Glasgow A special gathering in

At the end of last year, 70 patients and family members from the Sottish Pulmonary Vascular Unit gathered for an event organised by the Golden Jubilee Hospital. Attendee Ashley Butlin put together this report of the day, which was sponsored by the PHA UK and designed to bring everyone together.

Originally planned for early 2020 but cancelled due to covid, the much-awaited Patient Day finally took place in 2022. The Golden Jubilee Conference Centre attached to the hospital in Glasgow was the perfect location for the day’s events.

Gathering for registration over coffee, the groups began to get to know each other prior to the start of the event, which began with a welcome from Dr Martin Johnson, Scottish Pulmonary Vascular Unit (SPVU) Director.

The opening speaker was Dr Harrison Stubbs, an SPVU Specialist Registrar who, with the aid of basic, easily-followed illustrations of the heart and lungs, took us through the causes and symptoms of PH. Even for those with a good knowledge of human physiology, this talk shed new light on the reasons for PH.

The SPVU is very fortunate to have the services of a newly appointed Clinical Psychologist in Dr Klaudia Suchorab, who spoke next to outline her role within the unit.

Being given the diagnosis of PH can come as a shock to patients and their loved ones which is where Klaudia comes to the fore to offer much needed support.

Having only been appointed earlier this year, Klaudia was new to many of the delegates, but her reassuring talk gave great confidence that her appointment will be a tremendous bonus, not only to newly diagnosed patients but also those who have been treated for much longer.

Each patient with PH has a similar but different path to diagnosis and this was brought home by our next speaker, Michelle Wardrope, who took us through her journey with PH.

Some of the steps were very familiar, like the scans, tests, and catheterisation followed by diagnosis. But other parts of her route were probably unique in that, having been a participant in trials, a rare gene in her DNA was identified –linked to PH that is also present in her daughter, who has also subsequently been diagnosed with it too.

A question time with a panel of SPVU experts took place prior to lunch and an excellent meal followed, which again allowed for interaction and discussion between delegates and SPVU staff.

The afternoon sessions proved just as informative, starting with Karon Carson, an SPVU Nurse Specialist, taking the group through the thoughtful process of Anticipatory Care Planning – something few of us have probably given much thought to in the past.

Letting our family and loved ones know, as well as our medical team, what we are thinking about future choices and care will enable us to enjoy making the most of the present.

Planning in this way can also give peace of mind to family and friends, who may be unsure about our preferences.

Karon also introduced a new publication from the PHA UK called Palliative Care & PH.

From the outset she made it clear that there is a belief palliative care and end-of-life care are one and the same –they are not, they are very different!

SPVU also have a new specialist pharmacist, Emma Russell, and it was Emma who led the next session about the importance of PH medications. Taking the group through the variety of drugs now available to treat the condition, she highlighted the need for consistency when taking the prescribed medications.

Our final workshop was taken by Val Irvine and Fiona Thomson, the SPVU Research Nurses, and looked at the pros and cons of being part of a research project. Medications and treatment of PH have advanced dramatically over the past 25 years or so, none of which would have happened without research. Likewise, future developments, ultimately aimed at finding a cure, will require further continual research and this is where current patients can be involved.

Alongside the talks and workshops, during the afternoon patients could book 15 minutes of alternative therapy sessions, including massage, Reiki or reflexology.

This was a tremendous day put together by the SPVU team, who cannot be praised enough for their dedication here north of the border.

Unbelievably, 25 years ago, the unit consisted of just a single doctor and nurse. Today, under the present direction and drive of Dr Martin Johnson, it has grown to a department of 24 – consisting of consultants, fellows, researchers, nurses, a pharmacist, a psychologist, secretaries, and administrative staff.

Together, they currently look after 515 patients. Their dedication cannot be underestimated. When needed they are only a phone call away and a response is guaranteed. While based at the Golden Jubilee Hospital in Glasgow, they now run clinics in Aberdeen and Edinburgh, making it easier for patients to attend. Future clinics could well follow.

We are extremely fortunate to be supported by such a dedicated team and can only offer our heartfelt thanks to them all.