Charity funded support group provides 'unique opportunity', says patient
Pictured above: The support group in action.
The quarterly support groups are being held at the John Burns Centre in Kidwelly and are attended by patients from Carmarthenshire, Ceredigion and Pembrokeshire. Quarterly group meetings have already taken place, and patients are already seeing the benefits of getting together with other patients who have similar diagnoses.
“Life with ILD/PF can be very challenging and isolating for both the patient and their family. The main symptoms are breathlessness, cough and fatigue, all debilitating symptoms. In most cases it is a progressive disease, and many patients require ambulatory oxygen and medication to slow the progression and manage symptoms, and these can make it even more challenging to leave the house.
“Support groups are a very good way to meet people with similar conditions and challenges. It allows people to share problems and solutions and allows people to feel safe socialising.
“Our support group allows for social interaction but also education talks on subjects requested by the group members. We involve all the multidisciplinary teams involved in ILD patients’ care to be involved – these include Physiotherapists, Occupational Therapists, Community Respiratory and Oxygen Nurses, ILD Consultants, Dieticians, etc.”
Rolande Thomas, an ILD patient, said: “The support groups have been great. It's been a good way to get to know all the ILD medical team and physios in an informal, relaxed way and the various talks on aspects of coping with pulmonary fibrosis have been very useful.
“What has been really good is the unique opportunity to meet and chat with other fellow patients and exchange info and tips on how we each cope with our illness and realise we are not alone. This is something that otherwise wouldn't have happened. It has helped me develop a more positive 'can do' attitude and also value and enjoy what I am still able to do.”
David Rees, an PF patient, said: “I have had Idiopathic Pulmonary Fibrosis for about 11 years. The support groups are an excellent initiative with varied speakers providing useful information.
“I strongly believe that these support groups are essential to help patients from an educational perspective as well as a supportive perspective, so they truly feel that they are not alone in the journey. People are being diagnosed every day and they may feel vulnerable and scared. Support groups are important to help reduce these fears and show people that they are not alone.”
Nicola Llewelyn, Head of Hywel Dda Health Charities, the official charity of Hywel Dda University Health Board, said: “We are delighted to see the positive impact the charitable-funded group meetings are having on patients’ lives.
“The support of our local communities enables us to provide services over and above what the NHS can provide in the three counties of Hywel Dda and we are extremely grateful for every donation we receive.”