Meaningful service user involvement is about give and take, says Mark Pryke.
My role is to help increase opportunities and choices for service users. The more options we can offer people in terms of their treatment and structured activities, the more likely they are to choose one.
We want to avoid things being done to people, so the development of services should be an organic process – it’s all about collaboration. I enjoy hearing about service users who have stood up and said, ‘you need to hear this’. It’s important to be receptive when a service user wants to say something and needs an answer.
People sometimes misinterpret service user involvement (SUI), believing it to mean that service users can have anything they want. In practice, because of regulations, safeguarding and resources, we can’t always respond to every request as service users would like – but what we can do is give honest and frank reasons why we can’t take an idea forward. This helps people to understand the reasons why they don’t always get what they ask for.
I help people to share stories about what their challenges were and how they got round them. This can be incredibly motivating to tell and hear. I also attend communities and partner meetings – sharing the SUI approach and the ways it can be used to create positive change.
We need to make sure that the service user involvement feedback loop works effectively. Service users participate in surveys and changes, but often they don’t hear what’s happened to their input or the outcomes and results. This devalues the system. So when we have an outcome, we need to share it.
Anyone can be a service user rep and often they are ex users of the service. Reps support a more flowing and honest conversation as a staff presence may influence service user responses. You are more likely to share your story with someone like you. The regional SU councils come together to discuss and share resources, and the network helps people to talk to others in a safe and supported way.
Our services attract people from many different backgrounds, enabling us to access a massive bank of information – people with a wealth of knowledge and experience to whom we can ask questions and vice versa, and whose experience and creativity can help other people overcome their challenges. Service users get fulfilment from giving back and knowing they, and their opinions, are valued too.
Their feedback can also influence practice. Last year we became aware that service users were having difficulty getting their medication if they moved away for a few weeks or went on holiday – their prescription needed to go with them. Service users would come in say, ‘I’m going on holiday on Monday and I need my prescription sorted,’ and wouldn’t be happy that we’d need more time.
To help resolve this we developed a ‘Going away on holiday’ poster to make it clear we needed four weeks to make arrangements for them to continue their treatment. We consulted on the poster with regional services and our national service user committee and the feedback helped us develop a clear visual and catchy strapline that tackled the problem effectively.
We’ve also redesigned our waiting areas, adding toys for people who need to bring along their kids and bike racks so people can cycle. Suggestions come through at a local level and then managers decide what’s most appropriate for their service.
We should be asking questions in the places where service users go. We need to reach out using methods that are engaging, and improve our digital offer. People don’t want to give their time without seeing the benefits or receiving some other type of incentive. It’s got be reciprocal.
Meetings should be structured so service users can talk about what’s affecting them and not have the agenda set for them. The agenda needs to emerge as part of the natural conversation so that they feel like they own that meeting.
Service user feedback can make a difference straightaway. For instance, in Gateshead we asked service users why they might have missed their appointments. One of the many people who had to travel right across the city to get to the service said, ‘It’s going to cost me a tenner to get the bus and it might not even turn up, so I have to get a taxi and on my way to the bus stop I’ve got to walk past the dealer or the off licence. So realistically where’s that tenner’s going go?’ Staff realised the Tesco superstore next to the service had a community bus that did a regular circuit, so they made sure service users were given appointment times that coincided with the bus timetable. Everybody wins.
We try and tailor services to meet service users’ needs but these often change and we’re learning all the time that we need to facilitate options and choices. There are still many cohorts of service users who we’d like to hear from, such as individuals who access our street outreach services. We can’t shirk the challenge. Instead we can work towards this in little steps, so it’s meaningful.