The Reality of Navigating the Health Service

Warning – this is a long post!

If your child has an Autistic Spectrum Condition (ASC) navigating your way successfully through children’s health services can be time consuming, stressful and often only serves to further compound an already fraught and fragile family unit.  The process from beginning to end can take years as recently highlighted by the National Autistic Society’s Campaign. http://www.autism.org.uk/get-involved/media-centre/news/campaign-success.aspx.

It would appear that a complete and total systematic failure of the services involved play a pivotal role in this process.

Government cuts may be a contributory factor to waiting times but it may also be the case that the process itself combined with the lack of experience and knowledge of many NHS clinicians and their aversion to assess and diagnose ASC may also play a major role in the shocking statistics.  If the process for assessing and diagnosing a typical presentation of ASC is so poor, then just imagine how much more difficult this process is for parents of children who show an atypical presentation of ASC i.e. those with the female or PDA profile.

The issues often start right at the beginning of the process when parents are trying to secure support and understanding as to what may be causing their child’s mental health issues and very often the subsequent challenging behaviour.  During this period many parents may have little knowledge of ASC and are looking to professionals to help and to support them, oblivious as to why their child is experiencing such extreme difficulties.

Child and Adolescent Mental Health Services (CAMHS) – accessing a referral

Often the first port of call, for many parents, will be to visit their GP with the hope of obtaining a referral to CAMHS, (if you already suspect your child to have ASC try to bypass CAMHS and ask for a referral to a Paediatrician, local ASC diagnostic team or Child Development Centre (CDC)).  You would imagine that this should be a straight forward process but sadly this is very often not the case.

Because the underpinning ASC may often cause challenging behaviour and mental health issues which are often wrongly attributed to poor parenting by professionals, this often leaves parents feeling unfairly judged, defensive and only serves to prolong the whole diagnostic process with many requests for a referral not being accepted.

This is often compounded ever further when parents are felt forced to attend parenting courses prior to any further support or action being taken.

‘It took us numerous referrals from various professionals and a total of 5 years and four refusals before our referral was accepted and we could access any services at all.’ Stella

‘My child was spending less time in school because he was in a terrible state. Attendance tailed off to almost nothing by February 2015. It had been 5 months since the GP referral to CAMHS so I called them to find out how much longer. They told me that the referral had been rejected. Imagine how that cut through me! My poor son was going through agony. He’d made suicide threats, death threats, could no longer sleep without me in the room with him. All along I was promising help was on its way. I went back to the GP and got a copy of the letter from CAMHS which used the phrase ‘inappropriate referral’. Cutting a very long story short CAMHS went on to reject a second GP referral and another one from an adult mental health nurse (again ‘inappropriate referrals). I just cannot imagine what this service does consider to be a bona fide referral if my son’s case isn’t.’ Steph

 ‘Every referral that went into CAMHS was always met with the same outcome, (sorry, no we can’t offer you a service) it’s the parenting that is the problem. By June 2015 my eldest daughter had taken an overdose of paracetamol, finally the crisis intervention team from CAMHS came to assess her while she lay hooked up to wires in a hospital bed having her organs flushed out … and still they would not offer her a service! They said she presented as if she had no mental health issues!’ Jillian

‘The GP made the referral to CAMHS but it was turned down as she never reached the criteria. I had to virtually beg on the phone to be seen. Once seen I was fobbed off again by the mental health staff and basically made to feel it’s a parenting issue. but I refused to be discharged and insisted that she had to be seen by more experienced professionals.’ Marie

 ‘Prior to my first appointment at CAMHS I had already had to attend two ‘Triple P’ parenting courses and when my first appointment at CAMHS finally arrived I was advised to do it again!’ Jo

‘Both of my children are now diagnosed with ASC, my son is diagnosed with Asperger’s and my daughter is diagnosed with PDA.  Prior to diagnosis I spent years in the system getting nowhere fast and eventually paid for private assessments.  This process was not helped at all by the obligatory parenting courses that I had to attend twice before any support could be accessed at all.  In my opinion this is a waste of time and precious resources. Surely services should be able to use some common sense and personal judgment as to who these courses may or may not be suitable for’ my story

CAMHS – waiting times

For many parents who do manage to secure an appointment at CAMHS, the waiting times due to Government cuts can be horrendous. These waiting times are often on the back of months if not years of trying to secure the referral in the first place!

‘My son was referred to CAMHS in December 2013 was seen for an initial appointment at CAMHS in March 2014 and his assessment was on 1st February 2016!!!!!! He has further assessments to have, all of which we are still awaiting appointments for. My boy needs help and is still waiting – over a 1/4 of his life already waiting and still more ahead of him.’ Sarah

CAMHS – the service

When the appointment finally arrives parents may be feeling hopeful that they are finally on a diagnostic pathway and that they will soon find out the underlying cause for their child’s difficulties and be able to secure the necessary diagnosis and support. This hope is often very short lived and parents are often, yet again, left feeling deeply deflated because it is often the case that the primary focus is to blame the parents for the difficulties that their child is experiencing.

‘The Paediatrician recommended involvement with the local children’s’ services and enhanced mainstream services. This is where things got difficult. The various people we saw were very clear that what we were going through was because we were poor parents, any information we gave was twisted and they believed we were lying. We were sent on a parenting course through CAMHS which was presented as being very positive. When we asked for advice because the methods were making things worse at home, they were impatient that we weren’t following it correctly. I dropped out of the course after a few weeks mainly for financial reasons, but also because I couldn’t bear the unhelpful judgements from the very people who were supposed to be able to pick apart my son’s behaviour in order to identify what was going on.’ Heidi 

Many CAMHS services do not seem to understand the importance of identifying the true underlying cause of the child’s issues but instead focus on attempting to treat the end result only i.e. mental health issues and challenging behaviour. For many parents this means that their child becomes stuck on the CAMHS hamster wheel, going round and round in circles but getting nowhere fast. Surely it is common sense to discover first and foremost what is perpetuating the difficulties in order to use the most appropriate strategies for the resulting mental health issues and any challenging behaviour.

‘During my first appointment at CAMHS, for my daughter, I was told within five minutes that there were no signs of ASC.  The possibility of ASC had been queried by her school and the ASC inclusion team but they ignored this possibility out of hand. During the subsequent months of me following their advice, even though I had already tried those same recommendations on countless occasions, I started to ask for assessments to be carried out to determine the underlying cause.  I was told that they didn’t believe in labelling and preferred to simply work with the child.  They never referred her on for an assessment by the ASC diagnostic team and my referral eventually came from her Educational Psychologist’ My story

‘My daughter is 13 now and has had 6 x 1 sessions with CAMHS when she was around 8 years of age, it was spent drawing pictures and talking about which path she needed to take, at the last session she started kicking and punching me because she didn’t want to be there. We were discharged the same day even though the therapist had witnessed it all. My girl has been struggling for eight years now and CAMHS have been no help whatsoever.’ Christine

By this stage some parents may have already done considerable research into ASC believing that this may be the route cause for their child’s difficulties.  But, the concentration of appropriate support and help may still continue to focus on parenting rather than taking the parent’s concerns of a possible underlying ASC seriously.

When they did finally accept the referral, they did nothing to assess my child. They asked ‘how did I feel when he was born?’ and ‘did I spend time playing with him?’ and other such rubbish. I did nothing but play with him, and had given lots of clear evidence of autistic traits, social communication problems, social interaction problems and other evidence and yet all this was ignored. They continued to be obsessed with ‘parenting’ problems and actually put me in a room with a 2-way mirror to observe how I interacted with my son. It was horrific, and the subsequent delay in diagnosis caused huge distress and further mental health problems for my son, who had been punished for years, day in day out, for behaviour he could not help, as he was seen as ‘naughty’ rather than autistic.Annette

‘Prior to my first appointment at CAMHS I had supplied them with clear and concise evidence of how my daughter presented with ASC/PDA.  This evidence was simply dismissed and brushed to one side. No diagnostic assessment was offered and I was told that PDA would not be looked at in any way shape or form.  The clinician went on to inform me that the Psychiatric Services had even refused to see a child with PDA in the past.  This was interesting to the parent supporting me whose child did have a diagnosis of PDA because her child was the one that was being referred to.  Following her child’s diagnosis of PDA her daughter had been systematically discharged from all services. We had hoped that things may have changed during the five year interim but sadly this did not appear to be the case’ Lisa

Surely, the most time saving and cost effective approach would be to listen to parent’s concerns and the evidence that they can bring to the table re how their child fits the profile for ASC.  Or, in the case of those parents who are still unaware of what the route cause may be, first and foremost use a screening tool to ascertain if an assessment for ASC would be deemed appropriate for the child concerned.

For a physical ailment or disability individuals would be quickly assessed in order to identify the issue and to signpost the professionals involved to the most appropriate treatment. But, for some reason, when the issue is seen as a mental health issue clinicians appear reluctant to find out the underlying cause or to refer the child on to the appropriate diagnostic team. Instead parents can often feel vilified for wanting to unnecessarily label their children.

No, we don’t want to label our children we simply want our child to be correctly assessed and diagnosed in order to access the correct package of support.  Because, until the underpinning issue is correctly diagnosed and appropriate support, strategies and understanding applied are any positive and long term results likely to be achieved. Also, we do not want our children’s diagnosis to be downgraded to the over used term of a label.  ASC is not a label it is the diagnosis of a neurological condition.

Although many CAMHS units are unable to assess and diagnose ASC they are often part of the diagnostic pathway.  Because the cause of the child’s issues may often be unclear at the beginning of the journey this is where many children are initially referred to.  CAMHS clinicians need to better trained at recognising the signs of ASC in children, including the atypical presentation that females on the spectrum and individuals with PDA present with, so that they can be quickly identified and assessed by the appropriate services.

ASC Assessment

Finally, sometimes following years of being stuck in the CAMHS hamster wheel parents may eventually win the battle for a referral to an ASC diagnostic team.  This is when, with horror, many may realise that the inexperience of many clinicians, within this field, may be contributing to many children falling through the diagnostic net. Clinicians may be fixated on the traditional male profile and not be aware of the many ways that ASC can present.  In particular females and those who present with the Pathological Demand Avoidance profile are greatly under diagnosed due to their atypical presentation of ASC.

‘I was personally astonished at the lack of awareness and insight from clinicians during the assessment of one of my children.  Absolutely no allowances were made for age, intellect, upbringing, learned coping strategies or the ability of some children to mask their difficulties. Many of which should be accounted for as specified in the NICE guidelines. Because of the many years that I had spent helping my child with his issues he was no longer presenting in the same manner that he had been when he was five years old. Due to this he was not diagnosed and so his past presentation was clearly not taken into account for the assessment. It was as if my child needed to present with a Classic Autism profile i.e. non-verbal with no friends at all and no ability to communicate with others before an acknowledgment of ASC would be considered. He has since been diagnosed with Asperger’s by, in my opinion, a vastly more experienced clinician.  It is a great shame that a diagnosis took 14 years to secure and had to be privately funded by me’ My Story

It would appear that I am not alone in my experiences with my local ASC diagnostic service. https://www.patientopinion.org.uk/services/rly_711

‘When we got home, we found that each section of the report was in three parts – ADOS, school observation and our interview. In every section, the ADOS and our part showed that he had ASD. The school observation left out all the things we were told. He didn’t get a diagnosis based purely on how he masks (and it really is masking!) at school. They completely disregarded our interview and his ADOS assessment. I had a follow up appointment a couple of weeks later, I went armed with information about masking in school, but wasn’t given a chance to speak. The ASD co-ordinator ripped shreds out of our parenting, told us it was because he didn’t get enough attention at home (he had all the attention!), said my husband and I should be tackling his behaviour together instead of taking it in turns – we did this so we could see our other children, and also to make sure we didn’t get to a point where we couldn’t cope – constantly dealing with this behaviour is, as you’ll know, very hard. The whole thing was devastating. We then arranged to see Jo Jones and Judy Eaton privately. We sent all the reports that we had, including a long OT report that the CDC had ignored. My son was diagnosed with high functioning autism, pathological demand avoidance, sensory processing disorder and had ADHD traits. I took these reports to the NHS Paediatrician, who rolled his eyes and seemed offended that we’d gone behind their backs. However, when he and the NHS Psychiatrist looked back on my son’s reports, he sent a letter saying they were accepting the diagnosis and it looked like they gave too much prominence to his school obs.’ Heidi

Post Diagnosis

Following diagnosis many parents are simply given a diagnostic report and sent on their way.  Some services may offer an ASC course but very often any post diagnosis support is extremely thin on the ground.

Once a child is diagnosed with ASC the difficulties do not end there due to the many mental health issues that an individual with ASC can experience. Some CAMHS services simply refuse to offer any support citing that their services are not for children with ASC because that is not their field of expertise.

Other services may attempt to support the mental health issues and challenging behaviour that can result from ASC but are simply lacking in the experience and skills to adequately do this. In some cases, even with an ASC diagnosis, CAMHS continue to blame the parents.

‘We were referred to CAMHS in 2014 as we were concerned for his mental health. During stressful periods he begs us (his parents) to kill him, he draws very graphic pictures of his death, explains how he will only be happy when he’s dead and has a few times put things round his neck showing us how he is going to kill himself. We have had this behaviour since he was 6. We have to keep all knives locked away because he will use them to threaten us. The therapist we saw was very dismissive of this and told us it was just words and was typical for a child on the spectrum, no advice at all for dealing with these episodes. I completed a questionnaire which showed my child to be very anxious.  We were then discharged as they would not accept a child on the ASD diagnosis pathway.’ Heidi

‘A year ago in January 2015 we were referred back to CAMHS again as my son had massive anxiety problems related to his PDA, and also had grabbed a carving knife and held it to his neck wanting to die. He was 8 years old and I had to wrestle a knife out of his hands. We were eventually allocated a ‘case worker’ who refused to read any notes or history, didn’t believe in PDA and clearly suspected me of causing my son’s problems as he wanted to see my son alone, which I agreed to as I felt if I didn’t, I might be seen as being obstructive and hiding something.’ Annette

‘Following his diagnosis, he was again referred to CAMHS as we still had the same issues – suicidal thoughts, threats to kill himself, begging us to kill him as he hates himself.  My husband and I were asked to attend a session without our son.  During this session, we both felt very uncomfortable as the therapist kept trying to catch us out and twist the difficulties our son was having onto us and our parenting. She was also very dismissive of PDA, even though we were very clear that for our son, his primary diagnosis is autism, the PDA part is very useful in terms of describing the best strategies for him. When he goes through anxious phases (which he does very regularly), PDA strategies are the only ones that work and help to bring him back down from a state of almost constant meltdown. It was a very strange session, and we both came out feeling very uneasy, and with the feeling that she was trying to blame us, which was horrible as we are trying our best to help our son.’ Heidi

‘An Educational Psychologist from the council then visited us twice. She was a blessing. She assessed my son for Autism and for PDA for which he scored highly and she passed her assessment as a referral to CAMHS who finally, a year on from the GP, accepted him onto their waiting list (August 2015). In November 2015 I phoned to enquire if there was an appointment in the pipeline and they told me it would be at least 12 months. So here we are in February 2016. 18 months since crying desperately for help NOTHING has happened. I give my son magnesium supplements as I’ve read it helps with anxiety. He hardly ever leaves the house and hides when people come round. The CAMHS therapist is due to ring me in a week or so, my intention is to let go of the service, as they have not been in any way helpful, have not been able to offer any advice, and I feel that further involvement will be very negative to the family. Steph

‘My son has been referred to CAMHS twice and turned away both times because they say that his issues are caused by his ASC which is not a mental health problem so they cannot work with him. The first time he was seven and was skin picking, it was quite extreme and he was writing his name in his blood on the wall. He was passed on to clinical psychology and they did actually take him on and said it was sensory rather than anything worrying so that wasn’t much of an issue.’ Sophie

Suggestions of how to improve this current state of affairs

  • Parents reporting difficulties with their child to a GP should immediately be referred to CAMHS or, in the case of ASC already being suspected, to a Paediatrician with a view to refer onto the relevant diagnostic service.
  • CAMHS could suggest a parenting course, if they feel that the parents would benefit from it, but should simultaneously begin the process of investigating what the underlying cause for the child’s difficulties may be. A parenting course should be optional and not something that parents are forced to do prior to moving any further on in the process.
  • CAMHS need to be trained in early identification of ASC, the different ways that it may present and the mental health issues that can indicate an underlying ASC E.G. eating disorders may often be a symptom of an underlying ASC, especially, but not exclusively, in females.
  • If ASC is suspected the child should be immediately referred to an appropriate diagnostic service.
  • All ASC diagnostic services need to be trained in the many ways that ASC can present and how these presentations can change over time due to intellect, upbringing and personality. Also, for training to be ongoing so that clinicians are fully aware of recent research.
  • CAMHS clinicians should be trained in appropriate and suitable methods to support a child post diagnosis for any mental health issues or challenging behaviour that are as a result of the child’s ASC.

Money spent on training and assessments should be more than compensated for by not rolling out parenting courses to every parent, by quickly and efficiently identifying children with a possible ASC so that they aren’t stuck in the CAMHS system for years and successful early intervention can save money in the long term because with the correct support individuals may require less intervention as they grow older.

Any system that is smooth, efficient, flexible and experienced will always be cost effective in the long term.  Cost cutting in the early days is quite simply ‘false economy’ and fails to take into account the bigger picture.

Thank you to all of the parents that have shared their stories in the hope that it may help others. I think that I will leave the final word of this post to Annette.

‘I have now put in yet another formal complaint and expect a response by 26th February 2016. I will no longer tolerate being treated like rubbish by ignorant professionals, it’s about time they did their jobs properly, opened their minds, learned about PDA and stopped failing our children.’ Annette

For more information about PDA please visit The PDA Society and The PDA Resource

 

 

 

 

 

Advertisements

About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 6. The Reality of Navigating Services, Uncategorized and tagged , , , , , , . Bookmark the permalink.

9 Responses to The Reality of Navigating the Health Service

  1. l8in says:

    Reblogged this on L8in.

    Like

  2. Kerry S. says:

    This is heart breaking. We were also stuck in the system for months on end but we were at least referred to an MDA team consisting of a Paediatrician, Speech and Language Therapist and Clinical Psychologist in the first instance. It still took a year from initial referral to secure an ASD diagnosis but, in comparison to so many other families, I now see that my son was assessed relatively quickly – though it certainly didn’t feel that way at the time. Diagnosis of ASD was where NHS involvement of any tangibility ended, of course. Two diagnoses followed: SPD and PDA but both were obtained privately because the NHS are not interested in, or cannot afford, differential diagnoses.

    Our son’s PDA diagnosis initially came from an Independent Psychologist but has since been confirmed by an independent SLT, independent OT and specialist teachers in a high profile specialist education setting. The NHS paediatrician accepts and agrees with the PDA diagnosis but still claimed to not be able to ‘make it official’ (absolute nonsense by the way) without the input of CAMHS. We were offered a referral to CAMHS and we turned it down. My actual response to the consultant offering the referral was, “If CAMHS are going to try turning this into ODD or Attachment Disorder then CAMHS can take a running jump!” What I MUST stress, however, is that we had already secured appropriate educational provision through the tribunal process in a PDA-friendly setting and so didn’t actually ‘need’ any clinical opinion from CAMHS. I suspect that they would have simply added unnecessary stress to our lives.

    I know that Asperger’s no longer exists in the DSM (5th Ed.) but it had only just been removed at the time of our son’s ASD diagnosis. The reason I mention this is because our NHS Trust had some arbitrary rule of not diagnosing any child with Asperger’s under the age of 8! And my son’s Clinical Psychologist in the original NHS MDA team later admitted to me that they’d “been missing girls for years.” The entire system is in a shocking state. My own family have really been put through the mill, diagnostically and educationally speaking, yet I consider us to be amongst the ‘lucky ones’.

    (Sorry for the long comment.) Xx

    Like

    • janesherwin says:

      Thank you for your comment Kerry, and for sharing your story. Any comments like this are gratefully received because it all adds validity to the post. I am glad that you finally got the correct and suitable diagnosis for your child. However, it seems like you were let down by the NHS because you had to do so much via the private route and go through the tribunal process for a suitable provision. It really shouldn’t be this hard should it?

      Like

      • Kerry S. says:

        No, it really shouldn’t be this hard. And as we know, obtaining a meaningful diagnosis turns out to be just the first of many difficult battles – all at enormous emotional and financial cost.

        Thank you for collating and publishing these stories Jane. Reblogging.

        Like

  3. Jane says:

    Our first boy took 2 years to diagnose, the dreaded parenting course inbetween made things worse and no one made any useful suggestions in that time. Finally , after diagnosis ( my son by this time was no longer attending school due to lack of support..he was 6) we were offered a course about ASC..which I couldn’t attend because I didn’t have childcare. Nothing further was ever offered and everything that has helped my son, came about by me reading everything I could lay my hands on.

    When his brother started the diagnostic process at 6 , he was batted between CAMHS and the ASC Team for over a year whilst they argued who was best to see him. At no point did anyone actually see him in person. After complaining and over a two year wait he was assessed. There was again much parental blame flung at us and now being more clued up, I was quite astounded by the out of date opinions regarding ASC that were being flung around. We knew arguing was futile when our son was said to not have ASC and walked away from services once and for all. It was too soul destroying. We saved for a long time for a private diagnosis , OT support and worked our way through things alone, which was exhausting. Last year, 4 years later a private clinician and psychologist confirmed our suspicions and he was diagnosed with ASC/PDA and severe ADHD. They were stunned he had been ‘missed’ all this time and we could now make moves towards treatment …we had been managing things ourselves since he was a toddler anyway. However, we still face opposition locally for funding our own assessment….it’s definitely been frowned upon that we took matters into our own hands. We will continue to help our children the best way we can , which currently means educating them at home because there are no suitable school placements or services we can access locally.

    Like

    • janesherwin says:

      Thank you for your comments Jane. Your story sounds so very similar to mine. Following Mollie’s private diagnosis I was shunned from services and clinicians refused to see us for approx 2 years, until I accused them of gross neglect in their duty of care. My son was completely missed and again I had to pay for a private assessment following a very inept NHS one. Yes it is rather disconcerting isn’t it when you are clued up and realise that your own knowledge is now vastly superior to theirs. Education is another huge issue for our children also and will be the focus of a future post. Many thanks again for sharing your story xx

      Like

  4. Kerry S. says:

    Reblogged this on Aspernauts and commented:
    I’ve mentioned fellow WordPresser Jane Sherwin on this blog before. She is a high profile parent-advocate who writes from a very personal perspective about the realities of living in the bubble of PDA (Pathological Demand Avoidance Syndrome). Other parents have added their voices to hers and she shares some of their shocking stories of the long road to (non) diagnosis here:

    Like

  5. healthwatchstoke says:

    Great work.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s