Hello,
I'm Dan. I am a person with lived experience of mental ill-health. I am also a cancer patient, currently in my five year cancer surveillance after my surgery in 2022. I first came into contact with mental health services when I was 17. I've been in and out of service ever since. I have a particular interest in suicide prevention. I currently live with suicidal thoughts, and I have safety plans in place in case those escalate.
Here are the main things I want you to know:
we need to involve more people with lived experience in restraint reduction. We need to involve a wider range of people. Those people need to be involved at all levels of the organisation. Those opportunities should offer different styles of involvement from very brief one-off meetings all the way through to in-depth on-going strategic leadership. We especially need to make sure that we are being culturally competent, and also that we involve people who communicate differently.
And we also need to move the culture so we stop defaulting to "restraint is needed" and we start being a bit more curious about whether restraint shows a failure to provide patient centred care.
How can patients get involved in patient safety work?
Some of you will have a good knowledge of all of the options. Some of you will have in depth detailed knowledge of some of the options, and it's fair to say that some of you will have paused to think about the question and will be unclear what the options are.
When we talk about quality and safety and leadership we talk about that "relentless focus" on safety. I believe this -patient involvement in safety- is one example where this organisation has perhaps lost focus, but that there are good, understandable, reasons for this.
When something majorly unexpected or unintended happens there's sometimes a national outcry, and an inquiry produces a report, and recommendations are made and some of those get implemented. But these are usually bolted on to existing policies, so we have this cumbersome accretion of patient safety mechanisms.
Each of these different processes should be fully coproduced, but in this country we still have a poor understanding about coproduction - most people miss out the fact that coproduction is about sharing power - and so we have variable quality of coproduction. And that means that patient involvement in patient safety can be limited.
How can your patients get involved in patient safety work?
What should you as an organisation be putting in place to get more people involved? To get better representation? To provide opportunities that are suitable for people at all points of their recovery journeys?
NHS England and NICE are telling you to appoint a patient director, and maybe that's a good idea, but to me the idea that one person can equally represent the experience of the 15 year old girl on a community eating disorder waiting list for 18 months, or the 78 year old person who struggles to get upstairs and so sleeps in their arm chair, or the black man struggling to show their distress in a way that your mostly white staff can recognise and accept, or countless other patients, feels absurd. And we should not need it -- you should understand the needs of your patients by talking to them. (I've done a lot of interviewing for the organisation and in the past the questions about coproduction were left to me, because I was representing patients. But why? I'm a patient, obviously I want better coproduction. But when *you* ask those questions you help form the culture, you reinforce the point that this organisation believes in coproduction, this organisation has an expectation that staff make full use of coproduction, and that this organisation will support staff to do so.)
[I've been working with Gloucestershire Health and Care, and one of the legacy organisations, for years now. I've spoken to a lot of staff. And they'll sometimes ask "here's a thing we're doing, what do you think?", so I tell them, but I always ask "I'm more interested in what your patients think, tell me about that". And I'm often disappointed by the answer. Patients have often not been involved in any meaningful way in those discussions. Coproduction was not built into the process. You didn't get the idea for change from patients, you've imposed it upon them, and you need to get it done and so patient objections are smoothed over, minimised, explained away. My challenge to you is to do more to listen to patients, and to not seek to tell them why they're wrong and you're right. I get that it's hard - you need evidence, you have budgets and timescales and regulatory action and statutory guidance and all the other stuff. But still. I do what I can to challenge the assumptions that are made about restraint, but we need the broader patient voice to keep challenging those assumptions.]
Nationally we had the first iteration of the mental health safety improvement programme, hosted by the National Collaborating Centre for Mental Health (part of RCPsych) with NHS improvement and CQC. And then we had the second iteration, hosted by NHS England's patient safety team, with support from the AHSNs. Both of these were focussed on using QI methodology to see improvements in three areas - suicide prevention, sexual safety, and reducing restraint. The MHSIP has mostly ended, but the work is continuing in the background. The new iteration changed NHS England directorate and is now the "MHLDA Quality Transformation Programme (Improving the culture of inpatient care)", and that is much more focussed on culture. That national focus has been diluted.
How do your patients get involved in patient safety work? How would you involve a patient who cannot read? How would you involve a patient who has English as a second language? How about a patient who has limited availability in the 9-to-5 work timeslots you have available? How does a child fit patient safety work around their intense school burden? Hands up if you can use makaton to say "patient safety"?
How do patients know that you are safe to work for? How does a traveller know they're going to be respected and not experience racism? How does a black person know that you're going to *hear* what they're telling you, and that they're not going to have to repeat the things that black people have been saying for years?
I want you to create safe ways for patients to talk to you, in ways that are meaningful to them, about their experiences. I want you to create time for your staff to properly hear, and understand, what patients are saying about restraint.
I want to see more acknowledgement that restraint is not acceptable and represents a failure to provide suitable personalised care, and that the Use of Force (Mental Health Units) act is not meant to allow you to continue to use restraint but count it better, it’s meant to end the use of restraint.
https://carequalitycomm.medium.com/restrictive-practice-a-failure-of-person-centred-care-planning-b9ab188296cf
https://thesmallplaces.wordpress.com/2014/11/14/what-good-is-it-making-someone-safer-if-it-merely-makes-them-miserable/