Patient Journey Information

I was recently asked to write a patient journey informational letter which was to be submitted to the health department for more funding and as an insight into what areas need more work. This is our story

First sign of symptoms: July/August 2006

Our Story

My now 14 year old daughter first started to show signs of a problem with her joints when she was 6. She had a sore hip which often led her to cry for many hours in pain. I had taken her to the Dr’s but no one at this stage at picked up that it could be arthritis. After this initial episode she seemed ok, development was normal and she was growing into a very active young lady.

6 months after my daughter turned 11 she began having problems with her fingers, small nodules were coming up on her fingers and to move them was painful. This was followed by a sore right wrist. At first I thought she may have hit her wrist or twisted it, when her wrist did not improve I took her to the Dr thinking she may have sprained it or hit it as kids do. When my local Dr looked at her wrist she suspected that it could be a form rheumatoid arthritis, and without me having any knowledge of this I did not think it was as serious as it ended out being. Xrays and blood tests were ordered. Our Dr also asked us to see a local adult rheumatologist, which comes into the clinic. An appointment was made and we waited a few weeks to see our local adult rheumatologist.

At the time of the appointment she did inform us that she believes that my daughter has a form of Juvenile arthritis, so she ordered further tests, which included scans and blood tests. Basing her diagnoses on both previous blood results & a full examination my daughter was started on medication. She was placed onto Prednisone and Salazopyrin EN. We were told to go home and research JIA and was offered 2 links as her computer was not allowing anything to be printed. The websites were PRINTO to get information about JIA and also Australian Rheumatology Association for the medication information. As a concerned mother I wanted to get as much information as I could and was saddened to see that there were not as much information for JIA as there was for adult arthritis.

I was however able to find a few support groups for parents with children with JIA and it was from these few support groups I began to understand the disease alot better. However the one article I did read that allowed me to try and understand what my daughter was going through was one called “Meet Arthur” . I believe this should be handed out to all the parents who have a child who has been diagnosed with any form of juvenile arthritis.

When my daughter was first diagnosed it was a very scray time not only for my daughter but also for us, her family, her mum, her dad, her siblings and cousins & friends. They found it hard to understand why it is that she cannot do all the things that she wanted to do. Why cant she play the same games with us etc.

I was sick of the blame game, being told continuously that it was my fault she had JIA, I must have done something wrong when she was a baby, how I should have noticed the signs sooner.. There was just too much blame being placed down on my shoulders.

I went looking online for ways to be able to answer their questions and to try to ease their confusion. I found that reading “Meet Arthur” allowed family members and friends to atleast get some sort of understanding of what it is my daughter is going through.

After our first few visits with the adult rheumatologist she suggested that we had better make an appointment to see the specialists at Westmead Childrens Hospital as she was not a pediatric rheumatologist and she would be more comfortable with my daughter being seen by a pediatric Specialist. We made an appointment, which unfortunatly was not for another 6months.

The hardest part of the waiting was watching my daughters condition deteriorate, she had gone from having one sore wrist to loosing range and strength in her wrist and to having more joints involved. We had gone from one wrist to almost all joint involvement.

During this waiting time she continued to see the adult Rheumatologist {that is when she turned up for her appointments}, she had an allergic reaction to the salazopyrin EN { which the specialist wanted to try again, which I refused} and she was then put onto methotrexate (which I did not find out until 2009 that Methotrexate was in fact a low dose chemotherapy.) I wish I had been better informed by the Dr and not just sent to websites or forced to research things on my own, or wait for close to 2 years later to be informed by a nurse at a hospital that it was in fact low dose chemo.

Westmead childrens Hospital

The day had finally arrived where we were able to get in to see Dr Chaitow at Westmead. We had our initial appointments, where all the blood results, xrays etc which had already been done were presented, this method I believe saved us alot of time and less stress for my daughter not having to start all the tests again. I would suggest that anyone who is in the process of waiting, be well prepared when they attend the hospital.

As soon as we were seen and the diagnoses was confirmed the wheels started turning. Occupational therapy was organised, schools were contacted and we actually had a plan to where and what we were going to do. This was a great weight off our shoulders as we just wanted our daughter to be out of pain, to be able to do the things that she wanted to do, to begin living her life again.

I must say, I have been very impressed with the treatment that my daughter has recieved at Westmead childrens hospital. My daughter has been treated by the rhuematology staff at Westmead for atleast the last 2 years and during this time she has been able to feel comfortable with the Drs. She has had a joint injections in both wrists and the process of this was very well explained. She has taken part in studies to help children in the future and to be able to compare the differences between children with JIA and children without JIA.

Suggestions for the Childrens Hospital

However the waiting time is something that does need to be addressed, not only when you initially want to see a specialist but also during the clinic times. It is hard for a child with arthritis to sit for long periods of time, especially when they are in a flare up. There is limited seating and the waiting room fills up very quickly when there are so many clinics ran on the same day.

One factor that is not usually discussed is the emotional impact that JIA can have on a child. To be able to go from being actively involved in sport to not being able to even use a tap, open your own drink bottle or even dress yourself is devastating for a young teen. To be forced to explain to your peers at school what is going on, being taunted and teased. One incident I will relate is my daughters school had offered for her to use a laptop as she was unable to write at this stage. Her fellow peers kept saying to my daughter” Your so lucky”, it was not until a while later that my daughter actually confided in me and said to me ” I dont know why they say I am lucky, I have to live in pain, all I want is to be normal”. My daughter feel into depression and I would often find her alone crying in her room. As a parent this is hard especially when you dont know where or who to turn to. Parents need to be made aware that depression is one side of JIA that they need to look out for, and where and who they can turn to if they find themselves in need.

School

I have briefly mentioned schooling but I would like to the chance to expand on this topic. School is another factor that is greatly impacted on a child with JIA. Not only missing days but sometimes weeks from school as the pain is just so severe they cannot attend. Catching up on missed school work, teachers not understanding the impact JIA has on a child. As many times the child does not look unwell. She may come to school looking fine but have sore joints, she may be fine one minute and in pain the next.

Writing can be a problem if the child is affected in the hands or wrists, and many times the child is “sick of telling the teachers” they are unable to do things. Another incident which my daughter has just reminded me of was a time when were joints were really bad and she was unable to play sport. She informed the substitute teacher that she was unable to play as she had arthritis and her joints were very sore, so he made her sit out and write lines, even though her wrist and joints in her right hand were badly inflammed. When she explained that she couldnt write either, he said “well where is the letter from your parents” This is unfair considering the school is aware of her condition and I dont believe she should be made to feel as though she had done something wrong simply because of a medical condition.

Another issue at school is the lack of knowledge that is out there for teachers and peers. I did have to provide with school with print outs of information about JIA. They were not able to comprehend how it affects her daily life.

I needed to make special requests for extra time for when she needs to change her clothes for sport, for extra time to move between classes, but in doing this it also isolated my daughter from the rest of her peers, as they seen it as she was getting extra privileges.

Many teachers did not understand and at time made life for my daughter very hard. Comments were thrown at her for using a laptop such as ” How am I supposed to mark your laptop” and there were certain things that just could not be done on the laptop which meant either my daughter did them as required and suffered in silence or missed out which meant she lost marks. Catching up on missed work was a hard for her as well.

My daughter found it hard to explain to teachers what was wrong with her.

Suggestions for schools

Once a school is aware there is a child that has JIA an education day should be held with a representitive from the arthritis association so the teachers can be made aware of the impact it can have on a child.
There should be some sort of card that a child carries with them that can be shown to the teachers. It would save the child actually having to stand there in front of their peers and explain they have a medical condition.
The education that the teachers receive should be passed onto the students, without isolating the child involved so that they too have a better understanding of children with disabilities. Children can be cruel, and the last thing a child with JIA or any disablilty needs is to be isolated and have their peers snickering, thinking they are “lucky” and basically not understanding.

Positive elements

* Follow ups with bloods
* Options are given before anything is done
* Friendly staff, including the Doctors & occupational therapy staff.
* Occupational therapy staff were amazing, offering support, contacting the school and helping me speak to the school and organise things to make life easier for my daughter at school

General Suggestions

* Greater education for parents and carers.
* Resources need to be made available for parents and carers
* General practioners, general hospitals and emergency staff need to be educated on what to do when a child presents with arthritic symptoms.
( My daughter was just released from hospital after suffering a severe flare, which left her unable to stand up & walk. The hospital Dr’s and nurses were “shocked” to see that a child was able to get arthritis. They did not know how to treat her, they did not have any pediatric Dr’s who knew anything about rheumatology. They had suggested transferring her to Westmead for treatment, but the Dr’s at Westmead were unavailable at the time. They did not know what to look for, they did not know what to do or how to treat her so they contacted her specialists at Westmead. They did not know how to recognise an arthritis flare in a child)

* Emergency services need to be allowed to take a child to the hospital of the parents choice, where the childrens specialists are located.
* Again a card needs to be produced that can be presented to medical staff of the condition and medication the child is on. This card would stop the questions ” are you sure she has arthritis”
* Greater financial assistance for parents to be able to buy aids/laptop to help their children around the home.
* Better websites, that are easy to find for parents looking for information.
* Information that is easier to understand for parents/carers/family that do not understand medical terminology.
* Information must be made available in many different languages
* Information must be made available for ALL schools.