Adult Care Service Consultation

As you will be aware we have been working closely with the NHS to have a fully funded Adult PCD Service to follow on from the excellent Paediatric Management Service that is already in place. We are asking (after already consulting you on numerous occasions in the form of questionnaires, face to face at PCD Days and comments on our discussion boards) the NHS for the following:-

This service should provide a specialised management service for adult patients with PCD. The core objective of this service is to ensure that all patients with PCD have access to the optimal standards of care to enable a reduction in the morbidity and mortality associated with the condition. The service aims to:

1. Ensure that all PCD adult patients, wherever they live, have access to and are managed according to optimal standards of care, by ensuring:

  • a: all PCD adult patients have an annual review by a specialist PCD MDT consisting of a PCD specialist consultant, physiotherapist, nurse specialist and ENT specialist with access to a dietician, psychologist and social workers as needed.
  • b: all PCD adult patients have access to appropriate home and inpatient antibiotic services
  • c: care and management of patients with PCD is coordinated so that patients receive appropriate respiratory, ENT, cardiac, obstetric and physiotherapy care, fertility advice, palliative care and care for other conditions associated with PCD.
  • d: patients/families and other health professionals are educated on the implications and management of PCD.

2. Raise awareness in the Adult Respiratory community about the diagnosis of PCD to ensure that these patients are transferred from bronchiectasis clinics to the PCD specialist service to monitor their condition and limit disease progression.

3. Reduce the morbidity and mortality related to PCD, as well as the economic burden, associated with late diagnosis and poorly managed disease.

4. Enter patients into a national database (which will help with research and for better understanding of the disease progression).

The proposal has now been put to public consultation and we would like as many of you as possible to comment as possible. There are not many questions to answer and please answer them as honestly as you can. If you need any help then please contact us (Help Line 0300 111 0122 cost of local call from landline or via email You have until April 23rd to complete the survey.

We believe that this service really will improve the lives of PCD Adult patients and appreciate your support in our endeavours to get the service funded.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.