SCHEDULE 4

Services for rare and very rare conditions
Regulations 7, 10 and 11

Interpretation
1
For the purposes of this Schedule—
a
an individual is a child if they have not yet attained the age of 18 years old;
b
an individual is a young person if they are aged 13 years old or over but have not yet attained the age of 21 years old; and
c
an individual is an adult if they are aged 18 years old or over,
unless, for the purposes of a service specified in this Schedule, NHS England, or the person providing such a service pursuant to a commissioning contract with NHS England, considers on clinical grounds that an individual should otherwise be treated as a child, a young person or an adult.

The services
2
Adult ataxia telangiectasia services.
3
Adult congenital heart disease services.
3A
Adult highly specialist oesophageal gastric services in the form of gastro-electrical stimulation for patients with intractable gastroparesis.
4
Adult highly specialist pain management services.
5
Adult highly specialist respiratory services.
6
Adult highly specialist rheumatology services.
7
Adult secure mental health services.
8
Adult specialist cardiac services.
9
Adult specialist eating disorder services.
10
Adult specialist endocrinology services.
11. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
12
Adult specialist neurosciences services.
13
Adult specialist ophthalmology services.
14
Adult specialist orthopaedic services.
15
Adult specialist pulmonary hypertension services.
16
Adult specialist renal services.
17
Adult specialist services for patients infected with HIV.
18
Adult specialist vascular services.
19
Adult thoracic surgery services.
20
Alkaptonuria service.
20A
Alpha 1 antitrypsin services.
21
Alström syndrome service.
22
Ataxia telangiectasia service for children.
22A
Atypical haemolytic uraemic syndrome services.
23
Autoimmune paediatric gut syndromes service.
24
Autologous intestinal reconstruction service for adults.
25
Bardet-Biedl syndrome service.
26
Barth syndrome service.
27
Beckwith-Wiedemann syndrome with macroglossia service.
28
Behcet's syndrome service.
29
Bladder exstrophy service.
30
Blood and marrow transplantation services.
31
Bone conduction hearing implant services.
32
Breast radiotherapy injury rehabilitation service.
33
Child and adolescent mental health services – Tier 4.
34
Choriocarcinoma service.
35
Chronic pulmonary aspergillosis service.
36
Cleft lip and palate services.
36A
Clinical genomic services.
37
Cochlear implantation services.
38
Complex childhood osteogenesis imperfecta service.
39
Complex Ehlers Danlos syndrome service.
40
Complex neurofibromatosis type 1 service.
41
Complex spinal surgery services.
42
Complex tracheal disease service.
43
Congenital hyperinsulinism service.
44
Craniofacial service.
45
Cryopyrin associated periodic syndrome service.
46
Cystic fibrosis services.
47
Diagnostic service for amyloidosis.
48
Diagnostic service for primary ciliary dyskinesia.
49
Diagnostic service for rare neuromuscular disorders.
50
Encapsulating peritoneal sclerosis treatment service.
51
Epidermolysis bullosa service.
52
Extra corporeal membrane oxygenation service for adults.
53
Extra corporeal membrane oxygenation service for neonates, infants and children with respiratory failure.
54
Ex-vivo partial nephrectomy service.
55
Fetal medicine services.
56
Gender identity development service for children and adolescents.
57
Gender identity disorder services.
57ZA
Gonadal tissue cryopreservation services for children and young people at high risk of gonadal failure due to treatment or disease.
57A
Hand transplantation for adults.
58
Heart and lung transplantation service (including mechanical circulatory support).
59
Highly specialist adult gynaecological surgery and urinary surgery services for women.
59A
Highly specialist adult urological surgery services for men.
60
Highly specialist allergy services.
61. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
62
Highly specialist dermatology services.
63
Highly specialist metabolic disorder services.
64
Highly specialist pain management services for children and young people.
65
Highly specialist palliative care services for children and young people.
66
Highly specialist services for adults with infectious diseases.
67
Hyperbaric oxygen treatment services.
68
Insulin-resistant diabetes service.
69
Islet transplantation service.
70
Liver transplantation service.
71
Lymphangioleiomyomatosis service.
72
Lysosomal storage disorder service.
73
Major trauma services.
74
McArdle's disease service.
75
Mental health service for deaf children and adolescents.
76
Mitochondrial donation service.
77
Neurofibromatosis type 2 service.
78
Neuromyelitis optica service.
79
Neuropsychiatry services.
80
Ocular oncology service.
81
Ophthalmic pathology service.
82
Osteo-odonto-keratoprosthesis service for corneal blindness.
83
Paediatric and perinatal post mortem services.
84
Paediatric cardiac services.
85
Paediatric intestinal pseudo-obstructive disorders service.
86
Pancreas transplantation service.
87
Paroxysmal nocturnal haemoglobinuria service.
88
Positron Emission Tomography – Computed Tomography services.
89
Primary ciliary dyskinesia management service.
90
Primary malignant bone tumours service.
91
Proton beam therapy service.
92
Pseudomyxoma peritonei service.
92A
Psychological medicine inpatient services for severe and complex presentations of medically unexplained physical symptoms.
93
Pulmonary hypertension service for children.
94
Pulmonary thromboendarterectomy service.
95
Radiotherapy services.
96
Rare mitochondrial disorders service.
97
Reconstructive surgery service for adolescents with congenital malformation of the female genital tract.
98
Retinoblastoma service.
99
Secure forensic mental health service for young people.
100
Severe acute porphyria service.
101
Severe combined immunodeficiency and related disorders service.
102
Severe intestinal failure service.
103
Severe obsessive compulsive disorder and body dysmorphic disorder service.
104
Small bowel transplantation service.
104A
Specialist adult haematology services.
105
Specialist burn care services.
106
Specialist cancer services.
107
Specialist cancer services for children and young people.
107A
Specialist colorectal surgery services.
108
Specialist dentistry services for children and young people.
109
Specialist ear, nose and throat services for children and young people.
110
Specialist endocrinology and diabetes services for children and young people.
111
Specialist gastroenterology, hepatology and nutritional support services for children and young people.
112. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
113
Specialist gynaecology services for children and young people.
114
Specialist haematology services for children and young people.
115
Specialist haemoglobinopathy services.
116
Specialist immunology services for adults with deficient immune systems.
116A
Specialist immunology services for children with deficient immune systems.
116B
Specialist maternity care for women diagnosed with abnormally invasive placenta.
117
Specialist mental health services for deaf adults.
118. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
119
Specialist neonatal care services.
120
Specialist neuroscience services for children and young people.
121
Specialist ophthalmology services for children and young people.
122
Specialist orthopaedic surgery services for children and young people.
123
Specialist paediatric intensive care services.
124
Specialist paediatric liver disease service.
125
Specialist perinatal mental health services.
126
Specialist plastic surgery services for children and young people.
127
Specialist rehabilitation services for patients with highly complex needs.
128
Specialist renal services for children and young people.
129
Specialist respiratory services for children and young people.
130
Specialist rheumatology services for children and young people.
131
Specialist services for children and young people with infectious diseases.
132
Specialist services for complex liver, biliary and pancreatic diseases in adults.
133
Specialist services for haemophilia and other related bleeding disorders.
134
Specialist services for severe personality disorder in adults.
135
Specialist services to support patients with complex physical disabilities excluding wheelchair services.
136
Specialist surgery for children and young people.
137
Specialist urology services for children and young people.
138
Spinal cord injury services.
139
Stem cell transplantation service for juvenile idiopathic arthritis and related connective tissue disorders.
140
Stickler syndrome diagnostic service.
140A
Surgery for complex obesity in children.
140AA
Termination services for expectant mothers with significant comorbidities that require either or both critical care and medical support.
140B
Uterine transplantation services.
141
Vein of Galen malformation service.
142
Veterans' post traumatic stress disorder programme.
143
Wolfram syndrome service.
144
Xeroderma pigmentosum service.
Sch. 4 para. 22A inserted (1.4.2014) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014 (S.I. 2014/452), regs. 1(1), 3(2)
Sch. 4 para. 57A inserted (1.4.2014) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014 (S.I. 2014/452), regs. 1(1), 3(3)
Sch. 4 para. 3A inserted (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(3)
Sch. 4 paras. 59, 59A substituted for Sch. 4 para. 59 (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(6)
Sch. 4 para. 107A inserted (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(9)
Sch. 4 paras. 116, 116A substituted for Sch. 4 para. 116 (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(10)
Sch. 4 para. 31 substituted (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(5)
Sch. 4 para. 11 omitted (1.4.2015) by virtue of The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(4)
Sch. 4 para. 61 omitted (1.4.2015) by virtue of The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(7)
Words in Sch. 4 para. 135 inserted (1.4.2015) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2015 (S.I. 2015/415), regs. 1(1), 2(11)
Sch. 4 para. 76 inserted (1.4.2016) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2016 (S.I. 2016/293), regs. 1(1), 4(2)(b) (with reg. 5)
Sch. 4 para. 116B inserted (1.4.2016) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2016 (S.I. 2016/293), regs. 1(1), 4(2)(c) (with reg. 5)
Sch. 4 para. 140A inserted (1.4.2016) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2016 (S.I. 2016/293), regs. 1(1), 4(2)(e) (with reg. 5)
Words in Sch. 4 para. 58 substituted (1.4.2016) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2016 (S.I. 2016/293), regs. 1(1), 4(2)(a) (with reg. 5)
Sch. 4 para. 118 omitted (1.4.2016) by virtue of The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2016 (S.I. 2016/293), regs. 1(1), 4(2)(d) (with reg. 5)
Sch. 4 para. 140B inserted (1.4.2017) by The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2017 (S.I. 2017/296), regs. 1, 2(2)
Sch. 4 para. 36A inserted (1.4.2018) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(2), 2(4)(b)
Sch. 4 para. 140AA inserted (1.4.2018) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(2), 2(4)(g)
Sch. 4 para. 112 omitted (1.4.2018) by virtue of The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(2), 2(4)(f)
Sch. 4 para. 20A inserted (1.4.2019) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(3)(b), 2(4)(a)
Sch. 4 para. 57ZA inserted (1.4.2020) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(3)(c), 2(4)(c)
Sch. 4 para. 92A inserted (1.4.2020) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(3)(c), 2(4)(d)
Sch. 4 para. 104A inserted (1.4.2020) by The Responsibilities and Standing Rules, and Care and Support (Miscellaneous Amendments) Regulations 2018 (S.I. 2018/283), regs. 1(3)(c), 2(4)(e)
Words in Regulations substituted (6.11.2023) by The Health and Care Act 2022 (Further Consequential Amendments) (No. 2) Regulations 2023 (S.I. 2023/1071), reg. 1(1), Sch. para. 1