Lincolnshire Parent Carer Forum
Lincolnshire Parent Carer Forum
admin@lincspcf.org.uk LPCF, PO Box 1183,
Spalding, PE11 9EE
Registered Charity No. 1141060 * ICO Registration Z1810966
Event ID
6
Service
Health
Guest Name
Russell Outen-Coe
Guest Role
Russell is the Designated Clinical Officer(DCO) for SEND in Lincolnshire.
Question02 Who diagnoses Dyspraxia in Lincolnshire?
After referral to Lincs NHS OT, Physio and Community Paediatricians for dyspraxia diagnosis by Kings Lynn hospital Paediatrician all have sent letters stating dyspraxia is not recognised/diagnosed by Lincs NHS.
Question07 Why isn't Tourette’s syndrome diagnosed in Lincolnshire?
I have tried to get my son referred to out of area service, but no luck. Does this mean the evidence wasn't compelling enough?
I became so fed up of waiting and watching my son in pain with his tics, that I had him seen by a private psychiatrist (who also works for NHS) and he has been diagnosed.
This is clearly a system that is not fit for purpose
Question10 Why do Lincolnshire have no NHS Sensory Integration Therapists for assessing, diagnosing and supporting SPD?
The pilot scheme was all well and good, but giving parents and carers tips to help reduce the symptoms does not in any way help in getting the support they need in educational settings.
Schools and LA'S do not listen to parents and so the child suffers all day every day, exacerbating the problems.
Unless all adults around the child are singing from the same hymn sheet, this is futile.
Question11 Why are there no clinical pathways given to GPs for diagnosis such as Ehlers Danlos Syndrome?
Why are there no clinical pathways given to GPs for diagnosis such as EDs
Disappointed with the answer.
GPs have been actively trying to get rid of the GPs toolkit for diagnosis. Only EDs UK intervention managed to get another 6months grace. Specialist consultants will not see hypermobile type EDs - the GP is the only point of contact - with no one to refer to as there are no specialists to refer to.
Consequently each symptom is dealt with in isolation by practitioners with no understanding of EDs. This is why a specific pathway is needed or at least a lead who can find those who will accept referrals. EDs is highly unreported, partly due to non diagnosis by GPs and symptoms treated in isolation. It is not as rare as believed.
There are hundreds of patients in Lincolnshire - many are children. Yet no tailored support offered in county.