References

Crocker JC, Boylan AM, Bostock J, Locock L Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study.. Health Expect.. 2017; 20:(3)519-528 https://doi.org/10.1111/hex.12479

Ferner RE, Huson SM, Evans DGR, 1st edn. : Springer; 2011

Hofman KJ, Harris EL, Bryan RN, Denckla MB Neurofibromatosis type 1: the cognitive phenotype.. J Pediatr. 1994; 124:(4)S1-S8 https://doi.org/10.1016/S0022-3476(05)83163-4

NHS England. Patient and public participation in commissioning health and care: statutory guidance for CCGs and NHS England.. 2017. https://tinyurl.com/mrxex6ev

North KN, Riccardi V, Samango-Sprouse C Cognitive function and academic performance in neurofibromatosis.. 1: consensus statement from the NF1 Cognitive Disorders Task Force. Neurology.. 1997; 48:(4)1121-1127 https://doi.org/10.1212/WNL.48.4.1121

Rietman AB, van Helden H, Both PH Worries and needs of adults and parents of adults with neurofibromatosis type 1.. Am J Med Genet A. 2018; 176:(5)1150-1160 https://10.1002/ajmg.a.38680

Facilitating patient and staff collaboration

24 October 2024
Volume 33 · Issue 19

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.

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