Change Grow Live – health and social care charity

An interview with Mark Pryke, National Service User Lead

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An interview with Mark Pryke, National Service User Lead

27 November 2018

What are your favourite aspects of the role?

My role is to help increase opportunities and choices for service users. The more choices and options we have to offer to people in terms of treatment and structured activities, the more likely they are to choose one.

We want to avoid things being done to people and 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”. That is organic Service User Involvement (SUI). It is important to be receptive when a service user wants to say something, they need an answer.

People sometimes misinterpret 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 us to, but what we can do is give honest and frank reasons as to why we can’t take an idea forward. This helps people understand the reasons why they don’t always get what they ask for.

Sharing feedback across the organisation

I help people share their 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 cycle of service user involvement feedback loops work effectively. Service users participate in surveys and changes, but often they don’t hear the outcomes and results. This devalues the system. So, when we have an outcome, we need to share it.

How do you choose service user reps?

Anyone can be a service user rep and often they are ex-service users. Service user 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 else who is like you.

The regional service user councils come together to discuss and share resources - this is a network that exists to facilitate people talking to others in a safe and supported way.

How does service user feedback help to support research?

We offer lots of different services, attracting people from all different backgrounds. This has enabled us to access a massive bank of information – people with a wealth of knowledge and experience, who we can ask questions to and vice-versa. If central or specialist teams want to work with specific type of service user, I help connect them, or if they are on a tight turnaround we can ask the Service User Committee to act as experts by experience.

Service users get fulfilment from giving back and knowing they are valued and their opinions are valued too. Never underestimate the creativity of service users especially in regards to how they have overcome their challenges and how this can help other people overcome challenges too.

Can you give us some examples of research you have undertaken with service users?

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 needs to go with them. Service users would come in and say, "I’m going on holiday on Monday and I need my prescription sorted". We’d say, “Well, we need two weeks.” and they’d say “What?!”.

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 the national service user committee, this feedback helped us develop a clear visual and a catchy strapline - helping us solve the problem.

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 is most appropriate for their service.   

What are the best ways to get feedback from service users?

We should be asking questions in the places where service users go. We need to reach out to service users 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.

Can you give us an example of good service user feedback?

One of my favourite examples of how we used service user feedback came from Gateshead. This is a big area and many service users lived in West Gateshead, which meant people would have to travel right across the city to get to the service.

We asked the service users why they might have missed their appointments. Service users 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 going to go?”

The staff realised that next door to the service is a Tesco superstore with a community bus that goes to and from the location on a regular basis. So the staff made sure the service users were given appointment times that coincided with the bus timetable. People could get on and off the bus, go to the appointment - everybody wins.

What do you think are the challenges of Service User Involvement?

We try and tailor services to meet service user needs, but these can change quite regularly. We are learning all the time that we need to facilitate options and choices for services.

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.