It has been almost a year since COT originally produced and published their SI practice briefing paper, this was done without consultation with Sensory Integration Network even though the majority of SI networks staff and volunteers are COT members.
Over this time is has become clear the detrimental impact that the practice briefing is having on the provision of SI therapy in the UK, and I have personally come across many examples of both therapists and parents who have been unable to access funding for therapy and training as a direct result of this briefing. I am looking to build a data base of evidence and I would like both families and parents to let us know their stories. This can be done by e-mailing me at firstname.lastname@example.org
A small group of parents had a very pleasant meeting with 2 members of staff from COT in July of last year. The people we met with listened to us and promised us that new guidelines for parents and commissioners would be published, and also that the practice briefing would become a “working document” which they would be open to editing. Unfortunately these promises have not been kept. Although I met personally with Julia Scott at the OT show in November, I have since had no communication whatsoever from COT.
I still feel that this document published by College of Occupational Therapists will make accessing Sensory Integration therapy for our children even more difficult than it already is. Because of this i have decided that it is time to revive the petition.
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This document should never have been published publicly, practice breifings are usually published only for members. however against their own policies and usual practice this document was placed in the public domain. Since the petition was started the document was withdrawn from the public section of the website, however no formal retraction or apology has ever been made.
There are many other problems with the document,
The briefing appears to be trying to discredit the use of SI as an approach to helping our children; it tries to say in a few places that there is a lack of evidence to support SI. The problem is that they have left out any references to newer research which clearly supports the use of SI and shows that it does work.
The briefing says that SPD is not included in the DSM-V, this is the book which doctors use to find the criteria for diagnosing conditions such as ASD or ADHD. Because SPD’s not listed in the DSM-V book doctors can’t yet make a diagnosis of SPD and there are no NICE guidelines saying what the NHS has to provide. But the briefing leaves out other important points, it doesn’t make clear that there were some important changes put into the DSM-V about sensory processing, such as sensory difficulties now being included when doctors diagnose ASD.
The briefing advises OT’s to use their knowledge of sensory processing difficulties to advise families to make environments such as bedrooms and classrooms more sensory friendly instead of actually using sensory integration therapy.
So for example a child with oversensitivity to noise, may be advised to be in a quieter environment or use ear defenders, rather than receive SI therapy which would help their body to rewire their sensory systems to be able to cope with noisy environments better forever. As a parent I know which I intervention I would prefer for my child.
Why does this affect families?
As parents we want the best therapies for our children. In the UK it is incredibly difficult for the majority of families to access SI therapy this is because commissioners (the people who pay for the NHS services we get) are not investing time and money in training or employing the therapists who can help our children and young people through Sensory integration therapy. Our children and young people will live with the consequences of this lack of investment for the rest of their lives.
Commissioners have a tough job, the have to decide how they will spend the money that they have on services to help children and families living with conditions such as ASD / ADHD and SPD. There is lots of competition for what the funding can be spent on, and the commissioners have to be careful because they will have to answer for the decisions that they make.
Commissioners have to follow rules and get advice about where they are going to invest what little money they have. As well as taking note of demand from families they also have to look to professional bodies such as COT for advice and guidance when deciding how much if any money will be spent on SI training and therapy for children in the areas where we live.
This briefing affects all of our families because we want access to SI therapy for our children, we want there to be trained OT’s all over the country so that children can have access to SI when they are as young as possible. To bring about the changes we need to make this happen we have to have the support of the professional bodies like COT so that when commissioners look for professional advice and guidance that they see that SI is something worth investing in.
More information can be found on the SI network’s webpage
Once again, Thank you so much for supporting this petition. It is so important to me that Sensory Integration Therapy be widely available to help as many children as possible, and I want you to know how much I appreciate your support in this matter.