Get your torches out

Is it me or are the recommendations involving advocacy in the CQC interim report ‘Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability or autism’ just a bit odd?


For people who are yet to read this report – and I sincerely urge you to – the CQC are heading an inquiry into the restraint and seclusion into people with autism or learning disabilities (or both) who are detained within mental health units. The reason they are doing this is because the feisty father of one young person held in these conditions, shouted loudly and clearly that hospitals are harming our young people (and adults) who are cared for in this way. You can read about his powerful experiences through his twitter feed https://twitter.com/JeremyH09406697. This grabbed the attention of the Secretary of State who asked CQC to undertake this review. You can find the report here.


The first thing I find noticeable about the report is the total lack of reference to advocacy within the interim report itself. Yes it talks about the role advocacy ‘might play’. I’ll say that again. ‘Might play’. How about the role IMHAs are playing now. Didn’t advocates have a role in raising the very concerns that weave through the report?


I wonder if the report doesn’t talk much about advocacy because when we actually look at it, IMHAs:


- aren’t really playing much of a role or

- they are prevented from playing a role or

- they are playing a role but it’s hidden.


My gut feeling is it will be a bit of all three.


There are some IMHA services which are – short intake of breath – simply not good enough. I hope the number is tiny but you know who you are. These are the services that are far from independent – are in cahoots with the provider. Happy to share information, reluctant to challenge. The services that don’t ask questions. The services that never follow up referrals, just close cases. The services that say ‘we don’t do Non Instructed Advocacy’. The services who families say ‘the IMHA just laughed with the doctor and didn’t even speak to us’ or ‘My son had an IMHA. She never turned up’ (both actual quotes).


A bigger number of services I think are just prevented from having a massive impact. Commissioning limits the number of hours an advocates can spend on the ward. Hospitals ignore the requests and representations of the advocate. Advocates are not invited to key meetings – or invited the day before. Referrals are simply not made so the advocates don’t even know who is on the ward. There are systemic barriers at play which we need to address (and yes CQC, we would love you to help us with this).


And then there are incredible services who have great impact buts it’s hidden. I really do appreciate that most advocacy actually takes place in hidden spaces. In quiet areas where no-one is looking. And perhaps it needs to and this is why advocacy hasn’t been portrayed in this report as a solid source of these concerns. Or perhaps advocacy needs to get into the open a bit more. Perhaps advocacy needs to step up into the spotlight to represent with confidence, people who are unable to shout for themselves. I don’t mean narky-ranty-red-faced-shouting. But truthful shouting, loud and clear shouting which shows the experiences of people with autism and learning disabilities.


Maybe we need to take responsibility for the complete and utter lack of understanding that people have of advocacy… which brings me to comment on the first recommendation made by CQC in this report…..


Recommendation 1: Over the next 12 months, there should be an independent and an in-depth review of the care provided to, and the discharge plan for, each person who is in segregation on a ward for children and young people or on a ward for people with a learning disability and/or autism. Those undertaking these reviews should 27 have the necessary experience and might include people with lived experience and/or advocates.


Upon first reading, this sounds great. I got excited. Everyone will be reviewed. Woo hoo.


Even better, advocacy will be there supporting the individual or representing them to make sure their views and experiences are included. But then I re-read it. And then I read the Gov.UK website[1] explain the review recommends ‘funding specialist advocates to review the care of patients in segregation or long-term seclusion’.


This is not advocacy.


Advocates do not review things. Advocates do not make decisions. Advocates do not even have a view on what should happen.


To continue our sermon: Advocates do not filter what the person wants to say. Advocates do not change what the person wants to say. Advocates do not care for best interests (which is why we hold no decision making responsibilities). Advocates do not investigate issues. Advocates do not mediate. Advocates do not advise.


Advocates simply ensure the person’s voice is heard, their choices taken seriously and their rights protected. Advocates speak up. Advocates challenge. Advocates question.


The CQC (and government) seriously need to get up to speed. Advocacy is not some tokenistic role you can bring in to show you care about safeguarding a persons rights. We need proper recognition, support and autonomy to do our work. We need to be included within the reviews – but only to support the person’s involvement, or represent their views and experiences when they want us to or can’t do it themselves.


We need support to do what we are meant to be doing. Which brings me to muse on what the heck recommendation 3 is about?:


Recommendation 3: Urgent consideration should be given to how the system of safeguards can be strengthened, including the role of advocates and commissioners, and what additional safeguards might be needed to better identify closed and punitive cultures of care, or hospitals in which such a culture might develop.


This might include strengthening and extending the role of advocates, to ensure that every individual in segregation has a truly independent advocate who is appropriately trained to recognise good and poor care and the quality of staff behaviour.


To be clear. Every single person detained in these hospitals is already legally entitled to a trained IMHA – and has been since 2009. To recommend that ‘every individual in segregation has a truly independent advocate who is appropriately trained to recognise good and poor care and the quality of staff behaviour’ is like recommending every individual can access a solicitor to represent them in their Tribunal. It’s pointless because it’s already the law.


I think the recommendation needs to be much much more honest and ambitious. It needs to mirror the MHA review recommendations (still un-accepted by government) that the IMHA service is an opt out one. That people are automatically given an IMHA unless they do not want one (or if the person lacks capacity to make this decision, it is not in their best interests to have an advocate).


The recommendation needs to talk about commissioning of advocacy. We know there are not enough IMHAs to meet demand. We know the amount of time advocates can spend on a ‘case’ can be capped. We know monitoring of advocacy is at best inconsistent and at worse absent.


The recommendation needs to embed relationships between advocates and CQC inspectors in a clear framework. Are advocates routinely interviewed by CQC inspectors? Do they provide intelligence and insight into systemic themes? Probably not – but they could.


I will finish with a plea to both CQC and advocates. We all need to do more. CQC – please support our role by making sure people who are entitled to an IMHA actually get one. Please help extend advocacy to families who are often left alone to navigate complex systems. Please monitor how the hospital makes (or blocks) access to advocacy.


Advocates. We have the power to challenge things on behalf of people who can’t. You have the privileged position of being the voice of a person who is ignored. You have the knowledge to demand rights. You have the freedom to ask questions and shine a light on awful awful practice, that has led to one man being segregated for 10 years.


Please. Advocates. Get your torches out.

[1] https://www.gov.uk/government/news/new-measures-to-improve-care-for-people-with-autism-and-learning-disabilities?utm_source=4ac4bfbd-c971-484c-9d57-f294a5410622&utm_medium=email&utm_campaign=govuk-notifications&utm_content=immediate

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