Tuesday, 2 April 2013

Known Unknowns: the definition of a waiting list

The brand new dawn of commissioning by CCGs began yesterday. The North Yorkshire and York PCT Cluster Quality Handover Document (15 March 2013)  gave the new CCGs the picture on healthcare provision in North Yorkshire and had something to say on autism diagnosis:
2.17 Autism assessment waiting lists
Over 18 months ago there was growing concern in the Scarborough, Whitby Ryedale patch of the PCT of the long waits that were occurring in relation to Autism assessments. Non- recurrent investment was undertaken to resolve this issue. In order to inform future commissioning decisions a prevalence model was developed and commissioned activity for autism assessments within the whole of North Yorkshire was based upon this prevalence model.
Unfortunately, the numbers of children (0 – 19 years) within the North Yorkshire region requiring autism assessments are in excess of the commissioned activity, resulting in waiting lists being established. This appears to be reflected nationally.
In September 2011, a NICE guideline was published, ‘Autism: recognition, referral and diagnosis of children and young people on the autism spectrum’. The NICE guidance is clear that the start of the autism diagnostic assessment is within 3 months of the referral to the autism team.
The pathway approaches to autism diagnostic assessment are both complex and varied within our region as our providers have not adopted a uniform approach. Consequently, waiting lists declared in each of our localities cannot be compared since the clock starts and stops at different points on the pathway, and this makes it difficult to understand the exact nature and size of the problem within the region as a whole.
To rectify this, each of our providers have been contacted and requested to provide the Commissioning team with the current ‘waiting’ definition that they are applying and the size of their waiting lists. Once a full understanding of these issues within each locality has been gained a North Yorkshire and York – wide solution can be developed. 

We know it cannot have been easy transferring over to the new commissioning system, which must be why this assessment misses out the following:

  • Concern in Scarborough has been ongoing with patients since 2008-09 and possibly earlier due to the huge delays in diagnosis (4-5 years according to some parents)
  • Children were placed on unofficial waiting lists before being place on official waiting lists
  • The diagnostic service for children over five in Hambleton, Richmondshire and District and over seven in Harrogate and District was cut in 2009 or earlier. The Trust refused to fund out of area diagnosis meaning children could not access a diagnosis at all. The Trust had no idea how many children this affected.
  • In 2011 the entire diagnostic service in Harrogate and District was suspended for months as the multi-disciplinary team lacked a clinical psychologist. The Trust refused to place children on a waiting list and refused to fund out of area diagnosis
  • A backlog of children waiting assessment had developed well before the 0-19 service was commissioned, the size of which was not known by the Trust, is not acknowledged in this assessment, and which the Trust/CCG do not seem to haven taken into account when commissioning the 0-19 service.

NICE Guidance on diagnosis (which set out the requirement for a comprehensive 0-19 service) was published in September 2011. The guidance was widely trailed and was available in draft form from January 2011. It took the Trust until mid-late 2012 to get the service fully operational.

It looks as though the CCGs in shadow form have, until now, accepted the Trust's old model of commissioning, that is to say number of assessments funded bears no relation to the demand for service.

It can be implied from the analysis that the CCGs do know how many children are on the providers' variously defined waiting lists, but are too coy to say.

Why did the Trust/CCG not carry out an assessment of demand before commissioning the 0-19 service at the current levels?

The growing numbers of children awaiting diagnosis are not a surprise, nor are they "unfortunate". It will be interesting to see what information the CCGs publish and whether commissioning will eventually match demand, but until such time we would like to suggest a definition of "waiting list" that could be standardised across all providers: a child is on the waiting list from the first parent/child visit  to a GP to the date of the diagnosis/decision making meeting. What could be clearer?