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Where are you on your patient pathway?

The "Patient Pathway" describes the patient experience of treatment, care, and support. It is the route that a patient starts from their first contact with a health professional. It includes a GP referral and continues through treatment. It also covers the period from entry into a hospital or a treatment centre, until the patient leaves. It includes the period after treatment, including followup and surveillance.
It is also one of the main tools used to manage the quality in healthcare. A clear and concise patient pathway standardises care, treatment, and support processes. A well developed patient pathway reduces variability in clinical practice. Patient pathways promote organised and efficient care based on evidence based practice. Patients report improved outcomes.
In New Zealand, the Faster Cancer Treatment programme promotes patient pathways. The Ministry of Health [1.] explains what this means for cancer patients. The Ministry's goal covers all clinical assessments, diagnostic tests and treatment. All three of these activities should be timely, responsive and seamless.
As you know, cancer patients can deal with up to 28 doctors and even more nurses. There are many other health professionals involved during treatment. For some folk, there is more than one district health board. This can be stressful and confusing.
The Ministry requires every district health board has at least one dedicated nurse. In busy district health boards there will be one nurse for a tumour stream. This nurse helps to coordinate care for patients. The nurse provides support throughout the course of the patient cancer journey. These nurses, called Cancer Care Coordinators, are an essential part of patient pathways.
You should have the contact details of your Cancer Care Coordinator. If not, contact your District Health Board for details. We have tried to list as many of these contacts as possible in our Groups, on our website. Please let us know if we have missed anyone.
Sometimes the patient pathway is less than smooth. For a whole variety of reasons, the journey is not timeless, responsive and seamless.
A key part of paving the patient pathway is good communication. In simple terms, communication should be clear, concise and kind. Currently the Northern Regional Alliance is developing a new tool for clinicians. This tool will help raise awareness of the importance of good interpersonal communication. This is an integral part of the patient pathway.
I am delighted to have worked with the Cancer Consumer Reference group to develop this tool. As soon as the final version is available I will share with you.
E-mail me when people leave their comments –

Authored by Diana Ayling

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  • Having read the document on the M of H website it's clearly not working well, is it ?  But I whloeheartedly agree that the main problem is communication - or lack of.

    It's true that the key is "communication of information" as we have found that (after reading the Wanganui hospital PR stuff on their website) such knowledge is guarded jealously by the staff at Wanganui hospital but is freely available at Hutt hospital - it's just not communicated as it says it should be on the "mission statement" type of report on the Wanganui hospital website.

    Wanganui hospital are very happy to tell you about how well they are doing, but it's not what I am hearing from "Joe Public" as almost everyone I have told our story to has a similar one to tell about a family menber, friend or acquaintance.

    You won't find anything on the website entering "mistakes, fatalities or complaints" into the search box as the hospital "spin doctor" calls them "serious and sentinel events" - honestly.  I'm told are paid good money to make up this garbage - why not call a spade a spade ?  I stumbled across it accidentally - no pun intended.

  • Our journey

    Our experience was that our “specialist” did not know what was wrong (liar liar pants on fire !) & sent us to the dental Unit for a “brain storming session” (for Dental Unit read Head & Neck Clinic) & we now know that his referral letter stated that Keith had cancer & would need all or a significant part of his tongue removed !!!.

    We were “interviewed”, sent for x-rays told the news then ferried out to the waiting room with all the other unfortunates - not one person approached us to tell us what was to happen next.  We went home in a silent daze.  Later we discovered that we were to be seen by a barrage of “specialists” but not one person thought in necessary to tell us this.

    This is probably how it should have been.

    Signs, pamphlets, posters, etc at ALL GP’s, surgeries, dentists, hospitals, waiting rooms, etc – there can never be enough information.  What to look for, warning signs, photographs, ANYTHING !

    Before (at the GP)

    So for the first segment of the journey it should begin at the GP’s, not the hospital.  If the GP who refers the patient could give the patient written information on what to expect if they do get bad news then it’s a case of “forewarned is forearmed”, which we believe is crucial.

    During (the visit to the Head & Neck Clinic)

    I am told that the following is already available in some hospitals, someone called a Cancer Nurse Coordinator (CNC) but it seems there is no definitive description of the “duties”.

    A liaison person or group of people whose job it would be to “smooth the way” so that if you are told that cancer is the diagnosis then all patients (& significant others) should be allowed “space” to absorb that information with someone present (who would stay with the patient for the remainder of their visit to the Head & Neck clinic for that day) can answer questions or at least offer some sort of comfort.  If any further medical staff need to see the patient then that should be communicated to the patient clearly – as, if a patient is not told that they need to see more medical staff they tend to just leave in a state of shock.

    After (at the GP, hospital visits for oncology, etc)

    Now this is where the liaison person/CNC is needed as too many people are being forgotten about.  I know that at Wanganui we were told that Keith had been discharged firstly by Liston -  then later we were told it was a computer glitch -0 then after that they said that they had different software within the hospital that “could not speak to each other” – excuses, excuses, excuses.

    • We're doing a patient pathway plan up here with the med people. Your comments are very helpful. 

      • Yes, the above "wee story" is what I sent to Diana, thought others might find it of interest.  It's a mystery to me why all of this has happened as I am constantly told that "this should have happened when that happened" as if it's already sorted & "the plan" is already inplace & working well.  It's just plain not good enough to find out after the fact.  But I'm sure that all the various degrees of help (depending on where you live) has become aparent to one & all.  It's all very well people saying "well now you know", but it's no good telling the patients that their lives would be easier, longer or less painful if "this or that had happened at the right time", is it ?

  • Thanks Diana. 

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