News Archive

Archive of: 2011


  • NHS Commissioning Board needs to lead for others to follow

    In a piece for the Health Service Journal on 8th December, John Murray argues that the potential of the NHS Commissioning Board to bring about far-reaching improvements in specialised care depends on a clear vision, strongly communicated from the top.

    The article concludes: “Historically, specialised commissioning has been an afterthought in policy. The extent to which the board lays that accusation to rest will be a good predictor of the overall success of the reforms. The silence of the 2012-13 operating framework inevitably gives cause for concern.”

  • Registries Guide

    One of the recommendations in the Alliance’s report Leaving no one behind (January 2011) concerned the importance of registries in supporting good care and clinical research for people with rare conditions. The attached guide seeks to support that recommendation by helping patient organisations answer two main questions:

    • Would it be useful and practicable for us to set up a registry?
    • What are the key issues that we must take into account when setting up a registry?
  • NHS Commissioning Board needs to lead by example

    In a letter to the Health Service Journal, the Alliance’s Chair, Baroness Pitkeathley, has expressed concern about the absence of detail about specialised commissioning in Sir David Nicholson’s recently published report on developing the NHS Commissioning Board. The letter suggests that the Board will need to set the highest standards in commissioning services for which it has direct responsibility if it is to exercise effective leadership in the NHS more widely. This should start with a clear vision for specialised commissioning enunciated at the top.

  • Rarer Cancer Report

    The Alliance held a multidisciplinary workshop on rarer cancers on 31st March in partnership with the National Cancer Action Team. A copy of the resulting report can be accessed below. Reports on nine specialised services can be accessed from the reports section of the website.

  • An introduction to specialised commissioning

    The Alliance’s secretariat has produced a short introduction to specialised commissioning and its recent history up to and including the proposals in the current Health and Social Care Bill.

  • European awareness of rare diseases

    An EU-wide survey published on Rare Disease Day (28th February) shows that a relatively large number of Europeans (63 per cent) know what rare diseases are, but that detailed knowledge and awareness are lower (40 per cent had never heard of someone affected by a rare disease). The European public expresses strong support for policy initiatives linked to rare diseases at both national and European level. On average, over 90 per cent of Europeans agree that resources should be allocated to support those with rare diseases, improve and coordinate research, ensure access to treatment and raise awareness of rare diseases. Opinion becomes more divided when other health issues are taken into account but remains supportive.

    UK levels of awareness and support tend to be similar or somewhat lower than the EU average. 90 per cent of UK respondent, however, had heard of cystic fibrosis, 82 per cent Huntington’s disease and 81 per cent haemophilia. These results are significantly higher than the EU averages.

    Click here to read full report

  • 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.