Belfast patient event for PID patients

On 3rd October 2016, the Regional Immunology Service of Northern Ireland hosted an information evening for their patients in the Education Centre of the Royal Hospital Belfast.

The evening began informally with tea & coffee and a buffet of sandwiches, fruit and, of course, buns! 

This gave the eighty or so attendees time to register, chat with one another and peruse the PID UK stand which was manned by our patient representative for Northern Ireland, Michael Ingleston, and his wife, Lesa.

The programme of six talks was introduced by Dr David Edgar, Consultant Immunologist and began with his colleague Dr Lisa Devlin speaking on “Accreditation: How we maintain the quality of our service”.

The Regional Immunology Service of Northern Ireland was accredited by the UK Primary Immunodeficiency  Network (UKPIN) in 2015 following an inspection in late 2014. The scheme has since been relaunched under the title Quality in Primary Immunodeficiency Service (QPIDS) and is now administered by the Royal College of Physicians.

Dr Devlin’s talk gave an insight into the huge number of documents that had to be produced and the rigorous standards that have to be met in order to achieve accreditation. Further work must go into renewing the accreditation annually.
Dr Devlin also spoke about how the benefits of maintaining a nationwide registry of PID patients. Belfast currently has 229 patients that have consented to be on the registry.

Next, Deborah Kealey,  Immunology Nursing Services co-ordinator, gave a description of the current “Home Therapy Options” for patients receiving immunoglobulin.

Deborah gave a clear explanation of the current options for home therapy  available to patients in Belfast and the factors that have to be considered when choosing which one is the most suitable for each individual patient. She also gave us a glimpse into the future with a brief description of devices that may soon be available such as pre-filled devices and wearable devices.

The third speaker was Dr Emma Carroll, Consultant Clinical Psychologist. The “Living Well Programme” is one of the services that may be offered to patients who have been referred to the Clinical Psychology Service at Belfast Trust. The aim of the programme is to teach people skills that help reduce the impact of negative thoughts and feelings arising from a long term medical condition, enabling them to improve their quality of life.

“Managing Your Chest” was the title of the fourth talk and this was given by Dr Jo McNeilly, a Respiratory Speciality Doctor in the Belfast City Hospital. Dr McNeilly works with immunologist colleagues to deliver a Lung Defence Clinic each month, a multi-disciplinary clinic for PID patients with lung complications. It enables patients to see an immunologist, respiratory specialist and chest physiotherapist all in one visit to the hospital. Jo explained some of the complications that PID patients experience with their chests and some of the ways these can be treated and managed.

The penultimate talk was “New Genetic Diagnosis in PID” and was given by Dr Jayne McGucken, a Speciality Trainee Doctor in Immunology who has recently joined the service in Belfast. She described the NIHR BioResource for Rare Disease. This is a project which will study the genome of a large number of participants with the aims of identifying disease, facilitating precise and earlier diagnoses and tailoring precise treatments. Dr McGucken explained that only patients who had given written consent would be included and their data would be submitted in an anonymised form.

The final talk, “The Role of the Patient Representative”, was given by Michael Ingleston. As well as being member of the PID UK Patient Representative Panel (PRP) for Northern Ireland, Michael is the volunteer patient representative for the Immunology Service. Michael began with a (very) potted history of himself as an immunology patient in order to let the patients get to know him better. He then described his role in the Immunology Service as a point of contact for patients, to represent their ideas and opinions to Immunology Service staff. Michael finished with a run through of his work with the PRP and made his fellow patients aware of the high quality resources available to them through the piduk.org website.

The interesting and informative evening was brought to a close with a Question and Answer session, where the audience addressed any queries they had to Dr Edgar and all six of the speakers.

Posted November 2016