Patient feels 'lucky' to be cared for by OUH Immunology team

Dawn with her grandson, Joshua

A patient who has rare health conditions has praised the Immunology team at Oxford University Hospitals (OUH) for their compassionate and dedicated care.

Dawn Green was diagnosed with Acquired Angioedema (AAE) in June 2018 and, while being investigated for an underlying cause, was found to have Splenic Marginal Zone Lymphoma, a type of blood cancer. She has been cared for by the Immunology team at the John Radcliffe Hospital, run by OUH, for Acquired Angioedema since her diagnosis.

AAE is an extremely rare condition which makes the person susceptible to swelling of the tissues in the body.

Dawn experiences swelling of her hands and feet, intestines, face and tongue, leaving her in severe pain, and swelling in the throat can be potentially life-threatening. These 'attacks', which can occur every few days to a few weeks, are unpredictable and can be triggered by any kind of physical and psychological stress.

Treatment for lymphoma is chemotherapy, whereas AAE needs infusions, injections, and having constant access to syringes and medicines.

Dawn wanted to say thank you to the Immunology team for the care she has received throughout her illness. The 62-year-old from Aylesbury wanted to pay tribute to staff for going above and beyond following the sad passing of her husband, Ron, earlier in 2020.

She said: "My husband passed away unexpectedly at the beginning of June 2020. Naturally, this caused terrible stress and had a very negative impact on me. I knew I wouldn't be able to get through the funeral without the necessary treatment. I rang the OUH team and they agreed I should go over to them and they would administer my infusion for me.

"When I arrived the next day everyone was so lovely. The lovely Holly [Hurst, a Specialist Nurse Practitioner in Immunology], who had trained me previously to inject myself, came in on her day off to give me my infusion herself. I think that shows real dedication and care on her part, and it is the general way of that department.

"Thank you to everyone involved in my care. The department is so important for people like me, of which there are not many with this unusual condition.

"Just knowing that there is someone at the end of the phone that I can speak to is hugely reassuring for me. I feel extremely lucky to have been referred to the Immunology team, and I cannot thank them all enough for my care."

Almost all of Dawn’s 20+ attacks have required an Emergency Department admission due to airway swelling and/or severe abdominal swelling.

Dawn has a compromised immune system and, although she is in remission for the Lymphoma and the AAE is reasonably well controlled, she suffers with lots of infections. However, her attacks are less frequent than before, going from every couple of weeks to about one every two months.

'Nothing is too much trouble'

AEE is a rare condition, and one that Dawn is still getting to grips with herself. It is thought there are fewer than 150 people with the condition in the UK.

Dawn has been well-supported by the Immunology team in learning to identify the early stages of an attack coming on and how to manage them effectively and promptly.

Dawn, who had to retire from work due to poor health, said: "The team always make me feel welcome every time I see them; they always make you feel you are cared about and nothing is too much trouble for them.

"Due to my frequent use of my injections and infusions, it has not always been possible for me to replace it from my home in Aylesbury. But just a phone call or email to the Immunology team and they sort it for me, even arranging for infusions to be delivered to me during the first lockdown.

"No matter what time, day or night, someone has been available to help."

Dr Rashmi Jain, a Consultant Immunologist at the Trust, said: "We have an excellent team of nurses, doctors, and ancillary staff in the Immunology Department, and we are very proud to follow our Trust’s ethos of delivering compassionate care to every patient we see."

Sam Foster, Chief Nursing Officer at the Trust, added: "I am grateful to Mrs Green for sharing not just 'what' the team do in terms of their clinical expertise, but also clearly articulating 'how' compassionate personalised care made an impact.

"This is an example of care that epitomises this team who we are extremely proud of."