Interactive Workshop 3 - Patient access to rare disease or specialist-initiated treatments beyond the hospital
Information
45 min interactive workshop sessions, with four running concurrently
3) Patient access to rare disease or specialist-initiated treatments beyond the hospital - in partnership with Dr Falk Pharma
Despite NICE guidance and HTA submissions, new treatments for rare diseases and specialist-initiated treatments hit several stumbling blocks when it comes to prescribing and patient access. In terms of:
- getting medicines on to the formulary and the status given
- treatments only being initiated in secondary or tertiary care
- continuation of treatments in primary care
- patients missing and unable to access treatments due to lack of continuity, appointments, processes
In this workshop we would like to better understand the process for developing integrated care pathways to improve the management of patients with rare diseases/ specialist-initiated treatments.
There are many patients who with the correct frameworks in place can be managed and monitored in primary care, leading to reduced use of hospital resources and improve patients’ lives. However, for this to occur a system and integrated approach needs to be considered.
- What does a functional integrated pathway look like, and who drives it?
- Who are the stakeholders that need to be involved?
- Are these the same across the country?
- What influences their decision-making process? Is it cost or burden on the system. What is needed to demonstrate the value?
- What messages are important to communicate to those key stakeholders and how are they accessed?
- With two options available, if the cheaper alternative is the use of non-licensed medicines when a licensed treatment is available. What are the implications of this? Who audits the off-licence use of medicines?
