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your voiceyour rightsyour choice

Image shows Michael Hagan speaking at the Houses of Parliament

Michael Hagan speaking at the Houses of Parliament, with Karen Buck MP and Saboohi Bukhari


Judith Davey, CEO, reflects on meaningful involvement


People say that genuinely putting service users and patients at the heart of everything we do is what’s distinctive about The Advocacy Project. It’s built into our governance. Baked in. Not an add on. We’re not perfect, but we do try hard.


40% of staff and 50% of trustees have lived experience of the issues we work on – things like mental health, learning disabilities and dementia. This gives us authenticity and builds trust with service users which enables us to get to the nub of their issues.


Increasing people’s agency

We focus on building people’s capacity and increasing their agency – rather than speaking on their behalf or doing things for them. For example, we created an opportunity for Michael Hagan – someone with learning disabilities, physical disabilities, and a speech impediment – to tell MPs why yet more training in how to write a CV and doing practice interviews is well meaning, but it will not help him (or anyone else in his position) get a job. The actual issue is to do with disincentives in the benefits system.


Meaningful involvement

Keeping patients and service users at the heart of care requires meaningful involvement. Meaningful involvement takes time, and needs resources. It doesn’t always cost as much money as one might think, but the benefits of doing this are huge.


Here’s an example: rainbow lanyards. You’ll all be familiar with them as they’re now used nationally. We listened to people in secure mental health units about their reluctance to disclose important information about their lives and their mental health to staff because they were afraid of discrimination and abuse, and being locked away for longer than necessary because of this. Our practical experience indicated that this was not isolated experience. So, working in partnership with CNWL, we undertook an extensive survey and consultation on the issues. Cutting a long story short, the idea of rainbow lanyards emerged from patients themselves – a visible sign to indicate they are safe to disclose. A small thing that makes a massive difference. The stats on the outcomes speak for themselves. Not only do people feel safer, their health outcomes are better.


The problem of competing pressures

What gets in the way of meaningful engagement? Competing pressures, for a start. The pressures on the public purse and the pressing need for transformation of health and social care means that work needs to proceed at pace. Yet meaningful involvement takes time. We have seen a number of situations where pertinent information from service users and patients comes in after decisions have been made. It’s easy to put this down to poor planning, but it’s more complex than that. Competing pressures create this kind of sub-optimal situation.


Do our structures help or hinder?

Do our governance structures overseeing service design, delivery and transformation make sure user voices/patient voices are heard? Do we have culturally appropriate and effective mechanisms for people speaking truth to power? Often not. Do scrutiny committees and trust governors listen to people’s voices? Do they challenge officers on how service user input was gathered and analysed? Do they explore what steps were taken to meaningfully make sure all voices were heard? Sometimes. There are good intentions, but our view from the outside is that it could be better.


We know from our professional lives that creative ideas and innovative thinking comes out of more fluid, organic, and unstructured engagements like brainstorming. Why then do we persist in involving patients and service users in set piece events with structured agendas and tons of papers to read?


We know some participants may need help in understanding and pre-digesting the subject matter under discussion. Do we devote enough time to enabling this? We have people with learning disabilities on our board so we know everyone can engage effectively if a little bit of care and attention is paid to this.


The drawbacks of regular meetings

People with lived experience can sometimes become unwell. Changes in life circumstances or medication can have an effect on attendance and participation. Important voices like carers can be time poor making participation in regular meetings difficult. A one size fits all approach to engagement does not cut the mustard and important insights will be missed. In our experience a task-and-finish type approach can be more productive than regular standing meetings. What’s important is a clear workplan so engagement can be planned properly according to the context.


While sometimes, conversations will no doubt need to be top down because you need to get input on particular topics, bottom up conversations are equally as important as things like rainbow lanyards will emerge from more organic and emergent engagements.


Using advocacy data to inform

So how do you know if it’s working? I know people already consider complaints data and the trends or issues it highlights. But what about advocacy data? Advocacy, whether statutory under the Mental Health Act, Mental Capacity Act and Care Act, or non-statutory, is a bellwether that shows what’s working or what’s not. It’s an early warning system. It’s rare that advocacy data is used in scrutiny processes or to inform transformation programmes. That’s a real missed opportunity.


If it’s working, you’ll see a series of small victories – small things that make a massive difference. Often there’s a mismatch in terms of timescale. Service re-design and transformation has a medium to long term focus. Understandably people who are providing their time and insights about how things should be, want to see some short to medium term changes. Otherwise they’ll lose heart and disengage. People will say “they keep asking us about stuff but nothing ever changes” if we don’t get the balance right between small immediate changes and the long term goal.


Hearing all the voices

We’re all familiar with the challenges of making sure we don’t just listen to the same old voices – those that are most eloquent or shout the loudest. If we’re serious about this stuff, we need to go to some lengths to hear other voices too. Beware testimonial injustice. It’s a well researched concept but is rarely considered in user involvement or scrutiny.


Testimonial injustice occurs when “prejudice causes a hearer to give a deflated level of credibility to the speakers’ word … a negative stereotype introduces prejudices that cause a credibility deficit with the consequence that a person’s capacity to act as a testifier – a reliable giver of information – is impaired, or in severe cases completely destroyed” (Kidd & Carel, 2016, p. 177).


Often it’s associated with people with mental health issues, the homeless or people engaging in substance misuse. We need to make sure we really listen to all voices – it’s not only the right thing to do, but also because some of these more marginalised and stigmatised groups have a significant impact on the functioning and cost of the whole health and social care system.


Bearing all this in mind, there are two questions I think scrutineers and foundation trust governors should keep in mind to help make sure people are at the heart of care:


  1. Do the governance arrangements for transformation and service delivery include assurance around user voice?
  2. Has service user input been triangulated with other data (eg complaints and advocacy)?


Food for thought.


Judith Davey
Chief Executive