10 years of National Service on the PNH (Paroxysmal Nocturnal Hemoglobinuria) unit at Leeds Teaching Hospitals

Celebrating 10 years of service

The PNH Service in Leeds is the biggest in the world and sees over 500 patients on a regular basis. Leeds Teaching Hospital Professors, Peter Hillmen and Anita Hill Consultant Haematologists are world-leading in this field.

The PNH National Service was set up in 2009 and comprises of two centres in England, one at St James’s University Hospital, Leeds and the other in King’s College Hospital, London. A multidisciplinary team of 20 staff are involved in the PNH National Service in Leeds. The clinical team regularly visit 8 satellite clinics in outreach locations across the country, meaning patients don’t have to travel as far to access clinics.

This service helps to provide specialist support to patients and their families with PNH. It also provides education and support to patients, their carers and healthcare personnel helping them effectively manage any complications.

Michael's Story

In 2005 at just 17 years old Michael Nash was diagnosed with PNH (Paroxysmal Nocturnal Haemoglobinuria), a rare blood condition, and Aplastic Anaemia, a form of bone marrow failure.

Michael’s PNH diagnosis meant that his blood cells were prone to being attacked by part of the body’s immune system leaving him blood transfusion dependent and susceptible to other side effects like blood clots. The only cure for this disease is a bone marrow transplant but due to the associated risks, in the majority of cases other supportive options are preferable.

Michael was referred to PNH team at St James’s University Hospital from his local haematology team in London and was supported by the PNH specialist team in Leeds for more than 10 years. Michael and his family played a significant part in the development of The PNH National Service at Leeds for patients and families across the country.

Despite his health problems, Michael, alongside his family worked tirelessly to support the pathway to funding for a new life changing drug in PNH. After months of fighting, funding was secured for the treatment for all patients in need across England.

In 2012 Michael planned to travel to Australia for a year but was challenged by the need to receive his intravenous therapy every 14 days. However, with the support of the PNH team at Leeds, and Michael’s perseverance the Australian health service agreed to provide care for him across the country.

Fundraising for PNH Research

The Nash family – Michael’s parents and two sisters, have to date raised over £12,000. 70% of funds raised are going to Leeds Cares in aid of PNH research at Leeds Teaching Hospitals and the remaining 30% to the Aplastic Anaemia Trust.

Louise Arnold, Clinical Nurse Specialist in the PNH team told us, “Mike was so selfless; he regularly called to see what we were doing to push research forward for patients like him.”

A whopping £8,005 raised by the Nash family has helped fund a new piece of machinery. The Nexcelcom Cellometer Auto 2000 will allow blood cells to be counted much quicker, instead of by hand which can take hours.

Professor Peter Hillmen said, “The blood count machine allows us to count PNH cells in our experiments. This gives us a greater understanding of the disease and ultimately helps our efforts to improve treatment. The money that Michael, his family and friends raised makes a massive difference to the fight against PNH”