Last updated on 30/07/2020 – updated on a regular basis

Coronavirus: Advice for individuals with Cystic Fibrosis and those who are shielding

Recent update: The information is constantly changing and future plans will depend on the frequency of future cases of COVID in the wider population

Face coverings: when to wear one 

  • The government has recently updated its guidance for people who are shielding taking into account that coronavirus COVID-19 infection rates have decreased significantly over the last few weeks.
  • From 1 August the government will be advising that shielding will be paused.
  • From this date, the government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people, but you should take particular care to minimise contact with others outside your household or support bubble.
  • In practice this means that from 1 August, you can go to work, if you cannot work from home, as long as the business is COVID-safe
  • Please discuss returning to work with  your employer who should ensure you will be working in  a safe environment.
  • This information may well change so please continue to monitor NHS England update>>>

In light of the Coronavirus outbreak, we will be stopping all routine and non emergency Cystic Fibrosis, Primary Ciliary Dyskinesia and Bronchiectasis face to face clinics. We will be doing consultations around the time of your pre booked clinic  appointment.  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 / start of home iv antibiotics.

There will be no changes to the CF Unit on JO6. Visiting times will be very limited and the kitchen on JO6 can no longer be used out of precaution. 

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 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 CF, or a child with CF who also has significant underlying chest problems in such a household, arrangements should be made 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.
• 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
Cystic Fibrosis trust
PCD support 

Welcome to the Regional Adult Cystic Fibrosis Centre

We cover a large geographical area across all of the West, North and East Yorkshire out to the North Sea coast.  Our aim is to provide accessible excellent, specialist care to enable adults and young people with CF to maintain the best possible health and participate as fully as possible in normal activities and aspirations, including school, university, college, sports and work.

Inpatient care and ward services

We offer state of the art facilities purpose-built within St James’s University Hospital with specific needs of adults with CF in mind.   People with CF are vulnerable to cross-infection. These infections can pass to other people with CF, particularly chest infections so the Unit and the Ward is designed and run to minimise any such risk. The Unit is designed to facilitate effective and safe care and Inpatients receive their care in their own side-rooms with en-suite facilities. Each room has a fridge, kettle, free internet access, computer with Microsoft Office, TV and DVD player. A large selection of films are also available.

J06 – 12 en suite rooms and 5 acute outpatient cubicles.

J12 – 2 en suite rooms and 1 acute outpatient cubicle.

Outpatient care

The Outpatient Department is situated at Seacroft Hospital, York Road, Leeds, West Yorkshire, LS14 6UH.

Routine segregated outpatient clinics are undertaken three times a week at Seacroft Hospital. Patients are seen in individual rooms.

All outpatient clinics are run by a Senior Consultant with the full multidisciplinary team.  At the outpatient clinic patients would be expected to see the nursing team, the physiotherapist, dietitian and doctor.

At each appointment patients have their weight, height (if appropriate), lung function and saturations monitored.  Routine measures such as blood pressure and blood glucose will also be performed. Blood tests are taken according to requirements. However patients will have full assessments bloods and CXR annually.

Routine segregated outpatient clinics are undertaken three times a week at Seacroft Hospital. Patients are seen in individual rooms.

Home care

Over 500 courses of intravenous therapy are carried out annually at the Adult CF Unit where a team of four full-time experienced CFNS and a full time support worker cover all aspects of the home therapy programme. It is important to be aware that strict criteria need to be fulfilled by the patient before a course of intravenous antibiotic treatment can be given in the home environment. If at any time it is felt that the patient is not improving or adherence is poor, the treatment will be discontinued at home and the patient admitted for in-patient treatment. Each course of therapy undertaken by the patient is carefully monitored by senior members of the medical team. Blood results, including antibiotic levels, and sputum results are reviewed daily and any adjustments to treatment are communicated to the patient.

A system is in place to provide teaching for patients who have not previously carried out treatment at home. Some patients prefer to have several days as an in-patient taking on board all of the information required. A fast track system can be made available over a two day period where the patient attends as a day case.

The patient’s latest sputum and list of antibiotic allergies is taken into account when prescribing antibiotic combinations for the start of treatment. For patients without an indwelling port, venous access can often be the cause of great stress and anxiety. It is of vital importance that this procedure runs smoothly to minimise any long term problems for future therapy. A senior member of the team or a CF nurse specialist with experience in long line insertion should be available to ensure that problems are kept to a minimum

The present protocol dictates that the first dose of each antibiotic prescribed is administered in hospital, the patient attending as a day case. If the patient has never been treated with a particular antibiotic before, the first two doses are administered in hospital. All patients are taught how to treat any drug reaction and provided with an anaphylaxis kit.

A multi-disciplinary ward round to discuss patients on home intravenous therapy takes place weekly. All aspects of their current treatment are discussed in detail to ensure the patient receives the best treatment at all times. Abnormal blood results are highlighted and acted upon. The CFNS discuss any new problems on a daily basis with a senior member of the medical team.

It is important that any patient who has experienced problems, or about whom the CFNS are concerned, is reviewed by a senior doctor at the end of treatment. Their follow up appointment can thus be tailored to their individual needs.

Patient records

In 2007 we became the first CF unit to successfully implement full electronic patient records, which has significantly improved quality of care.

We are proud of the outcomes for our patients which are above the UK average in all areas including lung function, survival and nutrition.  These outcome measures are demonstrated in the National UK Registry of the Cystic Fibrosis Trust and are available in the public domain via the CF website  www.cftrust.org.uk.

The Team

Information about cystic Fibrosis written by the Leeds Multidisciplinary team

Cystic Fibrosis Medicine

Tel: Ward J06  011320 69106

Tel: Ward J12  011320 69112

Inpatient care

St James’s University Hospital
Wars J6 (level 6) and Ward J12 (level 7)
Gledhow Wing
Beckett Street
Leeds
West Yorkshire
LS9 7TF

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Outpatient

Seacroft Hospital
York Road
Leeds
West Yorkshire
LS14 6UH

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