Autism Diagnoses for Children in North Somerset

There remain excessive delays in getting an autism diagnosis in North Somerset.

We have done some extensive research and analysis into this over the last 18 months and, despite what you might be being told, these delays are not specifically down to a lack of funding.

The first thing any parent seeking an autism assessment of their child should know about are the NICE guidelines (CG128): https://www.nice.org.uk/guidance/cg128/chapter/1-Guidance

These are quite short and easy to read – thankfully, not too full of jargon and gobbledygook.

You should know that Weston Area Health Trust (WAHT), who carry out these assessments, have a contractual obligation with North Somerset Clinical Commissioning Group (CCG) to comply with the NICE guidelines.

The first thing to note (CG128, 1.1.8) is that WAHT are obliged to provide a single point of entry system. This actually means the opposite of what it might initially suggest. It doesn’t mean there is only one pathway for getting a referral. It means that in order to get a referral you/your child only need to enter the health system once.

On a practical level, pretty much any professional involved in your child’s care – speech therapist, GP, health visitor, teacher/SENCO, educational psychologist, occupational therapist – can (and should) make the referral. The ‘single point of entry’ means you can be referred by a professional you are already seeing – you don’t have to see someone else specially to get a referral.

The second thing to note (CG128, 1.3) is that referrals should be made directly to the autism team (which in North Somerset is called SCAMP), and not to a paediatrician first.

The only referrals that should first go to a paediatrician are covered by CG128, 1.3.2:

1.3.2  Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:

  • older than 3 years with regression in language
  • of any age with regression in motor skills.

Professionals should consider referring to the autism team if they are concerned about a child’s possible autism. At this stage the concern only needs to be about ‘possible’ autism, the evidence does not need to be overwhelming, and the autism team (SCAMP) are supposed to provide guidance to professionals with such concerns.

Note that ‘parental concern’ should be a sufficient reason for referral. Your GP or other health professional does not have to agree with you. If you are sufficiently concerned they have a professional obligation to refer your child.

It really is worth reading all of GC 128 section 1.3 (https://goo.gl/YS6nNX) as this explains many of the criteria that warrant a referral and that a negative score using certain tools does not rule out a diagnosis.

This section of the NICE guidelines also explains the information the referring professional should include in their referral. It might involve them in a bit of extra work (see 1.3.6 and 1.3.7), which they might be reluctant to undertake. It might be expedient for you to gather all this information yourself and give it to whomever is going to make the referral.

‘Signs and symptoms’ template forms are available online but the SCAMP team have their own forms and you can obtain these directly.

You might have trouble getting through to the SCAMP team. If so, I suggest you email Children’s Services at Drove Road – wnt-tr.childservicesdroveroad@nhs.net – marking your email in the subject line FAO SCAMP Administrator.

Don’t be fobbed off if anyone tries to tell you these forms are not meant to be released to the public. If you get any grief then call PALS on 0117 947 4477 or 0800 073 0907 and ask them to help out. Sarah Jenkins at PALS is an exceptionally helpful and approachable person.

It is key that whoever makes the referral includes all the information requested, even if you have to gather it together yourself. Without it you might find you’ve been waiting a long time only to be asked later on for more info before a decision can be made. Then, if you don’t get shoved to the back of the queue, you will at least get moved down the list.

Now, this is the important bit:

The referral should be made directly to the autism team, and not to ‘Community Paediatrics’.

Currently, 100% of autism assessment referrals in North Somerset are being made via Community Paediatrics. This is a system imposed on GPs et al by WAHT but is in violation of the NICE guidelines, which they are legally obliged to follow.

They will come up with all sorts of crap excuses (please forgive my language) as to why the referral should first go to Community Paediatrics. The only instances when an autism assessment referral should not go directly to SCAMP are set out in CG 128 1.3.2 and 1.3.4. These are very limited criteria and nearly all referrals should be going directly to the autism team, i.e. SCAMP.

The reason why WAHT try to route all the referrals through Community Paediatrics is to keep you/your child off the waiting list. It takes 6 months or more to go through the Community Paediatrics’ process before they make the referral to SCAMP. It will take even longer if you don’t keep badgering them about the delays.

The real scandal is that two Consultant Paediatrician appointments are wasted. They are completely unnecessary for a referral to be made to SCAMP and they do not form part of the ultimate assessment (even if WAHT claim they do). Consultant Paediatricians can no longer make a diagnosis alone, it has to be multi-professional. This means two or more medical professionals decide upon the diagnosis between them.

If a Consultant Paediatrician appointment is necessary as part of your child’s assessment they will be given (another) one during their formal assessment. Not every assessment strictly requires a Consultant Paediatrician to be involved; a diagnosis, for example, could be made by an educational psychologist and speech therapist together.

It would be far better if WAHT allocated all this paediatrician time to actual assessments and worked their way through the backlog.

You should also note, that CG128, 1.5.1 says:

“Start the autism diagnostic assessment within 3 months of the referral to the autism team.”

WAHT have an internal target of 18 weeks, which is over 4 months. 3 months is 13 weeks.

Nevertheless, the current wait is far, far longer than either 13 or 18 weeks.

Again, you will be fobbed off with the usual excuses about lack of resource (not true), higher than expected demand (they have no idea what the demand should be, so this is a made up excuse) or a lack of paediatricians.

This last excuse is bunkum too. Indeed, diagnoses for autism can be made without paediatricians, but there are plenty around if they are made an attractive work offer.

For example, you can get your child assessed privately for around £2,000. You can self-refer and your assessment would completed (not just started) within a month.

The local education authority (the people who fund special educational needs) will accept a private diagnosis. This is their position:

We have to recognise a diagnosis if it is made by a suitably qualified professional and done using agreed criteria (ICD-10 or DSM 5 are the NICE approved). We would want diagnosis to be done multi-professionally and even if it is done uni-professionally it should take into account evidence from a variety of sources to have validity.

A £2,000 private sector diagnosis would be multi-professional.

Now, I know using private providers in the NHS is controversial and I am not taking a view one way or the other here. What I am trying to highlight is that autism assessments can be carried out really very promptly and for modest costs – as well as being NICE compliant.

There is absolutely no need for the NHS to make such a complicated mess of things. If it really can’t recruit the people it needs, then I suppose it could always sub-contract out some of these assessments, if only to clear the backlog.

Whatever the excuses, it is the NHS’s obligation to start the assessment within 13 weeks of referral. It is for them to resolve any problems they have with this, and it is inappropriate if they try to make it your problem too.

You should keep up the pressure on them and keep referring back to the NICE guidelines to remind them of their obligations and the procedures they should (but aren’t) following.

In North Somerset we have something called the SCAMP Panel. This is a completely unnecessary gathering of the great and the good who will rule on whether your child gets assessed and then decide upon the diagnosis.

The problem we have is this panel meets just once a month and limits itself to considering no more than 10 cases at a time. They receive more than 10 referrals each month, so the waiting list just grows and grows.

The primary purpose of this panel is to decide whether or not to assess each individual child who has been referred. But, all that the NICE guidelines require is that only one member of the autism team (not the whole lot of them together) makes the decision whether to carry out an autism diagnostic assessment and/or an alternative assessment.

We have no doubt that better decisions are made when more than one person is making them. However, this matter needs approaching with some realism. Surely it is better that the occasional child undergoes a diagnostic assessment and is found not to be autistic, than all our children are kept waiting months, maybe even a year or more, for a diagnosis essential to getting the educational, healthcare and social care support and provision they need.

Let’s face it, in a majority of cases we know, as do others involved in our child’s care, that they are likely on the spectrum. That’s why we’re seeking an assessment in the first place, as we need formal confirmation to get our child the support they need. We don’t want to belittle the importance of clinical rigour but we also need to be practical. 90% of the children referred to SCAMP are (ultimately, after an excruciatingly long wait) accepted for assessment and nearly all these receive a positive diagnosis. It would, actually, be more efficient simply to assess everyone who is referred. That would be a technical violation of the NICE Guidelines but it brings into perspective the way deciding upon assessment should be approached.

Certainly, there is absolutely no need in the entire autism team making these decisions. It is a huge waste of time and resource. Many of the professionals attending these ‘panel’ meetings could be carrying out an additional autism assessment that afternoon instead.

Bingo! At no extra cost we are conducting another 4 or 5 assessments each month. That alone would increase the average diagnostic rate by 50%! Yes, a staggering 50%.

Add in all those Consultant Paediatrician appointments freed up by avoiding the wasteful and needless detour through Community Paediatrics and our waiting list will start to reduce very quickly.

The shameful thing is that WAHT know about this but continue to operate in this inefficient and costly way. It benefits no one. It wastes money and it pointlessly keeps children from a much needed diagnosis.

Anyone experiencing any delay beyond the 13 weeks from referral to start of assessment (please note ‘acceptance for assessment by SCAMP Panel’ plays no part in this wait and cannot be used to justify extending this 13 week limit), or anyone being faffed about in getting their referral to the autism team directly is urged to lodge a formal complaint.

ALL complaints should be made to our CCG: https://www.northsomersetccg.nhs.uk/contact-us/making-complaint/

The CCG will pass your complaint on to WAHT for them to respond to. But, if you complain directly to WAHT, or SCAMP itself, then the CCG will never find out about it. The CCG are the people who pay for this lousy service and they need to know just how bad it is and just how irate parents are. If only a few complaints reach the CCG then they fail to appreciate just how bad things are.