Last updated on 01/06/2020 – updated on a regular basis

Coronavirus: Advice for individuals with Primary Ciliary Dyskinesia

Recent update

People with CF are currently shielding and  remain vulnerable. As such they should continue to take precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household. Ideally, this should be the same person each time. If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart.

NHS England update>>>

In light of the Coronavirus outbreak, we will be stopping all routine and non emergency Primary Ciliary Dyskinesia face to face clinics. We will be doing online phone or video consultations around the time of your pre booked clinic appointments using our electronic patient records.  Please make sure you answer your phone and if you have recently changed your mobile number please update us. Online clinics will take place on the same day as your previously booked clinic.

Please ring us during the day and don’t leave things for out of hours where possible.

Urgent face to face appointments will still occur when urgently needed.

1. Please make sure you have a two week emergency supply of an oral antibiotic at home so that you can start this immediately if you develop any of the following: a fever, cold or flu-like symptoms or a new/worsening cough.

2. We have relocated key clinical trial visits to Seacroft. Most visits will be held online. The Research team will contact you about any changes.

3. If you do develop any of the above symptoms, you need to go to the NHS 111 website for advice as to whether testing for coronavirus is indicated. Testing for coronavirus is accessed via the 111 service and not via your GP or your specialist team at St James’s University Hospital in Leeds. After you have sought advice please keep us informed straight away as if you are unwell we may need to arrange further treatment.

4. Anyone with a high temperature or new continuous cough must stay at home for at least 7 days from when their symptoms first started. Anybody who is living with the person who has become unwell must also stay at home and not leave the house for 14 days. If there is any adult with PCD, or a child with PCD who also has significant underlying chest problems in such a household, arrangements should be made where possible for them to stay with friends or family until this home isolation period has finished. If this is not possible, then follow the specific NHS advice for if you have a vulnerable person living with you.

Please follow National Guidelines

• You should avoid social activities and close contact with other people. STAY AT HOME
• Self isolation
• Work from home
• Maintain excellent hygiene, particularly hand washing with warm water and soap for at least 20 seconds.
• We strongly advise that you take all of your regular prescribed medicines and perform your chest physiotherapy so that you are in the best health possible if you do catch a viral infection.

Please do all your treatments including airway clearance. Please stay safe and lets get over this together!

Regularly updated advice available from

Leeds Teaching Hospitals
NHS
PCD support 

Welcome to the Leeds Specialist Primary Ciliary Dyskinesia service

The Team

Prof Daniel Peckham (Consultant)
Dr Ian Clifton (Consultant)
Dr Giulia Spoletini (Consultant)
Dr Evie Robson (Research Fellow
Alison York (CF Nurse Specialists)
Rita Mele (CF Nurse Specialists)
Niccola Burke (CF Nurse Specialists)
Emma Franks (CF Liaison Support Worker)
Leanne Higgins (CF Liaison Support Worker

The Leeds Primary ciliary dyskinesia service was set up in 1998 and provides secondary and tertiary care for people with PCD living in Leeds and west Yorkshire region.

The consultant team

The clinics are run by Prof Daniel Peckham and Dr Ian Clifton who both have specialist interest and training in the management of bronchiectasis and PCD. The clinics are supported by specialist nurses and a new Physio is due to be appointed in 2020.

Outpatient service

A dedicated bronchiectasis clinic is held every other Thursday afternoon at Seacroft Hospital.  At each outpatient visit, a patient undergoes sputum analysis, respiratory function tests, oxygen saturation monitoring, weight and height measurements. The service is supported by a specialist nurse.  Patients can review their results in graph format and a clinic letter/report is sent to both the patient and their GP.

Port flushes, end of home IV antibiotics and annual assessment are undertaken in the outpatients.

Emergency access

Emergency drop-in arrangements are in place both in the outpatient clinic and on the ward for those who are registered on the home IV program. Telephone advice is available to both GP and patient.

Home Care

The Clinical Nurse Specialist team, run the home IV service and aims to encourage self-care and responsibility. A formal process of assessment is undertaken to ensure suitability and safety.

Links to key services

The PCD team works closely with a large number of specialist clinics, including microbiology, vascular radiology, immunology, ENT and rheumatology.

Nebuliser service

Patients undergo a formal nebuliser trial with pre and post lung function before starting new nebulised medication.  A clear guideline for the indication and dosing schedule for nebulised antibiotics has been developed.

 National audit

The Leeds unit  submits national audit data. The service is run using e records.

About

Primary Ciliary Dyskinesia (PCD) is an inherited condition associated with the abnormality of cilia.

PCD Family Support Group >>

British Lung Foundation >>

Outpatient

Seacroft Hospital
York Road
Leeds
West Yorkshire
LS14 6UH