Introduction
In Ireland, like many other countries, people want a healthcare service that treats them as individual people, meets their needs and is flexible enough to enable timely access and responsive care in the right place. Healthcare services are delivered in many different settings (home, hospital, long term care facilities, General Practitioner services) from many different professionals. In addition, enabling people to optimize health and well-being means that people experience an integrated service which provides joined up care. This focus is called Person centred co-ordinated care.
Here's how Irish patients have defined person-centered, coordinated care
The definition above is based on the 19 statements below. These statements are ordered by theme:
- Care I am confident in
- Care in my journey through healthcare
- Early Engagement
- Education & Training
- Jury Recommendation 1
- My Care Experiences
- Patient & Clinician Evidence
- Right to Appeal
- Strategic Commitment
- Transparency & Communication
Recommendation 1
Recommendation 1
We expect healthcare professionals to be able to access the health information they need to provide quality, evidence-based, real-time care to individual patients.
Download the <a href=”https://www.ipposi.ie/wp-content/uploads/2021/06/THE-15TH-ANNUAL-GENERAL-MEETING-OF-IPPOSI-LTD-Agenda.pdf”>full jury recommendations</a>
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RIGHT TO APPEAL
RIGHT TO APPEAL
Patients want a right to appeal
Patients want to contribute to recommendation-shaping and decision-making. Patients should be invited to formally comment on draft assessment reports and reimbursement decisions prior to publication – thereby completing the involvement circle from process start to finish. Patients should be able to challenge the process and we call for an appeal process to be developed to ensure an oversight framework is in place for final assessment and reimbursement decisions.
EARLY ENGAGEMENT
EARLY ENGAGEMENT
Patients want early and sustained engagement across the process
Patients in Ireland currently have limited patient involvement opportunities during the entire assessment and reimbursement process. Patients believe that there are missed opportunities and we call for the patient voice to be represented across the entire process to ensure that the methodology employed and the values used are truly patient-centric. Patients can help with early scientific advice, assessment scoping, evidence development, early access and much more. Patient perspectives should inform the methodology employed and the values used by assessors and decision-makers.
PATIENT & CLINICIAN EVIDENCE
PATIENT & CLINICIAN EVIDENCE
Patients ask that patient + clinician evidence & input is systematically considered
Patients have an in-depth knowledge of the impact of their condition and their treatment on their daily lives. Patients know the outcomes which are important and which can offer a real improvement in their quality of life. Collecting and incorporating “patient-based evidence” into assessments results in better decision-making. Clinicians also have important information to share, including ‘real-world’ observations about how patients respond to a medicine. We ask that patient and clinician evidence & input complement scientific and economic evidence.
TRANSPARENCY & COMMUNICATION
TRANSPARENCY & COMMUNICATION
Patients demand access to information and regular communication
Patients need to be able to trust the decisions being made on their behalf. Patients denied access to a new medicine want to know that the assessors and decision-makers have arrived at their conclusions as a result of a transparent, accountable and evidence-based process. Patients want to have access to information; they want to know who makes decisions, how, and when. Patients want to be kept informed about developments and to be notified of the various opportunities to provide input and to become actively involved.
EDUCATION & TRAINING
EDUCATION & TRAINING
Patients need education, training and support to facilitate their involvement
Patients are not scientists, economists or clinical experts, but they do have a unique and lived experience to share. Patients need education and training to ensure that their voice is heard and represented. Patients need support to navigate the technical language and terminology, as well as to understand the methodology and measurements used. We ask that national agencies dedicate the resources needed to ensure that patients have the knowledge and the skills they need to interact with medicines assessment and reimbursement process.
STRATEGIC COMMITMENT
STRATEGIC COMMITMENT
Patients call for a strategic commitment to advance their involvement
Patients are not an afterthought, patients are not another stakeholder, patients are not a box ticked. Patient involvement is an integral part of the work of national agencies engaged in the assessment and reimbursement of new medicines. Patients can be advisors, implementors, commentators. Whatever the role, we ask that our contribution is valued and that our added value is publicly recognised. We want the benefits of our involvement to be measured, and we hope that our partnership evolves as new opportunities arise.
My care includes issues that my health influences, such as finances, housing, employment, ability to travel and access to transport.
My care includes issues that my health influences, such as finances, housing, employment, ability to travel and access to transport.
Quotes from participants in the 4 regional focus groups
‘And then it wouldn’t just be coordinated care, it would be integrated care because we need to integrate the health, education and social care departments because a huge amount of, once we get our children’s medical stuff kind of fixed as best we can we’re into school and they’re struggling in school.’
‘I think what [Name] is saying as well is something I would agree with completely, that sometimes we look at the health service in isolation as just the health service but yet, it is housing, it is transport, it is all the departments we don’t, social welfare because you need an income. And it is all the departments as well that we don’t traditionally associate with health.
I have services delivered by the most suitable healthcare staff in the correct setting and when I need them.
I have services delivered by the most suitable healthcare staff in the correct setting and when I need them.
Quotes from participants in the 4 regional focus groups
‘If you were waiting for the Health Board [to give timely services], we were gone. It was a year and a half later an occupational therapist called to see what would we need? I said, ‘He’d be killed by now’, you know, because a person can’t wait a year and a half. I was talking to somebody recently now, her husband has had a stroke and she wants to bring him home and he’s an elderly man and she said, you know they’re going to apply to get a downstairs bedroom and bathroom built on, I said, ‘He’s 80, he’s going to be long dead before that will be built.’
‘The problem is that, and I’m saying from personal experience here, mental health issues. They can heighten late in the evening, late at night. And if a person is prone to panic attacks where is somebody going to take them, only straight to the A&E because there is no GP on call quite often. Now, you can get maybe somebody with the [Name of GP Service], what are they going to do? They’re going to send you to A&E anyway.
Healthcare staff have the skills, knowledge and expertise to plan my care with me.
Healthcare staff have the skills, knowledge and expertise to plan my care with me.
Quotes from participants in the 4 regional focus groups
‘Right, so thankfully I had the wherewithal to know that what he was saying was wrong and I brought my child to [Hospital], who were horrified when I showed them the letter and I still have the letter, so, you know, this is very serious. People don’t know this.’
‘Most people very good with children but many healthcare providers outside of the children’s hospitals do not know about 22q11 deletion syndrome nor do they understand the implications on his health and possible complications he is facing long term.’
As I meet with healthcare staff in different settings, my experience is smooth and connected.
As I meet with healthcare staff in different settings, my experience is smooth and connected.
Quotes from participants in the 4 regional focus groups
‘And there’s not enough coalface workers then, to deal with the people but the big issues that we find weekly, is transitional care and step down facilities. Transitional care from acute services to community services, the transition is not seamless at all, it’s full of obstacles, especially if you have multi-symptomatic care requirements, trying to coordinate several different disciplines, to look after an individual or, it doesn’t really happen unless you live inside the M50, predominately.’
I can have one person who will oversee and follow up on all my care.
I can have one person who will oversee and follow up on all my care.
Quotes from participants in the 4 regional focus groups
‘A nurse shouldn’t have to be liaising between patients and there should be a co-ordinator, I think, someone who’s educated on how to use the system and they take on a certain amount of people and they walk them through the system, now they’re not a healthcare professional themselves but they know how it works. So they educate people in how it works, who you need to go to next.’
‘In the perfect world you would love just when [Name] said there, about the liaison nurse, you’d love to see a liaison nurse, a team of liaison nurses that comes in and introduces themselves and sits with the family and this is what’s going to happen, this is what is going to happen, this person is going to assess you, that person is going to assess you, then we’re going to talk the occupational therapist, they’re going to set up a package that suits you and then I’m still going to maybe stay on with the family, go to their home and when the support officer comes from whichever company, sit down with them and then…’
I know healthcare staff will co-ordinate my care to include my complete health status and my world.
I know healthcare staff will co-ordinate my care to include my complete health status and my world.
Quotes from participants in the 4 regional focus groups
‘So, everything in that from kind of wound care to like making sure you don’t develop arthritis for instance because you have got something else, and prompts to siloed clinicians who just like, should know that you need to see another specialist.
Things like that and then like considering maybe how that works, so how, OK let’s say when I am from, moving to, OK there is a Bus Eireann and I have a car but if I didn’t my mother doesn’t. My mother would not drive to [city] and she accesses the same services. I think it is going on 25 years and continuously and then it is another bus from [Name] Street to [Hospital] and then it is another bus. You know? And it is the whole day, the appointment is the whole day. It is not an hour, it is the day, you’re wrecked, the day after you’re useless.’
‘No, I mean the dysfunction between services is just, I just talked to my mum this morning briefly because you know, I kind of have some preparation done. I am going to, I kind of sprung this on her so she didn’t totally fill me in but she said, ‘Don’t worry, I have plenty for you’ but like that it is go to the hospital and get something done and then get a letter to attend somewhere else. So, somebody of 90 they are depending on a member of the family to come and take a day off work and bring them and it is kind of, she is a very independent lady like, so she doesn’t like to have to kind of draw people in to go with her. We go willingly but it is just that kind of dysfunction. And then I asked her this morning had she anything specific and she said, ‘Well, I got a letter last week’ she said, ‘I actually got two letters to know why I had missed my appointment and to ring to explain why I had missed my appointment’ and she said, ‘I didn’t get the appointment’
I know I can get appropriate care when and where I need it.
I know I can get appropriate care when and where I need it.
Quotes from participants in the 4 regional focus groups
‘Care pathways don’t exist for most conditions. Bar the ones who’ve had the big news, the cancers and the cystic fibrosis, they have something but if you’re dealing with rare and genetic conditions which are not well known, but they’re not really rare because it’s, you know, one in seven have a rare condition and it’s just … and there’s no access to the service then as well. Because respite is only in very limited availability for children.’
‘Being able to access services when we need them rather than having to wait long term or go private.’
Healthcare staff are accountable for care that they give to me.
Healthcare staff are accountable for care that they give to me.
Quotes from participants in the 4 regional focus groups
‘…diagnosed him than about the doctor who left him home, put him into bed and go in the morning, like, there was no follow up about that doctor [who said to bring the boy home from GP service and go to hospital in the morning].’
‘No, like the companies [private home care] are not punished for these people not turning up.’
My care is of a high quality and is delivered safely and efficiently.
My care is of a high quality and is delivered safely and efficiently.
Quotes from participants in the 4 regional focus groups
‘…attended [hospital] and had a cardiac stent inserted. excellent care from all involved in cardiac day care and in follow up’
‘The first thing I really care about is that I’m safe or my kids are safe. It’s the only thing I actually care about, is safe and we’re not at risk. And, you know, if that means testing for sepsis or whatever, just, you know, doing those things to ensure that you’re safe, that’s just all I … that’s my first one.’
Decisions about my care include me as much as I want and involve my carers if I choose.
Decisions about my care include me as much as I want and involve my carers if I choose.
Quotes from participants in the 4 regional focus groups
‘…it was about this passive patient, and I think that the passive patient while it’s great to empower patients, some people will have the choice of either through choice if you want to be passive or because of their condition and I think that we can talk about information flowing and being able to interact with it [care choices] but not everybody will.’
The vulnerable person they usually would have a carer of some kind wouldn’t they so the coach would work then with the carer, you know, who would then support the vulnerable person yeah.’
‘It [patient being involved in the decision] depends on the doctor but no, mostly they simply kind of know best. And maybe a lot of the time they do but maybe they should kind of ask what you think. Now, some people are very good for standing up for themselves and for being able to kind of talk to the GP or the consultant and say ‘Look, this doesn’t work. Can we try this?’ Their the doctor and have much knowledge. But that knowledge could be got from all these volunteer groups or if the person wanted, the carer. So, I mean there should be an input in the system for those people, like.’
I can contact the relevant healthcare staff to ask questions that are important to me and I get timely responses to my questions.
I can contact the relevant healthcare staff to ask questions that are important to me and I get timely responses to my questions.
Quotes from participants in the 4 regional focus groups
‘So, back to the transparency thing and having a direct link with a consultant, I think that is kind of key in an awful lot of situations.’
‘…not well, I find them [healthcare professionals] to not be receptive to listening to me at all they appear to want a quick fix and a very compliant patient who asks no questions.’
I do not have to repeat myself each time I meet new healthcare staff involved in my care.
I do not have to repeat myself each time I meet new healthcare staff involved in my care.
Quotes from participants in the 4 regional focus groups
‘And there was a nurse there and she was, didn’t she turn around and she said, she saw [Name] crying and she said, ‘What’s wrong?’ and said [Name], ‘Sure my first baby had a hole [in the heart]’ and this nurse that was in a state, she didn’t even have the charts or information or stuff there.’
‘Get a proper system where all health care professionals have access to medical notes regarding the patient. Between hospitals, GPS, clinical nurses, private consultants. So less time is wasted explaining EVERYTHING over and over again by the parent or carers.’ [Survey]
If I choose, my information can be shared securely with relevant healthcare staff.
If I choose, my information can be shared securely with relevant healthcare staff.
Quotes from participants in the 4 regional focus groups
‘I think I suppose if there was the development of the electronic health records so basically that you know like there was a link between the hospitals and the GPs and things like that, I think that would be much better.’
In partnership with healthcare staff, I make choices based on what I prefer and my goals.
In partnership with healthcare staff, I make choices based on what I prefer and my goals.
Quotes from participants in the 4 regional focus groups
‘You have to empower a patient to have an involvement in their own care or their care provider, who is their principal carer. They should be empowered to make decisions…’
‘It can be quite intimidating as well when you go in for your outpatient appointments and things like that and sometimes you will say it to them, and they’ll go, ‘Right’ and you know well they’re writing down, they’re not listening to what you’re saying and then they’ll come back, ‘Well we think it’s the best option for you’, and you’ve said what you wanted to say but they really haven’t taken it on board and they’ve just made your decision without you even there or else if you keep on about it, they’ll bring you to the consultant and with their team and you’re like, you know you’ve got a number of people in the room, and you just go, ‘forget it,’ you know there’s no point in trying to make my choice.
I am treated with empathy, respect and dignity in all dealings with healthcare staff.
I am treated with empathy, respect and dignity in all dealings with healthcare staff.
Quotes from participants in the 4 regional focus groups
‘[Treated by healthcare staff] Politely mostly but sometimes some professional display ignorance & talk down to the patient & the patient gets irritable, they are given meds to calm them or sedate them which would not be needed had they been talked to & treated appropriately!! Generally there is a level of respect!!’
‘I know a doctor, a lot of people say he was a horrible doctor, a very, very good doctor but he was very arrogant in his approach, shall we say. He got sick, OK, he got sick abroad and he came back and I remember him telling me, he didn’t realise what it was like to be vulnerable until he got sick, until he got it and his attitude changed. His care and his ability as a doctor was the same but his attitude changed towards patients because he knew they were vulnerable.’
Healthcare staff listen to me so that they understand my world and what is important to me.
Healthcare staff listen to me so that they understand my world and what is important to me.
Quotes from participants in the 4 regional focus groups
‘It’s timing that’s the issue [for appointments]. Give a child an appointment at a time that they can make, we find that a big thing. And I suppose it’s the same for adults. We have kids from [County] and [County] getting appointments for services at 9 o’clock in the morning. And we’ve kids from [County], [County] getting appointments for two o’clock in the afternoon. Same doctor. Give them time to get in and time to get out.’
‘…helping patients to fulfill their goals, so my brother wants to go back to bingo and things like that you know and like he maybe discouraged doing that because he needs oxygen and things like that and you know and as well as getting to know the patient and the communication coming and whatever, what I have really experienced very well is, from physios and everything getting me to be proactive and what do I want to do again, in terms of work or whatever else, so that you know as well as that asking patients not just getting to know the patient but what are your goals you know.’
Consideration of the personal circumstances of people who are using the service. What [another participant] said about asking those two simple questions, ‘Do you mind children? Do you look after elderly people?’ If we even just did that it would be revolutionary.
Staff help me to understand the choices and services available to me now and for my future care.
Staff help me to understand the choices and services available to me now and for my future care.
Quotes from participants in the 4 regional focus groups
Definitely, patient empowerment is hugely important and information and providing information to them early on and because when you’re in those initial stages after diagnosis or something it’s very important that you have all the information that you can…’
‘…whether you’re a carer or you’re dealing with yourself this is when you really have to be empowered as a person and at your best. And very often there’s, you mentioned lack of support, there’s no support there in that situation. So what we, and then the importance of self-care and self-management and so on and you mentioned the challenges of feeling like you’re in a maze.’
I have up to date information on my health condition(s), treatments, and available support services.
I have up to date information on my health condition(s), treatments, and available support services.
Quotes from participants in the 4 regional focus groups
‘That is certainly, along with that it is information from other people that have found out things, because people [in the HSE] don’t tell you.’
‘And I suppose we’re interested to see where that fits within integrated care in the community and self-management in the future.’
Staff communicate with me in a way that I understand.
Staff communicate with me in a way that I understand.
Quotes from participants in the 4 regional focus groups
‘Some of them [healthcare professionals] can talk on a completely, language above a lot of people’s heads so you would be kind of, there is some people that are too intimidated to say, ‘What did that mean?’
‘[The use of] plain simple language, understanding of culture and difference’