"Great care, but miscommunications"

In December 2024 my son's joints started to swell. They became very sore and hot to touch and he couldn't weight bare or move his arms, wrists, fingers etc.

Our GP told me it was just part of his ear infection that he was diagnosed with previously and that his antibiotics would help. Just to give it more time.

My gut was screaming at me when I left the Dr. I put my son to bed that night and when i did I noticed that his feet had purple/ red splotches. 

I tried to blanche the rash with a glass but it didn't shift. My heart sank.

I took my son into A&E at the Victoria Hospital. He was triaged within 30 mins of our arrival and he was taken straight through to a bed.

When we saw a Dr, she had a feeling she knew what it was. After urine tests and blood tests he was diagnosed with HSP. A condition that occurs when the body's immune system malfunctions.

After a few hours in the children's ward (the staff on night shift on Christmas Eve were incredible) and great advice/support given, we were discharged home in time for Santa coming. We had arranged an appointment at the children's ward for New Years Day.

My son was walking again by Boxing Day night and the rash and swelling/ pain had reduced significantly.

He was checked up on New Years Day and he was found to be recovering well. During that appointment the Dr asked us to arrange check up care for him in the community and considered him discharged from the ward.

Once healthcare opened back up full time after the new year, I arranged for my son to have his tests done at our Dr's Surgery. Unfortunately, the practice nurse was unable to do paediatric blood pressures so I had to coordinate appointment times with the community paediatric nurses. 

The receptionist at the medical practice was phenomenal and did all she could to help organise all aspects of my sons after care. The community nursing team were also extremely kind and helpful. And the practice nurse was lovely too.

He was found to be recovering well in this instance and we thought we had cracked it.

Until I received a call late in the evening that night from a staff member in the children's unit to say they'd been expecting my son at their clinic for a check up that day! And that all his check ups from now on should be happening within the hospital. 

If I could get my son to hospital on new years day for a check up then I could certainly get him there on a random Wednesday in January, I thought to myself. If only they had told me! But...

No one told me this. I didn't receive a letter, a phone call or anything. Plus the Dr on New Years Day discharged him and asked me to arrange community check ups. Which I did to some great effort.

The next day I had to call all the community teams to cancel their care of my son. Thankfully they were as lovely and supportive as ever.

I received a new appointment for him to attend the children's ward. It was an open appointment.

When we arrived they had no idea who we were! 

As you can imagine I was incredibly frustrated!

A Nurse Practitioner (Jayne) came to us and apologised profusely. She explained what she believed had happened and assured me that my son would get the care he needed. 

When he was checked over he was found to be having a tiny HSP flare up. He had more tests done and was found to be behaving well enough. But the nurse practitioner has communicated with me and my son's named Practitioner within the unit and it's been decided that he should be checked sooner rather than later to be on the safe side.

All I can say is, thank goodness for Jayne! 

After far too much too-ing and fro-ing during a scary time, Jayne was exactly the person we needed. Her care and understanding has been invaluable. I've felt more secure and heard with regards to my son's care in the last 2 days than I have since we first left the unit in December. And that discludes the community teams who did all they can to help us as they were also incredible.

The source of discomfort was the uncertainty and miscommunication with some staff in the children's unit. 

Unfortunately I do not remember the name of the Dr we saw on New Years Day or the staff member who called me to say the unit had expected my son in clinic that day. 

I ask that communication between medical staff on the unit is prioritised in training and leadership. 

It may prevent others feeling the same stress we have.