Asking the real experts

October 4, 2018



What do you think when you hear the term service user involvement? How about co-production? Or collaboration? Whatever the term used, many people will be familiar with the concept of involving people who use services in the design and delivery of those service. It challenges the assumption that people who use services are passive recipients of care and it requires a shift in power dynamics, enabling people who use services to have more choice and control. It is a key aspect of person centred care and should be used to ensure people with learning disabilities are listened to. The reality is, of course, that this does not always happen and I am still surprised by how frequently we find commissioners or organisations making decisions without involving people who use services.


The SPICE group at Future Directions CIC is helping to change this. SPICE stands for Supporting People into Community Employment. They originally formed when several people supported by Future Directions CIC, all with learning disabilities, got together after struggling to find paid employment. They are not alone. According to research only 6% of people with learning disabilities are in paid employment. Daniel, one of the original members of SPICE says that it was very daunting, but after a chat and a brew they discovered that each person in the group had experience of using health and social care services and therefore decided to find employment using these skills. It was a win-win; they would use their experiences to offer training and support and they would get paid in the process. Thus, SPICE was born.


SPICE started of small but over the years they have grown from strength to strength. A huge part of the success of SPICE has been the relationship they have developed with Salford University where they contribute towards the Learning Disability Nursing and Social Work programme. They provide teaching sessions, take part in simulation, and form part of the interview panel to decide who gets a place on the course. They share their knowledge and experiences and can tell you how it really is, because of their direct experiences of using services, they have a unique insight into what works, and what doesn’t.


Salford University work with SPICE to ensure that everyone understands their role, and it is not just another box ticking exercise, but is genuinely meaningful. When we do the simulation work, we develop scenarios based upon individuals’ experiences whilst also depicting areas such as communication, behaviours that challenge, working with families, mental capacity and safeguarding. Charlotte, a first year student on the course, said that the simulation work has been really useful for her learning and has enabled her to put the theory she had learnt into practice and has been really important for her learning and development.


The benefits to SPICE has been vast: For Stevan “having a job makes me feel good. I look forward to pay day every month”. However, having a job is about more than earning money. Yes the extra money offers greater independence and does make a big difference to people’s lives, but most importantly, having a job gives us “something to do”, and as Abby explained “it gets me out of the house and makes me feel better… its fun”. Delwyn says that working with SPICE has given him a purpose. He explains “We’re involved in so many different things. We feel like we’re helping and making a difference. I help people to learn.” Daniel added to this saying “it has helped me. I have developed new skills and have grown in confidence”.



Lots of organisations talk about ‘service user involvement’ but together with Salford University we are making it a reality. The work we are involved in empowers people with learning disabilities to make a real difference and improve services. The quality of care that people receive is a direct result of what healthcare professionals have learnt on courses such as these. Daniel explained that “we’re teaching the professionals of tomorrow and are therefore making a massive difference to the care that other people with learning disabilities will receive”. It is a perfect illustration of just what can be achieved when an organisation takes ‘service user involvement’ seriously and the difference it can make not only to people living with learning disabilities today, but also to the future of health and social care.


Jennifer Neville

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