Speak up

"When patients are ignored, they are most at risk,” so concluded the report by Robert Francis QC into the scandal at Staffordshire hospital, where hundreds of people died as a result of poor care. The report was articulating a shift in attitudes and understanding which has grown since the start of the 21st century, centred on empowering the patient.

Patient activism has become increasingly pervasive and influential across the world, and Scotland’s Person-Centred Health and Care Collaborative, coordinated by Healthcare Improvement Scotland, is starting to see empowerment integrated into the establishment, to realise the ambition of the NHS quality strategy: all health and social care services to be person-centred by next year.

One patient group which has grown throughout this change period is Bravehearts, a group that has campaigned for better services for people with congenital heart disorders since 1996. Their chairwoman Gil Mitan has noticed the shift in focus.

“Initially we didn’t really know where to start. We wrote letters to MPs and all that, and they sent letters back saying, yeah, yeah, yeah, we know you’re there, but it really didn’t take off,” she tells Holyrood.

The group had more success when campaigner Liza Morton fronted a petition to the Scottish Parliament. Morton and Mitan faced harsh criticism at the time from other patients who feared speaking up might jeopardise existing services, but both are now being consulted on service redesign, after their stories touched the Petitions Committee.

“At the start of all this I would have been the type of person who would not say boo to a goose, but actually I’m comfortable at doing it now, I think because when I do speak I get listened to, and it was about finding my own feet. That’s why I say to other people don’t be afraid. If you have an opinion and are not happy, whether it be in regards to your own care or someone else’s, then do speak up,” says Mitan.

Mitan is not alone in encouraging patients to speak up. The Health and Social Care Alliance has formed the People Powered Health and Wellbeing Programme to ensure people aren’t only at the centre of their care, but influential in shaping design and improvement. Programme Director Lisa Curtice says the third sector can support staff to learn to work in a new way. “I used to work with people with learning disabilities and people flipped the whole system round and started to say, ‘how do I look at this person’, and who they are and what’s important to them, and do a person-centred plan for them and see how we can source the support for them to live the life they want. I think it’s a change of that magnitude.”

Professionals must step out of an “un-blurred definition of their role” to see the world differently, says Curtice, including leaders.

Patient Opinion, a non-profit feedback website which allows patients to post their experiences online, has been welcomed by ministers as a patient-led improvement tool. Although the independent social enterprise has been running a UK-wide web service since 2005, in 2011 the Scottish Government invited it to expand its work in Scotland.

Gina Alexander, Patient Opinion’s director in Scotland, says: “When I met Mr Neil for the first time I said, ‘are you sure you want to do this? Because if a story is shared about NHS Lanarkshire and you don’t like it I’m not taking it off’, and he confirmed the independence of Patient Opinion was very important to them, and it is across the political divide.”

The feedback from patients is published publicly on the website, and health services can respond in real-time. Half of all feedback in Scotland on the site has been positive. “It is driven by the citizen, it is independent, it’s open, transparent and is focused on improvement,” says Alexander.

Not all health boards have embraced Patient Opinion. In NHS Highland, for example, Chief Executive Elaine Mead has responded personally on the website. “There was a story last week and the person was saying how terrible it was there was no support for cancer sufferers in Cowal, so it was a hard-hitting story. It went on and Vivienne, who is one of the locality managers in Argyll and Bute, responded to it. She said, ‘sorry this has happened, this is not what we want to happen, thank you for raising it and I’ll look into it. If you want to get in touch with us, maybe you could help us think a bit more about it.’ You know, very open, very welcoming, with no hint of defensiveness at all, and [NHS Highland Chairman] Gary Coutts tweeted later that night how proud he was of her. That’s what we need to see. In order for people to have the confidence to engage with that, they need to know somebody’s got their back,” says Alexander.

Another story on Patient Opinion was from a parent writing about their daughter’s transition from child to adult care. Although the story wasn’t overly critical, the middle paragraph contained the words “sadly, my daughter lost her fight for life.” The response below from the health board read: “Thank you for your feedback, we will pass it to the relevant department.”

Alexander believes it represents an attitude of treating Patient Opinion like a comms exercise rather than an improvement tool. “My role is to go back to boards and say ‘Really? You want to respond like that? Really? Remember who you’re talking to. Remember the anxiety, the stress, the horror people have been through. Put yourself in their shoes’,” she says.

The most recent session of the Person-Centred Health and Care Collaborative saw Irish patient activist Margaret Murphy tell the hall of professionals the culture of blame is different from the culture of integrity. “Systems are designed by people, maintained by people, and can be jolly well changed by people,” she said. Michael Matheson told delegates there was good work going on around Scotland, and pointed to the success of pilots where more flexible visiting hours empowered families. A roll-out of the idea across the country would lead to a “significant change” in culture, he said.

If all services are to be person-centred by next year, however, there are still significant challenges to overcome.

This is evident in the recent experience of Carmel, a patient in the Health and Social Care Alliance Scotland’s person-centred reference group. A former healthcare professional herself, Carmel lives with chronic pain and was left sitting in a hospital in agony when she felt staff prioritised her bed over her. “I wasn’t listened to. I wasn’t taken seriously. The bed was taken away to be used in another ward to blow up an inflatable mattress, while my mattress lay on the corridor outside. I was sitting in a chair in agony, and I was ignored,” she says.

Carmel attended the collaborative session with other members of the alliance’s person-centred reference group, set up to ensure representation and a voice for people who use services and carers. The group’s co-ordinator Lisa Gardner says the aim is to be a ‘leading model’ for third sector and statutory services. “Our vision is getting out there, and we’re really picking up momentum with the work we’re doing. Everyone who gets involved in it is able to get things back, such as increase their networks, be able to attend events and really build up their knowledge, and that should hopefully affect their wellbeing in the sense of them getting something back from what they’re giving to the programme,” she says.

Brian, who suffered alcohol-related liver failure after post-traumatic stress disorder, says his experience of working with a liver specialist was more positive. “It was like a wee partnership between me and the specialist. She agreed to keep me alive, and I agreed to do what she told me,” he says.

If co-production is about shared responsibility and capacity building on both sides, then citizens need to be confident and literate enough to participate. Another member of the reference group, David, says society is too disconnected. “To engage them in the health service is a hell of a hard job. I think society is broken. There’s only talk of this idea over the garden fence, and until we manage to break down this garden fence we’re not going to fix anything. Community has lost its idea of engagement,” he says.

However, former Labour MSP Irene Oldfather, who set up the Cross-Party Group on Dementia, believes person-centered approaches for dementia has led the way, and could be applied elsewhere. The language of the UN’s PANEL approach to human rights is clear to understand, she argues. “That’s P for participation, A for accountability, N for non-discrimination, E for empowerment and L for legality, so enshrining those rights, it’s quite a simple concept, and I like it, because when I speak to people with dementia or their carers about it, it’s something they understand,” she says.

The language of change must come from lived experience, says Oldfather, who remembers an example of a woman who cared for her husband and called the ambulance service after a difficult night.

“She’d been up all night, she was exhausted, and she didn’t know what to do. She knew she didn’t really need an ambulance, she just didn’t know where to go for help. The ambulance men came in, and her husband had been quite challenging and aggressive and he changed and was very nice to them. They said go and sit and have a cup of tea and have a rest and we’ll sit for ten minutes. Now, two different ambulance men could have whisked him off to hospital where he would have met a whole other series of challenges and unforeseen circumstances which would have made him even worse. In fact what happened was he remained in his own house, he saw a different face, a cup of tea and his wife got a little bit of a break while all of this happened. She said to me, ‘but why don’t we have a crisis number I can phone and someone can just come out?’ It would be an awful lot cheaper than two ambulance men and an ambulance, and in some circumstances, a whole hospital response to that. Because [from] some of the engagement work that’s been done, we know the story of dementia. It’s a story of loss, it’s a story of isolation, and when we sit and we listen to them, it’s not just about listening, it’s about hearing, and it’s about acting. We’ve got to get away from this view of just go away and have a cup of tea and leave it to the professionals and everything will be fine.”