Wednesday 13 August 2014

The NHS Continuing Care rollercoaster: Door 1 - referral

Ok so I have been doing bits and bobs of work to try to understand the process more clearly and to start it off.  Here is what I have found out so far:
The phrase ‘NHS Continuing Healthcare’ applies to what is available to adults (over 18)
The correct term for the parallel process that applies to children is ‘NHS Continuing Care’
I’ve been told this by the Complex Case Manager (Children), Associate Designated Nurse Safeguarding Children from NHS Oldham’s Clinical Commissioning Group.  Henceforth this bod is going to be referred to as the CCMC.
It’s important to note at this point that according to the NHS Choices web site, the main difference between children’s and adults continuing care ‘is that while continuing healthcare for adults focuses mainly on health and care needs, continuing care for a child or young person should also consider their physical, emotional and intellectual development as they move towards adulthood.’
I’m getting quite friendly with the CCMC – she’s ringing me tomorrow about the first referral I’ve made for a young person with autism and severe anxiety.  We’ll call this young teen Tess.  Tess has a diagnosis of autism and two older siblings on the spectrum.  All 3 young people are living at home with Mum who is a single parent and a full time carer.
When I asked the CCMC about the referral process, she told me ‘As each child is individual in their needs and current support the process would be specific to the individual family. Please give me a call on the number below to discuss the child. I can then advise on the best way to progress.’
I have an anxiety that this phone chat is going to be used to try to gate-keep me from even getting through the first door i.e. for me to successfully make the referral.  Dixon says I should stop being such a conspiracy theorist but after experiencing (in my role as Head of Development at Bright Futures School) several cases of stone-walling and off-fobbing from education and social care services for different students, I am ever the sceptic. 
In terms of the referral, the CCMC tells me ‘Any of the multidisciplinary team involved in the care of a child can make a referral for Continuing Care. It would usually then be one of the health professionals involved in the care of the child who would complete the initial assessment.’
For Tess, there is unfortunately currently no health professional involved in her case.  She was referred to CAMHS and the practitioner there did a 6 session piece of work with her Mum to support Mum to help Tess use anxiety-management strategies.  At this point, Tess was suffering from increasingly frequent panic attacks, was hearing voices and seeing threatening figures and was struggling to stop herself perseverating on negative thoughts.  She was also having great difficulty tolerating being around unfamiliar adults and children/young people and experiencing what is being investigated to determine whether it is epileptic seizures or PNES (Psychogenic Non-Epileptic Seizures – attacks that look like epileptic seizures but are a manifestation of psychological distress).  Mum was very worried and feeling utterly helpless.  A Consultant Paediatrician recently saw Tess and remarked to her Mum that Tess’ current difficulties were a clear case of previous difficulties being untreated/unmanaged by services to the point that they have now escalated into crisis.  Of course at this point, the difficulties are much more severe and much more costly to address.
Another referral to CAMHS has been made and has been accepted but at this point the practitioner (a new one because the previous one’s post was not renewed) has not met Tess and so cannot be said to be actively involved in the case.  So there isn’t really a health professional available who could undertake the initial assessment.  On the other hand, staff at our school are very familiar with Tess’ case and are more than capable of filling in referral forms and undertaking assessments (we have CAFs, Child in Need meetings and RASs, Child Protection meetings, annual review meetings and forms etc etc coming out of our ears), so it will be interesting to see if I, as referrer, might qualify as a professional who can complete the Continuing Care initial assessment.
The assessment process seems to be similar in format to that of social care in that it involves an initial assessment followed by a more in-depth full assessment.

The DH guidelines state that initial assessment should be carried out by ‘a healthcare professional who is experienced in working with children and young people. This person may be described as the "nominated children and young people’s health assessor”.’
Experience in working with children and young people is one thing…experience of working with children and young people with autism (both with and without learning difficulties) is quite another ball game.  To really understand the impact of autism any professional would need a robust understanding of child development and how interpersonal relationships in the early years of child development are key to shaping our ability to regulate our emotions, to the development of resilience, to our ability take different perspectives in order to inform our thinking, to respond flexibly and adaptively in the moment in a world of ever-changing, competing demands, to be able to effectively process information from a number of different sensory channels simultaneously.
Ok so I’m already finding this a tad scary. If an assessment is to be undertaken on any CYP with autism, we need to have confidence that the assessor will understand the impact of their condition.  At the moment I don’t feel I can give this a tick.  If the assessor doesn’t have this type of experience and understanding, how does that comply with the Equality Act and the Autism Act??……but I’m running away with myself here..…focus, woman! and wait to see what the CCMC says.
In Continuing Healthcare (adults) there is an initial assessment checklist which is used to evaluate whether the adult should proceed to a full assessment.  If a full assessment is warranted, the ‘Decision Support Tool’ (DST) is then used to undertake the full assessment.  At the moment, no-one in the Integrated Health and Social Team from Oldham’s CCG is able to answer my question about whether there is an initial assessment checklist for children’s Continuing Care.  I was asked to wait to speak to the CCMC about the initial assessment.  It would be pretty scary to find that there is no standard assessment tool for this initial stage……what would that mean for transparency and accountability of process?  It’s alarming to note that if there is an initial assessment checklist (or any formal initial assessment process for that matter), no-one in the whole of the Integrated Team appears to know about it.
Jumping ahead, I have a copy of the DST that is used for full assessment for children in Oldham.  The domains assessed are: Challenging Behaviour; Communication; Mobility; Nutrition, Food & Drink; Continence & Elimination; Skin & Tissue Viability; Breathing; Drug Therapies & Medicines (symptom management); Psychological & Emotional; Seizures.  It is very much like the national DST for children, which can be found here at Annexe A.
Care domains can have up to five levels of need based on a mixture of complexity, intensity, unpredictability of need and risk to the child as reflected at the following levels: Priority; Severe; High; Medium; Low.
Three high, one severe or one priority rating indicates a need for continuing care.  
In terms of Tess’ needs, I would argue that she has severe needs in 3 domains and high needs in two domains.  The ‘severe’ may even be ‘priority’ but this is difficult to assess without any other assessments to compare it to.  I do however feel confident in providing evidence for the 3 ‘severe’ ratings I have identified and on that basis alone (she actually only needs one 'severe') she should qualify for Continuing Care.
But will Tess’ case even get through the door? 

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