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Rationing in the UK National Health Service comes in many forms: there is choosing not to see something as a relative health problem in the first place; there are simple straight decisions not to fund treatments, investigations, preventive measures, etc because of lack of resources at that particular time; there is rationing by reasonable methods of priority setting at national and district level. There are also more insidious methods of delaying the implementation of treatments of proved efficacy that, on balance of evidence, should be used. Such delays are done by reassessing, demanding more information, claiming that it is someone else’s responsibility, etc. There is also rationing by waiting lists and rationing by illogical resource allocation on the grounds of political expediency.
As a commissioner, while I am aware of these facts I am also aware that the NHS, compared with other health delivery systems used around the world, supplies an excellent “value for money” service that is “free at the time of delivery”. It is just that we still, within the NHS and outside (particularly in political spheres) hate owning up to the fact in public that rationing has always been and will always be a necessity.
Where has there been rationing in child health services?
This will vary from one district to another. A quick look over the past four or five years of my own work in commissioning would include: rationing of all the treatment services for handicapped children; rationing the availability of medical services to severely disabled children placed “out of county”; lack of funding for triple testing pregnant mothers for Down’s syndrome, which most studies show would significantly decrease the number of children being born with this condition; inadequate number of school nurses for ensuring correct giving of medications in schools and for supporting the needs of special needs children in schools; lack of funding for the introduction of a neonatal hearing screening programme; inadequate resources to support a community screening programme for growth problems in children; rationing of resources to adequately meet the mental health needs of children and young people; inadequate resources for funding community children’s nursing; inadequate funding to develop an appropriate children’s accident and emergency department area; rationing of money needed to rebuild proper paediatric inpatient facilities at a local district general hospital.
All these decisions were made with hugely varying degrees of consciousness, logic, and determination on the part of all those involved.
Is rationing worse within some areas of services for children than others?
Although, as suggested above, many different areas of paediatric and child health services have not been developed at a rate commenserate with need, there are some areas of delivery of child health services where rationing appears worse than others. Generally, neonatology and paediatric intensive care have a high political sensitivity for losing votes if something goes wrong, and tend therefore to achieve priority funding. From personal experience, it seems that money is far more easily obtained when it is being requested for acute hospital paediatric services than when the funds are being asked to support the long term care of severely handicapped children at home or in respite care. It may cost around £20 000 on a one off basis to keep a very prematurely baby alive in a special care baby unit, but it will cost £160 000 each year to meet a severely handicapped child’s needs 52 weeks a year in respite care. Again these priority differences in the funding of children’s services may vary greatly around the country, but I would doubt whether there is a single health district in England where commissioners can truly say there is not some area of rationing of their health services for children.
Are there areas of services to children that I would like to see rationed at the expense of others, given the overall limit on resources?
Yes, I believe that as a just and humane society we should not provide further funding for neonatal and other intensive care for children unless we can absolutely guarantee funding for fully supporting the long term needs of severely handicapped children and their families. Personally, until that happens, there are children and families where it would be far more humane to allow a very severely handicapped child to die of natural causes, rather than to keep that child alive at any cost. Further, I think that we need to re-examine the overall funding mix between “new treatment hi-tech” to meet the needs of a few children and the straightforward health care of all children. Perhaps, just perhaps, the national institute of clinical excellence (NICE) may move us towards this goal.
Can we make more logical choices about rationing than we do at the moment?
Yes, in many different ways, but by far the most important is by making priority setting at national and local level more logical, more transparent, with greater public involvement, and based on good information rather than on emotive issues. Too many of the national decisions about rationing and priority setting are still made on the grounds of being “vote getting” rather than based on need or relative effectiveness. Although this is inevitable it needs to be clearly stated and understood.
At a local district level, primary care groups, primary care trusts, and health authorities will, one way or another, increasingly need to involve the public in their decision making on rationing and priority setting. This will have to occur, whether the services concerned are for health services to children, or for other age and patient groups. One way of doing this has been developed by the Oxfordshire Health Authority who have set up and manage a “priorities forum”. Representation on this forum is broad, multidisciplinary and includes academics in the field of medicine and ethics, acute hospital medical staff, community and primary care medical staff, public health personnel, and community health council members. The ethical framework of the forum is based around three key issues: effectiveness, equity, and patient choice. To achieve this the health authority provides “envelopes” of money for each clinical area and leaves most of the rationing and priority setting decisions about distribution of these funds to the medical staff within the individual clinical area. However, where the medical staff wish to develop a new service that requires considerably more funding, the priorities forum’s first response is to question the doctors concerned as to why the new treatment cannot be funded from within this fixed envelope, and why, if the new treatment is more effective than the old, it cannot be funded by dropping other less effective treatments within the same area of work. If this cannot be achieved then consideration is given by the priorities forum as to whether the development is so important that resources should be moved between envelopes to achieve the needed funding given that overall the health authority is working within absolute limits in the overall funding allocated to it by government.
What are the consequences of such rationing and priority setting for paediatricians and others involved in child health care?
Decision making about rationing and priorities need a holistic approach, which takes into account all the health related needs of children and which includes the child’s social and educational needs as well as their direct health needs; therefore, decisions should be made in conjunction with colleagues from these disciplines. Within medicine itself the ever increasing number of new technologies being developed in the area of paediatrics means there is a concomitant inevitability that rationing of treatments will increase and that it will have to be done in an increasingly open and logical way. There are therefore two choices for those involved in the health care of children and young people when it comes to the question of rationing and priority setting. They can either stand aside and say “this is not our business, let someone else decide”, which appears at the moment to be the majority decision (though the tendency remains to complain endlessly when the decision is made by others), or they can take part in these decisions, and have a voice in the choice, which increases the chances of the inevitable final decisions being more logical and in the best interest of children. The choice is ours.