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He explained that along with the regular risks of having any procedure, this procedure had the added risks of causing damage to the heart's AV node resulting in the need for a pacemaker forever or causing a stroke. Dr Turner spent a lot of time with us explaining the risks associated with the condition left untreated versus the risks of the procedure, and it was very clear that having the procedure was the right course of action.

We were put on a waiting list and told it would probably take about six months. We left feeling very numb. The next few months weren't fun. Luke was fine - completely oblivious - but we weren't.

Integrating health care in Australia: a qualitative evaluation

We started Luke's school orientation and had to fill in health forms explaining the heart condition. We had to find a compounding chemist who would convert the Sotalol tablets to medicine form. We were booked in for the procedure at the end of November.


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Two weeks out we got a phone call saying it had to be delayed until the beginning of February. I was a complete mess. Not only because I couldn't stand more time with this hanging over my head, but also because I didn't want this to interfere with Luke starting kindy. Thankfully Dr Turner was able to adjust some things around and booked us in for the week before Christmas.

We ended up not telling Luke about the operation until the day beforehand so he didn't have to think about it. He was upset until we told him there would be Lego when he woke up and that seemed to fix up his worries. We had to get to Westmead at 7am. We were admitted into the Children's Hospital where we went through pre-op questionnaires and Luke was given a hefty dose of paracetamol.

We were then transferred across to the EPS lab in the adults' hospital.

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We met the anaesthetist and Dr Turner. Luke was happy until a nurse told him he would have to breathe in a nasty gas that smelt like stinky socks, which caused some tears. I went into the theatre with him while they put him under the anaesthetist told him to blow up a balloon at the end of a tube which smells like bananas which was a MUCH nicer way of explaining it!

We then had to take some forms to be officially admitted into the adults' hospital. And then we waited. We got a phone call after about 4 hours and returned to the EPS lab where Dr Turner told us that Luke was fine and the operation was hopefully successful.

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They had to use a cryoablation catheter using freezing energy rather than radiofrequency ablation RFA which uses heat energy, as the pathway was in an area where RFA would have been too risky. Thankfully the pathway was not on the side of the heart where a clot arising from this or any subsequent procedure could cause a stroke, and they also found that the pathway was very low risk in terms of causing sudden death, even in the event that the cryoablaltion was not successful.

This was best news we could have hoped for! It took ages before we could see Luke. He took ages to come around in recovery, and as it was the adult area they wouldn't let us be there for him when he woke, which distressed me although I understand the reasoning see Note 5. It was much nicer once he was transferred back to the Children's Hospital. He thought the bed ride was the best ride ever - better than a ferris wheel or a plane - much to the amusement of the porter.

He was happy to lie down and watch TV for a few hours as he wasn't allowed to walk around. When he got up the next day he was fine - no pain in the groin or the heart. We had the best Christmas ever! He is tackling kindy like a pro! He has since passed the 3 month follow up ECG, and if he gets through the 12 month test he will be called "cured". We are so very thankful to Dr Turner and the rest of the team for taking such good care of our precious son.

Although this was a horrible time for our family, seeing some of the other patients in Edgar Stephen ward really put our experience into perspective, and we have been incredibly lucky. If someone could have given you one piece of advice when you first found out about the diagnosis, what would it have been? I'm not sure that any advice helps in these situations!

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I only know that people telling me not to worry was useless! I would have liked MUCH more information at the time of diagnosis between initial hospital admission and initial appointment with Dr Turner. What has been the most challenging part of your journey? The most challenging times were the times in limbo - when we knew he had WPW but didn't know the treatment options, and when we knew the treatment options and didn't have a date.

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It was very hard not to let my imagination run away with me and dwell on worst case scenarios in these instances. What was one thing that helped throughout the journey so far? We really appreciated Dr Turner's approach and manner. He was very clear, direct and thorough, and explaining options through a risk-based lens was good for us. Having a sick child really brings a renewed appreciation of how precious every moment with your family is. After having such a high amount of stress for the past few months I have found I am now much less of a worrying parent than I was prior to his diagnosis.

It really puts other day to day problems and worries into perspective. We also decided to sponsor a child in Nepal with the same birthday as Luke's to try and repay a little of our good fortune following the procedure. It works by blocking the normal impulse of electricity between the upper collection chambers the atria and the lower pumping chambers the ventricles of the heart.

By causing this temporary "block", adenosine can interrupt a "short circuit loop" that can be the cause of SVT, restoring normal "sinus rhythm" again. The medicine is injected into a vein, and it's effect only lasts a few seconds, before the body quickly breaks it down. It can make children feel a bit sick, but this effect only lasts for a few seconds. Back to story. These are called "vagal manoeuvres".

The framework comprehensively captured the data and did not need further revision.

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ST then conducted the remainder of the interviews and coded these. Due to the large number of transcripts, we checked coding in an iterative process through ongoing discussion of the analysis in a series of research team meetings. Upon completion of coding, the primary research team met to review the completed coding matrix and discuss the positioning of individual categories and codes and ensure the framework remained accurate and inclusive of the data.

Background

In order to further ensure the veracity of the data, we reviewed our analysis with the Evaluation Advisory Committee of the WSICP at the end of each of the two interview rounds. We interviewed 12 patients enrolled in WSICP, with 8 patients participating in both the first and second round of interviews, and 11 carers.

Twenty-nine Western Sydney Local Health District employed healthcare providers participated in the evaluation, including medical specialists, registrars, nurses, allied healthcare providers and WSICP care facilitators. Additionally, 10 members of the Evaluation Advisory Committee comprising a mix of managers and clinicians with advisory roles were interviewed in one or both rounds.


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  • Participants were spread almost equally across the three chronic disease areas and were from both Westmead and Blacktown hospital catchments. General practice participants were recruited from 14 different practices across western Sydney. We examined how each of the 10 WSICP strategies listed above Table 1 were implemented and utilised, how participants experienced and valued these, the facilitators and barriers in realising the desired program outcomes, and suggestions for the future as identified by participants.

    We noted that positive experience, satisfaction and perceived value often overlapped. Similarly, negative experience was often linked with suggestions for system improvement. Care facilitators were said to help patients by providing information both about their health conditions, following their care plans and navigating health services, especially through support to attend appointments. They were a primary contact for patients and important patient advocates as well as familiar faces in the hospital.

    Care facilitators often recruited patients and GPs into the program and were considered a crucial link between hospitals and community based care, following up transitioning patients and providing information about patient progress to healthcare providers in both sectors. The care facilitator role was reported to be critical in improving integrated care, and the knowledge and skills of those in these roles were highly regarded by our interviewees. However, care facilitators reported a heavy workload and limited information and support for their roles initially. This appeared to have improved by the second round of interviews.

    Information technology IT systems were reported by the healthcare providers we interviewed to be very frustrating. They noted poor functionality of shared health records, and minimal IT enhanced communication between hospitals and community sectors. In the absence of IT solutions, recourse to traditional communications such as letters, faxes and phone calls was described and sometimes preferred and email was used in place of shared records. Some interviewees suggested that IT services had been under-resourced, particularly the shared electronic health record Linked-EHR.

    In the hospital setting, shared care plans were often inaccessible and interviewees expressed frustration with the hospital IT system, the need to duplicate data entry, and difficulties linking with multiple different GP systems. Common recommendations from interviewees included training in use of IT and establishing an interactive common shared health record with immediate access to shared information and alerts when providers entered updates. They recognised the future potential for the IT initiatives being pioneered through WSICP including in data collection for ongoing evaluation of the program.