Towards more effective and sustainable models of community neurorehabilitation: an opinion article
Written by Dr Zoe Fisher (Consultant Clinical Psychologist, Community Brain Injury Service, Swansea Bay Health Board; Associate Professor, Health & Wellbeing Academy, Swansea University) and Dr Andrew Kemp (Associate Professor, Swansea University).
Neurorehabilitation is defined as ‘a complex medical process, which aims to aid recovery from nervous system injury, and to minimize and/or compensate for everyday difficulties resulting from it’. While neurorehabilitation is clinically effective and cost effective, access to services is not yet equitable across Wales. Where services exist, there are varying delays before which neurorehabilitation can begin, there is no uniform model of service provision and not all professionals can be accessed particularly psychology. There is currently a lot of work going on within NHS Wales and the third sector to address these gaps in service provision.
Models of neurorehabilitation typically focus on reducing impairment or compensating for difficulties following brain injury. This approach may be a legacy of the ‘acute medical model’ which was designed to treat acute healthcare problems. The acute medical model is underpinned by assumptions that a person’s problem can be fixed and that the person can be returned to a ‘pre-injury state’. Often this is not possible following brain injury: despite attempts to reduce or compensate for impairments, services users must still live with pervasive cognitive, emotional, physical and social difficulties, which fundamentally impact on identity and wellbeing (Gracey et al., 2009).
When we asked our service users what they wanted from neurorehabilitation, their message was clear; they wanted support to rebuild a meaningful and purposeful life. They wanted opportunities to use their remaining strengths and they wanted to feel valued. One service user described ‘existing not living’ post brain injury and another described ‘he felt that he was watching his life as an audience member, but did not feel part of the show’. Many described being unable to return to work or engage in hobbies they used to enjoy. They described the negative impact that brain injury had on their families, friendships and social networks. Many felt they had lost purpose and meaning in their lives and felt lost and isolated. In short, our service had been working on reducing impairment, but not on improving wellbeing, and our service users needed more than this. They needed a context to experience wellbeing and to use their strengths and they needed both opportunities for meaning in their lives and help to integrate into their communities. As eloquently stated by Robin Dunbar (2010), “Community, is the beating heart of life, and we neglect it at our peril.”
Underpinning the medical model is the assumption that health and wellbeing is synonymous with the absence of illness. This couldn’t be further from the truth. There is now a substantial body of emerging research which suggests that people can experience health and wellbeing despite living with chronic conditions given the right circumstances. In order to better understand these circumstances, our clinical team established a partnership with Dr Kemp and academic colleagues from Swansea University. Together, we carried out and published an extensive literature review and developed a new theoretical framework of wellbeing (Kemp et al., 2017). In short, our frameworks suggest that key aspects underpinning wellbeing are positive psychological experiences (meaning and positive emotions), positive health behaviours (diet, exercise, sleep etc), social relationships and social integration. In 2019, we further refined this model highlighting the importance of interconnectedness across individual, societal and environmental domains. We then designed our clinical services to deliver traditional neurorehabilitation in combination with interventions that promote factors critical for the experience of wellbeing. This included a novel psychological group therapy that is facilitated by clinicians, academic and the service users themselves. The intervention is designed to teach techniques to help build wellbeing rather than simply reducing psychological distress. Community integration, is at the heart of all community rehabilitation efforts and our frameworks show that being connected to others, the community and the environment facilitates long term wellbeing and resilience. As the effects of brain injury are long lasting, facilitating effective community and social integration in neurorehabilitation is critical. This requires awareness of the impact of brain injury in the community and establishing networks with community providers and third sector organisations which create the context for long term wellbeing and resilience underpinned by robust theoretical frameworks. Our clinical team have now developed an extensive network of partnerships with community providers to bridge the gap between the health service and the local community. In partnership, we have developed a range of interventions designed to create a context for important aspects of wellbeing (positive psychological experiences, health behaviours and social relationships and integration). We now work with many different partners including for instance ‘Bikeability’, ‘Surfability’, a sustainable construction company called Down to Earth, Mi-Space – another construction company, Nordoff Robbins (music therapy) and the Swans Trust. In addition to traditional neurorehabilitation, service users are now able to gain qualifications, volunteering roles in the community, university and NHS as well as opportunities for paid work. In keeping with this work, our colleagues in North Wales Brain Injury Service and Bangor University, are also carrying out research into the impact of social isolation and loneliness following brain injury; highlighting the importance of more holistic models of neurorehabilitation.
Our key message is that there is a need for people living with brain injury to be able to access timely and comprehensive neurorehabilitation services that address holistic and long-term needs. Our models must move beyond focusing on impairment and explore how to create opportunities for resilience and wellbeing to help people rebuild meaningful and purposeful lives. To this end, we highlight the value of effective university/ health board partnerships in developing effective models of neurorehabilitation and wellbeing. We also highlight the value of health board/ community partnerships in the effective and sustainable delivery of neurorehabilitation to support long term wellbeing and resilience. Finally, we highlight the critical role of our service users in helping to support such work by drawing on their many talents and strengths.
We stand together with our partners from SameYou and colleagues from across Wales, united in our ambition to raise awareness of brain injury and improve neuro-rehabilitation provision. We are very grateful to SameYou for sharing their platform with us in order to raise the profile of brain injury in Wales. We thank all of our service users, their relatives and our partners for their support in this event.