'Devolution in the NHS means local priorities increasingly drive allocation of resources. While this development has many benefits, it can unfairly disadvantage patients with specialised conditions, who will inevitability be smaller in number and therefore have less of a voice locally'.

For readers who believe in the NHS, the hostility that often seems to exist between specialised and local services is depressing. Local people require specialised services too.

The virtues of the NHS surely include the availability of high-quality treatment across the country, regardless of the severity of the problem we are facing. The knowledge that we can turn to the NHS with confidence in times of both minor and serious need goes a long way to explaining the passionate support it still commands.

The suggestion that local people and their needs are somehow in conflict with specialised services should be anathema..

And yet the debate is easily cast in terms of costly acute medicine sucking up resources to the detriment of local services; of money being needlessly spent on new, hi-tech treatments when older, tried and trusted remedies would do; of services, in a nutshell, favouring the few over the many.

There will always be tensions between services in a cash-limited environment. It makes sense to be vigilant in using the most appropriate and cost-effective treatments. The National Institute for Clinical Excellence.is set to play an increasingly important role in ensuring that this happens. At the same time, attitudes predicated entirely on cost can have perverse results, for example denying patients expensive treatments that are nevertheless cost-effective and threatening to stifle.the UK's capacity for innovation.

Equal opportunities

The Specialised Healthcare Alliance is concerned that the availability of specialised services is subject to unacceptable variation across the country. In many cases, there are no.national guidelines or targets for specialised services. However, even when these do exist, for example in the form of NICE guidance, there is considerable variation in implementation among primary care trusts.

We recognise that the NHS has limited funds.and that difficult decisions regarding priorities need to be made. However, the standard and availability of specialised services is fundamental to a properly functioning, integrated NHS and is a key criterion by which the success of reforms should be judged. Priorities should therefore be established by commissioners and clinical staff with patient involvement.

Devolution within the NHS means local priorities increasingly drive resource allocation. While this development has many benefits, it can unfairly disadvantage patients with rare conditions, who will inevitability be smaller in number and therefore have less of a voice locally.

Funding for fair play

The new commissioning arrangements for specialised services announced in the commissioning framework should provide a degree of protection for patients with such conditions, as commissioning will take place across a number of PCTs. However, if these arrangements.are to be successful, it is essential that the new specialised commissioning groups are allocated sufficient resources by PCTs to do their work.effectively.

In addition to the ethical case for giving patients with specialised medical conditions equal access to drugs and services, ensuring patients receive access to treatment for rarer conditions can have wider benefits..

We are concerned that in the current financial climate, with a tendency to silo budgeting, decisions about whether to fund treatment are often made without considering the additional costs elsewhere, such as the cost of palliative care, social services and lost employment productivity that arise from refusing to fund treatment.

Moreover, funding specialised treatments is essential if the NHS is to meet future challenges. Such treatments are, by their nature, more expensive.and often have less clinical trial data to prove their case..This should not be used as a reason for NICE or commissioners to refuse to fund.them..The government should work with the manufacturers to collect data.on cost effectiveness and efficacy while funding is made available by the NHS.

Wider benefits

Specialised research and treatments often benefit people with more mainstream conditions. Many patients with rare conditions recognise this and willingly participate in clinical trials or contribute to national registers. The role of specialised services in realising the early benefits of innovation is particularly relevant in the light of Sir David Cooksey's recent report on medical research.

While we recognise the challenges posed by giving people with specialised conditions equal access to treatment, exercises such as.NICE's citizens' council in 2005 suggest that there is public support for the government ensuring that robust funding systems are in place to deliver stable provision for these vulnerable patients.

The interconnectedness of the NHS is one of its greatest strengths and, historically, has facilitated the delivery of universal healthcare at a much lower cost than comparable systems in other parts of the world. The new commissioning framework provides a valuable opportunity to adopt a holistic approach to services from practice through to tertiary level. As part of that process, the Specialised Healthcare Alliance seeks the widest possible support for:

  • the standard and availability of specialised services being accepted as fundamental to a properly functioning NHS;
  • the new commissioning arrangements for specialised services being implemented at the earliest opportunity with sufficient pooled budgets attached;
  • services and treatments not covered by payment by results.invariably being subject to pooled budgets;
  • the DoH encouraging more consistency of provision of specialised treatments across the country by developing the national definition set and including standards of care where appropriate;
  • more transparent decision-making where treatment is denied, including a clear appeals process for patients with support provided;
  • recognition of the role of specialised services in providing a pathway for innovation as part of the government's strategy for medical research.

John Murray is director of the Specialised Healthcare Alliance.