This final part (well I may upload the postscript..). This says it all really…..
‘HOWEVER, ALL WAS NOT WHAT IT SEEMED. What the Finance Group (MARG) did next, even the most hardened SEN Warriors will struggle to believe.’
Earlier parts of the book can be found here.
Chapter 6 Is It Really For Support?
We had been referred to Children’s Services once before. Three years previously. For help. For support.
My experience has led me to believe that ‘providing support that is appropriately helpful’ is not what Children’s Services do in situations like ours. We don’t fit into their system. We are not a safeguarding problem, nor do we meet the criteria necessary for us to be supported by the Children with Disabilities team.
We were slotted into the safeguarding section of Children’s Services. We were assessed and judgements were made as to whether or not there was a ‘safeguarding issue’. There was no empathy demonstrated, just nice clean assessments. The trouble, in our case, was that the Social Worker didn’t have the knowledge of ASD, SEN, or paediatric mental health to make meaningful assessments. I believe that some support or mentoring from the Children with Disabilities team was sought by her manager at one point but this never seemed to materialise. Without that mentoring, I felt that her judgements might be based on ignorance and a lack of awareness. I just needed help, someone in our corner.
I didn’t need to be ‘assessed’. I was exhausted, stressed and desperate for support.
I complied with everything. Except for one thing: her desire to assess my mental health herself: a newly qualified Social Worker. I was more than happy to arrange for my GP to do that and I let our Social Worker know I had raised the possibility with my GP.
I had sinned. I had not ‘complied with the Social Worker / Children’s Services’ and word spread like wild fire. ‘Education’ seemed to lap it up; Peter’s funding was at risk because I was not ‘complying with Children’s Services’. CAMHS staff were informed that I was not ‘complying with Children’s Services’ and, I think, believed that Peter’s education could be in jeopardy as a result.
I had accommodated endless visits, tolerated intrusive questions, got my head around the involvement of five Children’s Service’s staff, shrugged off ridiculous, ignorant, statements and had my personal information shared around like confetti. And all at a time when the demands on me were extreme.
The involvement of Children’s Services made everything far more stressful and cost me valuable time away from my children.
I think the role of the Social Worker, the purpose of her involvement, was confused. There seems to be just one process of assessment that we had to be subjected to. This process was all about safeguarding. The conclusions of this assessment were the same as the previous one: there were no safeguarding issues. Of course there weren’t! That wasn’t the purpose of either referral. We needed support.
The referral to Children’s Services was requested by the NHS commissioners, in case their involvement was needed to support discharge from hospital. At the end of the process and, on reflection, our social worker concluded that she felt her role had been as an advocate for Peter. I think, with hindsight, she too wondered what her involvement had all been about. She had certainly worked hard to understand the recommendations of his inpatient assessment and had made the effort to visit the team and Peter, whilst he was in hospital. This was despite her manager making it clear, during our first meeting of professionals, that she did not think this was necessary. Our Social Worker was also the one that took the initiative to arrange the multi-agency meetings locally. I appreciated this but there is no question that this very difficult period would have been easier without the involvement of ‘Children’s Services’.
I believe the social worker allocated to us wanted to do a good job. I think that if she was in a service that was managed differently she would have been able to help more. Neither we nor our social worker stood a chance of it working.
On June 24th Peter’s third discharge CPA took place locally. I guess the T4 team reckoned that they were more likely to get the essential Local Authority involvement if they were the ones to do the travelling. Peter’s Care Coordinator, who I am sure must regularly work a 60 hour week, travelled to chair the CPA and his consultant joined us by phone. Agreements were reached this time, as I had found a potential school and funding for this was agreed. Support for Peter for the interim period at home formalised.
HOWEVER, ALL WAS NOT WHAT IT SEEMED. What the Finance Group (MARG) did next, even the most hardened SEN Warriors will struggle to believe.
I collected him and brought him home 2 days later. 19 weeks after his admission.
It took a further 10 weeks for his DLA and Carers Allowance to be reinstated.
Chapter 7 The Disappearing Plans
A week after discharge, inexplicably, Peter was discussed again at the MARG (multi-agency resource group) meeting. Why he was re-discussed at the MARG was a mystery to me. Our SEN Manager had previously informed me that there has been agreement to fund a 52 week specialist placement. It was with this agreement confirmed that he had been discharged from hospital. The was no medical representation for Peter at this meeting and no assessments had yet been made of how he was managing at home.
So, at the ‘not so multi-agency’, multi-agency meeting, and with no assessments post discharge they apparently decided that Peter was now fine. They seemed to be of the opinion that hospital had fixed him and that was doing well at home. No-one actually asked how he was doing; information of this sort may have been highly inconvenient to the MARG.
Having agreed between themselves that Peter was fine they also agreed that the residential funding could be cancelled. Yes. Really. I told you there would be an all time low that would shock even the most experienced parents…..
How very neat and tidy for them.
I was invited to a meeting with the SEN Manager and the Educational Psychologist, where I was told of the decision. A specialist day school placement was offered for Peter.
It was so cruel. More than anything I would love for Peter to be able to go to day school just half an hour away from home. All over again, I had to work through the decisions and recommendations made by his health care and social care teams. All over again, I had to come to terms with the fact that it wasn’t possible for him to stay at home. Even if he was placed with the local T4 CAMHS hospital day school, Peter wouldn’t have been able to manage if not residential. Again I had to fight for something that I didn’t want to need.
To summarise, at the discharge CPA, the following was agreed:
- Proceed with plans for residential special school (education): cancelled by MARG
- Support from autism trained Family Support Worker (Children’s Services): over ruled.
- Financial support for Lily to attend a gymnastics course in the holidays (Children’s Services): not delivered and place on course lost as a result.
- Support from the Tier 3+ Nurses (CAMHS): tick
- Support from Psychiatrist (CAMHS): tick
- Support from Clinical Psychologist (CAMHS): tick
Again. Thank goodness for the NHS.
There were implications for Lily, as well as Peter, with the collapse of the previously agreed decisions. She desperately needed help from CAMHS to deal with her disabling panic attacks and was coming to the top of the waiting list. However, if Peter was to become destabilised again, Lily wouldn’t be able to make good use of the psychologist’s input. She couldn’t have the therapy she needed until her home life was settled. It made perfect sense; I understood and supported their decision. I just wish the ‘powers that be’ in SEN services had the slightest inkling of the impact that their poor systems had on my family.
I contacted the T4 consultant. Again his gravitas was evident and he wrote a letter and offered to support the local T3 team. Peter’s T3 psychiatrist spent yet more time liaising with the Local Authority to reinstate the provision that everyone had already agreed that Peter needed. I went to another meeting, to re-agree the plans for Peter’s education and care. Having recommended 52 week provision earlier, Children’s Services had now decided that Peter didn’t need any of their money and so a bipartite (education and health) agreement to fund 38 week specialist residential placement was reached. As Peter quite clearly meets the ‘child in need criteria, the latter two agencies are hopeful that Children’s Services will re-join the agreement.
Chapter 8 What Next?
As I write this, Peter is about to go for a trial at a specialist residential school 60 miles from home. Assuming it is a successful trial, he will start there as a termly boarder. I can’t begin to describe the mix of emotions I have about this. Mostly I just feel sick and lost. I still can’t believe that we have reached this point. Peter is a bright child with Asperger’s syndrome. He had good insight into his difficulties and was a genius at masking them. Critically, Peter’s complex communication (ASD) difficulties were detected at a young age because of his co-existing mental health difficulties, so there was every opportunity to get it right for him from Year 1.
Peter’s anxiety had led to a school nurse making a CAMHS referral when he was 5. He then saw an astute and experienced CAMHS practitioner, who picked up on other issues. His CAMHS and paediatric teams have been consistent and supported him, his family and schools. He should have had the best possible prognosis. This story could so easily have been one of success, demonstrating; the benefits to the child, cost savings and the gains that can be made when making an early diagnosis. It could be a tale of slick multi-agency working and effective liaison with the child and his family. If only……
The differences between the Peter we had before last November and the Peter we know now are subtle and sad. I can only liken it to a physical head injury, where you see the person recover on the outside so that they look ‘normal’ but part of what makes them who they are and, what they can manage in life, is altered.
His sister and I are now so sensitive to the new nuances that make up our current Peter. It’s so confusing. Why did it happen? What is it that’s gone wrong in him? How much will he recover? Part of me thinks that the answers will tell me that the specialists don’t know, part of me that they’ll say that he is unlikely to recover fully. Neither of these answers I want to hear. So I don’t ask.
His difficulties in school were crystal clear, if you saw him after school. His CAMHS team and I worked relentlessly to help him with these. We also worked endlessly to explain what was happening to Peter to staff at his schools. This type of presentation in children with ASD is well documented. It shouldn’t have been difficult for them to understand. He only needed a small amount of help.
Most of all he needed to feel believed and be understood. It would have cost them nothing. Instead, the school staff erected a brick wall, barricaded themselves in, declared Peter NORMAL and set about blaming me. The information they documented and the way they communicated about us with others was unprofessional, unkind and inexcusable. It clearly demonstrates incompetence, arrogance and a refusal to work with the NHS and with parents. These traits and behaviours were present at all levels in education services, including the so called ‘specialists’ employed by the Local Authority.
As I write this it is exactly 10 months since Peter sat on the cupboard saying “no” to the voices. Voices that were his own thoughts, begging him to make the distress stop. The first sign that we had of the trauma his mind had unnecessarily suffered.
This story will run on, but I will leave it here for now, as we start to adapt to our ‘new normal’. I look forward to seeing Peter thrive in his new school and Lily recover to her old bubbly, confident self.
Twenty eight days after Peter starts his residential school, half of our income, his benefits, will be frozen again, so I have 4 weeks to find a job, start it and get paid. Of course that isn’t possible. Our income will be halved all the same.
I never wanted my son to leave home at 10, to have most of his parenting carried out by carers, for him to have limited access to his neurotypical peers, to have such an uncertain future. Like most parents I want him to live at home, go to a local school, join local clubs and have local friends.
I didn’t want to have loads of ‘professionals’ involved in our lives, to have to explain myself to them and trust that they will not make poor judgments; intentionally or unintentionally. I didn’t want to be reliant on their conclusions being accurate, because they will be recorded and once something is recorded everyone assumes it is fact. Even when it is a load of utter rubbish, based on bias and gossip.
Lily’s parenting experience will now largely be that of a single child. We will both have to adjust so that she has the best opportunities her new circumstances can offer.
So what about the school staff that didn’t accept the findings of every specialist and failed to provide the support prescribed. And the teachers whose unique approaches to ‘support’ Peter led to hallucinations and flashbacks? Well, they know little of what happened in the last 10 months. Sadly, their unconscious incompetence is such that, if they did, I think they would simply be incredulous at their own brilliance…….. They would believe that, after the involvement of all these professionals and following all the assessments, only they knew the truth, only they had worked it out:
“Peter is fine. It’s probably mum”.
I have been asked “what next”? Well, incredible as it sounds, the day Peter was due to start at his new school he was in hospital having had his appendix out the night before. He started a couple of weeks later. There was no doubt that specialist residential support was required also with sound Mental Health provision. To fast forward 12 months to see the next instalment of this rollercoaster click here.
NICE guidance is clear that social care staff involved in families where a child has autism, should be trained in autism. We should have been supported by the Children with Disabilities team. By allocating the wrong resources, they were wasting resources.
 NICE clinical guideline 170 1.1.8 Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism.
 Section 17 of the Children Act 1989 defines a child as being in need in law if:
- He or she is unlikely to achieve or maintain or to have the opportunity to achieve or maintain a reasonable standard of health or development without provision of services from the LA;
- His or her health or development is likely to be significantly impaired, or further impaired, without the provision of services from the LA;
- He or she has a disability.