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 2023- March 2024:
Combined number of patients within the service: 1121
Leeds
| 2024 | England | Scotland | Wales | N. Ireland | Other | Total |
|---|---|---|---|---|---|---|
| On Complement Inhibition | 186 (30.4%) | 38 (65.5%) | 18 (62.1%) | 6 (40%) | 1 (25%) | 249 (34.7%) |
| Not on Complement Inhibition | 397 (65.2%) | 19 (32.8%) | 10 (35.5%) | 8 (53.3%) | 3 (75%) | 437 (61.1%) |
| Clinical Trial / Non NHS Funded Complement Inhibition | 27 (4.4%) | 1 (1.7%) | 1 (3.4%) | 1 (8.3%) | 0 (0%) | 30 (4.2%) |
| Total | 610 | 58 | 29 | 15 | 4 | 716 |
Kings
| 2024 | England | Scotland | Wales | Total |
|---|---|---|---|---|
| On Complement Inhibition | 146 (36%) | 0 | 0 | 146 (36%) |
| Not on complement Inhibition | 233 (57.5%) | 0 | 0 | 233 (57.5%) |
| Clinical Trial / Non NHS Funded Complement Inhibition | 26 (6.5%) | 0 | 0 | 26 (6.5%) |
| Total | 405 | 0 | 0 | 405 |
Number of patients commenced on complement inhibitor as a clinical emergency (Leeds and Kings):
10 due to thrombosis.
Video appointments:
463 since January 2022: 55.79% experienced no difficulties with the clinics as of March 2023.
Indications for starting treatment:
| Patients commenced on complement inhibition 2023 – 2024 Leeds and Kings | |
|---|---|
| Exceptional (MDT) | 1 |
| Pre-BMT | 1 |
| Haemolysis (Anaemia) | 25 |
| Pregnancy (Eculizumab only) | 3 |
| Thrombosis | 10 |
| Total | 40 |
Innovations since 2021:
- Ravulizumab approved – 132 patients switched over (Leeds)
- Pegcetacoplan approved
- NICE appraising Danicopan, Iptacopan and Crovalimab
- Eculizumab biosimilar approved (Bekemv & Epysqli)