Current status of long term ventilation of children in the United Kingdom: questionnaire surveyBMJ 1999; 318 doi: https://doi.org/10.1136/bmj.318.7179.295 (Published 30 January 1999) Cite this as: BMJ 1999;318:295
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Jardine Et Al (1) report on the current status of long term
ventilation of children in the UK, and comment that funding and home
carers are common obstacles to discharge. I am writing to describe the
scheme used in Liverpool which has largely overcome these obstacles.
The Health Authority and Local Authority have agreed on eligibility
criteria for joint funding for children with complex needs which has
removed the delay previously caused by funding negotiations. The
eligibility criteria are based on the discussion document produced in 1994
(2) by a working party of the British Association of Community Child
Health and Department of Health. This document aims to define childhood
disability by producing a functional grading of severity. This was
intended to assist the implementation of the Children Act Regulations
concerning disabled children by defining the target population.
Disability, or impairment, is assessed in 10 categories which cover
mobility and hand function, sensory impairment, personal care, physical
health and learning including behaviour and communication. We have added
an 11th category, vulnerability, to include technology dependent children
such as those children on long term ventilation.
The criteria are descriptive and objective so easy to apply,
consistent, fair and equitable. Those who fulfil the jointly agreed
criteria are eligible for joint funding split 50/50 between Social
Services and the Health Authority for a home care package, or a 3 way
split to include Education if there is an element of school support in the
The joint funding scheme has been in existence for 18 months. We
have had two new long term ventilated children during this time.
It takes approximately 2 weeks following initial referral to the Home
Care Project Manager for the criteria to be applied using clinical
information already available and for the Health Authority and Social
Services to be approached for funding. It took 2-4 weeks for the Health
Authority to then confirm joint funding with Social Services, with a
further 4 weeks in the case of one of the children for an additional
educational agreement to funding.
Home care is provided by lay carers (ie carers with no nursing
qualifications) supported by a qualified paediatric nurse. Carers are
recruited from scratch, or brought in from agencies such as Crossroads
where there is a need for urgent support (for example to fill in the gap
while carers are being trained) or to provide a care package with very
short or difficult hours which would be otherwise difficult to recruit to.
The carers are employed by the Royal Liverpool Childrens (NHS) Trust which
is responsible for recruitment, training and supervision. Training is
patient specific, and is delivered both in hospital and at home by the
support nurse, assisted by high dependency unit and special school nursing
staff. The training includes those topics mandatory for Trust employees
such as health and safety and is regularly reviewed and updated according
to Trust policies. The main delay in the process is recruitment and
training of carers, with a minimum training period of 6 weeks. Potential
difficulties are carer turnover, cover for sickness (as training is
patient specific carers cannot currently cover for other families), and
what to do with carers during intercurrent acute admissions for the child.
There is the possibility of confusion for the carer of lines of
accountability between the family and the support nurse. Clear practices
and procedures should avoid any medico-legal implications.
We currently have 4 children on long term ventilation at home, 3 on
intermittent positive pressure ventilation via tracheostomy and 1 child on
nasal CPAP overnight. These 4 children are supported by 10 carers. The
current budget for these 4 children is 108,000 per annum which covers the
care packages but not the capital cost of equipment. An example of a care
package for 1 of the new long term ventilated children at home is as
Lay carers 'B' Grade: 365 nights a year - 10 hours a night
School days - 40 hours a week
Holidays - 16 hours a week
'E' Grade nurse support - 1 day a week
Cost £55,500 - shared 50/50 Health and Social Services for night
cover and day-time holiday cover and 3 ways to include Education for day-
time cover on school days. Capital costs for equipment
of £9,000 were met by the Health Authority. Consumables are
funded by the Health Authority via North Mersey Community Trust.
Funding arrangements and provision of carers are therefore not major
obstacles to discharge. A more major problem is setting a budget as small
variations in numbers of children cause large variations in cost. We have
currently estimated, based on experience over the last 6 years, that there
will be 2 new children requiring long term ventilation per year.
Jardine E, O'Toole M, Paton J.Y, Wallace C. Current Status of Long
Term Ventilation of Children in the United Kingdom: Questionnaire Survey.
BMJ 1999; 318: 295-299.
British Association for Community Child Health (1994) Disability in
Childhood; Towards Nationally Useful Definitions. Discussion Document.
London. British Paediatric Association.
Dr Sian Snelling
Consultant Community Paediatrician
Competing interests: No competing interests