation: driving concerns/issues, ability to access and use public transportation

• Education: linking to accurate and reliable education and information about Parkinson’s or Parkinson’s support.

• Social Support: building their support system, linking to support groups, therapy, or nonprofits to integrate into PD community.

• Case Management: care coordination (where to go for PT, equipment, ongoing documentation of needs and disease progression for the care team) as well as advocacy for community needs/resources.

• Exercise: desire and ability to exercise, how to incorporate despite functional changes, linking to community exercise programs for PD.

• Life essentials: access to food, water, housing, clothing, etc.

• Faith-based needs: linking to faith-based resources

7.2 Social work role in middle stage (stage 3 or 4)

As the disease progresses and symptoms increase, social workers can assist the patient or family in identifying safety concerns, long term plans and desires, as well as assist in addressing any issues/concerns that tend to come up in the process of living. Social workers will often start the hard and difficult conversations early with patients about end of life wishes, advance care planning, safety, etc. so that the patient/family and the team have some idea of what the patient wants, this very much can evolve and change over the course of care and treatment, but opening these conversations early can avoid having them under stressful or when a patient/family is in a crisis. While these are similar areas of focus as was in the early stage, however in middle stage is usually when the family will need to implement certain resources to address the changes and disease progression and a social worker can assist in implementing the ideas or thoughts discussed in early stages. For example, in the middle stage patients may need more supervision for safety, may be increased fall risk, may need more assistance with home and life responsibilities, etc. therefore the social worker can link the family to community resources or agencies that fit within their financial constraints, and/or ways to increase independence and safety in the home, fall prevention strategies and as always will provide emotional support during the disease journey. In some cases, legal issues, capacity, guardianship/conservatorship may have to be discussed and explored, which is something social workers can help explore and link to appropriate government or community agencies.

7.3 Social work role in late stage PD (stage 5)

During this stage the role of the social worker will be mostly directed to supporting the family where the role of the medical provider will be comfort and management of symptoms and medication. This stage the social worker will provide a great deal of emotional support, coping strategies and involvement of outside community agencies (like in home assistance, home health services or hospice services) as appropriate. At all stages, but often in later stages family is emotionally drained and unable to advocate or ask for what is needed and in these situations the social worker familiar with the patient and family can advocate to the care team or other providers or agencies to address any needs.

8. Social work role post-mortem

If the family has been involved and engaged in the medical care and treatment of the PD person, it is likely that they have formed a relationship and bond with the care team and may reach out to the team, because that is what they were used to doing throughout the PD journey. In these cases, the Social Worker is likely to be the point of contact and will continue to offer guidance, supportive counseling and linking family to bereavement resources within their community to address any grief symptoms they may be experiencing. It is common for persons that are grieving to seek support from someone familiar and that really understood the complexities of what the family went through during their loved ones Parkinson’s disease.

Social workers can be supportive and validate the feelings of the family because he/she will have historical understanding of how and what the family had to do and sacrificed during the PD journey. Caring for a PD loved one often occurs over a long period of time often 10 or more years and includes many ups and downs and certainly changes the family dynamic, social interactions and purpose to primarily revolve around the PD person. Having this routine and purpose, just end can be confusing and paralyzing for the family in identifying their new normal and moving forward with their lives. In addition, each family member will grieve differently and may require different support or intervention to process and move forward. Aside from processing their feelings and finding ways to emotionally move forward with life, the family may have challenges establishing new routines or priorities, establishing or reestablishing family dynamics and new social interactions. Staying connected to the Social Worker can provide a sense of connectiveness, comfort and normalcy that others not involved in the long term journey PD journey may not recognize or understand and thus assist the family in their grief and moving forward with their lives.

9. Conclusions

Most, if not all, PD patients and families will experience more than just the physical, cognitive or emotional symptoms of PD, but will also experience psychosocial stressors, changes and social care needs for example: altering one’s sense of self or purpose, change the family dynamics, how one interacts with others, how one maintains relationships, and their plans and dreams for the future. These changes can have a profound impact on their compliance with medical care and coping at all stages of the disease. Literature suggests” taking social risk factors into account is critical to improving both primary prevention and the treatment of acute and chronic illness because social contexts influence the delivery and outcomes of health care” [3]. The National Academies of Sciences, Engineering and Medication, also recommends that “effectively integrating social care into the delivery of health care requires effective interprofessional teams that include experts in social care” [3] which can be most effectively addressed by a social worker.

Social workers can be an integral and valuable member of a Parkinson’s Care Team in providing insight and perspective to the team about the patient’s social care needs, limitations and barriers to treatment, but can also support the patient and the family to achieve maximum effectiveness, cooperation and compliance of the medical recommendations. While minimal research and studies have been completed to direct specific interdisciplinary integration, some literature and study results show “an integrative model of treatment, involving a variety of specialties, allows clinicians to interact and treat arising PD symptoms in a more fluid manner than on a strictly referral basis” [4]. Social workers have extensive education, experience, and skills in a variety of areas to address needs, advocate and navigate the complexities of family systems, community systems, health systems, government systems, etc. To provide effective, successful, and comprehensive care to our patients, we must look at all aspects of health and life. Patients are unable to treat Parkinson’s on their own, therefore seek out knowledgeable and competent doctors to assist them, and doctors cannot be expected to be able to address all the physical, emotional, and social needs of Parkinson’s patients without other providers to support them, guide them and be experts in their area of education. It’s the timeless sentiment of “it take a village” and in the case of Parkinson’s disease, establishing an interdisciplinary care team of professionals to address the needs of the whole person will provide improved health, quality of life and over all well-being to individuals and families living with PD.

Conflict of interest

The author declares no conflict of interest.

Notes/thanks/other declarations

Thank you to the expert and caring faculty and staff at the UC Davis Health, Department of Neurology for their support, guidance, patience and trust in me to be part of the amazing Department, it is my honor to work alongside such compassionate professionals. Most of all thank you for recognizing the value of social workers and integrating my skills into the care of your patients.

A specific thank you to Dr. Lin Zhang for his validation and gratitude for my work and giving me the opportunity to share my Parkinson’s and Social Work knowledge and experience through this book and chapter.

Special thank you to Dr. Vicki Wheelock, Terry Tempkin, NP and the Northern California Huntington’s Disease Society of America (HDSA) Chapter for hiring me, teaching me and guiding me, 11 years ago, to work with the Huntington’s Community, which led me to expanded my skills, knowledge and understanding that afforded me the opportunity to work with other patients and families living with Neurological illness, specifically Parkinson’s disease.

Thank you to the Parkinson’s patients and families that trust me with their story to support them in their disease journey. It is an honor and a privilege to work with such courageous and inspiring patients and families.

An extra special thanks to my family and friends that are always loving, supportive and happily listen and participate in local events to support my patients and families because it is important to me and therefore important to them.