We have had a very busy week just riding the wave. We were praying for a miracle last Friday! The LA/ICB had it all sewn up. We thought we would be in Court of Protection or crisis. We had 12 days with our current care provider remaining, a new company coming in, no transition plan and no risk assessments, with the prospect of Rohan going into crisis again in under 2 weeks and possibly hospitalised due to their “plan”. Frankly, I don’t think either of these senior managers from the LA/ICB in the meeting understood what a transition plan and risk assessment even was – when Dave and I asked for them, they just looked at us blankly and told us “we can’t plan for every eventuality”. The level of incompetence and negligence was outrageous.
Then, our miracle started to unfold. Last Friday I received a Subject Access Request (SAR) that I had put into the ICB over a month ago. This started to answer why our current agency had given notice. You may remember it was parent blame in their letter; this SAR revealed the pressure that the care provider had been put under by the ICB. When faced with the facts as an objective reader, the abuse of power and coercive control was very obvious, and all in order to destabilise Rohan’s care. We later had a meeting with the head of service at the LA, who after a while appeared to relax and talk to us like real ‘people’ rather than reading off a script. After this meeting she sent us an email saying our current provider was being extended for 6 weeks! This was such a lifeline. I started breathing again after this and slept well that night.
We still had no idea what the next week would bring. What we have learnt is that when things are good and they are quiet, there is work going on in the background to totally knock you off your feet again.
The CEO of CCC then agreed to talk to us. He put boundaries on our conversation – we were not to talk about complaints, the current agency and any legal matters. Dave and I focused on policy and procedure, creating an agenda around three points:
1. Deputies and parents/carers are ignored
2. The complaints procedure is not fit for purpose
3. The current care planning is transactional, not output-based
We made many sub-points in each of these; the result from each being mistrust of the LA/ICB, frustration and litigation, and that there was a huge cost to both them, us and the public purse as a result of this ineffective system.
It was an incredibly positive meeting, and we left feeling hopeful. He was very grateful for what we shared. He has promised us he will meet with the SC Executive and make plans to investigate these systemic issues.
It is a shame we have only had this meeting five months after we first asked for it, but I can see why it has taken so long. Because of the ineffective complaints procedure, he may receive 100 emails from exhausted parents daily? By the time they contact him, they have little to no patience or reason left; they are in full fight-mode and desperate to resolve their immediate issue. He then passes these emails back to the complaints process and mangers to deal with. These mangers/SWs feedback to him is usually along the lines of ‘we are doing everything we can to support these parents but they are just very difficult families’, creating parent blame or safeguarding allegations.
The parents at this stage are either defeated at the mountain in front of them, or take the challenge further, resulting in an exhausting legal battle. The CEO is then told by his trusted senior mangers that the issue has been resolved, i.e. the parents have been crushed, or that this very difficult family are being unreasonable and are actually not acting in their child’s best interest. If you read the paperwork they write for court, they sound like they are heroes saving our children from these terrible situations us parents have created.
All in all, I can understand his surprise when he speaks to rational, logical and reasonable people like us pointing out all the failures in this very poorly designed system.
We are hopeful we can bring about change in our County Council for not only the service users but the LA themselves. I have always seen us as working together to support Rohan, not in spite of. Let’s see if we can change this narrative.
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