Deborah Orr: What use are patient rights when they're just ignored?

It’s difficult to imagine how a man could lie there without anyone noticing he was unfed

Wednesday 25 March 2009 01:00

Jack Straw, the Justice Secretary, reckons that his new green paper, which sets out a "bill of rights and responsibilities", may prove to be as significant as Magna Carta or the 1689 Bill of Rights. He concedes, however, that this marvellous document will have to be delayed until after the next general election, because of the demands of the financial crisis. Now is not the time to "enshrine entitlements", for that may prove to be expensive.

And what's the hurry anyway? Straw, after all, cannot fail to have realised that plenty of entitlements are enshrined already, without necessarily having a great deal of impact on whether people actually receive them or not. A report from the parliamentary and health service ombudsman, also published this week, makes that sad state of affairs all too plain.

The report, Six Lives, investigated claims made in March 2007 by the learning disabilities charity, Mencap, in a paper entitled Death By Indifference. It highlighted the experience of five men and one woman who, it was alleged, had all died needlessly while under the treatment of a variety of NHS and local government bodies.

The most crudely shocking of these narratives was the story of Martin Ryan, a 43-year-old man with severe learning difficulties, Down's syndrome and epilepsy. He lived in a residential care home and was admitted to a general ward under the Kingston Hospital Trust, after suffering a stroke in November 2005.

Ryan was placed under the care of a multi-disciplinary team led by a consultant and including doctors, nurses, physiotherapists and speech and language therapists. Carers from his residential home were with him for most of the time he was in hospital. He was also visited by specialist community nurses.

It was understood from the start that the stroke had impeded Ryan's ability to swallow, and that alternative feeding arrangements would have to be made. Yet by the time those arrangements had been decided on, Ryan had been in hospital for 18 days, and was too weak and ill to undergo a procedure to insert a feeding tube. No one had tried to feed him during that period, and when he died he had received no nutrition for all of 26 days he was in the hospital. His mother, Vera Ryan, claimed that he had "starved to death" when she thought he had been "in good hands", although on his death certificate the primary factors were recorded as pneumonia and a stroke. It is difficult to imagine how a man could lie day after day on a busy ward, with no one noticing that he was not being fed. But it was actually worse than that. The community team and the speech and language therapists were "very concerned" but "could not make themselves heard". Neither the consultant nor the ward sister provided "clinical leadership" and "there were no multi-disciplinary team meetings" in which worries or concerns could be aired.

The ombudsman, Ann Abraham, has decided that she cannot be certain that Ryan would have survived if he had been fed. However, she did conclude that: "Trust staff did not attempt to make any reasonable adjustments, as they should have done, to the way in which they organised and delivered care and treatment to meet Mr Ryan's complex needs." The trust failed to have "due regard to his status as a person" for disability related reasons.

The conclusions are similar in three of the five other cases, with the ombudsman suggesting that "the recurrent nature of the complaints across different agencies leads us to the view that understanding of the issues is at best patchy and at worst an indictment of our society".

However, in theory at least, "our society" is very good now at "enshrining entitlement". In their joint recommendations, Ann Abraham, and the local government ombudsman, Jerry White, conclude: "We have not found any shortage of policy and good practice guidance on the planning and provision of health and social care services for people with learning disabilities; or on observing the core human rights principles of fairness, respect, equality, dignity and autonomy for all." Their recommendation is that the relevant bodies should look again at whether they are doing what is required of them. The frustrating thing is that, in the case of people with severe learning disabilities, there is none of the usual ideological disagreement over whether they need support, or whether a government in search of a "client state" is cynically disempowering them.

In reference to that endless argument, Straw has told MPs that "more should be done to bring out the responsibilities which accompany rights". Yet when care of the most vulnerable is under discussion, that particular argument runs out of road. Straw offers as an example of the responsibilities that society shirks, his belief that NHS workers deserve "more respect". All those involved in Ryan's case, on the contrary, were the ones who had the problem with responsibility. It is grimly amusing that Straw blames the stalling of his own fine rhetoric about fine rhetoric, on the financial crisis and the next election. If the present global recession can be said to have made any positive contribution to the human condition, it is that it at least provides clarity on the relationship between economic structures, social stability and political power. Labour has spent more than decade in power insisting that an open and flexible economy need not be one that is socially unstable. To that end it has revealed itself as utterly contradictory. The Government has spent much time, energy and money trying to make society behave as it wants it to, when all it has really done is show how marginal the efforts of a controlling government are in the face of an unbridled economy.

In a lecture to the Centre for Policy Studies the historian Niall Ferguson suggested that right-wing parties are "on the horns of a trilemma". He reckons that Conservatives have to make two choices from three options: an open economy, a stable society, and political power. His assessment is a perfect dissection of why the Daily Mail has a problem, as it supports small government and globalisation, rails against "the nanny state", then huffs about declining moral standards, immigration, drugs, swearing on the telly and so on. Open economies are inherently unstable, not least because those in a position of some comfort and self-reliance – whether they see themselves as on the left or the right – resent so much having their own freedoms curtailed for what somebody else considers as "the common good".

Straw wants his bill of rights to have cross-party agreement, and no politician would argue it is not the job of a government to ensure men like Ryan get the care they are entitled to. Yet he did not, and at a time when the Government exulted in the belief that it had more or less managed to deliver all three of Ferguson's options. But they are not options. They are three impossible contradictions, bound together tightly, and horribly out of control. There is no right or left in this mess. All that can be hoped for is damage limitation.

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