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A Mum Knows Best

A Mum Knows Best

A few of you already know about this, but I am now sharing our experience of the care we received and the treatment from our local hospital.

An Overview

As you will know C has a Chronic Illness, which I have written about many times before.  Due to her Consultant at our local hospital, forever cancelling appointments or not being available to speak to. I eventually spoke to her on the phone to be told she does not understand the illness and she can no longer help her and go to our GP. Luckily one of her old Consultants who now has a private clinic, and we are now under him.

This journey began last November, C started to get stomach pains.  I thought it was her appendix as it was in that area.  But the pain was moving the right hand side.  She was getting worse so I took her to see our GP. C was examined and blood tests were arranged, and an urgent referral from an ultra sound. After a couple of weeks of waiting I was chasing up the ultrasound and it was not classed as urgent and they had no idea how long it would take.  So it was put through again as urgent.  We had the appointment in January.

The Ultra Sound

The day came for the ultra sound. I explained to C what it would be like and what they were doing.  I was able to see everything that was going on, not that I could really understand if things were good or bad.  He explained to me that it looked ok, but could see she was in pain and wanted us to go straight through to A&E for further investigation.

So off we went and had the joys of a 5 hour wait to be seen.  The Dr looked through all her notes, asked lots of questions and then told me to speak to our GP to arrange an MRI scan to be done.

The next morning I rang our GP surgery and was told they are unable to arrange MRI scans on the abdomen and they were referring her to a consultant for this to be done.

I then received a letter from her old Consultant who told me she could no longer treat C as she did not understand the illness, referring back to our GP.  All the time C was getting worse.  I then received a letter to see a new Consultant for the middle of January.

She was getting worse

dr

Photo by Online Marketing on Unsplash

In January I emailed C’s ME Consultant explaining how ill she was.  He agreed he needed to see her, and had a cancellation the next day.  He examined her and thought an MRI would be the way to go.  I booked a private MRI for the following week.

He emailed me with the results of the MRI scan and diagnosis the following Monday, saying if the pain is too bad take her straight to A&E.

Visit Number 1

We headed to A&E, with a print of the mri and email.  It was busy but as she is 16 we were sent through to the children’s Dept.  There was only 2 people ahead of us waiting so thought it would not be too long to wait.  The Triage Nurse called us in, I was worried sick about my Daughter and to be attacked because of the medication she is on, was something I was not expecting.  I explained it was Consultant prescribed due to her ME and Fibromyalgia, but it felt as though she was accusing me.  She said we would be called soon and to wait outside.

People came got seen and went while we sat there,  After about 4 hours I went to ask and was told they were busy and to wait.  Another 2 hours and I went to ask again.  This time the same nurse stood and lied to my face and basically called me a liar.  I went a bit mental at this time and argued back.  I checked with C and she agreed nothing had been said what she was accusing me of lying about.

Finally after 7 hours we saw a Dr, he looked at the email diagnosis and mri, sat there and said he does not understand what it means.  Then told us it was a virus and go home and take paracetamol and it will get better.  I explained paracetamol does not help and she is getting worse, but that was it.

Visit Number 2

On the Thursday evening, C was not well and her temperature was starting to rise, I kept a check on it and ended up sitting in with her most of the night.  It spiked in the morning and I rang 111.  After explaining about Monday and the history, I was advised to get a letter from our GP as it would mean she would not have to sit and wait like she would if we took her ourselves or via ambulance, and that she was not well enough for that.  I arranged a letter and went to collect it.  We decided to try a different hospital, but they told us to go to the original one as a team of Surgeons were waiting to see her.

We arrived and checked in, and was seen straight away by Triage. I gave her the GP letter and she went to look.  Apparently no one was waiting to see us and we had to wait.  After 2 hours I went to check how long we would be waiting. I was told they were busy and dealing with really sick children and we would have to wait.  At this point I was out of my mind with worry and just said so my child is not ill and walked off.  It was then I got on Twitter and with the help of friends my tweet was retweeted.

Eventually, after 5 hours waiting a Manager appeared apologising for the wait and a ton of excuses.  I asked to speak to her and she asked my child’s name. When surprisingly she was about to be called to be seen. So I never got to raise my complaint.

drip

Photo by Marcelo Leal on Unsplash

She was put on a drip straight away, and tests done. She was then transferred to the assessment ward where she was admitted to hospital.

On The Ward

I can not fault the staff and care C received on the ward. She was put on a drip and had strong antibiotics to try to bring down the infection.  She has had so many tests.  It was such a relief that she was finally getting the care she needed.  At the time we knew she was ill but not how ill she was.

I have complained about A&E, I know they are a busy department but each time we went there was 2 people ahead of us.  The sick children that needed priority, were running around and being seen and sent home.  I am grateful to the care she finally received and have thanked the department.  As a Mum of a sick child that you can see being left (I do have photos of how ill and how much pain she was in). With the staff just standing around laughing and chatting I will not let this drop.  This could have turned out to be very serious. If my complaint can stop another parent and child going through the same thing I have done something right.

A Mum Knows Best

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Comments (10)

  • Kara Guppy 1 month ago Reply

    It is so frustrating when you know something is wrong but other just cannot see it. Well done on pushing her through and hope you get some answers

    admin 1 month ago Reply

    Thank you, it shouldn’t have to be that way especially when other health professionals are telling you to go there, and then that triage nurse and her attitude, she is lucky my Mum was there to calm me down I was right at my limit with her

  • Kim Carberry 1 month ago Reply

    Sending love and hugs. Poor you and C. It sounds awful the way you’ve both been treated and I can’t believe the way you’ve been messed around and made to wait. I hope you get somewhere x

    admin 1 month ago Reply

    Thank you, honestly I have never experienced anything like it I won’t share the pictures I took of her but you would not have left a child like that. Luckily although still in pain she is home and we have an appointment next week.

  • Laura 1 month ago Reply

    I have Fibromyalgia along with other chronic illness and can totally empathise with how hard it is to get people to listen. I can’t even imagine how much harder that it is when your watching your child suffer. I am so sorry that you and C had to go through this, hope she is doing better now?

    admin 1 month ago Reply

    It is shocking just how much lack of understanding there is around chronic illness. We thought the new medication was helping but yesterday and last night it has been getting worse again, and another sleepless night was had x

  • Rhian Westbury 1 month ago Reply

    I can’t believe how many consultants just said they didn’t understand what was wrong and wouldn’t treat her any longer.Well done on keep pushing though as you need some answers x

    admin 1 month ago Reply

    Honestly, you get to expect it rather than not expect it. The sad thing is she is going back downhill and just rang the day ward and we will need to go back through A&E and sit there for hours to be sent home.

  • Liam Wilkinson 1 month ago Reply

    it’s horrible that you had a really bad experience, and it can get really frustrating as apparent when you see people not doing anything. Children’s health is such a vital thing for us all.

    admin 1 month ago Reply

    It is the worst feeling ever, I have had problems again today, hopefully things will change when we see her consultant next wednesday x

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