In my last blogpost on the Get Maisie Home campaign, I outlined the plans that me (with my Justice Together hat on), Sally (Maisie’s Mum) and Gill (Sally’s friend and supporter) had put together to work towards getting a package of care in place for Maisie when she returns home. These included:
- Accessing copies of relevant documentation that could help to build the case for special provision
- Ensuring that an Education, Health and Care (EHC) needs assessment was started
- Securing a Child in Need assessment
- Putting in place provision to meet Maisie’s immediate needs upon her release from hospital
- Work on the core difficulties at the heart of autism
- Promoting positive emotional wellbeing and mental health; ensuring there is no relapse (Lifespan service, Tavistock Clinic)
Those last two kind of go hand in hand as work on certain difficulties at the heart of autism will significantly contribute to Maisie’s emotional wellbeing and resilience.
Our next step was to try to meet the Commissioner for children’s mental health. Turns out he is also the Commissioner for young people and adults’ mental health as well as Commissioner for a whole host of other vulnerable peeps. What a huge agenda…..wouldn’t have his job for a gold clock.
We met with him yesterday morning and to be honest, I am a) gobsmacked and b) absolutely buzzing from the response we got from him. He agreed, without batting an eyelid, to commission the input from the Tavistock Clinic. That’s likely to be 3 x 6 weeks of input at over £3K a throw. The Psychologist from CAMHS will be doing the ‘external funding request’. Don’t mind if I do.
Sally talked about the problems Maisie has sleeping……she can be up in the middle of the night and this is when self-harming can sometimes take place. We explored options to address this and agreement was given in principle for a personal budget for a care worker in the home 2 or 3 nights a week. A personal budget. Just like that. Some of you who regularly follow my blog will know of the hoops we are still jumping through in Oldham to get a personal budget (via the continuing care process) for two of the students at Bright Futures School. Leap-frogged. Just like that.
Sally raised her concern about what might happen if Maisie reaches crisis again. Hopefully that won’t happen if the right services are in place, but it was useful to cover that base, just in case. A fast track system will be put in place. No police, no A & E. Immediate support from the new 24/7 Crisis Intervention Team. More detail needed but a good start.
We discussed that it may well take a while for the EHC plan to be implemented (it isn’t even drawn up yet) and touched on the possibility of some emergency outreach support being put in place for Maisie whilst she is at home so that she has positive activities to give her structure and enjoyment. Though we didn’t go into detail, we did mention the absence of a Child in Need assessment (which may well cover this type of support). I got the impression that the Commissioner quickly saw the rationale for reminding his social care colleagues of their duty of care towards Maisie (a problem shared is a financial burden halved).
Afterwards I was reflecting on why it might be that this meeting had gone so well. Possible contributory factors:
1. Maisie’s Mum Sally has been extremely proactive in campaigning around Maisie’s situation. She’s been on telly and in the papers locally and nationally as well as keeping up the momentum around the petition to reinstate specialist CAMHS services in her home town and ensuring that Maisie’s story is highlighted on social media.
2. I think it was clear to the Commissioner that we knew our onions
(in terms of rights, entitlements and basics of the law relating to these) and that Sally wasn’t going to be fobbed off with anything less than she and Maisie deserved. We didn’t get anywhere near mentioning Ombudsmen, judicial reviews or further press coverage (no need for the nuclear option, thankfully) but I think he knew Sally wouldn’t hesitate if necessary and that she would be well supported if she chose to go there.
3. It’s helpful to have a mindset of ‘making friends’ with people who are decision-makers (even if you don’t like them!) and seeking to build consensus around needs and provision. Tread carefully and diplomatically and leave the nuclear option to the absolute last resort.
So my take home messages to anyone in a similar position: tool up.
Tool up with knowledge (this is a great place to start for an overview of the rights and entitlements of disabled children, adults and their families) and tool up with people who can support you and who have access to further specialist knowledge and networks (some of us have come together to try to provide access to this kind of support via Justice Together – drop us a line, we’ll see if we can help).
Find a way to place the ball firmly back in the court of the service providers and Commissioners.
For Sally and Maisie, this is being achieved via the EHC Plan (the statutory framework that places duties on the service providers) together with the indirect pressure brought by the high local profile of Sally’s campaign……..and also possibly that slightly intimidating link to those feisty women from Justice Together J .
As we were about to leave, the Commissioner said to me casually, ‘what was your name again?’ and scribbled it down on his pad.
Waitrose café for us for meeting post mortem. University of google for the Commissioner.