The planned closure of London Lighthouse, Europe's largest centre for people with HIV and AIDS, is a huge loss.
1Two interrelated factors can explain it.
First, the success of triple-combination drug treatments has reduced the need for residential care (including terminal care) for people with AIDS. And second, the pressure on Lighthouse's main purchaser, Kensington, Chelsea and Westminster health authority, to fund these treatments has led it to seek reductions in other parts of its budget.
In this case, by purchasing residential care for people with AIDS from cheaper suppliers, it will release the necessary money. Who can blame it? It will still supply the necessary drugs and offer residential and other care where needed.
Everyone will get some service - albeit not the best available.
One can feel some sympathy for HAs which have been left to themselves to meet needs disproportionately manifest within their catchment area. In the past they were helped by specific grants, and their scope for budgetary choice was constrained by ring-fenced financial allocations. Now they are free to make hard choices. Several important points arise from this particular choice, with a wider resonance for purchasing, for the voluntary sector, for AIDS services and for palliative care.
There is a disparity between purchasing and medical timetables. Decisions have to be made before evidence has been assembled. What will happen over the long term to people on triple-combination therapy?
Understandable decisions about short term financial allocations may mean one loses the accumulated experience of an established unit - a unit that may well be needed in the future. How can strategic planning and local purchasing based on three-year service agreements be reconciled?
A decision about using residential services other than Lighthouse is based on cost, not on quality or outcome. If simple cost-accounting replaces cost-effectiveness in purchasing, we will see a more general decline in standards. For example, will GP purchasers seek to buy services from palliative care 'suites' being set up within nursing homes, or continue to purchase from hospices which offer a wider-ranging service? A shortcoming of Lighthouse is its failure to get to grips with research into outcome and cost. But so have many other hospices and palliative care units.
The impact of local purchasing decisions leading to the closure of a unit of international repute must sound warning bells for establishments that hold similar status in their own fields. How can the worth of these units be included in essentially local purchasing decisions? For example, how do you calculate the role they have in staff training? The Lighthouse diaspora spreads throughout the world of HIV/AIDS services.
The problems of organisations dependent both on HA and charity funding are also highlighted. A bigger allocation from the Diana Memorial Fund would have sustained Lighthouse while cost-efficiencies were achieved. It would have allowed it to remain viable as more evidence on the long-term impact of triple-combination therapy was assembled.
Some charities got£1m from the fund; Lighthouse is likely to have£65,000. People have been very generous and fundraising often high-profile. But the overall contribution of charitable giving has amounted to about 10 per cent of annual income.
2This can be contrasted with the independent hospices, where on average 62 per cent of income is from charitable sources.
In many ways the level of staffing and material comfort at Lighthouse was like that in these well-supported hospices with their safety nets of legacies and their established infrastructures for community donation. Over the past few years Lighthouse has made extensive efforts to cut costs, but this is a slow process if one is seeking to maintain standards and support staff as well.
There is a risk that non-drug care will go downmarket, and that those who do need residential care will have to make do. The closure of Lighthouse is not the first loss in the AIDS field: the sensitive and imaginative work for people with HIV-related brain impairment offered at Patrick House in London did not stop its recent closure. The reasons given were the same as those for Lighthouse - cost. But the overall estimate for the incidence of HIV-related brain impairment is increasing. Inner London health commissioners estimated that likely 1998 incidence for the Thames regions could be 275 individuals, all likely to require long-term care and support.
4Lighthouses don't just warn ships off the rocks, they give them points to steer by and reassurance to sailors. They are manifestations of a caring society, concerned for others, even if they do not know them. As such, they are cultural artefacts, a role marked by the issue of a series of stamps depicting lighthouses by the Post Office last month. It is both sad and ironic that, as we applaud some success in treating HIV/AIDS, we have to lose units whose contributions have guided many of those who live with, or who care for or about, people with HIV/AIDS.
REFERENCES
1 Healy P. In search of a lighthouse keeper. Health Service J 1998; 108(5596): 16.
2 Small N, Ferguson C. Palliative care and HIV. Agenda 1997; 10: 6-7.
3 Clark D, Small N, Malson H. Hospices to fortune. Health Service J 1995; 105(5480): 30-1.
4 Mildmay Mission Hospital. Highlights, newsletter of Mildmay Mission Hospital, London, 1997.
Neil Small is senior research fellow, Trent Palliative Care Centre.
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