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Following blood test results and a visit to the Paediatric department my son was referred to the
Rheumatology unit where we saw a consultant who diagnosed Juvenile idiopathic arthritis (JIA)
within seconds of him entering the room. This he was able to do just by looking at the way my
son’s jaw had developed.
What a relief, we had identified the problem.

He was put on steroids straightaway, a leaflet was given on the disease and appointments made
for future checks. We were now able to research this condition on the Internet and contact other parents/sufferers and help groups. However the condition was not stabilizing and my son was getting lethargic, using a walking stick, could hardly walk and still suffering pain.
After another blood test, I received a phone call from another Rheumatology Consultant who advised us all to go into see him straightaway. We, along with Grandma waited with the consultant’s colleague.  Parents first, then Grandma and finally my son were told he had Leukaemia. The Consultant was amazing with my son and told him honestly and in such a way he could understand. Straight into isolation, taken off steroids and left alone. It was a weekend and we could not be taken to the QMC until Monday; more independent research on the Internet.

We were transferred to a ward at the regional hospital and met the specialist who ran through the chemotherapy routine and explained the condition

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Pain assessment and analgesia at home

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The different roles of primary and secondary health care providers.

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Does it have any particular impact on you knowing that this is a real story as opposed to a fictional case?

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What communication, if any, could there have been between the different agencies/services accessed by this family?

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What might service users and carers assume?

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What might health care professionals assume?

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Why might it be difficult to obtain blood samples?

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How does the diagnosis of a virus make people feel?

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What impact could severe pain be having on the child and family?

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In November 2008, my son then 9, awoke in the middle of the night with an acute and severe
pain at the base of his spine, this is a summary of our journey through a variety of departments
within the NHS.

Episode one:
• Contacted NHS direct who advised painkillers and hot water bottle.
• No respite so a trip to Emergency doctor at 4am.
• Emergency doctor advised us to go to A & E, blood tests taken, pain easing so went back home.
• Trip to GP Monday morning who advised probably a virus.

Episode two:
Exactly the same scenario.
• NHS direct.
• A&E, another blood test (taking five attempts)
• Trip to GP (the same one, as he knew our history) who explained that the other blood tests had not shown any abnormalities, probably a virus and told “these things take time”.

Continued Episodes:
Three trips to the family GP over the next few weeks with my son still feeling extremely unwell,
further blood tests.

Finally:
A call from the GP to ask us to come in to the surgery. The blood tests were showing something but further investigations were needed. We were referred to the Children’s hospital.

Total amount of visits:
NHS Direct…..2
Emergency Doctor ………..1
A&E……………2
GP…………………6
Children’s Hospital…………1