A Guide to Patient Advocacy

Transcription

1 A Guide to Patient Advocacy Speak Up! Be Heard! & Don t Be Scared! What you need to know about healthcare advocacy and becoming more actively involved in your healthcare. Prepared by: Healthcare Support Ltd trading as Patient Advocate Services

2 Introduction This information leaflet is for everyone. It is for patients, their family and carers. Whether you are a patient attending for treatment, an elderly patient feeling vulnerable and fragile, a pregnant woman or a parent caring for a sick child, this information leaflet can help you. It will assist you in actively engaging with your healthcare provider and knowing when to call the Patient Advocate to support you. A medical appointment can be scary and intimidating or it can be a positive experience. Most healthcare providers are dedicated people who work hard in the interest of others. The vast majority of patients leave the hospital in better health having had a positive experience. Don t feel helpless or compromised. An advocate can help you to feel empowered, knowledgeable and confident to engage with your healthcare provider. What is Advocacy? Advocacy is helping people to say what they want, representing their views, securing their rights and obtaining the services they need. It is a shared process involving key personnel for example, hospital or nursing home staff, medical or nursing staff and other healthcare experts all working to address specific concerns that the patient or their relative may have. 2 What is a Patient Advocate? A patient advocate is someone who can assist you if you are encountering difficulties in dealing with your doctor other professionals, your hospital or nursing home or even if you just want answers to any questions you may have. An advocate is independent and will represent you and your views without prejudice ensuring that your views are heard, respected and acted upon.

3 What can your Advocate do? Support you if you have concerns or a complaint. Enable constructive engagement in a safe and confidential manner. Advise you on how to access information. Write letters on your behalf. Attend meetings with you in a supportive role. Help when you do not feel able to speak for yourself. Access information, on your behalf, about your health and healthcare services. Explore your choices and options. Generally to assist you to get the healthcare you deserve. It is important to remember that although the advocate can help you to get answers; you may not always get the answers that you want to hear. However, your advocate will ensure that the information given is factually correct and that this has been explained to you in a clear, concise and compassionate manner. When to call a Patient Advocate? If your Healthcare Service has failed you and you feel powerless. If you need support in getting answers or in obtaining documentation. When you wish to make a complaint but do not know where to start. When you feel lost and vulnerable in the complex healthcare system while battling a serious illness. When you wish you had more support but don t know how to get it. When you need an independent person to represent you or speak on your behalf. 3

4 Working with your Advocate When you engage an advocate to work on your behalf it is important that you feel that you can work comfortably together and that you will be provided a professional, confidential and trustworthy service. Ensure that you ask what your Advocate can do for you, how much it will cost, and what experience he/ she has. Be Prepared It is natural to be anxious when attending your doctor and it is difficult to be assertive or confident when you are worried, ill or feeling intimidated. That is why you need to be prepared in advance of your hospital or clinic visit. It is alright to ask questions and when you do ask a question you are entitled to answers in a manner that you can understand. Write down your questions before you attend your doctor or clinic. Be involved in your own healthcare and let your health care provider know that you want to participate in all decisions about your treatment plan. Speak with your family about decisions and your wishes in the event of a crisis. Prepare for your hospital visit as you would prepare for a job interview. Research, question and get answers. Feel confident that you will get the best healthcare service possible and treat your healthcare provider with the respect that you wish to receive. Rights 4 You have the right to be treated with respect as a person and not a diagnosis. Your healthcare provider has the right to be treated with respect.

5 How to ask questions and understand what is happening. I don t understand. Can you explain that again please? I am really worried about can you give me a little more time to talk about my concerns? Do you mind if I bring someone in with me as support? If I have any further questions is there someone on your team that I can talk to later? Do you have an information leaflet on the procedure that I am due to have? What are the alternative treatments for my condition? What are the risks? Before I proceed with my surgery is it possible to get a second opinion? Confidentiality Patient confidentiality is a fundamental part of healthcare and must be respected by all healthcare providers. Be clear about whom you wish to be your nominated next-ofkin. If you wish your next-of-kin to have access to your personal healthcare information give written permission for them to do so. If you wish a Patient Advocate to act on your behalf you will be asked to sign a consent form of authorization for the release of information on your behalf. Your engagement with your Patient Advocate is confidential and professional. Accessing your Healthcare Information You may request a copy of your medical record under routine access and in most circumstances this will be released to you. You must make this request in writing and enclose proof of identity. 5

6 Freedom of Information The freedom of Information Acts 1997 & 2003 give you a legal right to have access to records held by a public body. To have your records amended where the information is incorrect, incomplete or misleading. HIQA Health Information and Quality Authority Extract from HIQA s National Standards Person-Centred Care and Support places service users at the centre of all that the service does. It does this by advocating for the needs of service users, protecting their rights, respecting their values, preferences and diversity and actively involving them in the provision of care. Person-centred care and support promotes kindness, consideration and respect for service users dignity, privacy and autonomy. Some categories of Advocacy Self-advocacy Self-advocacy is about speaking out for yourself, knowing your rights, and being able to make choices and decisions that affect your life. Group advocacy Group advocacy is a meeting of a group of people who have had similar experiences and who wish to campaign and advocate about issues raised by the group. 6 Advocacy in Hospitals Most hospitals have a Patient Representative or a Patient Advice and Liaison Service that you can access for advice and support. Professional staff such as social workers also advocate on behalf of the patient.

7 Citizens Information Advocacy The Advocacy Support Worker will work as part of a national team on the development and implementation of quality standards in advocacy practice in Citizens Information Services. Volunteer Advocacy Volunteer advocacy is unpaid and the advocates normally work in partnership with a Healthcare Provider or state agency. Paid Advocacy The Advocate is privately engaged by the patient or by a family member or a healthcare provider on behalf of the patient, and is independent. Patient Advocate Service is a private independent Advocacy service. Some useful services Medical Council of Ireland Kingram House, Kingram Place, Dublin 2. Tel: Web: Office of the Ombudsman 18 Lower Leeson Street, Dublin 2. Tel: Web: An Bord Altranais Carysfort Avenue, Blackrock, Co Dublin. Tel: Web: Office of the Information Commissioner 18 Lower Leeson Street, Dublin 2. Tel: web: Web: 7

8 We hope you found this information useful. Contact Angela Connolly, Patient Advocate Services, if we can be of any further assistance at: Telephone: or Web: 8 Patient Advocate Services is a trading name of Health Care Support Ltd. Company Number