From Chief Executive Officer, Laura Szutowicz, HAE UK

It seems no time at all since I wrote the last News from the UK, in early March 2020. It was full of the “I am Number 17” campaign, our wonderful fundraisers running marathons and 24-hour karting challenges and looking forward to the 2020 HAE Global Conference in Frankfurt, Germany. There was something in the news about the Coronavirus, but I don’t think any of us realized the dramatic change it was going to make in our lives. Now, three months later, the UK is just starting to come out of lockdown, and we are fortunate in having so many very dedicated doctors and nurses who have still been helping and assisting our members whenever needed.

Obviously, we have had to abandon many of our planned events, but we have been successful in using Zoom and other digital resources to have virtual meetings and even a virtual quiz!

Our Facebook page and our website have been very useful in keeping in touch with our members and being able to give them information. Our HAE Clinical Network collaborated in providing information and advice to patients, which has been very useful in ensuring that the correct advice is given at the correct time.

We have had Zoom meetings with Dr Scott Hackett, our pediatric specialist presenting and answering questions at one and Dr. Hilary Longhurst carrying out one aimed at women and HAE. We have more such ‘meetings’ planned.

And on the evening of hae day :-) 2020, when we should have been having the celebration dinner in Frankfurt, we had a fun quiz, Rachel was quizmaster, and we had a good number of teams. It was a very close finish, but the Easton family won the team section with Andy Long winning the couples. Definitely one to repeat!

We are still keeping our options open about our Patient Days planned for later in the year. It will all rather depend on how the COVID-19 situation continues.

hae day :-) 2020 was marked with a “Silly Saturday”, and members posted their costumes online: Dana the clown,  Pitt the cow, Nikki the Piggy, Rose the witch and Rachel the carrib.

One other project that has completed during the lockdown although it was being worked on for a long time prior to that is our “HAE Expert Nurse Training Programme” which is now being loaded onto a closed part of our website to which interested nurses can log on and go through the training modules. These have been reviewed by our nurse advisors to ensure that they reflect best clinical practice. Each module concludes with a test to ensure full comprehension. On completing the course, the nurse will be an “Expert HAE Nurse”! This is a very exciting project, and we are very grateful to Pharming for having provided the funding for its development.

My walking companions have been helping me clock up the steps for the 2020 HAE Global Walk.

I have thought for some time that it might be useful to describe how HAE care is managed in the UK. Ninety-five percent of HAE patients attend an Immunology Centre, although there are some whose care has been historically handled by another specialty. In order to be designated as an Immunology Centre, the center must conform to the “Service Level Agreement” which is a document describing the minimum services the center must provide, and for this purpose Hereditary and Acquired Angioedema are described as Primary Immune Deficiencies, along with other complement disorders. All centers must provide hospital-based out-patient and daycare as well as access to in-patient (hospital beds), regular clinics, access to infusion suites. They must also provide support from ear nose and throat specialists, respiratory medicine, gastroenterology, pediatrics, infectious diseases, clinical genetics, haemo-oncology, rheumatology and other specialties such as dentistry if there is a dental hospital associated with the center. There will also be a specialized laboratory service and access to European/USA laboratories. Home therapy must be provided, training and ongoing support with patients assessed as to their suitability.

The staffing requirements for a designated center is a minimum of two Consultant Clinical Immunologists, and Immunology Specialist nurses and there must be provision of “out of hours” emergency care for HAE patients as well as all the usual clinics, home therapy training where appropriate and other services. Referral to a center is through the GP although once under a center all medication (except for attenuated androgens and tranexamic acid) are provided under “Specialized Commissioning” so funded directly by the NHS.

The whole system is overseen by UKPIN, which is the network of Immunology Consultants and Specialist nurses. The accreditation of centers is overseen by the Royal College of Physicians though the QPIDS (Quality in Primary Immunodeficiency Service) system. HAE UK has had considerable input to the system to ensure the correct management of HAE and AAE. There are now 15 fully accredited centers in the UK and 23 other centers working towards accreditation. The accreditation process takes 1-2 years and involves regular assessment. Once accredited the centers have to submit annual reviews and be re-assessed every five years. So, it is a very stringent process and one which ensures that regardless of where a patient is in the UK, they are assured of being treated to a high standard. All centers are also able to treat overseas visitors so if you are travelling to UK, contact us to find out the center closest to where you will be staying.

I hope that the next I write will be in a happier time and we will be planning for the next international meeting!