NDCS SALT campaign helps our family
by Sarah Charles
I'd like to introduce my family - Lewis Charles aged 8, Joe Charles aged 3, Nigel Bacon and myself Sarah Charles and let’s just say we've both reached milestone birthdays this year and it was not 21!! Lewis, Joe and myself have a moderate sensory neural hearing loss, the boys were diagnosed at the newborn screening test and I was diagnosed at 5 years of age. We all wear two hearing aids each and we must cost the NHS a fortune in batteries!
Joe's lack of speech leads to challenging behaviour due to the frustration of not being able to communicate, he can barely put two words together and when assessed his communicative behaviours were that of a hearing child approximately 12 months of age. This is a worry for Nigel and I as he is supposed to be starting school next September!
Because Joe is now wearing his hearing aids for longer periods of time, I am not checking as often to see if they are still in place. On one occasion Joe took them out and I could not find them anywhere - toy boxes were turned out, wardrobes and drawers checked, laundry basket etc. It was a case of getting the rubber gloves out and checking through the bin!
Trying to get Joe to tell me where the hearing aids were resulted into a bad episode of 'Give Us a Clue', next came bribery and pleading. Meanwhile Joe is leading me by the hand to the various rooms in the house, his way of communicating, but no hearing aids were found. Anyway, nursery beckoned and with no more time to look and running late we go to the car and there they were in his car seat taken out after an earlier visit to B&Q. Joe now has a shorter haircut so it in easier to spot if the hearing aids go AWOL. This is an example of how Joe’s speech development affects everyday life.
Joe's language was not progressing at all and he was referred to the Speech and Language Therapist (SALT). At this time we had only been made aware that there was only one specialist for children in the whole of Dorset who had only 7 hours a week including admin and travel. Therefore I was definitely going to attend both meetings organised by Shirley Sorbie (DDCS) in October 2011 and May 2012 with Fiona Haughey (Deputy Chief Operating Officer for Dorset Healthcare University NHS Foundation Trust) and Managers from SALT.
The first meeting was very emotional as we were being told that due to financial constraints/budgets etc the services available are very limited. This meeting I think gave parents the chance to give an insight to the SALT service of the day to day challenges facing our children and our concerns for their future when they don't have a voice - literally!
I am so pleased that additional funding has now been awarded. With two more therapists trained up there are now more hours of support available for our children. These sessions are vital as it provides ideas and techniques to encourage speech and information about the physicality of the movement of the mouth/tongue etc. However, it is frustrating as sessions are given in blocks so you may see a therapist for two/three weeks consecutively, then there is a large gap until the next block of appointments - but hopefully this will be addressed in time.
I would like to take this opportunity to thank Shirley Sorbie for her tireless campaign - writing to MPs and services, organising meetings, sending emails, letters, questionnaires etc etc the list is endless (where does she get the energy from?) With Shirley being so passionate about the services for our children she has put herself out there and made a real difference at the coalface of Speech and Language Therapy. We are one family who will be forever grateful. Nigel and I would also like to thank all those involved in looking after Lewis and Joe, especially Elisabeth Gower (HSS) and DDCS.