Empowering Health Consumers – Healthcare information for people with disabilities

Welcome to the Empowering Health Consumers with Disability online session My name is Tania Harris and I'll be your presenter today

I'd like to start by acknowledging that we are recording this session on the traditional country of the Whadjuk people of the Noongar nation I'd like to pay my respects to Elders past, present and emerging; and recognise and pay respect to the cultural heritage, beliefs and relationship Aboriginal people have with the land which continues to be important today The Empowering Health Consumers with Disabilities is a joint project with People with Disabilities Western Australia and the Health Consumers' Council of Western Australia It was funded through an information linkage and capacity building grant in the Department of Communities The project was started because it is well recognised that having a disability can mean that you don't always get equal care outcomes, that you may get sicker and need to spend more time in hospitals

Being in hospital is never great for anyone, but for people with disabilities it can be even harder This is because of things like communication barriers, complex medical issues, sensory issues, and a lack of understanding of disability by health staff It is also recognised that a person with an intellectual disability can have a lower life expectancy than other people and that in many cases this is preventable It is important that everyone knows their rights and that they can expect to get as good of a service as anybody else In today's session we're going to talk a little bit about the health system, medical records, informed consent and information sharing, your rights as a health consumer, preparing for appointments and ideas on how to get better care, where you can go for help self-advocacy, and getting your voice heard

WA is the largest area in the world covered by a single Health Authority There are over 44,000 staff, over a million emergency department presentations per year, eighty-six thousand elective surgeries and over twenty-five thousand babies delivered Health gets the most money from the state budget Thirty-one percent of all State Government spending is on health and that equates to around a nine billion dollars a year Area health services are responsible for the services in their area

We have five of them and they each have their own board and executive managers They get their own budgets and they all sit under WA Health and the Director General of Health WA Country Health Service administers all public health services outside of the metro area They also administer the Patient Assistant Travel Scheme There are seven regions within WACHS

Child and Adolescent Health Services run Perth Children's Hospital and a variety of services for kids in the metro area They run the Child and Adolescent Mental Health Service and community health They are also responsible for school nurses and the Child Development Service East Metropolitan Health Service runs from the Armadale Hospital out to Midland and up to Royal Perth Hospital The Community Mental Health Services like your Euoria Street are a part of the East Metropolitan Health Service

Saint John of God Midland public is also a part of East Metropolitan Health Service North Metro Health Services cover from Osbourne Park Hospital, Joondalup Hospital, Sir Charles Gairdner Hospital and Graylands Health Hospital South Metropolitan Health Service includes Fremantle Hospital, Peel Hospital, Pinjarra Hospital and goes up to Fiona Stanley Hospital Also we have Population and Public Health This operates under its own act: the Public Health Act

Its function is to manage the health of communities and the populationThey have a Chief Medical Officer and they manage things such as infectious diseases, chronic disease, prevention, environmental health and Public Health genomics We also have the Mental Health Commission the Mental Health Commission is a commissioning body which purchases mental health programs and services from over 100 non-government organisations They provide oversight of the Mental Health Services in Western Australia and they include the Office of the Chief Psychiatrist

community-based services such as Next Step – a drug and alcohol service – and community pharmacotherapy such as the Methadone Program are also run by the Mental Health Commission The Commonwealth Department of Health is the Federal Health System This takes care of Medicare and the pharmaceutical Benefits Scheme It sets out national policies and funds a percentage of State Hospital and health systems It also funds the Commonwealth Dental Scheme and manages My Health Record

When we talk about 'primary health' we're talking about health services that are not provided in a public hospital Health services that are available in the community such as your GP and GP clinics, allied health such as Physiotherapy, Speech Therapy and Occupational Therapy This includes Psychology and Audiology, medical specialists and some imaging services Services that aren't based in a hospital and are usually Medicare billed the WA Primary Health Alliance is an organization previously known as Medicare Local

It is funded by the Commonwealth to commission primary health services and programs throughout WA Now we're going to talk about rights, we're going to talk about medical records, information sharing and informed consent A medical record is a record of your medical information: including your medical history, care, treatment received, test results, diagnosis and medications taken Medical records are kept by all hospitals, doctors and allied health practitioners All services have a responsibility to store and keep your records private

You have a right to access your medical records These can be applied for if it's in a public hospital under the Freedom of Information Act If it's from a GP or private service it's under the Privacy Act There may be a cost involved and that will take around 30 days for them to get the records back to you There are circumstances where they can black-out or deduct names to protect privacy of third parties

If they refuse you can contact the Privacy Commissioner or an advocacy agency for assistance It may be the case that your medical record, once you receive it, is not correct It's important to know that medical records can't be changed, however you can apply for a notation to be added to your record Medical records should always be factual and non-judgmental Medical records are a mix of clinical information and observational information

Staff record from their perspective and that may not always be how the patient has perceived the same incident In My Health Record you can hide some of your documents My Health Record is an online medical record system that the Commonwealth has created for every Australian This is accessed through the MyGov website and if you haven't already opted-out there would be a record for you now The information in the record varies and it can have things like: hospital discharge summaries, GP notes, pharmacy scripts and sometimes scans and blood test results

It can also hold your Advance Care Directive or Health Care Plan Services do share information when it's relevant, so a GP will send information to a specialist for a referral and will receive the notes from the specialist After the appointment medical records aren't generally shared between services, but relevant information can be You will have to give your permission in most cases for your doctor to talk to someone about you For example: your teacher, a therapist, etc

Consent is your agreement for a health professional to go ahead with a specific treatment This is a legal requirement, WA health and all other health services have a policy on consent it's a very serious and important issue and both doctors and health staff need to be in agreement Under WA policy it is a six step process Number one is to work out which health professional is responsible for seeking consent

Number two is to assess the patient's capacity to give consent Number three is to provide enough information to the patient that they can make an informed decision Four is to verify the patient has understood the information that they have given and all of their questions have been answered Number five is to ask the patient for their decision Number six is to record the consent

The most senior health professional in the team must be satisfied that consent is valid If you're having surgery there will be another consent process for the anesthetist All adults should be assumed to have capacity to give consent and this is assessed during the process Capacity is decision specific This means that some people might be fine to make decisions about more simple treatments, but might need some help with more complex decisions

Children can also be assumed to have consent or capacity as they get older and they might be called mature minors There is no determined age for this, however it is often around 13 or 14 years old The policy states specifically that if a patient has low English proficiency or special needs, the service is required to engage a translation or interpreting service They cannot rely on family or friends The consent stays valid until we withdraw it or until circumstances change and what we agreed to is no longer appropriate

They also need to ask you before they actually do the treatment if you still consent If you are in an emergency situation and unable to give consent they can do what is necessary to save your life You can only give consent when you know all about your condition, the treatment options, risks and benefits You don't have to agree on the spot You can ask for time to go and talk to someone to get another opinion, or to do your research if you don't understand, don't agree, or sign

If you can't make decisions there is a hierarchy of treatment in health care emergencies This is who the hospital will get decisions from At the top of that hierarchy is an Advanced Care Directive Decisions must be made in accordance with the Advance Health Directive unless circumstances have changed or could not be foreseen by the maker Following that is an enduring Guardian with authority: this is a guardian who was chosen by the person to make decisions for them

Next is a Guardian with authority: this is someone who is appointed by the State Administrative Tribunal to make decisions for the person Then comes spouse or de facto, an adult son or daughter, parent, sibling, primary unpaid caregiver or other person with close personal relationship My Health Rights – everyone has rights and these are things that we can expect from every health service and health professional These rights are upheld in various policies and legislation Today we're going to talk a little bit about the Australian Charter of Health Care Rights, the Disability Discrimination Act, Carer Rights and the Carer Recognition Act, Disability Access and Inclusion Plans, and Mental Health Rights and the Mental Health Act

The Australian Charter of Health Care Rights says that the legal rights as a health consumer are based on two basic principles The right to give or withhold your informed consent to treatment, and the right to competent care from health service providers Some of the things that you have a right to include: to be treated with care consideration and decency, to receive clear explanations and information; to ask questions about the service and any proposed procedures and its risks and benefits; to be given time to understand the information provided; to be informed about the cost of treatments; to be informed if the procedure is experimental or a part of research; to ask for a second opinion; to give informed consent about treatment and withdraw consent at any time; to appoint someone to make decisions on your behalf if you cannot make those decisions yourself; to leave the hospital at any time except in the case of some infectious diseases or psychiatric conditions; confidentiality of personal reports and records; to complain if you are not happy; redress in the event of injury; to have access to your medical records and the right to an interpreter The Disability Discrimination Act of 1992 is there to eliminate as much as possible, discrimination against people on the grounds of disability; and to promote the fact that disabled people have the same rights as every other person It is acknowledged in the Disability Discrimination Act that sometimes people with disabilities will require additional services or tailored support to enable them to access health services

Services have to make what they call 'reasonable adjustments' to accommodate a disability and this may mean that they provide an Auslan interpreter if they're deaf at an appointment where you have to give consent for surgery Complaints about services failing to meet the Disability Discrimination Act expectations can be made to the Equal Opportunities Commission Disability Access and Inclusion Plans, a DAIP, is a plan that all government departments must have and must make available publicly They look at things like physical access to buildings, toilets, resources like brochures, and make sure that they are meeting the needs of disabled people A DAIP is a way of ensuring that a service is responsive to the needs and considers the needs of people with disabilities

The service has to measure and report back to the State Government on their progress to see how well they have done The Mental Health Act of 2014 sets out the rights of people with mental health illness It explains the rights of Carers, the Charter of Mental Health Care Principles and the care treatment and best interests of people with mental health illness and mental health rights of involuntary patients Involuntary patients have some very specific rights Involuntary patients can either be inpatients in a hospital or in a community treatment order

Both of these patients have access to a mental health advocates Involuntary patients can have their status reviewed by the mental health tribunal People can make someone their nominated person This is someone who will then have the same rights as a carer or close personal friend Involuntary patients have the right to request a second opinion

The carer recognition Act of WA was developed for services to acknowledge the role carers play in the lives of people they love Although there is some confusion over the carer or support worker label, a carer under this act—and how we're talking about them now—is someone who is: not paid and someone who provides ongoing care for someone with a disability or chronic illness or mental health illness A person is not a carer just because they are a spouse, partner, parent or guardian of a disabled person Carers have rights in the health service Treating carers respectfully and keeping them informed and involved are some of the things that services should do

Carers also have the right to lodge complaints with services about things that have happened Carers must be included in the assessment, planning delivery and review of services that impact on them and their role as a carer Some ideas on getting better care we're going to talk about are: preparing for appointments, finding a good GP and some top ideas Medical appointments can be really full-on and sometimes you go from clinic to clinic, specialist to GP, and back around again To get the very best out of your time it can be good to do some preparation

Make some notes and have a think about the appointment If you have a lot of appointments it can help to put them in your phone calendar If you have a few clinics to attend you can call Outpatient Direct and get them to give you all of the appointments they have listed that are coming up You can grab a notebook and make a list of questions as you think of them, have separate sections or different book for each specialist or health worker you see Read over the list before you go to the appointment

Don't forget to call them a week or two before you go if you need an interpreter or something specific at your appointment— like a hoist a quiet room—and remind them to book it sometimes people use family or friends to interpret and that can be okay for routine appointments, but if it's an appointment where treatment decisions are being made the service should be looking for a professional interpreter Give yourself a lot of time, we all know how long these clinic appointments can take If you need to have them first or last thing—and that is a reasonable adjustment that the service should make because of your disability—ask for it and explain why For example if you have cerebral palsy and get extremely tired by 11:00 a

m which affects your pain management or ability to focus on topics, that's reasonable and they should try to accommodate you Take your time, this is your time If you use a communication device that takes longer let the clerk know beforehand, but also make sure you know yourself that it's okay Don't let them rush you, we know that there's people waiting and the doctor's time is important but so is yours

Take someone along to support you if you think that that's going to help make sure that you ask all of your questions, and that you understand the answers You can always ask the doctor to write it down for you if you want to talk to someone about it later Take your time, clinics can be busy but this is your time do as much as you can while you're there If there are scans or tests do them on the spot if you can It's always good to ask your doctor questions about treatment that you're having

Five good questions to ask are: number one, do I really need this test? Number two, what are the risks of having this? Number three, are there simpler and safer options? Number four, what will happen if I don't do anything? Number five, what is this going to cost? Finding a good GP can be like winning the lotto You get one and you can follow them all around the city Sometimes a GP is a very valuable part of your health team—they can coordinate appointments and referrals and take care of the everyday medical issues you may face They can write reports and fill out forms for different agencies and follow up on things GP's can also explain what specialists are recommending which can help you make decisions

Where to go for help when you're an inpatient or when you're in the community A medical emergency review—what is it and how do I get one? WA health has a policy called Recognising and Responding to Acute Deterioration, and this is how services should respond if someone starts to get worse quickly While an inpatient if you're concerned that someone that you love, or you are getting rapidly worse, you can call the nurse and tell them your concerns You can then ask to see the nurse unit manager or you can ask to see the doctor, you can ask for a medical emergency review This is sometimes called something different but it is just an urgent medical review by a different medical team

You can ask for your request to be documented in the records Non-urgent inpatient help—so if you're an impatient and you need some helpful support you can always contact: patient liaison or the customer service office, social work, department pastoral care, the Aboriginal Liaison Officer or the Carers WA Hospital Program medical help in the community—some of the places you might go for help would be: your GP or Health Direct For non-medical help in the community you can try Carers WA, one of the advocacy agencies or your local council If you needed to give some feedback or lodge a complaint about a service, you can always use Patient Opinion which is an online website for all WA health services

The health and Disability Services Complaints Office, advocacy agencies such as Health Consumers' Council or People With disabilities WA You can use the hospital complaints process which involves going through the patient liaison at the hospital If you think that you've been discriminated against because of your disability, under the Disability Discrimination Act you can contact the Equal Opportunities Commission If you think that the doctor you've seen is dangerous or has bad practice you can contact the Australian Health Practitioners Regulation Agency If you think that there's some sort of corruption going on you can contact the Crime and Corruption Commission, you can also contact your local member of parliament and they're there to assist you

In this section we're going to talk a little bit about advocacy, self-advocacy, and agency advocacy Self-advocacy means speaking for yourself It can sometimes be difficult to speak up for yourself with health professionals It can seem like they have all the power, all the knowledge, they know all the technical terms and we're just patients It is empowering though

When we learn that we can do that, we get better care and we feel happier But we do need to know our rights and what should be happening before we can speak up with authority Sometimes if we were very unwell or scared, we might need someone to advocate for us Learning self-advocacy skills means that you can help yourself, but you can also help people that you care about Speaking up for yourself doesn't always mean that you need to be able to speak either

It just means being able to communicate you wants and your needs in your way Self-advocacy isn't about knowing everything You'll probably still need to find out information, it's just that you've managed to do that yourself There are some things we can do that mean we have a better chance of getting a good result for ourselves We really need to be clear about what the problem is both to ourselves and to the service

Sometimes there might have been a whole list of things and so it's important to write each thing down It can help to write down a lot and then edit it once you feel a bit calmer and then write it in dot points If it's a complaint and it's about something that has happened write how it you made you feel as well This is really important, it really matters We also need to think a bit about what we want to happen

Either to fix the problem or to avoid a problem happening again This is where we have to do some thinking around what we will accept and what we wont We need to remember that we can't go back and change things, but we can do all we can to make sure that they don't happen again Sometimes it might be that you want the service to look at how they do something and change it Sometimes it might be that you want someone to say that they're sorry

It's important that you don't accept what you feel is unfair If you need to take some time to look at things or talk to someone and get some advice, then tell them that you need time and you'll get back to them It can be a good idea to take notes during any meeting or phone call and then to email them a follow-up saying "This is what we talked about today, and this is what we agreed to" You then have it in writing what you think happened and they can agree or not You can always contact one of the agent advocacy agencies if you need advice

Advocates what are they and how can they help? Advocacy can help you make a complaint They can attend appointments with you and make sure that your voice is heard They can help you access medical records and refer you to appropriate services They can also offer non-medical advice and support Gow can your voice be heard? It's important that consumers voices are heard in the health system

Your local health service will have advisory groups to ask consumers opinions on their operation This can be a good way to get your voice heard and to help raise the voice of other people in your community You can contact your local hospital for information about their Consumer Advisory Committees You can also have a membership of consumer organisations such as a Health Consumers Council WA, People with Disabilities WA, Consumers of mental health WA, the Consumer Health Forum of Australia, Carers WA and Helping Minds There are many consumer organisations and joining keeps you up to date with what's happening and often will allow you the opportunity to talk about your experience in health services

Thank you so much for your time today There is further information on the Health Consumers' Council website If you need advocacy or any further advice, please call Health Consumers' Council Thank you, and goodbye