About
19 Statements

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.

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Here's how Irish patients have defined person-centered, coordinated care

“Person centred co-ordinated care provides me with access to and continuity in the services I need when and where I need them. It is underpinned by a comprehensive assessment of my life and my world combined with the information and support I need. It demonstrates respect for my preferences, building care around me and those involved in my care”

The definition above is based on the 19 statements below. These statements are ordered by theme:

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 patie... Read More

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 in... Read More

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 cal... Read More

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 ... Read More

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 concl... Read More

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 ... Read More

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... Read More

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 med... Read More

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’, yo... Read More

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,... Read More

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 serv... Read More

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 the... Read More

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 yo... Read More

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 n... Read More

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... Read More

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’ ... Read More

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 t... Read More

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.’ ... Read More

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... Read More

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 be... Read More

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…’ ... Read More

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... Read More

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 [Cou... Read More

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 ... Read More

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.’ ... Read More

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?&#... Read More

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Here's how these statements are being used to improve health services in Ireland

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