You may be wondering how we are getting on. I have spent much of the last year volunteering my time to building relationships and trying to bring about change in the Local Authority (LA) and Integrated Care Board (ICB).
With the ICB we have made significant progress. The Executive leadership team (ELT) embraced all we fed back, they set to introduce training and a brand-new team to take all the cases that are 100% health funded coming from the LA. We (parents) were involved in designing and recruiting this team. Then came the announcement from the government, abolishing NHS England. This has resulted in 50% cuts in our ICB, no one knows what the true impact of this is going to be. This work has all been halted, we hope we will still be consulted and involved.
Work with the LA has been like pushing water uphill with a fork!
After receiving my report in November 2024 I got a very long email from the CEO of the LA acknowledging the contents and saying, “The call for urgent change is clear and necessary”. This was alongside lots of reassurances. Another four months on, that is, eleven months since we first spoke to him, we are not yet clear what this means. We are yet to see any real commitment from anyone in the LA, except one Interim Director who could be leaving very shortly.
On invitation, we and a number of families have taken a lot of time out to attend meetings, in an effort to support positive change, this was also attended by a couple of the directors. We created a plan for what our dreams are for the service. The director who brought this session together said “I am disappointed your dreams only reach as far as what we should be delivering”. While I totally appreciate their commitment and resolve, we are not seeing any other buy-in from the rest of the ELT, which makes this work rather impossible.
More and more parents are reaching out to me, seeing my report and asking for my support. I keep taking these cases to the LA and ICB and see a varied response. The theme is still, levels of unnecessary bureaucracy, poor communication, parent blame and the incredibly slow remedies. These systems are not transparent, effective or self-reflective. It is easy to see how System Generated Trauma is being experienced en-masse. On occasion talking to these agencies feels like shouting in space – no one can hear you, you are a speck in this vast abyss, you, your voice, your family, don’t matter.
We are still awaiting to see terms of refence for the audit the CEO promised or an audit report. Their business plans and achieved ambitions on their website are not representative of the cases mentioned in my report or what I am still seeing day to day.
What difference has a year made? Despite it being recognised at the top of the organisation that “The call for urgent change is clear and necessary”, there is still no change seen at an operational level. So our work, albeit unappreciated, continues!
FYI Photo is of Dave and I having a relaxing meal out celebrating our wedding anniversary. This time last year we did go out, but I spent the whole evening on my phone emailing our solicitor and checking legal statements. We feel blessed we are not doing this now, however, I still know too many families who are.
