Individual Patient Funding Requests (IPFR)
IPFRs are used when a patient needs to access a specialised service or medication that is not routinely available on the NHS. A clinician has to complete an application on the patient’s behalf. However, it can be important for patients to be informed about the IPFR process and therefore The Pituitary Foundation has developed these help notes.
- It is your clinician’s responsibility to include the detail about your condition. The IPFR assessors may not know about rare diseases and they are not able to go away and research the condition.
- If your clinician is unsure whether to apply they can contact the IPFR assessors to see if the medication in question has been approved before.
- To be successful the IPFR application must provide evidence that the patient is ‘clinically exceptional’. This means their clinical condition must be significantly different to others with the same condition, and subsequently the patient would gain significantly more benefit from intervention than might normally be expected.
- If you have any supporting documents you would like to submit, these need to be given to your clinician, who then sends them off with the application. (Please note patient letters would not be accepted as personal circumstance cannot be considered).
- If after submitting the application your clinician is asked for more information this is usually positive so they should respond as soon as possible. Clinicians can liaise with the IPFR Manager if they have any queries.
What should clinicians include in the IPFR application?
- A description of the condition, incidence, co-morbidities, proposed treatment, costs, and the treatment delivery method.
- Why the patient is clinically exceptional.
- Demonstrate the clinical benefit and the duration of the treatment.
- The patient’s current quality of life.
- Summarise the patient’s treatments to date and the response. (This often shows why the patient is exceptional).
- The rarity of the condition.
- What are the alternative available treatments, their costs, and why they are not appropriate in this case (don’t assume assessors will have these details).
- Include additional supporting information e.g. a relevant information booklet from The Pituitary Foundation.
What clinicians should not do?
- Submit an incomplete application.
- Clinicians should not assume assessors will research the condition.
- Doctors should never submit two identical IPFRs as this automatically means the patients will not be approved as they will not pass the exceptionality criteria.
- Personal circumstance cannot be considered and so should not be included.
What medications are available only through the IPFR process?
Pituitary medications that are currently only available through IPFR include: pegvisomant and pasireotide for patients with Acromegaly;and plenadren which is a type of slow release hydrocortisone.
The IPFR process feedback
We know from some patients that the IPFR process can be frustrating, some patients report long delays, and patients who were approved were often only approved on their second or third application. The NHS is only able to approve a small minority of applications, your clinician will be able to decide the best approach to getting you the treatment you require. (The Foundation continues to contribute to consultations to support these medications being made routinely available by the NHS).
N.B. This information was taken from a lecture to clinicians about the IPFR process. The lecture was given by the previous Area Head of Specialist Commissioning in North West London, Alistair Whitington. The Pituitary Foundation would like to thank Novartis and TSC inviting us, and for hosting the event.