Patients Can Help

A glimpse into the Culture of Care Programme in Mental Health Wards

Trigger warning: This post contains reference to suicide

Patients can help staff. It may seem counter-intuitive but they can contribute to staff care and development. This following article is based on a presentation I gave the other day at a Culture of Care Event for the Staff Care and Development Programme. Incidentally, it was my first conference presentation for three years since being unwell.

A While Back

This first section refers to experiences a few decades ago when I was 28 years old and part way through six years of mental hell, & admitted to a psychiatric unit.

Patients see things that staff don’t: When Steve put his fist through the window, and a trail of thick sticky blood lined the corridor, I went out to be with Mandy, the receptionist at the entrance. She made me a cup of tea and we held our mugs tight in our hands, and in effect ‘debriefed’ together.

Later Steve killed himself by hanging during a period when he ‘absconded’ (horrible criminalising word) from the unit. The response of the ward staff was to lockdown the ward at 9pm. Thereby making the ward culture more unsafe. It deprived me of my only visitor, the chaplain who could only come at 9.30. And the environment felt more oppressive than ever.

Mandy and I talked more widely about the ward culture – she knew things I didn’t. But I also knew things she didn’t. I’ve written more about kindness on the ward here.

I told her how one of the OTs had given me psychological support, but that another senior doc had offered me ‘counselling’ in a side room which was a laundry cupboard. That the former had offered me ongoing support and advice and had encouraged me to exercise, whilst the latter had taken five minutes to basically tell me to pull myself together as I’d been such a success in my life previously.

I later found out that junior staff and non-clinical workers had virtually no say in how the ward was run, no voice in the regular MDTs and that the ward manager – at that time someone with a custodial approach (and bloody huge shoulders) was ‘in charge’. The fruits of staff culture grew from that tree.

Yet patients could see all this and who knows, could have been helped to speak up. We knew what the culture was really like – we saw how the staff huddled behind the protective glass windows of the staff room, and seldom came out to talk during breaks. I knew which nurses I trusted and which I did not. I knew how the atmosphere chilled when the night staff took over. Those were long desperate nights.

During the days, I heard one Jewish nurse being called a ‘bloody yid’ by a patient. I wonder now if I’d been able to be part of anti-racism conversations, whether I could have called that out. Sometimes patients can say things that staff can’t.

My best friends amongst staff were Mandy and the cook, Dorothea, who knew everything about the culture, who kept my dinner warm when I ran away on a Sunday afternoon.

We care about staff (not always all of us, granted). We could be made to be more caring if we were involved in discussions about staff culture.

We know what it’s like to be broken – in our relationships with self, others and the system. We are burned out beings. We know what it’s like for other human beings. We can empathise with what staff are going through. If staff were allowed for their boundaries to drop a little – that harsh ‘them and us’ culture which is so imbibed in the very air on those stilted closed territories – we could share vulnerability and meet in the fields beyond.

Recently

That was also the impetus behind work I did much later in Sussex as a Patient (Lived Experience) Director. I’ve written a lot about these experiences elsewhere, but two things we did showed me how integral patients can be to staff care and development.

We had a pool of Patient Improvement Partners, who got involved in projects and governance. One of these was about shared decision-making. Patient Partners sat in on consultations between clinicians and patients (this was a musculoskeletal partnership). They fed back on the quality of relational care on display, on communication style, and shared decision making. They fed back to staff on their development in these fields.

During Covid, I was approached by a senior physio who asked me whether patient partners could facilitate staff well-being sessions as they came back to re-build the face to face service. I asked why. She said “because they show their vulnerability all the time, their human quality, they are not restricted by labelling themselves according to their pay-band… we need to shift the service and staff culture… you lot can show us how”.

Now

During the Culture of Care Programme, our partnership is supporting staff teams on wards to begin improvement projects on enhancing their own care and development – there is an emphasis on developing psychological safety, tackling racism (from patients as well as between staff) and confronting power (eg between junior and senior staff).

We are suggesting that

(a) patients/service users can provide insight and feedback into projects (e.g. current in-patients, former patients and carers);

(b) people with ‘lived experience’ of mental health problems who are more experienced being involved can be part of ward team project teams (e.g. peer support workers, patient safety partners, experts by experience, patient/lived experience leaders).

As the programme enters its final stages, cohort three teams from across England will begin developing ideas for improvement, and we hope modelling more collaborative leadership at ward level, challenging racism, and taking the time to reflect on power issues. This is not easy work, particularly now.

Ward staff are under intense pressure, we know that. The ward is a cauldron. It is a microcosm of societal tensions, where psychological distress is at its most intense. Racism and issues of privilege and power play out in various ways.

Making the time to develop more reflective capabilities during a toxic time for our society means all of us – patients included, need to create safer environments for staff and for patients.

I have just seen the first Union Jack flag on our road, fluttering from a garage door. Dead opposite a family of black people. Right next to an Asian family. Last week, a friend was racially abused.

If patients are provided with the opportunity to help, I think they can.

Good luck with the work.