Health CommitteeWritten evidence from the Pemphigus Vulgaris Network (LTC 15)

The Committee is exploring the scope for more people with long-term conditions to be treated in the community and outside hospital. We quite understand the move towards treating more people in the community but think it is entirely inappropriate and potentially dangerous for those of us with rare and life-threatening dermatology conditions.

The Pemphigus Vulgaris Network wants to stress that treating us in the community and outside hospital is not what people with pemphigus vulgaris need.

Given that pemphigus is a volatile and life-threatening dermatology condition, we need our medical care to continue being treated in a hospital setting (ie following British Association of Dermatology guidelines).

Few GPs have ever had a pemphigus patient (it is an orphan disease) and whilst we need our GPs to be looking after our general health, especially given the possible side effects of necessary immuno-suppressives, the treatment for our condition needs to be determined by consultant dermatologists.

Indeed, if the pemphigus is not responding to standard drug regimens, this care may need (at various points) to be with consultant dermatologists who specialise in, and have a particular interest in, blistering diseases—as is being currently defined by the work of the NHS Specialised Commissioning Board.

To sum up: treatment in the community, outside a hospital setting, could put the lives of pemphigus vulgaris patients at risk.

8 May 2013

Prepared 3rd July 2014