Partnership Commissioning Unit

Commissioning services on behalf of:

NHS Hambleton, Richmondshire and Whitby CCG

NHS Harrogate and Rural District CCG

NHS Scarborough and Ryedale CCG

NHS Vale of York CCG

Item Number:4
Meeting Date: PCU Management Board – 9 January 2014
Report’s Sponsoring Director:
Janet Probert / Report Author:
George Lee, Senior Commissioning Specialist
1. Title of Paper: Autism Spectrum Disorder (ASD) Diagnosis Services Options
2. Purpose of this paper:
The purpose of this paper is describe the estimated prevalence of Autism in Children, young people and adults, the current demand for diagnostic assessments, the current diagnostic capacity for assessments, and the options for the future commissioning for autism diagnoses services for children aged 0 to 19 years and adults of working age.
3. Need
Diagnostic Services for Autistic Spectrum Disorder (ASD) in children
The body of text below is an extract from the CCG profiles for 2012 on the CHIMAT website. This is the most recent best available estimate of the prevalence of ASD.
A study of 56,946 children in South East London by Baird et al (2006) estimated the prevalence of autism in children aged 9 to 10 years at 38.9 per 10,000 and that of other ASDs at 77.2 per 10,000, making the total prevalence of all ASDs 116.1 children per 10,000.
A survey by Baron-Cohen et al (2009) of autism-spectrum conditions using the Special Educational Needs (SEN) register alongside a survey of children in schools aged 5 to 9 years produced prevalence estimates of autism-spectrum conditions of 94 per 10,000 and 99 per 10,000 respectively. The ratio of known to unknown cases is about 3:2. Taken together, a prevalence of 157 per 10,000 has been estimated, including previously undiagnosed cases.
The European Commission (2005) highlights the problems associated with establishing prevalence rates for Autistic Spectrum Disorders. These include the absence of long-term studies of psychiatric case registers and inconsistencies of definition over time and between locations.
Nevertheless the Commission estimates that according to the existing information, the age-specific prevalence rates for 'classical autism' in the European Union (EU) could be estimated as varying from 3.3 to 16.0 per 10,000. These rates could however increase to a range estimated between 30 and 63 per 10,000 when all forms of autism spectrum disorders are included. Debate remains about the validity and usefulness of a broad definition of autism. The EU definition of rare diseases focuses on those diseases lower than 5 per 10,000. The Commission notes that ASD could be considered as a rare disease using the most restrictive diagnosis criteria but it seems more appropriate to not refer to ASD as a rare disease.
The table shows the numbers of children with autistic spectrum disorders if the prevalence rates found by Baird et al (2006) and by Baron-Cohen et al (2009) were applied to the population of NHS Hambleton, Richmondshire and Whitby, NHS Harrogate and Rural District CCG, NHS Scarborough and Ryedale CCG and NHS Vale of York CCG.
Estimated number of children with autistic spectrum disorders
Autism in children aged 9-10 years (2012) / Other ASDs in children aged 9-10 years (2012) / Total of all ASDs in children aged 9-10 years (2012) / Autism-spectrum conditions disorders in children aged 5-9 years (2012)
NHS Hambleton, Richmondshire and Whitby / 60 / 115 / 175 / 110
NHS Harrogate and Rural District / 70 / 135 / 205 / 135
NHS Scarborough and Ryedale / 50 / 95 / 140 / 95
NHS Vale of York / 135 / 265 / 400 / 270
Source: General Practice (GP) registered patient counts aggregated up to CCG level (CCG report);
Office for National Statistics mid year population estimates for 2012 (local authority report).
Baird, G. et al (2006). Baron-Cohen, S. et al (2009).
Demand for Children’s Autism Diagnoses
The former CCG commissioned sufficient capacity to meet an expected annual prevalence of 1% demand. This was based on a survey by the Office of National Statistics of the mental health of children and young people in Great Britain that found a prevalence rate of 0.9% for autism spectrum disorders or90 in 10,000 (Green et al, 2005). However these were not differentiated into autism, Asperger syndrome or any type of autism spectrum disorder.
CCG contracted providers have consistently reported that actual demand for autism assessments is approximately 2% for children 5 -19 years of age for 2011/2012 and 2013/2014. The reasons for the difference between expectedprevalence and actual demand are not clear.
It may be that local services are much better at detecting greater numbers of children who are likely to have autism, the national ratio for known and unknown cases is 3:2, but it is possible that local services are performing better than the national average.
It is also possible that historicalunder diagnoses has led to an accumulative number of children and young people who are now requiring diagnoses. In the event it would be reasonable to expect the annual demand for assessments to reduce once these patients have received their diagnosis.
The current position is demand is likely to remain between 1% and 2% for at least the next two years.
Children’s Provision and Gap Analysis
CCG / Provider / In contract Activity / Expected Demand / Required Additional Activity
HRW CCG / HDFT / 17 / 47 / 30
HaRD CCG / HDFT / 48 / 120(+/- 10%) / 62(approx.)
SRCCG
HRW CCG(Whitby) / YDHT / 30 / 70 / 40
VoY CCG / LYPFT / 70 / 70 / 0
For children aged 5-19. Under 5s are managed within contract.
Quality
There appears to be some variation in performance between providers. HDFT and LYPFT are consistently the highest performing providers with a higher proportion of referrals receiving a diagnosis. As with HDFT, YDHT perform very well with under 5 year olds, however there have been some concerns about their performance for 5 – 19 year olds on the east coast.
Cost
There is variation in the unit cost for autism diagnosis. The range is between £2000 and £3040 per assessment.
HDFT in contract activity / 65 x £3040=197600 / HDFT additional activity expected costs / 92x£2000=184000 / Total=£381600
YDHT in contract activity / 30x £2800=84000 / HDFT additional activity expected costs / 40x£2800=112000 / Total=£196000
LYPFT In contract Activity / 70 x £2500=175000 / LYPFT additional activity expected costs / Nil / Total=£175000
Sum total £752600
The calculations above exclude waiting list initiative activity. The cost of a waiting list initiative varies provider-to-provider and range from £2800 to £2000 per unit.
HDFT £2200 per unit
LYPFT £2500 per unit
YDHT £2800 per unit
Adult Autism Spectrum
Need for Diagnostic Services for Autistic Spectrum Disorder (ASD) in adults
In 2012, the Government's autism prevalence study was published and confirmed a 1% prevalence of autism among adults. The 2012 North Yorkshire Joint Strategic Needs Assessment indicates that in 2011 there were 3379 males, 354 females with a diagnosis of autism living in North Yorkshire.
Demand for Adult Autism Diagnoses
Capacity planning for adult autism assessments is challenging. Ideally most patients would have been identified as a child and you might expect a smaller number of patients who require a diagnosis after the age of 18, but this is difficult to quantify.
The PCU are doing further data analysis on activity to try and establish a mean for a three-year period. From April 1st 2013 until November there has been an average of 15 requests per month. If this trajectory were sustained for the rest of the financial year then we would expect 180 assessments requests per year. Of these the PCU has approved 166.
Until more detailed work has been completed, the use of a part year data is unlikely to be reliable enough to make a firm judgement about future expected demand.
Adult Diagnostic Provision and Gap Analysis
Adult autism diagnosis services are currently spot purchased on a case-by-case basis from Leeds York Partnership Trust and Tees Esk Wier Valleys NHS Foundation Trust. Both trusts have indicated that they would favour a block approach as it better enables them to manage the operational aspects of service provision.
Quality
There have been no concerns over the quality of these service provisions. However there is not an agreed service specification or pathway for adult autism diagnoses and this makes it difficult to objectively measure performance.
Costs
The cost of an adult autism assessment and follow up is in the range of £1000 to £2500 depending on the amount of follow up the patient requires from the service. Typically this is up to three follow up appointments. 111 cases were reviewed within 2012/13. The cost for these patients totalled £122,751 for a part year effect. This would average at £1105 per patient and with and estimated full year effect of 166 patients the annual spend would be approximately £183.5k
Commissioning Options
The total collective expenditure for children and adult diagnoses is approximately £850k per year. The CCGs have the option of either seeking a local solution for in commissioning services for their locality or taking a collaborative approach with one or more of the other CCGs.
Options for Children’s Autism Diagnoses 5 - 19
Note: Under 5s and pre-speach children can be more difficult to diagnose may have complex and comorbid presentations. For this reason they are better seen and diagnosed within general paediatric services as part of in tariff activity.
Option 1:
Continue to use the existing contracted service providers at present cost.
Benefits
Two of the providers, HDFT and LYPFT are good performers. Paediatric services work as part of a whole system and part of their effectiveness is through their established relationships with other children’s health and social care services.
Using the existing providers would keep services local, help facilitate easier access for families and maintain the exiting team around the child, including education, social care and maintain local care pathways. There are secondary benefits through greater integration between CAMHS and paediatric services, and the additional capacity in the system increases provider resilience and flexibility in managing demand
There is likely to be greater flexibility in negating annual activity rates if demand falls or increases. In the context of a whole paediatric service there more scope for providers flexibility.
Disbenefits
Because there is variation in price and in quality between providers. There may be less benefit for some CCGs in continuing with existing providers.
Premitigated Risks
There is a risk that YDHT will continue to have quality and performance issues.
There is no way of predicting future activity, in may increase, decrease or level off.
Option 2:
Attempt to renegotiate a better price with exiting providers
Benefits
There is potential to reduce costs with LYPFT and YDHT and bring them closer in line with the more recent proposals from HDFT at base cost of £2000 per unit. This would avoid the CCG cost of a tender and the managerial effort that would be required. It would also avoid an impact of income reduction on established providers and implications this may have for the sustainability of local paediatric services.
There is likely to be greater flexibility in negating annual activity rates if demand falls or increases. In the context of a whole paediatric service there more scope for providers flexibility.
Using the existing providers would keep services local, help facilitate easier access for families and maintain the exiting team around the child, including education, social care and maintain local care pathways. There are secondary benefits through greater integration between CAMHS and paediatric services, and the additional capacity in the system increases provider resilience and flexibility in managing demand
Disbenefits
Because there is variation in price and in quality between providers. There may be less benefit for some CCGs in continuing with existing providers.
Premitigated Risks
There is little prospect of reducing the unit cost of a children’s autism assessment below £2000. This price is more competitive than the Maudsley or Newcastle unit price at £2300. For HRW and HaRD CCGs there is unlikely to be any expect benefit in further negotiations on current price of £2000 per unit. However there may be scope to discuss the over value of current in contract activity at £3040 per unit with HDFT.
The scope for negotiating an improved future unit price is likely limited to LYPFT and YDHT who currently charge £2500 and £2800 per unit. Negotiations to reduce this may fail.
There is no way of predicting future activity, in may increase, decrease or level off.
Option 3:
Continue to use the existing service providers for 2014/15 and retender the services for 2015/16 on.
Benefits
There may be differential benefits for CCGs in testing the market. HWR and HaRD CCGs are unlikely to obtain a better price or secure any improvement to the quality of the service they currently receive from HDFT. SRCCG and the VoY CCG may improve their unit costs and also address some of the quality and performance concerns there are with YDHT withautism assessments in the SCR CCG and the Whitby area of HRW CCG.
There would be scope to invite bidders for both children and adult autism diagnoses services at the same time and maximise the potential for economies of scale.
Disbenefits
The cost and managerial effort of a tender may not lead to an improvement in the price or quality for HRW and HaRD CCG.
A procurement approach will change the existing local pathways will likely require a consultation exercise and need to go through the Scrutiny of Health Committee. There will also be a need for an equality impact assessment before notice is given to existing providers.
Premitigated Risks
There is a risk that procurement may not lead to an improvement in price or quality for all CCGs.Removing income from existing providers may have wider impacts on the sustainability of a local paediatric Service.
There is no way of predicting future activity, in may increase, decrease or level off.
Autism diagnosis tends to be a function of a paediatric services rather than a stand-alone service. Services such as the Maudsley or Newcastle rely on other services to provide screening, differential diagnosis and triage functions. In addition when provided from geographically remote sites services tend not to have a relationship with local schools and cannot do direct classroom observations etc. There is a risk that local services may not collaborate well with a new provider that has a sole function of autism diagnosis, and where they do they are likely to be additional costs for triage assessments.
There is a risk that the scale of business will not attract supplier.In the event that a local provider can be commissioned, there may be additional costs for accommodation and infrastructure.
In the event of a successful bidder being geographically remote from North Yorkshire, access may be more challenging for patients and their families, and in particular for those who do not have any independent means of transport.
The CSU who would be providing the procurement support have indicated there may be some capacity issues in supporting procurement in 2014/15.
Options for adult Autism Diagnoses
Option 1
Continue with the current spot purchasing arrangements
Benefits
Within the current model the pathway is managed by the PCU. This ensures that all patients are screened and provides assurance that only those patients who are likely to have autism are send for assessment or are redirected to the most appropriate care pathway.
Disbenefits
There is little or no scope to improve value for money through spot purchasing. Price tends to be set by the provider.
There is variability in the duration of service with some patients requiring more follow up and others not. This may be appropriate but without agreed standards it is hard to know that, and duration also has an impact on price.
Premitigated Risks
There is no CCG signed off service specification with providers and therefore no quality and outcomes baseline for the CCGs to be able to demonstrate that providers are held to account.
Option 2
Secure a limited block contract with a negotiated price for activity over and above the contract
Benefits
This option would secure better value and better assure quality through a service specification and contract. It would give providers an assured level of income for activity and support operational management and effectiveness. It would allow greater flexibility for the CCGs in managing expected demand while there remains uncertainty over need.
Disbenefits
This option may be suboptimal for the CCGs in maximising best value for in contract and out of contract activity.
Premitigated Risks
It may not be possible to pursue this arrangement outside a procurement exercise. It is likely to depend on the initial financial values for the block element. Further advice will be needed from contracting and legal within the CSU.
Option 3
Undertake a procurement exercise for adult autism diagnosis.
Benefits
This option is likely to provide best value and quality.
Disbenefits
There are no obvious disbenefits over the standing arrangements
Premitigated Risks
It is difficult to be certain about expected demand until further work is done on understanding expected demand. This will be completed by the end of February 2014.
The CSU who would be providing the procurement support have indicated there may be some capacity issues in supporting procurement in 2014/15.

Recommendations

Children

It is the view of the PCU that there is unlikely to be any benefits in HaRD CCG or HRW CCG in undertaking a procurement exercise for children’s autism diagnosis services. The current contracted provider is providing a high quality service at a very competitive price when benchmarked against other services in North Yorkshire and Nationally.

There may be value in SCR CCG and the Vale of York CCG undertaking a procurement exercise but the expected benefits will be less and the risks may increase if this is not done collaboratively.

Adults

The PCU recommends that any decision to tender adult autism diagnoses services is deferred until February Board. This will allow further time to complete a more detailed analysis of need and expected demand.
Action Required
For the CCGs to give consideration to the options for children and adult autism diagnoses services in this paper, and direct the PCU on actions to be taken.
Next Steps
In the event that a procurement approach is favoured by one or more of the CCGs, the PCU will prepare a detailed project plan, time line and risk assessment for final approval by the end of February 2014.
In the event that one or more of the other options are selected the PCU will prepare an action plan with a timeline and make this available to the CCG/s

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