Dear Alpha-1 Patients,
We have repeatedly noticed that there still appears to exist confusion about the status of ADAPT and the available options for Alphas to receive specialist care in the NHS. We would like to clarify the situation.
ADAPT has always been a largely industry-funded research programme with no formal links to the NHS. There is no NHS process which allows the “transfer” of patients from a research programme, eg. ADAPT, to an NHS service, eg. specialist Alpha-1 clinics.
It is important to understand that every patient who has been attending ADAPT or any other research programme is free to choose where they want to attend specialist Alpha-1 NHS clinics – an automatic ‘transfer’ to a particular NHS service by a local doctor without prior discussion with the patient about their preferred choice is not appropriate.
You and your local doctor should be aware of the available choice that now exists in the NHS for Alpha-1 patients: specialist multidisciplinary NHS clinics are operational, for example, at Addenbrooke’s Hospital in Cambridge, at the Royal Free Hospital in London and, as part of the new West Midlands Specialist NHS Alpha-1 Service, at the University Hospital in Coventry and at the University Hospital in Birmingham. All these centres have the necessary expertise and experience to provide optimal care for Alphas.
Please read the front page article of our latest Newsletter for detailed information about the differences between attending research programmes and NHS clinics, and about some (but not all) of the available specialist NHS Alpha-1 clinics in England and how to get referred there.
It is important that you are fully aware of the available options in order to make an informed choice about your care!
Board of TrusteesAlpha-1 UK Support Group
Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream. AAT is an enzyme produced in the liver to help protect the tissues of the body during infections. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.