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How experts by experience are shaping mental health services

Volunteers influencing change at a large mental health trust have been well received by staff

One mental health trust is ensuring that service users’ past experiences help influence change


Picture: Alamy

When Alison Brabban took on the role of recovery lead at a large mental health trust, she knew that changing the culture would not be simple.

Tees, Esk and Wear Valleys NHS Foundation Trust wanted to focus care on the needs of individuals, to help them live their lives as well as possible – to look at the person, rather than the label. But how was this to be achieved?

‘I was thinking about how you change people’s values, and that made me think about my own values,’ says Dr Brabban. 'One of the things that struck me was that change in me had been down to listening to the narratives of people who had used mental health services, particularly those in the Hearing Voices Network.

Service users training staff

‘I realised that we need staff to hear from service users. When you are changing hearts and minds, you need to make that emotional connection.’

The result of this thinking was an expert by experience programme, set up in 2014, which involves training people who have experience of using mental health services to work alongside staff with the intention of keeping the service user’s needs at the forefront of everyone’s minds.

The philosophy is similar to that of peer support workers – individuals with relevant experience who are employed to support current patients or service users. The big difference is that the experts by experience are working with staff, rather than directly with service users.

Their role can involve anything from delivering training or one-to-one advice to staff or individuals to informing plans or the strategic direction of the trust.

‘We stick our noses in’

From small beginnings – the first cohort of around ten experts by experience has now grown to more than 50 – the programme is now spreading throughout the large trust, which has around 7,000 staff and provides mental health and learning disability services across a large swathe of the north east of England.

‘We stick our noses in wherever we can,’ says a smiling Sally Smith, who was in the first cohort and is now employed as one of two experts by experience co-ordinators. Her job involves supporting the recruitment and training of experts by experience, and deploying them to opportunities across the trust.

‘When you are changing hearts and minds, you need to make that emotional connection’

Alison Brabban, recovery lead

The other major part of her role involves drawing on her own experience to influence strategy and policy throughout the trust – for example, she and the other co-ordinator sit on committees that are important in the governance structure of the trust.

Speaking from experience

Ms Smith says the experts by experience are helping to ensure that those with experience of using services are involved in developing services with staff.

‘The long-term wish is that we blur the boundaries between “them” and “us”. After all, we have around 7,000 staff and about a third of them will have accessed services themselves,’ says Ms Smith.

‘But the problem is that we don’t have a culture [in the health service] where that is valued. We’re trying to change that culture – and  if we can’t get it right in a mental health trust, where can we get it right?’

The volunteer experts receive six days of training and receive a £20 honorarium and travel expenses where appropriate.

Early life experience

They have been well-received by staff, says nurse consultant Valentina Short, who says she is impressed by the scheme. ‘I’ve been working closely with one of the experts by experience and it’s been brilliant,’ she says.

‘Our trust has a firm intention to be trauma-informed, that is, we understand the impact that early life experiences can have on individuals, and we want to embed that in our clinical pathways. We want staff to understand that they should ask “what happened to you?” rather than “what’s wrong with you?” and that they should listen and validate that person’s experience.’

She and one of the experts by experience, called Mark, have been working together to train 14 teams, made up of a range of clinical and non-clinical personnel, including nurses.

‘It brought the issues home’

‘We developed what we wanted to do in training, and at first I took the lead in the training sessions. But as our working relationship grew, and his confidence grew, he began to take the lead. The impact on staff was incredible – the training got really good feedback, but he got better feedback than me,’ she says with a laugh.

‘The process involves listening to and validating someone’s experience, and what is more powerful than that?’

Valentina Short, nurse consultant

Staff were generally receptive, she says, although she concedes that some reacted with surprise initially when the trainers were introduced. They soon realised the value of hearing  firsthand of Mark’s experiences – good and bad – in his contact with mental health services.

‘What Mark said made it real for them – it brought the issues home,’ she says.

One example involved talking about dissociation, Ms Short explains. The charity Mind describes this as being a way in which the mind copes with too much stress by ‘disconnecting’ or dissociating from the immediate world around you or from yourself.

The art of not being present

‘In Mark’s words, it’s the art of not being present – when “bad stuff” happens, you dissociate from it,’ Miss Short says. ‘It’s a learned art of escaping, and it can become automatic, perhaps triggered by things like smells or fights. This can be difficult for some staff – they find it difficult to understand.’

Staff also found it hugely beneficial to be able to ask questions. ‘Over the years I’ve done a lot of training, with positive feedback. But working with experts by experience, I was surprised at how powerful it was.’

Ms Short has also been involved in training people at the trust’s recovery college for service users and staff on topics such as how to get a better night’s sleep. Again, it was run jointly with an expert by experience, called Fiona. It was, she says, less ‘intense’ than the trauma training, but equally successful.

Listening and validating

It was also educational for Ms Short herself. ‘One thing I have learned is that it’s okay to let the expert by experience lead – apart from anything else, it gives a good message to staff. I hate to use the word empowerment, because one person can’t “empower” another – people empower themselves – but the process involves listening to and validating someone’s experience, and what is more powerful than that?’

Involving experts by experience in strategic and organisational development at the trust is also crucial, she believes. ‘It enriches what we’re trying to do. You get stronger, more empathetic messages if you have the actual people there.’

The programme has parallels with similar schemes run by the Care Quality Commission and a charity with the same name, though is not connected with them.

Although the scheme is still fairly new, Ms Smith can already point to concrete successes. For example, experts by experience were involved in a project aiming to reduce the use of force and restraint.

‘Using our experiences, we identified that the project had not included chemical restraint in its scope and therefore there was a risk that this would increase [if measures were taken to prevent physical restraint]. As a result of our participation, chemical restraint was included in the project.’

‘It is vital that people feel they are being listened to’

Dr Brabban

Dr Brabban agrees that the programme has been generally well-received – and says the experts by experience make a contribution in some places that might not necessarily be expected, such as functions like IT.

‘It’s not just aimed at clinicians and corporate staff,’ she stresses. For example, service user views on giving community nursing staff tablet computers for notetaking identified that some people might not feel they were being listened to if the nurse was using a mobile device.

‘The patient experience is improving’

‘It’s still early days, but already some things have changed,’ Dr Brabban says. ‘For example, a number of services are now open to employing people with lived experience. Recovery is talked about a lot more these days.

‘Whether that means things are changing on the ground is another matter. But I would like to say that the patient experience is improving – in particular, that service users feel they are listened to.’

Early insights for students

Nursing students are getting an early insight into the Tees, Esk and Wear Valleys NHS Foundation Trust through its experts by experience programme.

Co-ordinator and expert by experience Sally Smith explains that the trust has linked with Teesside and York universities to ensure that every nursing student on placement receives three hours of training under the programme. The sessions include encouraging students to spend more time thinking about their values and practice, and the benefits of reflection.

‘Everyone who comes into the nursing profession does so because they want to make a difference,’ says Ms Smith. ‘They want to feel they are doing a good job.’

‘A lot of it is about leadership’

The team also delivers ad hoc training for qualified staff, with an emphasis on promoting organisational values.

Getting senior management buy-in is key to successful implementation of programmes such as this one, trust recovery lead Alison Brabban says. ‘One of the things we have learned is that a lot of it is about leadership, and the commitment of the organisation.'

She adds: ‘The chair of our trust is committed to recovery, so it’s coming from the top – it’s a joined-up approach from the top, and it’s part of the trust’s business plan. That is very important.’


Jennifer Trueland is a freelance health journalist

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