The department I work in supports people receiving care as part of a directly commissioned highly specialist service for patients with neurofibromatosis. Highly specialist services such as this are delivered in nationally co-ordinated, expert centres and support small numbers of patients. One consequence of such specialist services is that patients have to travel long distances to attend and may not know anyone else with the same condition.
Our service at Guy's Hospital provides long-term monitoring and support for patients with neurofibromatosis. These are genetic conditions that affect the nervous system, causing benign tumours to grow along the nerves. Neurofibromatosis type 1 (NF1) is more common and involves the skin and the nervous system. Neurofibromatosis type 2 (NF2related Schwannomatosis) is less common and affects hearing and balance (Ferner et al, 2011).
Over the years, in common with other patients with complex, long-term or rare conditions, many of those attending our service have discussed feeling isolated and knowing no other people with the same condition or experiences. Patients often comment on how pleasant it is not only to be somewhere where clinicians are aware of their condition, but also to be in a setting where they are not alone in their experiences.
To improve patient experience in my role as a clinical nurse specialist, with protected time as part of an external fellowship, I worked together with a new highly specialist social worker to establish a coffee club and a forum for patients and staff who use, attend and work within our department. Both groups were designed to foster peer support and alleviate some of the feelings of isolation that patients often reported. Staff are encouraged to join the forum to foster open and equal dialogue and collaboration. By engaging together and sharing experiences as a group, we help to plan, develop and improve service delivery, because without meaningful patient and public participation (Crocker et al, 2017; NHS England, 2017) services stagnate and become less effective for service users.
After a short pilot, we reviewed the literature on similar groups and reflected on what had gone well and what could be improved on. Considering the specific needs of our patients (Hofman et al, 1994; North et al,1997; Rietman et al, 2018) and how they might best be met through a coffee club and forum led to our current programme structured over 12 months. As well as condition-specific education sessions, the following topics have been addressed: sleep hygiene, genetics, itch and skin care, introduction to the admin team, physiotherapy and how to be active, benefits and employment support/navigating the NHS, research news, how to think about pain, and mindfulness. We also took a trip to our Medicinema at Guy's, one of seven hospital cinemas designed with space for hospital beds, wheelchairs and medical equipment (https://www.medicinema.org.uk).
Difficulties in running and maintaining the group have centred around issues common in the NHS: the lack of time and money. Nevertheless, the group has become an established part of the service, peer bonds are developing among patients and regular members have been observed discussing the group with people in the waiting area to encourage them to give it a try.
Choosing artwork created by our patients to be displayed in the waiting area was a great early achievement. As well as significantly improving the quality of the waiting area, it allowed the group to feel ownership of their service and appreciate the effect that they as a group could have. The group has been so successful that we have outgrown the original space and are in the process of looking for a bigger room.