Pulmonary Fibrosis Awareness Month – September 202304/09/2023
Ann Box, Sandra Taylor-Stratford and Siobhan Donnelly, Interstitial Lung Disease Respiratory Nurse Specialists at the Western Trust are delighted to support Pulmonary Fibrosis Awareness Month – September 2023.
Ann, Sandra and Siobhan said:
“September is Pulmonary Fibrosis Awareness Month across the world and we are delighted to support Pulmonary Fibrosis Awareness Month throughout September 2023 by developing a number of videos to help raise awareness of the condition and provide information and advice to patients and their families on how they can benefit from the services that is offered in the Western trust in order to help them live well with their condition.”
We are very grateful for the support of patient James Harkness from Omagh who agreed to participate in the video to give a patient perspective on what care and treatment is provided by the Respiratory Services Team across the Western Trust geography. We cover clinics at Altnagelvin Hospital, Londonderry, South West Acute Hospital, Enniskillen and Omagh Hospital and Primary Care Complex with the aim of providing services close to where our patients live. If you or a loved one have any concerns please contact your GP in the first instance and they will make a referral to the Respiratory Team.
Introducing the Interstitial Lung Disease Nurse Service in the Western Trust and explaining the patient journey Siobhan said:
“If you have a diagnosis of Interstitial Lung Disease (ILD) such as Pulmonary Fibrosis, when you come to clinic the Specialist Nurse will carry out a comprehensive respiratory assessment. We will discuss, tests and treatments, monitor patients for signs of disease progression. The Specialist Nurse will provide education and advice about your diagnoses, treatment, lifestyle changes and recommendations to help alleviate any symptoms you are experiencing. Sometimes referrals are made to other departments such as dietitians, clinical psychology or palliative care services or the Northern Ireland Pulmonary Fibrosis Support group.”
“We provide educational support and signpost you to a wide range of information including Asthma and Lung UK (formerly BLF). We participate in Interstitial Lung Disease Multi-Disciplinary Team meetings where CT Scans and Chest X-rays are reviewed and discussed and a treatment plan is put into action. We are a point of contact for patients and carers to support them through their journey with Pulmonary Fibrosis (PF). We would encourage referrals to this service from any medical, nursing or Allied Health Profession (AHP) staff that have identified a patient with PF who could benefit from our input. Have a discussion with your doctor or nurse to make the referral to our service.’’
Patient James Harkness who was diagnosed with Pulmonary Fibrosis 12 years ago explained:
“I attend the Fibrosis Clinic in Omagh Hospital and Primary Care Complex under the care of Siobhan. When I first came to Siobhan my oxygen levels were very low. I now receive oxygen to my home and I am reviewed at the clinic. If anyone has any conditions similar to my own they should see their own GP and get referred to the clinic. It really has helped me greatly. I’m now able to walk and very grateful for the care and treatment from Siobhan and the staff in the Clinic.”
Pulmonary Fibrosis patients can link with the Pulmonary Fibrosis Patient Support Group who hold regular meetings. This is a regional group and any patients can access this support group no matter which Trust location they live in. PF ambassadors Clare Donohoe and Jenny Ansfield are encouraging new members and ambassadors from across Northern Ireland.
Clare Donohoe explains:
“In 2022 the only dedicated support group for Pulmonary Fibrosis in Northern Ireland became a Charity, and ‘PFNI’ now support patients and carers across all Health Trusts in NI. Led by a group of 7 Trustees, and supported by a team of Ambassadors from across Northern Ireland, the charity provides a range of support services to patients and their carers. This includes a support group which runs on alternate Tuesdays, from 11 am to 12 noon via Zoom, for patients and their carers. The support group meetings have a range of guest speakers including clinicians, advice on oxygen use and techniques for managing the symptoms such as breathing exercises, and managing cough, and any other query or concern that Pulmonary Fibrosis patients and their carers may have.
“In addition, the charity provides much needed respite for patients and their carers. They have purchased ‘Puffin Lodge’, a caravan in Ballycastle, where patients and their carers can book a holiday for rest and relaxation.”
The charity also offers respite days out. Patients and their carers from across Northern Ireland recently enjoyed a trip to Fermanagh, where they had a guided tour around the island town of Enniskillen on the Kestrel, which stopped off at the beautiful Devenish Island. Patients and their carers were also treated to a spin on 2 ribs round the Island hosted by Marty Ansfield, a PF patient and volunteer instructor from the Lough Erne Yacht Club.
“It is the aim of the charity to increase their much needed respite capabilities, and also organise trips for patients and their carers so they can socialise and meet others who are on the same journey.”
Clare Donohoe, one of the Charity’s Trustees wishes to encourage Pulmonary Fibrosis patients in the Western Trust to reach out to Pulmonary Fibrosis NI for support. Clare’s husband was diagnosed with Idiopathic Pulmonary Fibrosis in 2018, age 43, and she has said that the Charity and support group have been invaluable in supporting her family over the last 5 years. Clare’s husband is currently listed on the ‘Active Transplant List’ with The Freeman Hospital in Newcastle, and she explained that talking with other patients who have IPF and have been through the transplant assessment and surgery, has been very helpful in preparing them for Tom’s potential double lung transplant.
Jenny Ansfield, an Ambassador for Pulmonary Fibrosis NI, is a carer for her husband, Marty, who was diagnosed with Idiopathic Pulmonary Fibrosis in 2019. Jenny says: “It was all very new to us and without Pulmonary Fibrosis NI (PFNI) we could not have coped. We had great support and got speaking to others that was affected by the same disease. It would be great if there was a cure for pulmonary fibrosis as it definitely changes your life. We really don’t know what the future holds but we are grateful for the tremendous support from PFNI.”
For further information on the work of the charity and to join the support group, visit www.pulmonaryfibrosisni.co.uk. Alternatively you can contact the charity on 07714469327/07479718811 or email firstname.lastname@example.org.