The All-Party Parliamentary Group on Haemophilia and Contaminated Blood has launched an Inquiry into the current systems of licensing, procurement, commissioning and prescription of treatments for genetic bleeding disorders in the UK.
It will document the current processes with a focus on how these processes impact on the treatments that patients are offered and can be offered by the NHS. They wish to show where the processes are working well and when they are not and make recommendations for how the processes could be changed to improve access to treatments and outcomes for people with bleeding disorders.
The APPG wish to seek extensive input from all stakeholders: Government, the NHS, industry, clinicians and patients. They would welcome formal submissions on the key questions below, documents and data relevant to the questions and any other information which they deem relevant. Formal submissions and any other evidence can be sent to [email protected]
- What is the current standard of care for bleeding disorders in the UK?
- How does care vary regionally within the UK and compare internationally?
- To what extent are people with bleeding disorders getting the best treatments?
- How suitable are the current processes for licensing, procurement and commissioning of treatments for bleeding disorders?
- What outcomes and measures are most important in assessing value of treatments for bleeding disorders?
- How effective is joint decision-making between patients and clinicians?
- To what extent is cost a factor in individual prescribing decisions?
- How effectively is clinician and patient choice being promoted by the current systems?
- To what extent are companies encouraged or discouraged to launch new products in the UK?
- What changes would patients and clinicians like to see to improve choice of products and outcomes?
- Is there any other evidence or information you wish to make available to the APPG?
The Haemophilia Society have launched a survey of people with bleeding disorders across the UK to get their views on the extent of their knowledge of and satisfaction with how treatments are offered to them.
Please contact the secretariat on [email protected], by phone on 0207 939 0780 if you have any questions on the work of the APPG.
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