More NHS choice may mean more difficulty for some

Offering individual choice through NHS reforms is well but more provision needs to be put into advocates for people who aren't able to make decisions by themselves

I've been waiting for six weeks for test results which were originally due back within "five to seven working days". I'm lucky; the results won't be life changing and if I decided to, I'm capable of kicking up a fuss.

Eileen, an older woman with learning disabilities, wasn't nearly so fortunate. She had a tumour but, a year after initial diagnosis, no one among the many professionals who cared for her knew whether it was malignant, nor what the prognosis or treatment options were.

The government's Liberating the NHS reforms put a strong focus on the individual being at the heart of decisions, sharing power with healthcare professionals, and establishes GPs as the commissioners of most services. It ought to consign situations like Eileen's to the past.

Unfortunately these reforms fall short and may well make the situation worse for people who find it hard to get their views across.

Central to the reforms is a commendable focus on patient choice and control and providing information and advice to patients to help this happen. But for many people with learning disabilities, mental health needs and advanced dementia, this simply isn't enough. People need support and representation to act on information, to make choices and to challenge decisions. Often this comes from relatives and friends, but too many people have no one.

In Eileen's case, an independent advocate was required in order to trigger a professionals' meeting. This concluded that, since no one present knew Eileen's diagnosis, it might be a rather good idea to find out. Over the next few weeks, Eileen's advocate needed to keep pushing to get the situation clarified by a health care system that appeared to care little.

Transferring commissioning responsibility to GPs won't by itself address this. Surveys of GPs indicate that the majority lack expertise that will be especially important to commission services for people with learning disabilities, mental health needs and autism.

Meanwhile, people with learning disabilities frequently complain that it is relatives or paid carers who are spoken with by GPs rather than themselves.

Informing and supporting GP commissioning consortia by investing in skilled advocacy would help commissioners to tap into the expertise of people who use services when making decisions about the whole population's priorities. And do so better than traditional arrangements, which often just amplify the views of the usual suspects.

Even more importantly, good quality independent, individual advocacy needs to be made available and accessible. Specifying that GP consortia or local authorities commission adequate levels of independent advocacy support would help to ensure that the choices available to the articulate and well resourced are extended to the whole population.

Promenading individual 'choice' will be meaningless if people don't have the power to take decisions; including people who need support and, at times, representation. How the reforms affect people with learning disabilities, and other people whose voices are often ignored, will be a litmus test of the government's professed belief in fairness.

While any positive change will come too late for Eileen, who very sadly died some months later, the coalition now has the chance to build such support into the NHS reforms. Whether it takes this opportunity has yet to be seen.

Jonathan Senker is the chief executive of advocacy charityVoiceAbility

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