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The new oxygen service—providing consistency throughout the UK
Home oxygen therapy services have a vital role in supporting children with breathing difficulties, including those with long‐term medical conditions such as chronic lung disease of the newborn, pulmonary interstitial fibrosis, neurodisability and cystic fibrosis.1 This article discusses the practicalities of prescribing oxygen for children who require it in the home.
Until recently, oxygen was prescribed by the patient's general practitioner (GP), with a supplier providing the oxygen concentrator service and local pharmacies supplying oxygen cylinders to patients in their homes. Liquid oxygen was only available following application to the primary care trust (PCT) for funding. This resulted in variations and inconsistencies throughout the UK in the way home oxygen was prescribed, used and delivered. In 2003, the Department of Health2 announced plans to modernise the domiciliary oxygen service to improve patient access to a wider range of modern technologies supporting patients' clinical care and other needs. The aim was to improve quality of life, ambulatory oxygen provision, holiday provision in the UK and safety. From February 2006, following the development of new service specifications and a competitive tendering process, four companies (Air Products, Allied Respiratory, Linde Gas and BOC) were awarded contracts to provide this service across 11 regions in England and Wales. Domiciliary oxygen is now provided by a single contractor in each home oxygen service region and all modalities are available, including liquid oxygen. Air Products is the provider to most of the regions in England and Wales.
Once a decision has been made for a child to be discharged on supplemental oxygen, a home oxygen consent form (HOCF) is signed by the parents (box 1, step 1). A home oxygen order form (HOOF) is completed (in large trusts this is done by a designated healthcare professional who may be a doctor or clinical nurse specialist) (box 1, step 2; note than some areas it is still not clear who the clinical lead is—they may be an employee of the PCT or a lead clinician (doctor or nurse) in a trust). The supplier confirms that they have received the fax (box 1, step 3) and are dealing with the order. The oxygen company (box 2, step 4) then contacts the family directly to installs the oxygen equipment in the child's home.
Parents (or child if >16 years) sign the consent form allowing the child's information (name/date of birth/address/diagnosis to be shared with the oxygen supplier, PCT and home care team
The respiratory/medical team completes the home oxygen order form (HOOF) and faxes it to the oxygen supplier. A copy will also be sent to the PCT, child's general practitioner and clinical lead for oxygen
The oxygen supplier will send a confirmation fax to the clinical contact. The confirmation fax will be sent to the person whose name and contact details appear in box 3 on the HOOF
The oxygen supplier will contact the family directly and arrange installation of the oxygen equipment in the child's home. The oxygen company decides on the most appropriate oxygen delivery system for the patient
Depending on the details given on the HOOF, the oxygen supplier will install the oxygen within three working days, the next day if the patient is being discharged from hospital or within four hours if required as an emergency. The HOCF/HOOF and other key documents and guidance can be downloaded from the primary care contracting website.3
Oxygen suppliers have a variety of oxygen equipment (fig 2),4,5 including oxygen concentrators, cylinders with integrated valves, conservers (not used for oxygen flows less than 1 l/min and not generally used for children), liquid oxygen and associated consumables (nasal cannulae/masks/portable cylinder carry bags etc). If a concentrator machine breaks down they provide an emergency back‐up cylinder and emergency call‐out service. They also reimburse electricity costs (associated with using an oxygen concentrator) and inform the fire service when the oxygen equipment has been installed. The oxygen company is required to provide information and appropriate training to the patient and/or carers in the use of the oxygen equipment provided in the patient's home or other setting (eg respite ward or school). This includes written instructions and training on the equipment itself, oxygen safety information and reordering supplies. Advice on travel and company contact details are also provided. At our hospital the clinical specialist team supplements this with information about the clinical condition of the patient and their oxygen requirement as part of their care plan. The team also reinforces the instructions on equipment use and safety.
If a family is planning a holiday in England or Wales, the patient's usual supplier will make arrangements to meet their oxygen requirements while on holiday. The child's family needs to obtain permission from the holiday address (hotel, caravan site, cottage, guesthouse, etc.) for the use, delivery and storage of oxygen.6 A second HOOF then needs to be completed and faxed to the oxygen supplier. The patient's holiday address is entered in box 2 of the form and it needs to be made clear in box 6 that this is a holiday order (with the holiday address/telephone number and the start and stop date of the holiday clearly written in box 13 on the form). If the family are going out of the oxygen company's contracted area, the company will forward the HOOF details to the appropriate company that will supply the oxygen equipment. This may mean that the child receives slightly different equipment from what they are used to.
If the family are holidaying in Scotland and a concentrator is required, a HOOF is sent to the oxygen supplier who forwards the order to Scottish Healthcare, who will provide the machine. If cylinders are being used the patient's GP has to fill out a prescription (FP10) for these. Cylinders are then provided by the pharmacy nearest to the holiday destination address in Scotland. If the family are holidaying in Northern Ireland and a concentrator is required, the patient or family have to contact Allied Oxycare (tel 02830 825222) which will provide the equipment. If cylinders are being used the process is the same as for Scotland.
The new oxygen prescribing system has presented an opportunity to collate information about oxygen use and practices around the country. The British Paediatric Respiratory Society (BPRS) has multicentre research ethics committee approval for the collection of demographic data on all children receiving home oxygen whose parents give consent. This potentially will yield information about any variations in practice in home oxygen prescribing, outcomes of specific disease subgroups, and will aid in designing prospective studies of children receiving home oxygen. The initial follow‐up study, which has had ethical approval, is determining medium‐term outcome in babies with chronic lung disease of prematurity.
The BPRS is keen that all children and their parents in England and Wales who are receiving home oxygen are given the opportunity to register their details on the database. (At the time of writing approximately 10% of HOOFS have been sent to the CHORD study.)
To obtain maximum recruitment for this study, healthcare professionals who ask parents to complete the HOCFs/HOOFs should also make them aware of the national database (and in the case of parents of babies with chronic neonatal lung disease, the follow‐up study) and ask them to sign the CHORD consent form if they are willing to take part. The consent form and the HOOF should then be copied and sent to: CHORD, c/o Dr Ian Balfour Lynn, Consultant in Paediatric Respiratory Medicine, Royal Brompton Hospital, Sydney Street, London SW3 6NP. If parents do not agree to their details being kept on the database a “CHORD refusal form” should be sent to the above address. Consent and refusal forms can be downloaded from the BPRS website.7 Further guidance and checklists for home oxygen prescribing can also be found on this site.
Although considerable work was put into communicating the details of the change to patients, pharmacists and practitioners,8 the new suppliers' freephone and fax lines received numerous calls on the first day of the new service. One reason for this was it seemed that, despite a directive not to send HOOFs to suppliers until patients requested a repeat prescription, many GPs/practitioners had done so. In addition many HOOFs sent to suppliers were incomplete. The result of this was that there was a substantial backlog of outstanding HOOFs with suppliers not being able to distinguish between those that required immediate attention and delivery of oxygen and those that had been submitted for administrative convenience. Suppliers spent time calling GP/practitioners to check missing details on HOOFs, resulting in a potential delay in delivery of oxygen to patients whose need was urgent.6
Problems relating to supplies of sufficient portable oxygen cylinders have also been a concern in some areas, with some families receiving only two cylinders at a time and needing to reorder frequently, meaning they remained housebound waiting for their delivery. The oxygen companies are continuing to work hard to resolve these problems and improve the quality of service.
In August 2006, Air Products organised a paediatric working group (attended by GH) to review the service level agreement of the contract6 and discuss specific issues concerning paediatric oxygen. At the first meeting many operational and administrative difficulties and problems with the telephone call centre and holiday provision were discussed and resolved. Recognising that training is an issue in all areas, Air Products committed to a meeting in each region to bring together all professionals from different areas to discuss the oxygen services. The specific training needs identified were as follows.
The working party shared concerns, highlighting the weaknesses and strengths of the new oxygen system, giving Air Products a clear direction on areas needed to build on their service and to look at improvements to enhance the service.
Changing to the new oxygen prescribing system in England and Wales has been an enormous undertaking, not without its problems, most of which have been or are being resolved. The new system should provide consistency in oxygen prescribing, delivery and utilisation throughout UK. Paediatricians should be aware of the practicalities of home oxygen prescribing and CHORD, which will yield useful information about outcomes and service needs for the future.
Competing interests: None.