Kindred: Making a difference for Jude and his family

Jude is a lively, happy three year old.  He has the condition Brittle Asthma, which means he suffers severe, life-threatening attacks.  Although he usually recovers quite quickly, his condition often deteriorates again very suddenly.  Jude has had numerous, emergency hospital admissions since birth.  His asthma is so extreme that the Consultant’s advice to Jude’s Mum, Traci, is that she must always call an ambulance at the first sign of him coughing, and that she must alert the paramedics that he will require immediate admission to the Intensive Care Unit.

Traci is a single parent, with an older daughter as well as Jude.  Traci used to work as a Classroom Assistant, a job that she loved and which provided for the family’s needs.  However, she has now had to give up work because of the number of Jude’s regular hospital appointments, plus the frequency and trauma of his asthma attacks.

  • Traci and Jude were first referred to Kindred by a specialist Asthma Nurse at the Royal Hospital for Sick Children, Edinburgh. Jude was being discharged after recovering from a severe attack – and Traci was advised that he should not travel by public transport, to reduce exposure to respiratory tract infections.  However, Traci simply did not have the money to pay for a taxi all the way to their home, some distance from Edinburgh.

 

We paid for a taxi from Kindred resources, as a one-off, and then set about raising funds for the family on an ongoing basis.  Fares can accrue very quickly, and Kindred secured £400 to cover a two week period.

 

  • The Kindred worker started building a supportive relationship with Traci and helped her navigate the complex process of applying for disability benefits.

 

Jude was subsequently assessed as needing High Rate Disability Living Allowance.  Traci also received Carer’s Allowance, which went some way to replace her lost job income.  Together, these payments are worth almost £600 a month to the family.

 

  • Jude’s sister has been traumatised by seeing her baby brother suffer regular, life-threatening attacks, and by the terrible stress their mother is under.  There is also the unavoidable consequence that Jude needs almost all of their mother’s time and focus, leaving his sister feeling anxious and isolated.

 

Kindred arranged for Jude’s sister to attend a play camp specially organised for siblings of very ill children.  The camp provided her with lots of attention and fun activities, and helped her to relax and build her confidence.

By finding funds for travel costs, and then by supporting Traci to apply for disability benefits, Kindred helped to reduce a key source of stress.  This freed Traci to have more time and emotional energy to devote to her children.

However, like many parents, Traci initially felt very reluctant to ask for financial help, not least because she had previously been proud to support her family through her own efforts.  The experience of having the Kindred support worker identify her legitimate entitlements, and work with her to successfully claim them, has helped repair Traci’s feelings of confidence and self-worth.

Thank you to Jude and his family who gave us permission to share their story, current in February 2016.

“You have been a great help for us in the hospital.
I would not have coped without you.

Jude’s Mum.

 

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