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Patient centred care - myth or reality?

Open Door - May 2007 page 2

Much of the government rhetoric over the past seven years has been about changing the NHS to make it a patient centred organisation. Have we actually seen any changes? Are people with MS or organisations like the MS Trust more involved in decisions now? Do the decision makers in the NHS have a real understanding of the impact of MS?

NICE view on Tysabri

These questions are particularly pertinent at the moment for the MS Trust and the two individuals who agreed to represent us, and people with MS, at the National Institute of Health and Clinical Excellence (NICE) review of Tysabri (natalizumab) in March. Together we had prepared for the experience following the NICE rules, which state:

  • The patient expert role is taken seriously by the committee
  • If you make it clear to the chair that you have something to say he will make sure that you have an opportunity to speak
  • Don't wait to be asked a question - make it clear to the chair that you have something to say
  • The chair will take each comment in turn
  • Give a balanced view

The fact that we have now lodged an official complaint indicates that the meeting was very different from the guidelines and pre-briefing discussions. Our representatives were not given a fair chance to express their views, and the appraisal committee did not have a neurologist as a member.

Understanding the impact of MS

NICE and the other decision makers within the NHS still do not understand what multiple sclerosis is like as a diagnosis and what it means to the individual or their family. Even worse, there doesn't seem to be any attempt to improve that understanding. The UK still operates with an acute episode based health system. Long-term conditions are still badly managed, and any rhetoric at government level about person centred care has not reached the front line within the NHS.

Cost overrules clinical need

All too often cost is the deciding factor, and cost overrules the clinical need, especially at times of NHS financial crisis. MS drugs may sound costly, but drugs in other areas are also costly. Why is neurology losing out to other more common areas such as cancer? How can we demonstrate that investment early with drug therapy for people with MS will balance against potential savings later in the disease? How can we develop an appropriate economic model for assessing cost benefit?

The MS Trust will continue to work to improve this situation and to commit resources to provide evidence to demonstrate both the needs of people living with MS, and the deficiencies of NHS. The research we undertook with the Royal College of Physicians in 2006, which showed clearly the lack of progress on implementation of the NICE MS Management Guidelines, is one example, and we will be repeating this research in 2008. Recently we have also been involved in research to update the published literature on the cost of MS to the individual and to society (see separate article).

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