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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