2018 06 Results of the Parent's Survey for the YHEC Economic Analysis

  • We received a fabulous 164 responses to our survey, of which 104 gave complete responses.
  • The most common impairment reported was sensori-neural hearing loss, followed by balance problems and learning disabilities.  For the majority, more than one impairment was reported. 
  • Other impairments reported were  language problems (not due to hearing loss), visual problems, dietary problems, motor problems (not cerebral palsy), glue ear, cerebral palsy, epilepsy, ASD, ADHD and precocious puberty.
  • Almost half of the school age children whose parents responded (45%) attend mainstream education, but received additional support.  26% attend a residential or non-residential special needs education facility.
  • A small number of individuals responding to the survey were above school age, and of these, more than half were unable to work and none were living independently.
  • The most commonly accessed services for children with cCMV was audiology, followed by paediatrics followed by general practitioners.  Educational services such as teaching assistants and teachers of the deaf are also commonly accessed.
  • On average, across all individuals with cCMV, the most regularly accessed service is speech and language therapy, with an average of 2.57 visits reported in the previous year.
  • 22 caregivers reported that the family had reduced working hours to care for the individual with cCMV.  30 caregivers indicated that one of more members of the family had given up work completely.
  • 47 caregivers reported that a member of their family had taken time off work to care for their child or to attend appointments in the preceding year.  Families averaged 95 hours absence from work across the year.
  • Families reported many extra costs associated with caring for a child or individual with cCMV.  These ranged from specialist equipment such as wheelchairs, mobility adaptions in home and car, hearing aids and cochlear implants to ongoing costs such as travel/parking for appointments, medication, physiotherapy, counselling etc.  Whilst costs of specialist equipment were covered by either the NHS or Local Authorities, additional cost burdens were paid for by the family or with support from charities and often amounted to substantial costs across the course of a year.

Our Stories

Sept 2011 I found out at my 20 week scan that something wasn't quite right with my little girl. We were told her cerebellum in her brain was missing, and that this would affect her... Read more
Thomas is 8 years old and has brain conditions due to CMV. He is severely disabled as a result but he is the happiest little boy in the world.  In her blog, Thomas' mum Lucy,... Read more

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