Off the Shelf – is it really the only option?
Today we are delighted to share with you a post from a mum. We are not sharing their name, just their story.
I wish we could say the following account was fiction, or even a rarity, but sadly, we know many of you will relate and will have shared similar experiences.
Once Upon a Time
There was once a young person with quite complex needs.
You may have heard of ‘thinking outside the box’ but for this young person there was no such box in production; they simply didn’t make a box to fit. So out went the box and anyone working with this young person had a real challenge on their hands.
Some would grab the reins and enjoy the ride whilst others either simply did not engage at all or came on board tentatively; once on board though they soon became addicted, a bit like a first roller coaster ride.
All too often professionals never quite ‘got’ the young person. They were a sassy sort of young person who had a host of learning, medical and physical difficulties and I admit it was challenging to meet their needs but it was possible, albeit with quite a bit of creativity!
After many emails, phone calls and complaints trying to get a piece of essential equipment, the family received a phone call from a ‘professional’. Mum picked up the phone saying “Hello”
What came next was surprising.
The sound of someone having their own private rant, talking about a family who ‘knew’ their service could meet the young person’s needs; the family wasn’t prepared to agree, a family which wanted so much they had involved the local MP and other professionals, including the CCG.
Who could this professional be talking about? The person on the telephone sounded quite cross; they believed that the family concerned were trying to ‘beat the system’. The family just wanted some ‘fancy’ piece of equipment, which was not acceptable on financial grounds as the service could provide something ‘off the shelf’ for far less that would ‘easily’ meet that young person’s needs.
Off the Shelf
As it happens this young person could not be supplied ‘off the shelf’; not by choice but by design, their rare condition dictated it. In fact rarely could their family purchase anything from ‘off the shelf’ without some form of adaptation, even if it were specifically designed for special needs.
The “professional’s” rant continued for around four or five minutes, revealing details of the young person (amongst other things) as the professional clearly felt they were talking to another professional. Then the penny dropped! As the professional paused to take a breath, the parent jumped in to say “Please may I stop you there?” The caller agreed tentatively.
“It is Mum you are talking to but it is nice of you to let us know what you feel about us”.
There was stunned silence at the other end of the telephone, as if the ground had swallowed them up for a moment. Followed by “I thought I was speaking to someone else!”
The case is now under review… Please watch this space.
Over to you
Have you had a similar experience? Have you over heard a practitioner speaking about you? Or maybe you were overheard by a practitioner? Or, like a friend of mine, sent an email in error saying exactly what you thought of a certain service?
What did you do? How did you feel? What would you do?
We would love to hear from you if you have a story to share. Let others know they are not alone. We can always make it anonymous, like we have today.
Email firstname.lastname@example.org if you are interested in sharing your story.
Grab a coffee and head over to “My Story” to read other stories from parents.
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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.