Annual Report
The National PNH service UK is commissioned by NHS England as a specialised service.
We report annually our outcome measures for the year. The highlights of these are below:
April 2022- April 2023:
Combined number of patients within the service: 1025
Leeds
| 2023 | England | Scotland | Wales | N. Ireland | Other | Total |
|---|---|---|---|---|---|---|
| On Complement Inhibition | 175 (30.8%) | 36 (65.5%) | 17 (63%) | 7 (58.3%) | 1 (25%) | 236 (35.4%) |
| Not on Complement Inhibition | 362 (63.7%) | 16 (29.1%) | 8 (29.6%) | 4 (33.3%) | 3 (75%) | 393 (59%) |
| Clinical Trial / Non NHS Funded Complement Inhibition | 31 (5.5%) | 3 (5.5%) | 2 (7.4%) | 1 (8.3%) | 0 (0%) | 37 (5.6%) |
| Total | 568 | 55 | 27 | 12 | 4 | 666 |
Kings
| 2023 | England | Scotland | Wales | Total |
|---|---|---|---|---|
| On Complement Inhibition | 106 (29.61%) | 0 | 1 | 0 |
| Not on complement Inhibition | 225 (62.85%) | 0 | 0 | 0 |
| Clinical Trial / Non NHS Funded Complement Inhibition | 27 (7.54%) | 0 | 0 | 0 |
| Total | 358 | 1 | 359 |
Number of patients commenced on complement inhibitor as a clinical emergency (Leeds and Kings):
41 – 8 due to thrombosis.
Video appointments:
248 since January 2022: 55.79% experienced no difficulties with the clinics.
Indications for starting treatment:
| Patients commenced on complement inhibition 2022 – 2023 Leeds and Kings | |
|---|---|
| Exceptional (MDT) | 3 |
| Pre-BMT | 3 |
| Haemolysis (Anaemia) | 26 |
| Pregnancy (Eculizumab only) | 1 |
| Thrombosis | 8 |
| Total | 41 |
Innovations since 2021:
- Ravulizumab approved – 132 patients switched over (Leeds)
- Pegcetacoplan approved