I could write forever and ever about the flaws in the services available to our children with additional needs, and I feel very strongly about the matter as many a professional has had me on the end of their phone, telling them the flaws of their service, probably while they call me all the swear words under the sun (actually I would bet my last pound that this is true). I am sure that in comparison to other families, I have been fighting the battle for services for quite a short time, but we all fight hard for what our children need and moreover, what they deserve. I speak from my experience of services I have fought for my little monkey who is non verbal and has Autistic Spectrum Disorder. I will draw on my own experiences and appreciate that my experiences do not reflect that of everyone, however from talking to a range of people over time I realise that many parents and carers feel that services are lacking, and very slow to receive from the point of referral.
In August 2015, the National Autistic Society (NAS) launched a campaign to put an end to the long NHS waiting times for diagnosing Autism. Waiting for a diagnosis is torture, it is difficult enough to get a referral for specialist support and I feel that all too often, parents are treated as though they are being paranoid about the need to see a paediatrician. We were fairly fortunate in this area if I am honest, but still the wait was months when in actual fact it should only have been weeks. In March 2015 I visited the health visitor’s drop in clinic to ask about Noah’s lack of speech, I was convinced it was a hearing issue as he suffers terribly with ear infections over the winter. Thankfully, our health visitor is fantastic and asked all the right questions and explored all areas of his development in great detail. I walked into that appointment concerned that Noah may have glue ear, or similar, and I left considering the real possibility that he may be on the Autistic Spectrum. She suggested we started with a hearing check.
By the end of April, his hearing had been assessed and we completed some additional development forms and endless questionnaires to support the referral to the paediatrician. Now, here is where we had our first minor hurdle, the GP was required to refer to the paediatrician, initially they refused on the basis that Noah was ‘too young’ to be assessed for a developmental disorder. After a rather cross phone call from me demanding they reconsider, they sent the referral to the paediatrician which was returned to the GP stating that there was paperwork missing from the referral, it was in fact on the doctor’s system but had not been correctly attached. Third attempt, the referral was sent and in June, I received an appointment, for September. This put the wait time at 6 months before we had even sat down with the paediatrician.
This is half the difficulty, the fight for an appointment in the first place is too tough and takes a long time, only to get the appointment for a few months time. Paediatric services are stretched and certainly in our area, there is a long wait to actually see someone. The National Autistic Society have made good progress in addressing these issues, and have made commitments to continue to do so. The following is taken from their website:
Our campaigners gathered outside Parliament, which prompted over 500 people to respond to the Government consultation on NHS priorities urging Jeremy Hunt to make autism a priority.
Our campaigning pushed the Government and NHS to tackle some of the obstacles preventing timely autism diagnosis, in significant ways.
Thanks to you, for the first time ever the NHS will start to measure the number of people diagnosed with autism in every area of England.
This is a game-changing development for the future of influencing autism policy. The data can play a vital role in getting waiting times down. Because it shows how many autistic people there are in a given area, so that services can be planned and budgeted for.
I can’t help but feel that if services were available as soon as they were required, we would have the advantage of early help for our children with additional needs. Noah was diagnosed formally in December, and I know that many, many other families are still fighting for their diagnosis after years of battling with the NHS and support services. I accept that our wait was short in comparison to others, but still too long.
The one positive for our boy is that he has a specialist Autism teacher assigned to him, she comes both to our home and to his nursery and works with him to achieve his developmental milestones that he is behind on and encourages a positive learning environment. The service is fantastic, but funding only allows for her to come for 1 hour every 2 weeks. The support she offers is fantastic, but not enough, her team is over stretched and unable to offer more support to the children on their caseload.
The whole process of accessing support services for your child is a battle, a war that you will always fight, you will always be passionate about, and you will always put yourself on the back burner. It really is disgusting that in 2016, there are children with undiagnosed developmental disorders, children with little or no verbal communication and no support for these needs. Drawing on my own experience, I raised concerns about Noah’s speech in March 2015, we are a week off it being 1 full year since I took my little boy to see a professional worried that he could not speak.
More needs to be done. Our children need to be diagnosed sooner, and have the opportunity to access the services they require.