Patient A Scenario Description - Springer Static Content …10.1007... · Web viewEpilepsy Management20 Shunt Revision Surgery20 Personal Social Services21 Government costs22 Education22

Pediatric Drugs

Counting the Cost of Meningococcal Disease

A Severe Case of Meningitis and Septicemia

Wright C, et al.

Claire Wright, Medical Information Officer, Meningitis Research Foundation, Midland Way, Bristol BS352BS, UK

Email: [email protected]

Electronic Supplementary Material

29

Appendix

Purpose

The purpose of this appendix is to describe the assumptions used in estimating the cost of an episode of meningococcal septicemia and meningococcal meningitis with severe sequelae and to describe these costs on a year-by-year basis.

Method

Two hypothetical children were put together to represent realistic but severe examples of cases of meningococcal meningitis and septicemia. Both scenarios were based on amalgamations of actual cases of disease. Twelve families who had a family member severely affected by meningococcal disease were interviewed in order to compile an exhaustive list of the sorts of health, educational and other resources used during and since the acute illness. Academics and professionals in health, social care and education were then consulted in order to refine our scenarios and more accurately represent the treatment and support that individuals with such sequelae might realistically receive from the NHS, PSS and other government departments. Unit costs used were taken from published UK costs as noted in the individual sheets, and multiplied by the experts' resource use estimates to give an estimate of total cost. All costs have been indexed to 2010/11 prices.[1]

Structure of this appendix

This appendix describes a severe case of meningococcal septicemia (patient A) and a severe case of meningococcal meningitis (patient B).

The scenario descriptions provide an overview of the problems that each patient has and the extra resources that they may require. The information is arranged into categories, with each category corresponding to a particular table number which indicates where in the appendix the reader can find detailed unit costs and assumptions associated with that category. A full list of professionals consulted and a list of references is provided. The healthcare resource groups (HRGs) used are also listed along with the national average unit costs associated with each HRG.

Findings:

Full yearly cost breakdowns for patients A and B are provided in tables 30 and 31, respectively.

Cost perspective

The cost perspectives used are NHS/PSS and government.

Contents

Patient A Scenario Description5

Patient B Scenario Description6

NHS/PSS Costs7

Acute Care7

Outpatient Appointments10

Community Medicine12

Specialist Equipment13

Prosthetic Provision15

Stump Revisions and Skin Graft Surgery17

Behavioural Problems18

Cochlear Implants18

Public Health19

General Health Problems20

Epilepsy Management20

Shunt Revision Surgery20

Personal Social Services21

Government costs22

Education22

Learning Support Assistant22

Special Educational Needs School22

Transport to and from school22

Special Educational Need (SEN) statement23

School adaptations and equipment23

Other Costs to Government24

List of consultees27

HRG Codes and Associated Costs28

References30

List of Tables

Table 1: Grouper inputs patient A7

Table 2: Acute medical costs patient A8

Table 3: Grouper inputs patient B8

Table 4: Acute medical costs patient B9

Table 5: Outpatient appointment assumptions patient A10

Table 6: Outpatient appointment assumptions patient B11

Table 7: Community medicine assumptions patient A12

Table 8: Community medicine assumptions patient B12

Table 9: Specialist equipment assumptions patient A13

Table 10: Specialist equipment assumptions patient B14

Table 11: Lower limb prosthetic provision assumptions15

Table 12: Upper limb prosthetic provision assumptions16

Table 13: Stump revision and skin graft surgery assumptions17

Table 14: Behavioural problem resource use assumptions and costs18

Table 15: Cochlear implant service use assumptions and costs18

Table 16: Public health resource use assumptions and costs patient A19

Table 17: Public health resource use assumptions and costs patient B19

Table 18: General health problems assumptions and costs20

Table 19: Epilepsy management assumptions and costs20

Table 20: Shunt revision surgery assumptions and costs20

Table 21: Personal social services assumptions and costs patient A21

Table 22: Personal social services assumptions and costs patient B21

Table 23: Learning support assistant assumptions and costs Patient A22

Table 24: Special needs school assumptions and costs Patient B22

Table 25: Special educational needs statement resource assumptions and costs23

Table 26: School adaptations and equipment assumptions and costs23

Table 27: Other government costs patient A24

Table 28: Other government costs patient B26

Table 29: HRG codes and associated costs (from DoH reference costs 2008-9)28

Patient A Scenario Description

DESCRIPTION

Table

No.

PATIENT A - A SEVERE CASE OF MENINGOCOCCAL SEPTICEMIA

ACUTE CARE - Patient A was 12 months old when he visited the GP with a fever and a rash and was subsequently rushed to hospital with suspected meningococcal disease. He was taken to the Emergency department by ambulance and from there transferred to PICU by a retrieval team. Patient A spent 31 days in PICU with severe septic shock, acute respiratory distress syndrome and renal failure. He also developed gangrene of the limbs due to purpura fulminans. His respiratory and renal problems were resolved in PICU, and he was transferred to a paediatric ward where he needed both legs amputated above the knee and one arm below the elbow. After the initial amputations, Patient A had to return to theatre several times for tissue debridement and dressing changes under anaesthetic. Once his wounds had begun to heal a little, patient A also underwent various skin grafting operations to repair damaged skin on his remaining limbs. In total he was in hospital for 6 months.

2

OUTPATIENT APPOINTMENTS - Once discharged from hospital, patient A became a lifelong outpatient of a disablement services centre which provided prosthetic limbs. He was seen by a multidisciplinary team consisting of a consultant in rehabilitation medicine, a prosthetist, a physiotherapist and an occupational therapist on a regular basis. He also had regular appointments with the hospital paediatrician.

5

COMMUNITY MEDICINE - Community therapists played a role in patient As rehabilitation regarding prevention of contractures and providing a programme of exercises to improve posture, strength and dexterity. The community therapists support parents and teachers who carry out the exercises with the child.

7

SPECIALIST EQUIPMENT - Patient A needed specialist equipment from the hospital and the community therapists to assist him with his exercises and ultimately help him to move around independently.

9

PROSTHETIC PROVISION - Patient A's prosthetic limbs needed upgrading and replacing as he grew and his needs changed.

11 & 12

STUMP REVISIONS AND SKIN GRAFT SURGERY - As patient A grew, the bones in his amputation stumps grew at a different rate to the surrounding tissue and he had to undergo numerous operations to trim his bones and alter the coverage of his amputation stumps. In addition to this, the skin on one of his legs was in such bad condition that it needed to be covered with healthy skin taken from his back. In order to harvest enough skin for the operation skin expanders were inserted to stretch the skin.

13

BEHAVIOURAL PROBLEMS - By the time patient A reached four years of age, he was starting to show signs of difficult behaviour. Patient A was referred to the child and adolescent mental health services (CAMHS) by the community paediatrician where ADHD was diagnosed.

14

PUBLIC HEALTH - When patient A was diagnosed with meningococcal disease, the hospital reported this to the Consultant in Communicable Disease Control (CCDC) at the local Health Protection Unit (HPU). Chemoprophylaxis to stop carriage of the bacteria was offered to patient As immediate family at the hospital. Health protection nurses at the HPU undertook contact tracing which established that wider prophylaxis was not needed. Patient A had been attending nursery before he became ill, so the nursery were contacted by public health and advice was given to staff along with information provided for the parents of all the children who attend nursery with him. A blood sample was sent from the hospital to the Meningococcal Reference Unit (MRU) for laboratory confirmation by PCR.

16

PERSONAL SOCIAL SERVICES (PSS) - At 21 years of age patient A began to live independently and had a personal assistant home care worker who was paid via direct payments. The home care worker helped patient A at home for 7 hours a week.

21

EDUCATION LEARNING SUPPORT ASSISTANT - At three years of age, patient A attended nursery. Whilst at nursery, he had a learning support assistant to help him with his mobility and he continued to need this support throughout his schooling. Before attending nursery, the community therapists would visit his home regularly to provide his parents with an exercise programme to build up his strength and weight bearing through his legs. Once he attended school, however, the therapists performed school visits and part of the learning assistants role was to ensure that patient A completed certain strengthening exercises as part of his school day. TRANSPORT - Patient A was unable to walk for long distances unaided so he was entitled to free transport to and from school. SPECIAL EDUCATIONAL NEEDS (SEN) STATEMENT - Patient A had a special educational needs statement because of his physical disabilities and his ADHD. As part of the statementing procedure his statement of SEN was reviewed by the school and a SEN Officer from the Local Authority annually. Patient A had complex needs regarding statementing. He was issued with the statement aged five and no changes were required before issue. There was a review every year until he reached 18. Three of these reviews lead to changes in the statement. SPECIAL ADAPTATIONS AND EQUIPMENT - Patient A had his own specially adapted bathroom at primary school equipped with a ceiling hoist, grab rail, closimat toilet and adapted sink. He had a therapy bench as an exercise aid. He also had a specially adapted bathroom when he went to secondary school.

23, 25 & 26

OTHER COSTS TO GOVERNMENT Patient A was one of two children in a two parent family. When he became ill, one parent gave up work to care for him, which put a financial strain on the family. Because of the family's altered circumstances, they were entitled to certain government grants and benefit payments. Patient A went on to further education age 18 and completed a three year educational course. At age 21 he moved out of home into rented accommodation and got a part-time job. His employment opportunities were restricted because of his disabilities. He worked 16 hours a week until he retired at age 65. Because of his disability and restricted income he was eligible for certain benefits.Costs were divided into three separate categories: direct costs i.e. government payouts which fund a particular resource such as an adapted car or house adaptations, indirect costs, and transfer payments i.e. benefit payments.

27

Patient B Scenario Description

DESCRIPTION

Table No.

PATIENT B - A SEVERE CASE OF MENINGOCOCCAL MENINGITIS

ACUTE CARE - Patient B was 3 years old when her mother took her to the GP with a fever, scanty petechial rash, reduced conscious level and a bulging fontanelle. She was rushed to hospital via 999 ambulance with suspected bacterial meningitis. From the Emergency department she was transferred to the paediatric intensive care unit (PICU) of the regional tertiary centre by a retrieval team. She had raised intracranial pressure and intractable seizures and required ventilation and intubation. Acute hydrocephalus was immediately treated by insertion of an external ventricular drain and later by insertion of a shunt. She required prolonged airways management for neurological complications, including repeated seizures. Patient B spent 26 days in PICU. Once stable she was transferred to a paediatric ward where she spent some recovering before moving to a neuro-rehabilitation unit for five months of daily therapy.

4

OUTPATIENT APPOINTMENTS - Once discharged from hospital, patient B had regular follow up appointments with the hospital doctors who treated her in the acute stage. Patient B had been left with severe neurological damage, including severe cognitive deficits, epilepsy, severe hemiplegia, homonymous hemianopsia, communication problems and profound deafness. Although patient B eventually learned to walk, this was only for very short distances. This meant that she was predominantly a wheelchair user and had problems with her posture.

6

COMMUNITY MEDICINE - Patient B was 3 years old on discharge from hospital and needed regular and frequent care. She received regular home visits from community health professionals until she started school full time.

8

SPECIALIST EQUIPMENT - Once patient B was discharged from hospital, certain special equipment was provided for the home to help with mobility, day to day activities and her posture.

10

PUBLIC HEALTH - The hospital reported the diagnosis of bacterial meningitis to the Consultant in Communicable Disease Control (CCDC) at the local Health Protection Unit (HPU). Chemoprophylaxis to stop carriage of the bacteria was offered to patient Bs immediate family at the hospital. Health protection nurses at the HPU undertook contact tracing which established that wider prophylaxis was not needed. Microbiological samples were sent to the Meningococcal Reference Unit (MRU) for PCR and culture to identify the bacteria responsible for patient Bs illness.

17

COCHLEAR IMPLANTATION - Patient B was profoundly deaf and was referred to the cochlear implant team as soon as possible for bilateral cochlear implants. To be successful, cochlear implantation following meningitis needs to be carried out within months of the acute illness. Once she had had the initial implantation operation, she became a lifelong outpatient of the cochlear implant centre as ongoing care and technical support is required.

15

GENERAL HEALTH PROBLEMS - When patient B initially returned home from hospital she was in a lot of pain and was given medication daily to help relieve this. She also required medication to assist bowel movement because she was very constipated. Patient Bs brain damage meant that she was doubly incontinent.

18

EPILEPSY - Patient B was diagnosed with epilepsy during her initial stay in hospital. This was managed with epilepsy medication which was reviewed on a regular basis by her neurologist (neurology appointments dealt with in table 6).

19

SURGERY - Patient B needed multiple shunt revision operations throughout her lifetime. In total she had five operations which averaged out at approximately one operation every ten years. Four of her operations were planned, but one was carried out as an emergency operation due to blockage of the shunt.

20

PERSONAL SOCIAL SERVICES (PSS) - Patient B lived at home with her parents and because of the care that she required, the family qualified to have a home helper for a few hours to ease some of the burden from the family. Home help was accessed by direct payments. Whilst living with her parents patient B spent the occasional weekend in residential unit to give the family a break from caring. By the time patient B was 40, her parents had become too old to care for her so she moved to a residential care home.

22

EDUCATION SCHOOL - Patient B attended a special educational needs nursery and maintained special primary and secondary schools. TRANSPORT - Patient B was entitled to free transport to and from school. SPECIAL EDUCATIONAL NEEDS (SEN) STATEMENT - Patient B had a statement of special educational needs because she was assessed by the local authority as having severe learning difficulties and multiple needs. Her statement of SEN was reviewed by the school and the local authority on an annual basis.

24 & 25

OTHER COSTS TO GOVERNMENT Patient B was one of two children in a two parent family. When she became ill, one parent gave up work to care for her, which put financial strain on the family. Because of the family's altered circumstances, they were entitled to certain government grants and benefit payments. Patient B lived with her parents until she was 40 and then moved to full time residential care. Costs were divided into three separate categories: direct costs, indirect costs, and transfer payments.

28

NHS/PSS CostsAcute Care

METHODS

The majority of medical costs are national average costs collected from the National schedule of reference costs 2008-09 (NHS trusts and PCTs combined), indexed to 2010/11 prices[1]

The national schedule of reference costs lists unit costs according to Human Resource Group (HRG) codes. Stays in hospital are assigned a code according to the level of resources used during the inpatient stay.

The HRG code relevant to our scenario was obtained using the HRG4 Code to Group Reference cost Grouper 2008/09 software version 4.2.2. When the appropriate ICD10 diagnosis codes and operating procedure codes (OPCS) are input into the grouper, the software generates an HRG code descriptive of the hospital spell.

The software also generates a trimpoint which is specific to the HRG code. The trimpoints are set so that extreme values (long hospital stays) do not skew the average cost calculations for that particular group

If the number of days that the patient stays in hospital does not exceed the trimpoint, then the average unit cost for the HRG code is used. If the length of stay in hospital exceeds the trimpoint, then the excess number of days spent in hospital over and above the trimpoint are costed at a per bed day rate which is specific to that HRG code.

Costing a spell in hospital using a Human Resource Group (HRG) currency code does not include costs associated with critical care (PICU) or diagnostic imaging such as CT and MRI scans. These costs have therefore been added seperately.

Patient A

The HRG code generated by the grouper in this case was HR06B - Reconstruction procedures category 1 18 years and under. Codes that were input into the grouper to generate this code are provided in Table 1 below.

Table 1: Grouper inputs patient A

ICD 10 Code

Description

A392

Acute meningococcemia

D65X

Disseminated intravascular coagulation [defibrination syndrome] (includes purpura fulminans)

L905

Scar conditions and fibrosis of skin

B948

Sequelae of other specified infectious and parasitic diseases

T875

Necrosis of amputation stump

OPCS Code

Description

X075

Amputation of arm through forearm

X093

Amputation of leg above knee

X093

Amputation of leg above knee

X121

Reamputation at higher level

X124

Revision of coverage of amputation stump

S358

Other specified split autograft of skin

X125

Drainage of amputation stump

S369

Unspecified other autograft of skin

S571

Debridement of skin NEC

S576

Cleansing and sterilasation of skin NEC

S574

Dressing of skin NEC

Hospital Spell Cost

The hospital spell cost was calculated using the following equation:

Hospital spell = (HRG06Buc + ((HPlos - PICUlos - HR06Btp) * HR06Bebdr))

Where:

PICUlos

=

Length of stay in PICU (days)

=

31

HR06Buc

=

National average unit cost for hospital stays under currency code HR06B

=

3,364

HPlos

=

Hospital length of stay (days)

=

186

HR06Btp

=

Trimpoint associated with HRG currency code HR06B (days)

=

6

HR06Bebdr

=

Excess bed day rate associated with HRG currency code HR06B

=

490

Hospital spell

=

76,374

Table 2: Acute medical costs patient A

Unit Cost

Quantity

Cost

Source

GP Appointment*

31

1

31

[2]

Ambulance transfer

240

1

240

[3]

A&E Investigation

136

1

136

[3]

Paediatric critical care transportation

2,417

1

2,417

[3]

PICU bed day

2,327

31

72,137

[3]

Hospital spell cost (HR06B)

76,374

1

76,374

[3]

CT head

101

1

101

[3]

MRI head

206

1

206

[3]

151,642

Total

157,101*

Total indexed to 2010/2011[1]

* Costs have been uprated from 2008/09 to 2010/11 using the HCHS prices inflator[1]

Patient B

The HRG code generated by the grouper in this case was AA10Z - Intracranial procedures except trauma with non-transient stroke or cerebrovascular accident, nervous system infections or encephalopathy - category 3. Codes that were input into the grouper to generate this code are provided in Table 2 below.

Table 3: Grouper inputs patient B

ICD 10 Code

Description

A390

Meningococcal meningitis

G911

Obstructive hydrocephalus

G403

Generalized idiopathic epilepsy and epileptic syndromes

OPCS Code

Description

A201

Drainage of ventricle of brain NEC

A124

Creation of ventriculoperitoneal shunt

Hospital Spell Cost

The length of stay in hospital is within the trim point of 72 days for HRG AA10Z, so there is no need to add a cost for excess bed days. This means that the hospital spell cost is the same as the cost of the HRG code AA10Z at 12,828.

Neurorehabilitation

Rehabilitation is separately identified from the acute HRG because a significant number of bed days are used for this type of care[4].

The rehabilitation is classified as code VC06Z Rehabilitation of brain injuries and is a Specialist Rehabilitation Service (SRS) (level 2) as defined in the 2008/9 reference cost collection guidance [5]. Rehabilitation costs an average of 368 per bed day.

Table 4: Acute medical costs patient B

Unit Cost

Quantity

Cost

Source

GP Appointment*

31

1

31

[2]

Ambulance transfer

240

1

240

[3]

A&E Investigation

136

1

136

[3]

Paediatric critical care transportation

2,417

1

2,417

[3]

PICU bed day

2,327

26

60,502

[3]

Hospital spell cost (AA10Z)

12,828

1

12,828

[3]

CT head

101

1

101

[3]

MRI head

206

1

206

[3]

Rehabilitation (VC06Z)

368

150

55,200

[3]

131,661

TOTAL COST

136,401*

Total indexed to 2010/2011


Outpatient Appointments

Table 5: Outpatient appointment assumptions patient A

Type

Description

Assumption*

Unit costs

Source

Prosthetic Appointments

Patient has access to:

The child is followed up every three months for the first year, then every four months until age 16, then 6-monthly until age 30 and yearly thereafter.

First attendance: 769

[1, 3]

Lead prosthetic therapist

Follow up attendance: 337

Prosthetist

Counsellor.

Prosthetic Physiotherapy Appointments

Specialist physiotherapy to help gait etc when using prosthetic legs

The physiotherapist will see the child at every prosthetic outpatients clinic. However when there is a change in circumstances such as change in prosthetics the child receives a block of physiotherapy. The average number of sessions in a block of physiotherapy with the prosthetics physiotherapist is about 16. It has been assumed that the child will receive 4 blocks of physiotherapy throughout his development.

46 per hour of client contact

[1-2]

Prosthetic Occupational Therapy appointments

Specialist OT to help use the prosthetic arm for specific tasks

The OT sees the child at the quarterly rehabilitation appointments, but has more of an input when there is a change in circumstance such as when the child starts to use a myoelectric arm or wants a specific prosthetic tool for a given activity. It has been assumed that the child sees the OT outside of the routine appointments for 4 extra sessions per year until age 18. This is ongoing input because the child may require new equipment as the activities he participates in change. After age 18 it is assumed that as an adult he may need to see the OT for one extra session (outside of the routine prosthetic rehab appointments) per year.

46 per hour of client contact

[1-2]

Combined Clinic Appointments

Patient sees Plastic surgeon, lead prosthetic therapist and sometimes orthopaedic surgeon in a combined clinic.

These appointments take place on a six monthly basis until the child reaches 18 years of age. They then take place on an as needed basis. For this particular scenario the patient has four extra appointments beyond age 18. These appointments are for issues such as the breakdown of existing skin grafts.



[1, 3]

Hospital Paediatrician Appointments

Patient is followed up by the hospital paediatrician in charge of his acute care

These appointments are quarterly until the child reaches 3 years of age at which point care is handed over to a community paediatrician.

First attendance: 102 Follow up attendance: 35

[1, 3]

Plastic surgery appointments

Plastic surgeon

The patient has five appointments on an as needed basis beyond age 18. These appointments are for issues such as the breakdown of existing skin grafts.



[1, 3]

*Assumptions based on the clinical opinions of occupational therapists, physiotherapists, consultants in rehabilitation medicine, prosthetists, plastic surgeons, orthopaedic surgeons and paediatricians (see list of consultees).


Table 6: Outpatient appointment assumptions patient B

Type

Description

Assumption*

Unit costs

Source

Paediatrician

PICU/Infectious disease follow up to check immune function and discuss PICU medical issues

There are four follow up appointments in the 18 months following discharge


[1, 3]

Neurologist

Appointments with the neurologist who was involved in the acute care episode

There are six follow up appointments for the first year. After that the appointments drop to one every four months and become six monthly appointments one year after the acute illness. These six monthly appointments continued until the age of 16 and then dropped to yearly. Patient B undergoes neuropsychological assessment at age 4. From age 4 to 16 one appointment with the neurologist includes neuropsychologist input and so has been costed as multi-professional.

Paediatric Follow up attendance: 252 Neuropsychological assessment: 358 Multi-professional paediatric follow up attendance: 306 Adult follow up attendance: 136

[1, 3]

Neurosurgeon

Appointments with the neurosurgeon who was responsible for the shunt operation

Patient B returned to the hospital for yearly appointments with the neurosurgeon that fitted the shunt.

Follow up attendance: 275 Adult follow up attendance: 124

[1, 3]

Orthopaedic surgeon

Appointments with an orthopaedic surgeon to check spinal development

As the patient is a wheelchair user, from age 6 until 20 she has yearly appointments with an orthopaedic surgeon who is looking for signs of scoliosis and keeps an eye on hip alignment. Corrective surgery may be required to prevent future pain.


[1, 3]

Orthotist

A raised shoe is required to help Patient Bs posture when walking short distances

Patient B is prescribed a special raised shoe and splinting to maintain the ankle at 90 degrees. She is reviewed every six weeks, then three monthly and then every 6 months. It has been assumed that an hour long orthotist appointment costs 60 and that the appointment time is 20 minutes

21 per appointment

[1, 6]

Opthalmologist

The ophthalmologist diagnoses homonymous hemianopsia

Patient B goes to see the ophthalmologist when it becomes apparent that she only seems to be aware of movement to one side of her field of vision.


[1, 3]

*Assumptions based on the clinical opinions of a paediatric immunologist, neurologist, paediatricians, and orthopaedic surgeons (see list of consultees).


Community Medicine

Table 7: Community medicine assumptions patient A

Type

Description

Assumption*

Unit costs

Source

Community Paediatrician Appointments

Patient is followed up by a community paediatrician

When the child reaches three years of age a community paediatrician sees him six monthly and then yearly until age 16.

304 per visit

[1, 3]

Community physiotherapist and OT

Patient is followed up by community therapists

Initially the community therapists (physiotherapist and OT) saw the child on average once a fortnight until he reached 4 years of age. From 4 to 13 years of age the therapists saw the child on average once a month either at school or at home. From age 13 onwards the therapists visited the school once a term.

50 per home visit

[1-2]

*Assumptions based on the clinical opinions of occupational therapists and physiotherapists (see list of consultees).


Table 8: Community medicine assumptions patient B

Type

Description

Assumption*

Unit costs

Source

Community paediatrician

Patient is referred to the nearest child development centre (CDC)

Patient sees the community paediatrician on a six monthly basis for the first three years post discharge which then decreases to yearly until age 17

304 per visit

[1, 3]

Community physio-therapist

The physiotherapist assesses the patient and provides the parents with a written care episode and ideas to help her lower body posture

The physiotherapist sees patient B on a fortnightly basis for the first four months. Then on average every 6 weeks until age 5 (this estimate includes assessments for equipment and instruction on use, which on average takes four sessions of therapists time. Includes a quarterly equipment review before the age of 5). A physiotherapy technical instructor carries out 3 blocks (one block = six hour long sessions) of treatment with patient B per year at home or at school from ages 4 to 7. Beyond 7 years of age the physiotherapy management focuses around both general and equipment reviews and visits are once per quarter until she is 19.

50 per home visit

[1-2]

Hydrotherapy

To aid walking

Child has 12 sessions of hydrotherapy aged 4

92 per hour

[1, 7]

Community Occupational Therapist (OT)

The OT helps the patient with her upper body posture

The OT sees patient on a fortnightly basis for the first four months. Then on average every month until age 6. Beyond age 6 there are quarterly reviews which include school visits where they provide advice to teachers and support assistants until age 19. The OT also makes recommendations for home adaptations. It has been assumed that each time the home needs adaptations there are an additional 5 home visits from the OT and another 10 hours of OT time associated with completing paperwork.

50 per home visit

27 per hour

[1-2]

Speech and Language therapists (SALTs)

SALTs work with the patient to help her with speech

Community speech and language therapists review patient B quarterly, whilst the therapy is delivered by a teaching assistant. At 8 years of age patient B is provided with a communication aid with input from a specialist SLT.

50 per home visit

[1-2]

*Assumptions based on the clinical opinions of paediatricians, occupational therapists, physiotherapists (see list of consultees) and on the care received by children with similar disabilities.


Specialist Equipment

Table 9: Specialist equipment assumptions patient A

Equipment*

Description

Unit Cost

Source

Splints

3 x Elbow splints to help prevent contractures

6.11 per splint

Promedics - www.promedics.co.uk

Pressure suit

8 x Pressure suit to help reduce scarring provided by the childrens hospital (the suits needed changing as he grew).

225 per suit

Jobskin - www.jobskin.co.uk

Wheelchair

Manual wheelchair with paediatric cushion and adapted leg rests

452

Stockport wheelchair services

Power wheelchair with low profile cushion and adapted leg rests

2,374

Stockport wheelchair services

Wheelchair replacement/maintenance costs

300 per year

Estimation based on wheelchair voucher scheme

Walker

2 x Crocodile walker with forearm supporters and flip down seat (he was provided with this aged 3, but he required a larger version aged 5)

865 per walker

[8]

Crutches

Adapted crutches

20

NHS Supply Chain

Therapy bench

Small therapy bench

227

Quest88

Standing Frame

Lecki size 2 prone stander

909

[8]

*Equipment has been based on the equipment received by a real child with similar disabilities. The list of equipment is not exhaustive, but an example of some of the types of equipment that an individual with such disabilities might need.

All quotes are from 2010/11

Table 10: Specialist equipment assumptions patient B

Equipment*

Description/Assumption

Cost

Source

Small therapy bench

Small therapy bench for physiotherapy exercises.

227

Quote from Quest88

Standing frame

Patient uses a standing frame once a day to help her posture for the first couple of years after discharge from hospital. She has a Leckey size 2 prone stander, which is changed to a size 3 Leckey prone stander as she grows.

1,820

[7]

Specialist seating

Patient was provided with a Leckey squiggles chair and Tumbleform feeder seat and wedge after being discharged from hospital.

1,000

[7]

Walkers

Patient had a walker, which needed upgrading as she grew. She had four different walkers in her lifetime.

495-620 per walker

Personal communication based on Kaye walker W1/2 to W3 [7]

Specialist toys

The physiotherapist and occupational therapist (OT) brought specialist toys to help the patients movement.

100

Estimate

Lycra suit

Patient is fitted for a full body lycra suit aged 3, which she continues to wear until age 6. The suit is changed on average every six months as she grows. Costs do not include fitting fees

456 per suit

Quote from Dynamic Orthotics Ltd

Sleep system

A sleep system designed to support the body during sleep is provided. This needs changing as Patient B grows. She has her first one aged 3 and this is upgraded at age 10 and 18.

1,200 per bed

[7]

Manual wheelchair

Patient gets her first wheelchair at age 3. It is a fairly basic manual chair.

417

Stockport Wheelchair Services

Wheelchair maintenance and renewal

Although the patient can walk short distances she is predominantly a wheelchair user and upgrades her chair as she grows. It is estimated that 300 is spent each year on wheelchair maintenance and upgrades

300 per year

Stockport Wheelchair Services

Orthotic Shoes

Patient gets two shoes amended every year until age 17. After age 17 she gets two shoes amended every 5 years.

36 per pair of shoes

Quote from C and S footwear

Splinting to maintain ankle at 90 degrees

Patient requires splint replacement annually.

350 per splint

Personal communication with community physiotherapist.

Communication Aid

Patient is provided with a Vanguard Plus communication aid aged 12

5,995

Quote from Liberator

*Equipment has been based on the equipment received by a real child with similar disabilities. The list of equipment is not exhaustive, but an example of some of the types of equipment that an individual with such disabilities might need

All quotes are from 2010/11

Prosthetic Provision

Table 11: Lower limb prosthetic provision assumptions

Lower Limb Prosthetic Types and Assumptions*

Component

Cost

Total

CHILD'S NON ARTICULATING PROSTHESIS

For the first 18 months the child goes through 3 non articulating prosthetics because the skin is settling down and the stumps are changing shape

socket

80

478

socket lock

110

socket block

31

pyramid adapter

56

tube clamp

50

tube

56

foot

75

cosmesis

20

CHILD'S MODULAR SAKL

At 3 to 5 years old the child is provided with modular SAKL prosthetics. The sockets are replaced twice throughout this period and the length of the legs etc is adjusted a couple of times. It was therefore assumed that the child went through two sets of SAKLs in this period of time.

socket

80

828

socket lock

110

socket block

31

pyramid adapter

56

tube clamp

50

Knee

320

tube

56

foot

75

cosmesis

50

JUNIOR ARTICULATED PROSTHESIS (MODULAR)

At 5 years old the child has modular articulated prosthetics. Two sets are provided so that the ones not in use can be amended when required. The sockets are changed every 9 months. The feet are changed every 2 years (on both sets). Initially the limbs are fitted with a basic foot, but at age 10 onwards the flexfoot junior is used. The entire limb is replaced once every two years on both sets, minus feet, sockets and cosmesis which are already accounted for.

socket

80

1938

socket lock

110

socket block

31

pyramid adapter

56

tube clamp

50

Total knee junior

930

tube

56

foot

75

cosmesis

50

Flexfoot junior

500

ADULT ARTICULATED PROSTHESIS (MODULAR)

At 14 years of age, adult articulated prosthetics are provided. Two sets are provided so that the ones not in use can be amended when required. Sockets are replaced yearly on both sets until age 21. From then on sockets are replaced on average once every five years (on both sets). One set of limbs is used for every-day use and the other is a spare set. The everyday set of limbs are renewed completely, once every two years with feet. The spare set are renewed completely once every 5 years with feet. Cosmesis on the everyday set is replaced yearly and every five years on the spare set.

socket

80

3100

socket lock

110

socket block

45

pyramid adapter

50

tube clamp

50

Adult knee

1350

tube

15

Flexfoot adult

1100

Cosmetic skin cover

250

Foam cosmesis under skin

50

STUBBIES

At 3 years of age the child has stubbies for getting around the house in (same as non-articulating prosthesis without the feet).These are replaced on a 9-monthly basis throughout his childhood and on average every four years as an adult.

socket

80

403

socket lock

110

socket block

31

pyramid adapter

56

tube clamp

50

tube

56

cosmesis

20

SOCKET REPLACEMENTS

The interface between the stump and prosthetic needs to be changed every time the stump changes shape

socket

80

221

socket lock

110

socket block

31

SILICON GEL LINER

Liners for the lower limbs are changed on a 6 monthly basis

gel liner

350

350

SWIMMING PROSTHESIS

At six years of age the child is provided with waterproof swimming legs so that he can get to and from the swimming pool unaided. Sockets are replaced yearly until he reaches 21 years of age and from then on sockets are replaced once every five years. The rest of the limb is replaced on average once every five years

socket

80

1185

socket lock

110

socket block

45

pyramid adapter

50

tube clamp

50

Knee

300

tube

15

Foot

85

Flipper ankle

400

Waterproof cover

50

*Assumptions based on the clinical opinions of occupational therapists, physiotherapists, consultants in rehabilitation medicine and prosthetists (see list of consultees).Source: NHS Catalogue of Prosthetic Components, NHS Supply Chain (2010/11)

Table 12: Upper limb prosthetic provision assumptions

Upper Limb Prosthetic Types and Assumptions*

Component

Cost

Total

SILICON GEL LINER

Liner for the upper limb is changed on a 6 monthly basis

gel liner

350

350

CHILD'S COSMETIC BELOW ELBOW PROSTHESIS

The child has a cosmetic below elbow prosthesis from 22 months onwards. The limb is replaced on average twice a year while the child grows and the socket size needs changing. The child upgrades to an adult prosthetic arm aged 15.

Hand

113

213

Cosmetic glove

68

Corset

21

Housing

11

CHILD'S MECHANICAL FUNCTIONAL BELOW ELBOW PROSTHESIS

The child has this prosthesis from 22 months onwards. The socket is replaced on average twice a year and the limb is used up until age 15. The cosmetic glove for the mechanical hand needs replacing once every six months. The hands are replaced once every two years to keep up with the child's growth.

Wrist rotary

157

1152

Mechanical hand

224

Hand plate

98

TRS Sports hand

550

Wrist Adaptor (TRS Sports Hand)

40

Cosmetic glove for mechanical hand

83

CHILD'S MYOELECTRIC FUNCTIONAL BELOW ELBOW PROSTHESIS

The child has this prosthesis from 22 months onwards. The socket is replaced on average twice a year and the limb is used up until age 15. The cosmetic glove needs replacing once every six months. The hand is upgraded in size three times as the child grows and serviced three times (i.e. upgraded or serviced once every two years).

Bock Electrohand

4028

7044

Electrodes x2

1208

Cables x2

66

Laminating ring

83

4 in 1 controller

795

Coding plug

14

Battery cable

35

Battery holder

39

Battery x2

395

Battery charger

220

Cosmetic glove

161

Hand Service

900

Exchanged hand

1950

ADULT COSMETIC BELOW ELBOW PROSTHESIS

This prosthesis is worn from age 15 upwards. As most growth has already happened the socket and rest of the arm has been estimated to need replacing once every 5 years on average. The high definition glove needs replacing once every four years.

Foam Hand

113

3110

Hand plate

31

Foam kit

29

High definition silicone glove

2938

ADULT BELOW ELBOW PROSTHESIS WITH A SPLIT HOOK

This prosthesis is used from age 15 upwards. The whole limb has been estimated to need replacing once every 10 years. The socket has been estimated to need changing every 5 years.

Wrist rotary

192

811

Wrist housing

41

Split hook (Stainless Steel)

485

Adaptor

41

TD Con35nector

7

S Hook

6

Hand plate

39

ADULT BELOW ELBOW MYOELECTRIC PROSTHESIS

This prosthesis is used from age 15 upwards. The socket and housing have been estimated to need replacing once every five years. It has been assumed that the hand will be serviced once every two years and returned for exchange once every eight years. The cosmetic glove is estimated to need replacing once per year and the batteries estimated to be lasting two tears at a time before needing replacement.

Bock hand

3363

5662

Lamination ring

80

Coupling

25

Coax plug

100

Electrodes (2)

1208

Cables

67

Batteries

356

Battery holder

27

Battery charger

226

Battery cable

32

Coding plug

14

Cosmetic glove

166

Hand Service

900

Exchanged hand

1950

SOCKET REPLACEMENTS

socket

80

80

*Assumptions based on the clinical opinions of occupational therapists, physiotherapists, consultants in rehabilitation medicine and prosthetists (see list of consultees).Source: NHS Catalogue of Prosthetic Components, NHS Supply Chain (2010/11)

Stump Revisions and Skin Graft Surgery

Table 13: Stump revision and skin graft surgery assumptions

Procedure and age of child when procedure undertaken

Code type

Inputs*

Hospital Spell HRG

Cost

Bony overgrowth in arm stump aged 3

ICD10

T876 Other unspecified complications of Amputation stumps

QZ12Z

3,402

OPCS

X123 Shortening of length of amputation stump

X124 Revision of coverage of amputation stump

S576 Cleansing and sterilisation of skin NEC

S574 Dressing of skin NEC

Bony overgrowth in leg stump aged 5

ICD10


QZ12Z

3,402

OPCS





Insertion of skin expanders and contracture relaxation procedure aged 7

ICD10

L90.5 Scar conditions and fibrosis of skin

JC04C

2,306


B948 Sequelae of other specified infectious and parasitic diseases

OPCS

S488 Other specified insertion of skin expander into subcutaneous tissue

S238 Other specified flap operations to relax contracture of skin



Removal of skin expanders and flap operation aged 8

ICD10


JC03C

2,234



OPCS

S494 removal of skin expander from subcutaneous tissue NEC

Y573 Harvest of axial pattern flap of skin from scapular region

S312 Transfer of flap of skin NEC



Bony overgrowth in arm stump aged 10

ICD10


QZ12Z

3,402

OPCS





Bony overgrowth in leg stump and contracture relaxation aged 12

ICD10


QZ12Z

3,402

OPCS



S238 Other specified flap operations to relax contracture of skin



Bony overgrowth in leg stump 14

ICD10


QZ12Z

3,402

OPCS





Skin grafting due to break down of previous skin grafts aged 16 and 19

ICD10


JC17Z x 2

3,424


OPCS

S369 Unspecified other autograft of skin


*The ICD10 and OPCS codes used to put into the grouper were obtained by submitting descriptions of the procedures undertaken to data standards at NHS connecting for health, who then provided the appropriate codes. Descriptions of the procedures were obtained by talking through the scenario with orthopaedic surgeons and plastic surgeons (see list of consultees).

Costs sourced from DoH reference costs [3]. Full department of health reference cost data associated with each of the hospital spell HRG codes are available as items 9 and 10 in table 29. Costs have been uprated from 2008/09 to 2010/11 prices using the HCHS pay and prices inflator[1]

After the flap operation the child spends a day in PICU at 2,411[1, 3].

Behavioural Problems

Table 14: Behavioural problem resource use assumptions and costs

Treatment

Assumption

Cost

Source

First appointment with child psychiatrist

The cost of the appointment includes a clinical psychiatric assessment

408

[3]

Ten sessions at a parenting group

Assumes that the parents of 13 children attend the group.

157 per child for ten sessions

[9]

Outpatient appointments with a child psychiatrist

The child attends outpatient appointments six times in the first year, then on a six monthly basis until age 18. Beyond this appointments are yearly until age 60

215 per appointment

[3]

Medication

The child starts taking medication at age 5 when he starts primary school in order to help his concentration and remains on medication until age 17. The price is based on an average dosage of 40mg/day immediate release methylphenidate

292 per year

[9]

Costs have been uprated from 2008/09 to 2010/11 using the HCHS prices inflator[1]

Cochlear Implants

Table 15: Cochlear implant service use assumptions and costs

Service

Description

Cost*

Full assessment

Detailed hearing assessment before undergoing implantation

4,900

Bilateral Implantation

Includes all costs associated with the operation and the device implanted plus a second device

28,872

Additional costs in Year 1

Second set of external parts including processor, rehabilitation and tuning, spares and batteries

15,475


Ongoing care and technical support for bilateral implants including medical; check, tuning, batteries, spares and upgrade of processors

7,550



5,150

Additional costs each year until age 18


4,900

Additional costs each subsequent year from 18 onwards


4,550

* Based on 2010/11 prices from South of England Cochlear Implant Centre [10]Additional costs include 10 appointments with the key contact (speech and language therapist or teacher of the deaf) either at home, at school/nursery or in the clinic and eight tuning appointments with the audiologist in the clinicAdditional costs include 6 appointments with the key contact (speech and language therapist or teacher of the deaf) either at home, at school/nursery or in the clinic and two tuning appointments with the audiologist in the clinic.

Public Health

Table 16: Public health resource use assumptions and costs patient A

Public Health Action

Assumption

Cost*

Source

Chemoprophylaxis is supplied to the immediate family

The child has one brother aged 4 and lives with both parents. The parents each take 600mg Rifampicin twice daily for two days and the child takes 150mg Rifampicin twice daily for two days [11].

8

BNF[12-13]

Contact Tracing and Information sharing

HPU undertakes contact tracing. The CCDC ensures that information is made available to the nursery and to the parents of children who attend that nursery. The CCDC must also ensure that information about the case is shared with other NHS colleagues and external agencies as necessary[11]

100

Estimate (four hours of staff time)

Blood sample is processed at MRU

The sample is processed and PCR undertaken to identify the type of bacteria present in the blood

46

[14]

Table 17: Public health resource use assumptions and costs patient B

Public Health Action

Assumption

Cost

Source

Chemoprophylaxis is supplied to the immediate family

The child has one brother aged 4 and lives with both parents. The parents each take 600mg Rifampicin twice daily for two days and the child takes 150mg Rifampicin twice daily for two days[11]

8

[12-13]

Contact Tracing and Information sharing

HPU undertakes contact tracing. The CCDC ensures that information is made available to the nursery and to the parents of children who attend that nursery. The CCDC must also ensure that information about the case is shared with other NHS colleagues and external agencies as necessary[11]

100

Estimate (four hours of staff time)

Cerebrospinal fluid (CSF) sample is processed at MRU

The sample is processed and PCR undertaken to identify the type of bacteria present in the blood

46

[14]

The sample is cultured and the bacterial isolate is processed to identify the bacterial serotype.

111

General Health Problems

Table 18: General health problems assumptions and costs

Health Issue

Assumption

Cost

Source

Pain

Child is given approximately 480 mg of paracetamol throughout the day in the form of Kalpol for the first two months out of hospital

0.06 per day

[12]*

After two months, the child is given paracetamol suppositories to help the pain. She is given 750 mg of paracetamol throughout the day in the form of suppositories until she reaches 6 years old

6.90 per day

[12]*

Constipation

Lactulose is given daily to relieve her constipation. She takes 10ml per day until age 5 and 20ml per day until age 10

0.03 per 5ml

[12]*

Double Incontinence

The patient is provided with 4 nappies per day by the NHS beyond the age of three.

69.27 per month

[15]

When she reached 7 she was provided with 4 pull up incontinence pants per day on the NHS

116.60 per month

*2010/11 prices

Costs have been uprated from 2008/09 to 2010/11 prices using the HCHS prices inflator[1]

Epilepsy Management

Table 19: Epilepsy management assumptions and costs

Age of Patient

Medication type and dosage

Cost per year

Source*

3 to 5

400mg sodium valproate per day

95

[12]

6 onwards

600mg sodium valproate per day

142

*2010/11 prices

Shunt Revision Surgery

Table 20: Shunt revision surgery assumptions and costs

Age

5

11

28

33

48

Reason for admission

Shunt maintenance

Blocked shunt

Shunt maintenance

Blocked shunt

Shunt maintenance

Type of admission

elective

non-elective

elective

non-elective

elective

Intensive care

n/a

2 days PICU

n/a

2 days ICU

n/a

Total time in hospital

Under 15 days

Under 15 days

Under 15 days

Under 15 days

Under 15 days

ICU/HDU cost*

n/a

4,654

n/a

2,388

n/a

CT scan cost*

202

202

202

202

202

Hospital spell HRG cost*

4,415

5,408

4,415

5,408

4,415

Total cost

4,783

10,634

4,783

8,286

4,783

*Source: DoH[3] (see Table 29 - HRG codes and associated costs)

Total costs have been uprated from 2008/09 to 2010/11 prices using the HCHS pay and prices inflator[1]

Personal Social Services

Table 21: Personal social services assumptions and costs patient A

Cost Category

Assumption

Cost

Source*

Social care assessment, home visits and reviews.

An assessment is undertaken to see what support the family require in terms of services such as home help and short break provision.

Patient A has his initial assessment for direct payments at 21 and then has a review on an annual basis thereafter.

349 for initial assessment 201 per annual review

[16]

Direct payments including assessments and reviews

It has been assumed that at 21 when Patient A begins to live independently he will have a personal assistant home care worker who is paid via direct payments. The home care worker comes in for 7 hours a week at a cost of 19 an hour includes all the employer related funds required for employing a personal assistant.

7,206 per year in direct payments

[2]

*Costs have been uprated from 2008/09 to 2010/11 prices using the PSS pay and prices percentage increases for local authority adult and childrens services[17]

Table 22: Personal social services assumptions and costs patient B

Cost Category

Assumption

Cost*

Source

Social care assessment, home visits and reviews.

An assessment is undertaken to see what support the family require in terms of services such as home help and short break provision.

Patient is given a core assessment followed by a panel discussion. The family are then subject to regular visiting and review procedures. Patient received a home visit by a social worker every six weeks and a review every six months. Once she reached 19 years of age it has been assumed that she had two visits from a social worker per year and an annual review.

526 per core assessment

[16]

100 per panel discussion

79 per home visit

201 per annual review

Direct Payments Families that require home help can receive direct payments. This enables them to employ a helper directly.

As patient is one of two children and one parent leaves early for work, it has been decided that the family are entitled to a home helper for three hours a day, five days a week. The family receive this help whilst patient is at school (for 38 weeks of the year) Once patient is 16 the home help is reduced to 8 hours of home sitting per month. The cost of the home care worker is 19/hour which includes employer related funds required for employing a home helper.

297 per week before age 16 40 per week after age 16

[2]

Residential overnight provision

From age 7 onwards patient spends one weekend every two months in a specialist residential unit to give the family a break from caring.

589 per weekend

[16]

Residential care home

At 40 years of age patient moves full time to residential care for younger adults with physical and sensory impairments.

1,387 per week

[2]


Government costsEducationLearning Support Assistant

Table 23: Learning support assistant assumptions and costs Patient A

Age and School

Assumptions

Cost Per Year*

3 and 4 Nursery

Learning support assistant is on a salary of around 13,465 per year (2010/11)[18]. Total annual cost including pension at 5% is 14,138.

Patient A attends Nursery for 570 hours each year. This is based on the entitlement of all children to 15 hours free education per week for 38 weeks a year aged 3 and 4. Salary has been halved to account for the part-time nature of this post.

7,069

5 to 13 Primary and secondary school

The learning assistant has a salary of 13,465 per year (2010/11) [18] and is with the child throughout the entire school day. Total cost including pension at 5% is 14,138.

14,138

Special Educational Needs School

Table 24: Special needs school assumptions and costs Patient B

Age and School

Assumptions

Additional cost per year

Source*

Age 4

At 4 years of age Patient B attends a special educational needs nursery for five days a week (135/day x 5 days/week x 38 weeks = 25,650 in 2007/08 = 27,369 in 2010/11 ).At 3 and 4 years of age, non disabled children are entitled to 12.5 hours per week of free early education for 38 weeks each year at a cost of 3.50 per hour (3.50 x 12.5 x 38 = 1,662 in 2009/10 =1,709 uprated to 2010/11).

25,660

[16, 19]

5 to 19 years old Special needs school

At 5 years of age, Patient B attends a maintained special school full time (from 0845 to 1530 five days a week) at a cost of 73 per school day 2007/08 (73 x 190 school days = 13,870= 14,799 in 2010/11) Costs of a primary school are 16 per school day 2007/08 (16 x 190 school days = 3,040 = 3,244 in 2010/11).Cost s of a secondary school are 21 per school day 2007/08 (21 x 190 school days = 3,990 = 4,257 uprated to 2010/11).

11,555Until age 10

10,542Until age 19

[20]

*Costs have been uprated to 2010/11 prices using the PSS pay and prices percentage increases for local authority adult and childrens services[17]

Transport to and from school

An investigation of SEN transport costs undertaken by the department for education and skills (DfES) found that the average cost of transport per year per pupil carried was 3,594 in financial year 2003/04[21], which equates to 4,478 when uprated to 2010/11 prices using PSS pay and prices percentage increases for local authority adult and childrens services[17].

Special Educational Need (SEN) statement

Table 25: Special educational needs statement resource assumptions and costs

Process

Description

Cost

Source*

Issue of statement

Producing a SEN statement including an initial assessment, decision at a SEN panel and writing up the statement

538

[20]

Additional work associated with statementing a child with complex needs

532

Additional work associated with making changes to the statement before issue

147

Review of statement

Annual review

188

Additional work associated with changes made to the statement as a result of the annual review

103

Additional work associated with reviewing a statement for a child with complex needs

212


School adaptations and equipment

Table 26: School adaptations and equipment assumptions and costs

Description

Cost

Source

New Bathroom x 2

16,216

[2]*

Grab rail x 2

57

[2]*

Hoist x 2

2,838

[2]*

Small Therapy Bench

227

Quest88

Large Therapy Bench

268

Quest88


Other Costs to Government

Table 27: Other government costs patient A

Cost Category

Assumption

Cost

Source

DIRECT COSTS

Disabled Facilities Grant This grant can be used foradaptations to give an individual better freedom of movement into and around their home and/or to provide essential facilities within it.

The family home needs extensive work including adding simple concrete ramps (674 each), adapting existing rooms to make a new downstairs bathroom/shower (8122) and bedroom, widening doors around the house suitable for wheelchair access (529 each), stair lift (2728), lowering light switches etc. It has been assumed that patient A receives two of these grants during his lifetime. One to adapt the family home he lives in as a child and another to adapt a home he lives in as an adult. It has been assumed that he receives the maximum grant of 30,000.

31,260 per grant received

[2]*

Governments Specialised Vehicle Fund The Specialised Vehicles Fund provides financial assistance to those severely disabled scheme customers who require complex vehicle adaptations that allow them to enter a car as a passenger while remaining seated in their wheelchair or enables them drive their car while seated in their wheelchair.

In 2008-9 the governments Specialised Vehicle Fund received 17,036,000 in funding and adapted a total of 1,812 cars, giving an average spend of 9,402 per car adapted[22]. It has been assumed that as a child, patient As parents get their car adapted to accommodate a wheelchair passenger three times and that from age 30 onwards patient A gets a newly adapted car every five years.

9,797 per adaptation

[22]*

Disabled Students' Allowances (University non medical helper)

Patient A requires a non medical helper to assist in lectures and library.

20,520 per year

[23]

Disabled Students' Allowances (University equipment)

Patient A get s a yearly grant for any special equipment he requires to help him access the curriculum.

5,161 for entire course

[23]


Table 27(continued): Other government costs patient A

Cost Category

Assumption

Cost

Source

INDIRECT COSTS

Lost Tax revenue from the mothers unemployment

Patient As mum gives up her job when patient A becomes ill so that she can look after him full time. 84% of mothers of disabled children do not work compared to 39% of other mothers[24]. It has been assumed that she earned the average wage of 26,200 (2011 national yearly wage) and that 20% of her earnings (above the tax free allowance for 2010/11 of 6,475) are lost to the government in the form of income tax revenue. She remains without a job until patient A reaches 21 years of age.

3,945 per year of unemployment

[24-26]

Lost Tax revenue from patient As unemployment

Patient As job opportunities are restricted by his disabilities. He gets a part-time job aged 21 which pays 6,000 per year. As he earns below the tax threshold he pays no income tax. It has been assumed that with no disabilities, patient A would have worked full time from age 20 onwards and receive the average wage of 26,200. 20% of earnings above the tax free allowance of 6,475 for 2010-11 have been counted as lost tax revenue.


[24-26]

TRANSFER PAYMENTS

Carers Allowance

One parent has given up work to be full time carer to their child and receives carers allowance at 53.90 per week (2010-11)

2,803 per year

[27]

Child Tax Credits

Tax credits have been based on the difference between a family where both parents are working and both children are healthy and a family where one parent is working and one child of two is severely disabled. It has been assumed that each working adult earns the average wage.

3,254 per year

[28-29]

Disabled Living Allowance (Mobility)

Patient A receives the highest rate mobility allowance from age 3 onwards. He is classed in the virtually unable to walk category because he is limited by the distance and length of time he is able to walk using his prosthetics.

2,592 per year

[30]

Disabled Living Allowance (Care)

Patient A receives different levels of the care component of DLA throughout his lifetime. From the age of 2 onwards he receives the high rate of DLA. From age 12 to 18 this is reduced to medium rate and from age 18 to 64 he gets low rate DLA. From 65 onwards he collects medium DLA as he needs extra assistance day to day.

3,713 per year (high) 2,486 per year (medium) 985 per year (low)

[30]

Disabled Students' Allowances (General)

Patient A is entitled to claim for this general allowance whilst he is a student.

1,724 per year

[23]

Working Tax Credits

Patient A has a part time job and works 16 hours per week. His annual salary is 6,000 which entitles him to the maximum tax credit for his circumstance.

4,490 per year

[28-29]

Housing Benefit

Payment is based on patient A living in a two bedroom house in Bristol. Payments start from when patient A moves into his own place aged 21.

7,480 per year

[31]

Council Tax Benefit

Payments are based on patient A living in a band B area for council tax purposes.

914 per year

[31]

Pension Credit

By the time patient A reaches pensionable age (65) he has less than 3,000 of savings. He receives state pension and other benefits, but also receives pension credits to top up his income. It has been assumed that his rent is 375 per month for the calculation.

6,895 per year

[31]

Table 28: Other government costs patient B

Cost category

Assumption

Cost

Source

DIRECT COSTS

Disabled Facilities Grant

The family home needs extensive work including simple concrete access ramps (674 each), a new downstairs bathroom/shower and bedroom with hoist (8122), widening doors (529 each), stair lift (2728), lowering light switches etc. Patient B receives one of these grants during her lifetime.

31,260 per grant received

[2]*

This grant can be used foradaptations to give an individual better freedom of movement into and around their home and/or to provide essential facilities within it.

Governments Specialised Vehicle Fund (SVF)

In 2008-9 the governments Specialised Vehicle Fund received 17,036,000 in funding and adapted a total of 1,812 cars, giving an average spend of 9,402 per car adapted[22]. It has been assumed that patient Bs parents get their car adapted to accommodate a wheelchair passenger every five years.

9,797 per adaptation

[22]*

The SVF provides financial assistance allowing disabled customers to enter a car as a passenger while remaining seated in their wheelchair or enabling them to drive their car while seated in their wheelchair.

INDIRECT COSTS

Lost Tax Revenue from the mothers unemployment

Patient Bs mum was 25 when she gave up her job to care for her child. 84% of mothers of disabled children do not work compared to 39% of other mothers[24]. It has been assumed that she earned the average wage of 26,200 (2011 national average wage) and that 20% of her earnings (above the tax free allowance for 2010-11 of 6,475) are lost to the government in the form of income tax revenue. She remains patient Bs carer until patient B moves to a residential care home aged 40. It has been assumed that had patient B not become ill, that her mother would have continued to work full time until age 65.


[24-26]

Lost Tax Revenue from patient Bs unemployment

Patient Bs disabilities mean that she is unable to work. It has been assumed that with no disabilities, patient B would work full time from age 20 onwards and receive the average wage of 26,200. 20% of earnings above the tax free allowance of 6,475 for 2010-11 have been counted as lost tax revenue.


[24-26]

TRANSFER PAYMENTS

Carers Allowance

One parent has given up work to be full time carer to their child and receives carers allowance at 53.90 per week (2010-11)

2,803 per year

[27]

Child Tax Credits

Tax credits have been based on the difference between a family where both parents are working and both children are healthy and a family where one parent is working and one child of two is severely disabled. It has been assumed that each working adult earns the average wage.

3,254 per year

[28-29]

Disabled Living Allowance (Mobility)

Patient B receives the highest rate mobility allowance from age 3 onwards. She is classed in the virtually unable to walk category.

2,592 per year

[30]

Disabled Living Allowance (Care)

Patient B requires full time care for the rest of her life and as such, qualifies for the highest rate of disability allowance

3,713 per year (high)

[30]


List of consultees

Name

Profession

Address

Dr Tom Allport

Senior Clinical Lecturer in Child and Adolescent Health

University of Bristol

Dr Hareth Al Janabi

Research Fellow

Health Economics Unit, University of Bristol

Mr Stephen Andrews

Clinical Manager, Prosthetics

Disablement Services Centre, North Bristol NHS Trust, Southmead Hospital

Dr Ed Bache

Consultant, Paediatric Orthopaedics

The Royal Orthopaedic Hospital, Birmingham

Ms Wendy Blumenow

Senior Speech and Language Therapist

Alder Hey Children's NHS Foundation Trust

Ms Hannah Christensen

PhD student

Department of Social Medicine, University of Bristol

Dr Andrew Curran

Consultant Paediatric Neurologist


Dr Liam Dorris

Consultant Paediatric Neuropsychologist

Glasgow Royal Hospital for Sick Children

Ms Kathie Drinan

Paediatric physiotherapist, Specialist in Paediatric Neurology

Miss Sian Falder

Consultant, Plastic Surgery


Dr Saul Faust

Senior Lecturer in Paediatric Immunology and Infectious Diseases

University of Southampton

Prof Elena Garralda

Clinical Professor, Academic Unit of Child and Adolescent Psychiatry

Imperial College London

Ms Katie Harrison

Principal Physiotherapis

Birmingham Childrens Hospital

Ms Helen Hartley

Specialist Paediatric Physiotherapist Acute neurosciences


Ms Caroline Haines

Consultant Nurse, Paediatric Intensive and High Dependency Care

Bristol Royal Hospital for Children

Dr Serena Haywood

Consultant Neurodevelopmental Paediatrician

The Childrens Trust

Dr Paul Heath

Consultant, Paediatric Infectious Diseases

St Georges University of London

Ms Madeline Pilbury

Community Physiotherapist

Stockport

Dr David Inwald

Consultant in Paediatric Intensive Care Medicine

St. Mary's Hospital, London

Paul Jacklin

Research Fellow Senior Health Economist

National Collaborating Centre for Womens and Childrens Health, London

Ms Vicki Kirwin

Audiologist and Development Manager (Audiology and Health)

The National Deaf Childrens Society

Dr Rachel Kneen



Prof Jai Kulkarni

Consultant in Rehabilitation Medicine

Disablement Services Centre, University Hospital of South manchester

Mr Si Chun Lam

Previously Development Officer

Children, Learning and Young People's Directorate, Coventry City Council

Dr Alison Mckendrick

Doctor in Rehabilitation Medicine

Disablement Services Centre, University Hospital of South Manchester

Ms Jane McLaughlin

Occupational Therapist

Disablement Services Centre, University Hospital of South Manchester

Mr Fergal Monsell

Consultant Paediatric Orthopaedic Surgeon


Dr Kevin Morris

Consultant Paediatric Intensive Care Physician

Birmingham Childrens Hospital

Dr Simon Nadel

Consultant in Paediatric Intensive Care


Dr Nelly Ninis

Consultant in General Paediatrics


Ms Niamh OMahoney

Physiotherapist, Limb Reconstruction Team


Ms Marnie Punchard

Lead Prosthetic Therapist

Exeter Mobility Centre

Dr Andrew Riordan

Consultant in Paediatric Infectious Diseases and Immunology


Dr Stuart Rowe

Lead Commissioner for PICU

London Specialised Commissioning Group

Miss Lisa Sacks

Consultant Plastic and Reconstructive Surgeon

Formerly at Bristol Royal Hospital for Children

Dr Peta Sharples



Ms Katherine Thomson

Advanced Practitioner (Community Physiotherapy)

Central Lancashire

Ms Gail Treml

previously SEN Professional Advisor

DfES

Dr Caroline Trotter

Epidemiologist

Department of Social Medicine, University of Bristol

Many Individuals at NHS Information Centre and Connecting for Health

Individuals at the Ear Foundation, Nottingham

Individuals at South of England Cochlear Implant Centre ISVR, University of Southampton

Six families with similar experience to Patient A and six families with similar experience to patient B, most have given consent for their names to be published in connection with this document, and can be supplied on request.

HRG Codes and Associated Costs

Table 29: HRG codes and associated costs (from DoH reference costs 2008-9)

Item No.

Description and duration of hospital spell

Currency Code

Currency Description

Activity

National Average Unit Cost

Lower Quartile Unit Cost

Upper Quartile Unit Cost

Trim-point

1

Ambulance to A&E

PSETU

Emergency Transfers / Urgents

493,542

240

206

362

n/a

2

A&E investigation

VB01Z

Any investigation with category 5 treatment

30,651

116

32

144

n/a

VB02Z

Category 3 investigation with category 4 treatment

10,037

298

196

360

VB03Z

Category 3 investigation with category 1-3 treatment

183,196

184

109

214

VB04Z


153,345

184

153

222

VB05Z


181,186

160

118

181

VB06Z


82,878

114

84

131

VB07Z


263,740

149

118

166

VB08Z


1,464,395

142

105

161

VB09Z


668,233

94

73

109

A&E Investigation Weighted Average

135.97

3

Transferral to PICU by retrieval team

XB08Z

Paediatric Critical Care Transportation

3,320

2,417

1,983

2,871

n/a

4

PICU

XB05Z

Paediatric Critical Care Intensive Care Basic

47,171

2,327

1,894

2,246

n/a

5

Diagnostic Imaging

RA01Z

Magnetic Resonance Imaging Scan, one area, no contrast

103,026

206

175

209

61

RA08Z

Computerised Tomography Scan, one area, no contrast

156,338

101

90

130

65

6

Medical care during acute illness (scenario 1)

HR06B

Non-Elective Inpatient (Long Stay) HRG Data - Reconstruction Procedures Category 1 18 years and under

358

3,364

1,889

3,697

6

HR06B

Non-Elective Inpatient (Long Stay) HRG Data - Reconstruction Procedures Category 1 18 years and under - Excess bed day rate

298

490

271

672

7

Medical care during acute illness (scenario 2)

AA10Z

Non-Elective Inpatient (Long Stay) HRG Data -Intracranial Procedures Except Trauma with Non-Transient Stroke or Cerebrovascular Accident, Nervous system infections or Encephalopathy - category 3

54

12,828

7,757

16,022

72

8

Rehabilitation (scenario 2)

VC06Z

Rehabilitation for Brain Injuries - Specialised rehabilitation services (SRS) (Level 2) - Bed Days: Admitted Patient Care

1,452

398

398

398

n/a

Table 29(continued): HRG codes and associated costs (from DoH reference costs 2008-9)

Item No.

Description and duration of hospital spell

Currency Code

Currency Description

Activity

National Average Unit Cost

Lower Quartile Unit Cost

Upper Quartile Unit Cost

Trim-point

9

Stump revision operations

QZ12Z

Elective inpatient HRG data - Foot Procedures for Diabetes or Arterial Disease, and Procedures to Amputation Stumps

1,337

3,284

1,957

3,807

32

JC04C

Elective inpatient HRG data - Intermediate Skin Procedures without CC

2,892

2,226

1,745

2,739

6

JC03C

Elective inpatient HRG data - Major Skin Procedures category 1 without CC

2,156

3,074

2,144

3,668

9

10

Skin grafting operations

JC17Z

Elective inpatient HRG data - Skin Therapies level 5

1,238

1,653

1,298

1,978

11

Shunt maintenance and renewal operations

AA19Z

Elective inpatient HRG data - Intracranial Procedures Except Trauma with Cerebral Degenerations or Miscellaneous Disorders of Nervous System - category 1 or 2

1,203

4,415

2,705

5,352

15

AA19Z

Non elective inpatient HRG data - Intracranial Procedures Except Trauma with Cerebral Degenerations or Miscellaneous Disorders of Nervous System - category 1 or 2

1,099

5,408

4,258

6,232

15

12

Adult Critical Care - 2 Organs Supported

XC05Z

NHS Trusts and PCTs combined Critical Care Services - Adult: Critical Care Unit

330,087

1,194

962

1,380

n/a

A HRG code has a range of costs associated with it. We have used the National average unit cost associated with each HRG.

References

1.Department of Health. NHS Finance Manual - Health Service Cost Index 2011/12. 2012 24/07/2012]; Available from: http

Documents

Patient A Scenario Description - Springer Static Content …10.1007... · Web viewEpilepsy Management20 Shunt Revision Surgery20 Personal Social Services21 Government costs22 Education22