November 2018

1. Patient Numbers

Total number of PID patients Responses: 30 of 32

Total number of PID patients Note: In 2017 centres were not asked to differentiate between PID and SID patients.

Total number of SID patients Responses: 28 of 32

Total number of patients on Ig replacement Responses: 32 of 32

Total number of patients on Ig replacement The data suggests that services have more patients on Ig replacement therapy in 2018 (graphic below and to the right). The median number has increased from 116 last year (graphic to the right) to 132, and the maximum reported value has also risen (from 330 to 450).

Number of patients on IV Ig in hospital Responses: 31 of 32

Number of patients on IV Ig at home Responses: 32 of 32

Number of patients on sc Ig by pump in hospital Responses: 29 of 32

Number of patients on sc Ig by pump at home Responses: 32 of 32

Number of patients on sc Ig rapid push at home Responses: 32 of 32

Number of patients by treatment type This graphic provides a summary of numbers of patients, by treatment type, at a national level. The intention is to use this as a baseline in future censuses.

Does initial HT training include a home visit? Responses: 32 of 32

Is infusion technique reviewed routinely? Responses: 32 of 32

How is infusion technique reviewed? Responses: 32 of 32

2. Staff

Number of immunology consultants in your centre Responses: 32 of 32

Number of unfilled consultant posts Responses: 29 of 32

Number of consultants retiring in the next 5 years Responses: 27 of 32

Number of trainee NTNs full time Responses: 31 of 32

Number of trainees less than full time training Responses: 31 of 32

Number of unfilled training posts Responses: 30 of 32

DCC/SPA provision

WTE Nursing allocation

3. Norovirus

Have you identified any cases of persistent norovirus in your primary or secondary immunodeficiency patients? Responses: 32 of 32

How many patients with persistent norovirus are you aware of in your PID patients? Note: The three paediatric services who responded to this question were not included in the graphic to the right. The total number of cases for these three services was reported to be between 10 and 20.

How many patients with persistent norovirus are you aware of in your SID patients? Responses: 24 of 32

If you have no patients with persistent norovirus, can you say why? Responses: 9 of 32

4. Hepatitis

Do you routinely perform LFTs for patients on replacement Ig? Responses: 32 of 32

Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: before starting? Responses: 31 of 32

Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: on product change? Responses: 23 of 32

Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: annually? Responses: 31 of 32

If serum save how many samples have you looked back at in last 10 years? Responses: 30 of 32

5. Immunoglobulin Availability

How many PID patients on Ig replacement prescribed through your service have switched products as a result of 2017 commissioning guidance? Responses: 28 of 32

How many SID patients on Ig replacement prescribed through your service have switched products as a result of 2017 commissioning guidance? Responses: 27 of 32

Total patients (PID + SID) on Ig replacement who have switched products as a result of 2017 commissioning guidance Nationally, the total number of patients switching products as a result of commissioning guidance was 170.

How many PID patients managed by your service have been switched as a result of Ig product withdrawal in the last 12 months? Responses: 32 of 32

How many SID patients managed by your service have been switched as a result of Ig product withdrawal in the last 12 months? Responses: 32 of 32

Total patients (PID + SID) who have been switched as a result of Ig product withdrawal in the last 12 months The total number of patients switching products due to product withdrawal was 632.

How many patients have suffered a local reaction following product switch? Responses: 32 of 32

How many patients have suffered a systemic reaction following product switch? Responses: 30 of 32

How many PID patients have had treatment delayed due to product non-availability? Responses: 32 of 32

How many SID patients have had treatment delayed due to product non-availability? Responses: 28 of 32

Product switch arrangements In 17 services, product switch was arranged to coincide with previously planned infusions, and in 5 services the switch was arranged by bringing the annual review appointment forward. In order to accommodate the requirement for increased nursing input, overtime was worked in 10 services.

6. HAE

How many patients with hereditary C1 inhibitor deficiency (Hereditary Angioedema - HAE) do you manage in your service? Responses: 32 of 32

How many patients with Acquired Angioedema do you manage in your service? Responses: 31 of 32

Appendix