"Complex Child Communication Team (CCDT)"

About: Norfolk Norfolk Community Health and Care NHS Trust The Queen Elizabeth Hospital (King's Lynn)

(as a parent/guardian),

I would like to feedback to you our family’s experience of Community Health and specifically the Children’s Complex Communication Team (CCDT).

I have 2 sons. One is now 9 years old, he is diagnosed with Aspergers, ADHD, dyspraxia, dyslexia and Irlen Syndrome. As the waiting lists were very long for the ASD assessment my husband and I decided to have private assessments done. These were eventually accepted by the Trust and the NHS confirmed he had Aspergers without further NHS assessments.

My other son has just turned 7 and I noticed he was struggling around age 4. He had significant attention difficulties and saw a female clinician at the trust; she could see significant problems even though he was so young and was diagnosed with ADHD age 6. He is unable to be medicated for this as he has a very rigid, restricted diet due to sensory issues around food. Regarding this he has seen a dietician and play therapist at the Roxburgh Centre, but they couldn’t help. A doctor who he was under at the time, (over a year), told me she thought he was autistic from the group of issues he was presenting.

We were experiencing constant oppositional behaviours from our younger son and he was saying he wanted to self harm. He saw a psychologist at the Queen Elizabeth hospital who referred him to CAMHS at the same time as the boys GP referred both boys to CAMHS at Thurlow, as my older son was also trying to self harm. The CAMHS referrals got lost twice and when they were assessed by CAMHS they said the boys did not meet tier 3. I contacted Point One but they would not see the boys because they were too complex!

Our younger son has been assessed privately too, because of the NHS waiting lists and his extreme difficulties. He has been assessed numerous therapists and psychologists. The consensus was that he met the clinical diagnosis criteria for: ASD (high functioning) & Pathological Demand Avoidance. All the specialists highlighted significant attention difficulties and demand avoidant behaviours.

Our younger son’s reports went to a specialist around Feb 2014. At that time the specialist who had the report said they could not look at or assess PDA because it is not recognised in this area. With regards to the ASD – he would be referred to the CCDT, he was referred to them Feb/March 2014.

PDA – Pathological Demand Avoidance

The child of a local friend who was displaying PDA behaviours, who goes to the same GP surgery as us, was referred to the Elizabeth Newson Centre around the end of 2012. The Elizabeth Newson Centre is the recognised centre for PDA in the country. This child’s assessment was funded by the PCT because PDA assessments were not available locally. This child was assessed for PDA, diagnosed at the centre.

My GP from the same surgery was more than happy to refer our younger son to the Elizabeth Newson Centre for assessment, but he needed the specialists agreement. The specialist would not agree to this although has since put a request in to panel in February 2015. I have heard nothing since and find it hard to believe there has been no discussion or conclusion to the request in this time, five months.

It should be noted that another specialist who assessed my younger son, is also regarded as an expert in the field PDA, The Elizabeth Newson Centre (who now have a significant waiting list themselves) refer parents to the same specialist.

Looking at the NICE guidelines for the assessment of Autism it does not state anywhere that the assessments have to be carried out by different members of an autism team. One doctor states the specialist cannot do a follow up ADOS along with another S& L therapist who has not seen our younger son before although the same doctor said one further assessment is necessary to confirm the private reports.

The NICE guidelines state that a diagnostic team should:

‘consider using a diagnostic tool such as the DISCO, the ADI-R or the ADOS’

It does not state anywhere that you need an ADOS. In fact it later states that teams ‘should not rely on any autism-specific tool alone to diagnose’

The ADOS is a good, structured play-based assessment. However, the scoring is based upon the opinion and the expertise of the examiners. It is not objective. The scoring system should never be used as a yes or no for a diagnosis confirmation. It was never intended for that purpose.

So why my doctor saying our younger son needs an ADOS before they will agree with his diagnosis? He has had three separate lengthy assessments by three different highly qualified professionals all coming to the same conclusion.

It has taken over 17 months for our younger son to be anywhere near an appointment with the CCD Team with his behaviour and self -esteem going downhill rapidly and he still hadn’t been seen hence the private reports so for the team to say they aren’t good enough whilst following NICE guidelines is in my opinion unacceptable.

Doctors won’t accept the specialists assessment and diagnosis but they also wouldn’t refer our younger son to the Elizabeth Newson Centre for an assessment until I complained. PDA strategies and support are different to ASD strategies.

So, again I am having to pay for and ask a specialist and the other professionals to sign a declaration that says they assessed our son as per NICE guidelines. I was hopeful that this would have been good enough for his ASD/PDA diagnosis to be accepted, as in the case of my older son.

My main contention is that how one minute the CCD Team accept the speciliasts reports for our older son, but for his brotjer they do not, they are being inconsistent. This is unacceptable.

So, I have 2 young boys, both with significant difficulties relating to the autistic spectrum and associated areas. Everyone talks about early intervention being essential, but I have no support. I am struggling to even get diagnosis. Unfortunately, in education the school put a lot of emphasis on having an appropriate diagnosis, I would assume so they do not waste valuable resource putting in place the wrong strategies.

I just wanted to make the trust aware of how difficult the CCD Team (CCDT) are making things with regards to neurodevelopment assessments. With the waiting times being so long, as parents desperate to know how to help your child to avoid psychological issues in the future early intervention is key, but this is being denied to us as a family because as long as school do not have a firm diagnosis to work with they will avoid having to put correct PDA procedures in place, causing our younger son significant stress and anxiety.

I really hope this changes for families in the future.

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Response from Christine Little, Patient Experience Lead, Norfolk Community Health and Care NHS Trust

Hello desperate mum

Thank you for taking time to feedback your family's experience of Children's Complex Communication Team. I was sorry and saddened to hear about the difficulties you have experienced with regards to neurodevelopmental assessments and how this has impacted on family and school life. You have clearly taken time and effort to tell us your story and that there are several parts to your story that we would like to understand better and look at resolving with you.

In order for us to do this it would be very helpful if you could contact me directly on 01603 697376 so that I can investigate with the appropriate departments involved.

Kind regards

Christine Little, Patient Experience Lead

Norfolk Community Health and Care NHS Trust

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Response from The Queen Elizabeth Hospital Kings Lynn NHS Foundation Trust

I am sorry to read about the various difficulties you have experienced in accessing appropriate support and treatment for your two sons. It is not clear that as a Trust we can influence any of the decisions in this matter as these services sit elsewhere. However, I will share your comments with the Clinical Psychology Department. I hope that you will be able to find a suitable level of support for your sons in the near future.

Claire Roberts

Associate Director of Patient Experience

Tel: 01553 613459 or email: claire.roberts@qehkl.nhs.uk

Response from Tim Hunt, Integration development manager, Patient Opinion

picture of Tim Hunt

I wanted to post a response to this story from Patient Opinion. I am one of the senior moderators here at Patient Opinion and wanted to apologise particularly to the providers tagged to this feedback. There was an unusual time difference between this posting coming to us and it being published correctly on the site.

When stories are both critical and also refer to multiple services it sometimes takes a time for us to ensure they come onto the site exactly right.

So thanks to the author for sharing this feedback, and thank you for the responses from the providers above.

Best wishes


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Response from Christine Little, Patient Experience Lead, Norfolk Community Health and Care NHS Trust

Hello again

I thought it may be helpful if I updated my response with what I have learned in sharing your story with some of my colleagues in Norfolk Community Health and Care NHS Trust.

I have been looking into your story in more depth and hadn’t appreciated that has it taken time to get published, which, I understand from Tim Hunt, in his response, there were reasons for this, particularly and importantly in ensuring it was properly linked to the services with whom your story relates to and therefore being able to understand and respond to you to be of help.

My colleagues in the Paediatric team hear and acknowledge your frustration particularly regarding the complex and lengthy waiting times you and your family experienced which is unacceptable. The service is under considerable pressure because of an increase in referrals, inadequate capacity in the assessment panels and the complexities with which this is communicated with the families involved. These issues are currently being considered and under discussion with our Commissioners. Two team members will be attending the NAS PDA meeting in Peterborough which will assist in the wider aspects of PDA recognition and support thereafter.

The team also acknowledge how important diagnoses and symptom recognition are for each individual child and how this then impacts on their home life, school life and how that remains with a young person through their adult life. They want to be able to get this right which means ongoing explanation and communication is essential.

You mention in your story that you hope this changes for families in the future. It would be helpful if you were able to get in touch with me, Christine Little on 01603 697376 so that we could understand more about your story but also for your ideas of how we can help other families in the future.

Best wishes


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