News item

Archive of: January, 2011

  • Leaving no one behind

    As a culmination of its work on quality and productivity, the Alliance has published a report on delivering high quality, efficient care for people with rare and complex conditions. The report charts recent developments in policy towards specialised services and sets out a range of case studies before going on to make a series of recommendations. These include the:

    • continuing value of the principles set out in the Carter Report of 2006 as the basis for a coherent strategy towards rare conditions across the UK;
    • need for the doctor/patient relationship to evolve in a way which speeds diagnosis through better referral pathways and the ability of many patients to help inform diagnosis, predicated on well signposted sources of reliable information;
    • role of patient organisations in protecting the vulnerable and driving up standards, sometimes through the provision of more innovative services;
    • need to ensure integrated pathways, especially through the development of multidisciplinary networks;
    • contribution of NICE quality standards or their equivalent to high quality specialised care and outcomes;
    • desirability of outcome measures which capture both clinical and patient perspectives with a view to maximising effectiveness and efficiency;
    • central importance of patient registries, with more sharply focused datasets helping to keep down costs.