Friday, 16 October 2015

Continuing Care update - gird your loins!

I last blogged about this in May, when Tess and Ned's applications for assessment under the Framework for Children and Young Peoples Continuing Care were finally submitted. 

Just to remind ourselves about the criteria for an assessment - the Framework states on page 10 at number 1.1 point 5:

‘A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.’

The case was made that both Tess and Ned have various needs that arise from their autism that cannot be met by existing services. 

It is also clear (to me…with an eye on Education, Health and Care Plans) that both have needs which meet criteria in all three domains of health, education and social care:

Education - both young people attend Bright Futures – a special independent school with a highly specialised low arousal environment and specialised in-house social communication programme (based on the principles and practice of Relationship Development Intervention, RDI).

Social care - on the social care RAS assessment (a Child in Need assessment under Section 17 of the Children Act), both young people scored in the category of ‘very high support needs with profound impact on family life.’

Health (Continuing Care criteria) – Ned’s autism is characterised by high anxiety leading to oppositional, demand-avoidant behaviour, requiring exceptional levels of skill to in order to de-escalate situations and/or negotiate solutions to problems and obstacles.  This presentation impairs Ned’s personal growth and development because it is a huge barrier to him participating in everyday activities, friendships and relationships.

Tess’ autism is characterised by very high anxiety and poor emotional regulation and self-awareness.  Her anxiety has left her housebound and unable to attend school, spiraling into depression.  Very high levels of intensive support over a protracted period of time have been required to help Tess engage with learning again.  Ongoing management is in place at school but there is nothing in place in the home to help Mum (a single parent with 2 other children on the spectrum) manage Tess' considerable difficulties.  Tess is not yet able to interact comfortably with peers and is still unable to leave the house outside of school time.

Both young people are at high risk of social exclusion and their mental health is precarious due to poor resilience and impaired emotional regulation.

Regular followers may remember that in my May blog, the plan was ‘to see whether these two applications are directed away from the Continuing Care process and if they are, to challenge this’.

Each application was submitted to a different Clinical Commissioning Group (CCG – the local health bods who hold the purse strings) because the young people’s GPs (MDs for our American friends) were in different CCG areas. 

The May predictions came true – in Ned’s case, his Mum was told that the ‘Individual Funding Request’ (IFR) process was the process to use for this type of application.  No application of Continuing Care criteria, no assessment of need, just a direction to use the IFR process.  

Back in May, a home programme of RDI was identified on the Continuing Care checklist that was completed by Ned’s social worker as possible provision to meet the needs outlined in the checklist.  What appears to have happened is that the CCG has made the decision not to assess based not on Ned’s needs, but on the fact that RDI was suggested as a provision to meet need.

The Framework for Children and Young Peoples Continuing Care does not use potential provision as the basis on which to make the assessment, it says that ‘a continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.’

So the CCG are not applying the Framework criteria and Ned is being excluded from an assessment for services that could meet identified needs.  Mum has now made these points to the Health Service Ombudsman and is awaiting a response.

In Tess’ case, a similar response was received.  Mum was told that the application for Tess to access an out of area assessment and a number of sessions of specialised psycho-social input ‘was not considered eligible under Continuing Care.’  Again, the decision appears to have been made not based on needs but based on proposed provision.

Tess's CCG then magnanimously considered her needs under the ‘Individual Effective Use of Resources’ criteria (same as IFR).  The referral to the out of area assessment was deemed ‘not clinically appropriate’ and Mum was advised instead that Tess:

  • Would be provided with CBT
  • Should read the Royal College of Psychiatrists’ leaflets on anxiety and panic with Mum (yes, you read that correctly – someone who is borderline agoraphobic should read a leaflet)
  • Should undergo a trial of Sertraline (Zoloft, an SSRI drug).

It was stated that the Sertraline and CBT recommendations were ‘in keeping with the evidence base.’

A little bit of research (thank you Paul Whiteley) produced the following information on Sertraline:

‘Definitive statements about the efficacy and tolerability of sertraline for treating adults with PDDs must await results from double-blind, placebo-controlled trials. These preliminary results should not be generalized to include children and adolescents with PDDs.’ (PDDs = ‘Pervasive Developmental Disorders’ which include autism).

Mum has written back to the Commissioner asking for comments in light of the above information.  She has also asked the Commissioner to clarify which of Tess’s needs each of the recommendations are expected to meet, over what timescale the desired outcomes can be expected to be achieved and what the success criteria will be,  as well as how frequently it is recommended that Tess attends CBT appointments in order for the outcomes to be achieved. 

The final point she made to the Commissioner was that the NICE guidelines on the management of autism in children and young people recommend that pharmaceutical interventions should be the treatment of last resort - yet these are being recommended in the absence of having exhausted psycho-social interventions.

No response yet. 

Tess’s Mum has made a separate complaint to the Ombudsman on the grounds that the decision not to assess under the Continuing Care criteria appears to have been made not based on needs but based on proposed provision.

An agonisingly slow and protracted process.  Even if the Ombudsman does rule in the families’ favour and directs the CCGs to undertake assessments using the Continuing Care framework criteria, there may be yet another hurdle – with potentially more complaining and Ombudsmanning - if the CCG somehow finds that neither of the young people meet the criteria once the criteria are properly applied.

Ok - here are the instructions for loin girding.  Think we're gonna need 'em.



  1. The law says...The people who know the kids says..the guidance says.. best practice says...but never mind read a leaflet. Bloody bloody stupid system.

  2. Thanks for taking the time to comment Lori. Agree re stupid system - it's sooo frustrating.