One of our volunteers writes about their experience of having a son with Postural tachycardia syndrome (PoTS) and explains the amount of professionals he saw in just one year.

One of my complaints is the number of Occupation Therapists my son will have to see just for aids for the home and school as each one is located in a different area for a separate department.

I started to consider how many people we would see as part of his Education Health Care Plan, lessons and exams; Post 16 placement interviews; assessors for benefits, and finally health professionals.

The answer was frightening and my son still has to go back to the hospital for a muscle test.

The tally to date is 60, well it was before a chemistry teacher rang up to ask if she could start teaching this week – Friday, then Monday, Tuesday, and Friday next week.

So how did I arrive at this staggering figure?

Professional who visited us

  • There have been 3 teachers teaching Science, Maths and English twice a week up to the GCSE exams in the Summer.
  • 2 exam invigilators (from school)
  • 2 SENCOs (Special Needs teachers from school)
  • 1 School Welfare Officer
  • 1 Carers Advisor (from a service Council contract out)
  • 1 Youth Support Worker (from Council)
  • 1 Educational Psychologist (from Council)
  • 2 OT’s (Occupational Therapist from the Council’s Children Services)
  • 2 SEND Advisors (Special Needs from the Council)
  • 1 Social Worker (from the Council)
  • 1 Independent Support from Parent Partnership
  • 1 Independent Support from Core Assets

A total of 18 people coming to the house.

Interviewers, Special Need staff to apply to two colleges and a school makes a total of 6.

Benefit Assessment

  • 1 for PIP (Personal Independent Payments)
  • 1 for ESA (Employment Support Allowance)
  • 1 Blue Badge

Health

  • 1 private cardiologist under the NHS
  • 1 paediatric cardiologist
  • 1 Physio
  • 1 Arrhythmic nurse
  • 1 Chronic Fatigue nurse
  • 2 Clinical Psychologists
  • 1 Social Worker
  • 1 Consultant
  • 3 Psychologists for note taking!
  • 1 podiatrist (feet)
  • 1 Optican
  • 2 Active Stand testers
  • 2 lung testers
  • 1 Echoscanner
  • 2 seven Holter fitters
  • 2 GPs
  • 4 nurses to take bloods
  • 4 different nurses (at least) to take height and weight
  • 2 muscle neurologist