Скачать или смотреть APPG Access to Treatment Report Launch - Jo and Kate

Kate Khair worked as a Nurse Consultant at Great Ormond Street Hospital for over 25 years. Dr Khair is now Clinical Academic Careers Fellow at the Centre for Outcomes Research and Experience in Children’s Health Illness and Disability (ORCHID), Great Ormond Street Hospital and the Director of Research at Haemnet. She is vice-chair of the board of trustees at The Haemophilia Society, past chair of the World Federation of Hemophilia’s Nurses Committee and the Editor-in-Chief of the Journal of Haemophilia Practice.

Jo Traunter is Trustee of The Haemophilia Society living with Von Willebrand’s Disease, and a member of the European Haemophilia Consortium’s VWD working group. She is also the mother of two children with VWD, a boy and a girl. Dr Traunter is a Senior Fellow of the Higher Education Academy and works as the Programmes Lead for Childhood and Youth Studies at the University of Hull.

They talked about the challenges women and girls face getting appropriate treatment, equitable care and timely diagnosis of their bleeding disorders.

The APPG on Haemophilia and Contaminated Blood are a group of MPs who campaign for people with bleeding disorders. They decided in 2019 to launch an inquiry into Access to Treatment and Care for people with bleeding disorders across the UK. This was in light of growing evidence that people with bleeding disorders were not getting the best treatment in a timely way and increasing evidence of wide variation between standards and outcomes across the UK.

On the 10th November 2020 the group of MPs has published the final report of the inquiry.

To inform its conclusions the inquiry took oral evidence from people with bleeding disorders as well as NHS representatives and pharmaceutical companies. It also received a wide range of written evidence and visited the Haemophilia Centre at the Royal London Hospital in Whitechapel.

After the initial call for evidence there was a delay in the final publication of the report with both a general election late last year and this year’s Covid-19 pandemic but we are pleased to be able to launch this report today.

The report lays out the current state of treatment and care for people with bleeding disorders and makes 19 recommendations to the NHS, Government and clinicians to improve outcomes. The APPG hopes key stakeholders will consider this report and its recommendations carefully and look to respond to and implement its recommendations as soon as practical.

The full report can be downloaded from www.haemophilia.org.uk/APPG