Bringing care and support to ILD patients

Bringing care and support to ILD patients


It is vital that all patients who need advice or care from a healthcare professional have access to it, but it can be a challenge to provide access to patients who live in rural areas, patients who find it difficult to travel or those who are too unwell (or are shielding) and cannot attend. Read on to learn about a respiratory service in west Wales who are using PKB to ensure their patients have an open channel of communication with specialist healthcare staff.


Within Respiratory at Hywel Dda University Health Board, the Interstitial Lung Disease (ILD) Service has been actively using the Patients Know Best (PKB) portal since the beginning of 2019, led by Clinical Nurse Specialist (CNS) Jennifer Lynch-Wilson.

The main objectives of using PKB by the team is to that ensure that:

  • Patients have access to information in a timely manner,
  • Clinical time spent with patients is effective,
  • Improved communication between clinicians: the team is comprised of a CNS and a pharmacist who can communicate with each other via the platform and can both be present in message threads from patients and, 
  • Patient expectations are managed effectively.

The service uses a range of the functionality within PKB to help them communicate with their patients, including:

  • secure messaging, 
  • care plans, 
  • library resources,
  • appointment details and letters and,
  • changes in medications.

The messaging functionality has been helpful for sharing photographs when patients have been unable to attend appointments in person. Some of the treatment side effects include rashes, and patients are able to send across photographs of their rashes, enabling the nurse specialist to decide if dosage needs to be changed.

Confidence in the use of the platform over time has led to the development of care plans (such as the one shown below) as well as an extensive library of information for patients. As there are over 200 disorders within ILD, the PKB library enables Jennifer to provide her patients with the key resources and information they need to have access to so they manage their condition more confidently.

Clinical and Patient engagement

The ILD CNS has noted that patients who are in regular contact with the team via PKB appear to require fewer appointments 

In total, to date, 149 patients have registered on the ILD team on PKB with an average of 73 monthly active patient users.

Staff within the service have spoken of PKB offering improved communication with patients regarding important updates. For example, a letter was sent out to all ILD patients on PKB with guidance on medication/safety during the shielding period.

Patients who are in regular contact with the team via PKB appear to require fewer appointments because they are able to report any changes in their condition as they occur, and staff and patients are happy that if the patient is stable, routine appointments are not required. This saves those “just in case” appointments, leaving space for “just in time” urgent and appropriate patient appointments.

Jennifer comments on this benefit, noting that:

“It would not have been unusual before PKB to receive up to 10 phone messages a day with patients merely providing a name and date of birth without reference to the urgency of their concerns. These calls were time consuming but are much easier to deal with now as the number has reduced to only those patients who are not using PKB and those calls which are urgent”.

Jennifer is the only ILD nurse specialist in the area which covers 4 hospitals across 3 local authority areas. Due to the rural nature of the areas covered by the Hywel Dda health board, this can mean patients travelling for up to an hour each way to attend a specialist clinic. The service wanted to use PKB to help manage communication with these patients and has found success with everything from sharing resources to providing reassurance to patients about their symptoms.

Getting results fast

Hywel Dda ILD patients using the platform inform their clinician via messaging when they have received lung function tests. These results are accessed by the CNS who then communicates the result to the patient, which avoids the patients waiting until clinic appointments, thus reducing anxiety regarding monitoring for lung function decline (patient reported). Patients using PKB ask for blood/lung function results and inform staff of the dates they attended for the tests, which has improved the speed at which tests are reviewed and on two occasions has prompted a start to antifibrotic medication following quick review of PFT results.

“The use of PKB has made a significant improvement in the service received by patients requiring drug monitoring and has proven to be a safe and efficient way of receiving care. This avoids clinic appointments, telephone calls, and potential drug dose mistakes as all communicated clearly within a message.”

Jennifer Lynch Wilson

Patient Feedback

The Service recently sent out a patient feedback questionnaire to their patients. In response to the survey, 93% of patients felt it would be very helpful to have access to their health/ medical record to improve the way they manage their health. It was also notable that 79% of patients felt the introduction of Patients Know Best has made it easier for them to access a healthcare professional. 86% of respondents also felt that the introduction of Patients Know Best has improved their experience with the service and overall health and wellbeing. 

“The PKB platform is a most useful tool: easy to use, and to be able to communicate with professional people is a great help”

Hywel Dda ILD patient

A positive future

In a time when face-to-face appointments are reduced, or patients were shielding at home, the PKB platform offered a constant channel of communication between users and their clinicians.

One patient surveyed explained:


My use of PKB is restricted to communication with the specialist respiratory nurse and, via her, my consultant. This is very helpful to me and it has been particularly reassuring during the pandemic as I’ve never felt ignored or abandoned.” 


The future looks bright for the ILD service’s use of PKB with Jennifer commenting that she plans “to further develop the use of PKB to include home spirometry/oxygen saturation  monitoring/weight trends. I will also continue to use it as part of a ‘virtual drug monitoring clinic’ in the future, as workload and patient numbers increase”.

Jennifer recently spoke about clinical transformation through PKB at our Patient User Group – you can listen to her talk here

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