‘Good practice starts with kindness’: meet the mental health experts by experience

Andy McNicoll meets two people who are using their own experience of the mental health system to drive improvements in care

Picture credit: quinn.anya (Flickr)

In local authority and NHS meeting rooms across the country discussions of mental health good practice are dominated by talk of ‘integration’, ‘care pathways’ and ‘person-centred planning’. For people who have gone through the experience of being detained under the Mental Health Act and compulsory treatment, the basis of good care is simpler. 

“It can be very challenging supporting people who are unwell. But when you see staff consistently being kind, it stands out” Peter

“Kindness cuts through everything,” says Peter, who has a severe and enduring mental health condition and has been sectioned a number of times.

“It can be very challenging supporting people who are very, very mentally ill. I can say that because I know I am difficult at times. But when you see staff consistently being kind, being polite, just very, very good contact with people, it stands out.”

Kate, who has been involved with mental health services for the past 30 years (“I have bipolar affective disorder – I don’t like that word. I prefer manic depression”), agrees. She remembers one patient telling her that no matter what the conditions on a ward are, “as long as people are kind that’s what matters”.

“On some wards there’s a real ‘us and them’ feeling. The staff are in the office and just let patients get on with it. Whereas I’ve had really good practice myself where staff have been out in communal areas. They’ve taken time to sit and have a chat. Not just ‘have you taken your medication’ and the tick box stuff,” says Kate.

“If you’ve been on the receiving end of good practice you know what it feels like. I think, why can’t everyone have that?” she adds.

“I don’t like going into a bath that’s dirty. If I don’t like it, why is it good enough for a patient? At the same time you can look at a staff toilet and shower and it’ll be immaculate” Kate

The inspections

This passion for improving care led Peter and Kate to sign-up to the Care Quality Commission’s experts by experience programme. For the past two years, both have been part of CQC inspection teams that monitor the use of the Mental Health Act in services across England.

At a typical inspection, Kate and Peter will focus on talking to patients about their experiences of services. It’s a vital component of the regulatory system. As Kate says, “no member of staff with half a brain cell is going to be abusive to patients in front of inspectors. I rely on patients telling me what is actually going on.”

They’ll ask about how supportive staff are, any problems patients have had, what the food is like, what activities there are on the wards (if any). They will observe practice and make a point of using the patient toilets, checking the kitchens and state of the fridges too.

“If you’re living on a ward seven days a week, you want cleanliness. You want to know that the toilet is clean and has toilet paper,” says Kate. “I don’t like going into a bath that’s dirty. If I don’t like it, why is it good enough for a patient? At the same time you can look at a staff toilet and shower and it’ll be immaculate.”

Peter says that having been on the receiving end of care, experts by experience can “spot things that other people haven’t thought about.” He points to the fact that something like meals can be such an important way of bringing structure to the day when you’re unwell, particularly in the absence of other activities.

On a recent Mental Health Act inspection Kate noticed that the service didn’t have food available after 6pm as the kitchen staff had gone home. She pointed out to the service managers that a patient might be admitted at 8pm having previously been in A&E for four hours so they may not have had a hot meal all day.

“They said ‘well patients can have toast’ and I said ‘I’ve been on wards. I know that depending on who the staff are that night I might get that toast or I might not but I might also need a hot meal’,” she says. “At the end of the session the medical director came up to me and said ‘thank you. It was so good to hear from someone with a different perspective’.”

“I feel part of a team. I’m not a patient, I’m not a client, I’m not a service user. I’m part of the team. For me, that’s really good and I think other people should experience it” Kate

Is kindness cutting through?

If kindness is the basis of good care, to what extent do Kate and Peter feel that it is cutting through in mental health services at present? The question prompts sharp intakes of breath.

Both say they have seen some “chronic practice” – doctors telling, rather than asking, patients how they feel; wards where every patient door was locked during the day forcing people into the communal area with “no escape”; unhygienic and, more commonly, understaffed services.

But it’s far from all bad. Kate knows from experience that “sometimes when you’re a patient, if you have had bad practice you only remember that. You don’t always remember the good care”. She says there are plenty of examples of excellent services that her and the inspection teams she’s been part of have witnessed.

For example, recently Kate visited a continuing care ward that was “really clean”, the staff were out talking with patients and plenty of activities were going on.

“It was an unannounced inspection so they didn’t know we were coming. Some of the staff had moved furniture so that they could play football with one of the guys,” she says. “There were no visiting times, the relatives could come any time. They were welcomed and encouraged to visit. You felt it was a caring ward. You could just sense they cared.”

Likewise Peter was “blown away” by a trip to a secure unit where the Patients Council demanded to see the inspection team. The service had a farm shop, and other projects, and patients told him that they felt it stood out from other services because staff “care about you here”.

He also recalls a recent visit where a nurse was running a competition for patients to guess the name and weight of the (at the time imminent) royal baby.

“It was absolutely brilliant. It was current, it was fun. People were all chatting about it, they were all engaged. You could just tell she loved her patients,” he says.

Staff need time

What do Kate and Peter feel would help improve the quality of care on wards?

Peter says a big issue is the lack of time staff have to spend with patients. At a recent inspection he asked a patient if they would like a nurse to talk to her about what schizophrenia is. The patient said “she’d love to but they never have any time. They’re always in the office and are really busy.”

“It was true. They were in the office and they weren’t gossiping about Coronation Street, they were avidly working at computers. The simple thing is that if you spend time with patients that can help them more than anything, it can help them understand what is going on,” he says.

“And it isn’t that the staff are bad. It’s just the way that we’ve created things means that the thing that helps – which is spending time with patients – they aren’t doing enough of.”

“Experts by experience are absolutely vital to our work. Our experts will ask questions in a different way to our inspectors, they will ask different questions. It brings a strong focus on the views and experiences of people” Nigel Thompson, CQC

Being an expert by experience

How have Kate and Peter found the job of expert by experience? Is it something they’d recommend to other people with experience of the mental health system?

Peter says the role has showed him the value of “all of these years of experience” of being ill. Having been on wards and gone through things like the Mental Health Act detention process he’s able to communicate with people going through the same things, in a way that professionals can’t.

“I can say ‘I know how painful that is’ to someone, and mean it. Suddenly it is beneficial to have been there,” says Peter. “Whereas previously I often felt bipolar was the curse of my life. Now I don’t want to take my illness away. It’s part of me and now my experiences can benefit others too.”

Kate admits that there are times the role can be hard. Seeing bad practice, or even just things on wards that trigger flashbacks to your own care, can be distressing.

The support she has received from Choice Support – one of the organisation’s contracted b CQC to provide experts by experience – to talk through difficult inspections is invaluable.

“If I didn’t have that support I don’t think I could do the job,” says Kate.

“I’ve had support from some excellent inspectors too. On one inspection I was really depressed by the state of the ward. Afterwards the inspector gave me a lift to the station. She sat with me to make sure I was OK and phoned the next day. Not every inspector is that supportive but they’re getting used to working with us too.”

But, Kate says, being an expert by experience has been a positive experience. It has helped her develop personally and feel like she’s “contributing something” to improving mental health care.

She also feels that working with social workers, psychiatrists and chartered psychiatric nurses helps break down “the us and them mentality” that can too often drive a wedge between patients and professionals.

“It makes me see their perspective and hopefully helps them see mine,” she says. “I feel part of a team. I’m not a patient, I’m not a client, I’m not a service user. I’m part of the team. For me that’s really good and I think other people should experience it.”

is Community Care’s community editor

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