Results 1 to 4 of 4

Thread: Response from the goverment RE-UK petition

  1. #1
    Join Date
    Dec 2008
    Chelmsford, Essex, England
    Blog Entries
    Thanked 14 Times in 9 Posts

    Default Response from the goverment RE-UK petition

    The Government hopes that the Lupus Awareness month has built on the work of Lupus UK and the All Party Parliamentary Group for Lupus in raising public awareness of this distressing condition. The Government recognises their contribution in supporting people with lupus.

    Diagnosis of this condition can be difficult because many lupus symptoms mimic other illnesses such as rheumatoid arthritis. Although sophisticated tests and a greater understanding of lupus have made diagnosis easier and more accurate, there is no ‘quick fix’ for lupus. Once diagnosed, lupus is a well-understood condition and a range of treatments is available from the NHS. Although there is no cure for lupus, the condition can, for the majority of patients, be controlled with a variety of therapies. Treatments aim to suppress the overactive immune system and diminish inflammation, and are often initially aggressive. In later treatment, milder drugs are used with the aim of reducing and ultimately discontinuing drug therapy.

    The Medical Research Council is one of the main agencies through which the Government supports medical and clinical research. The MRC is an independent body which receives its grant-in-aid from the Department for Business, Innovation and Skills. The MRC is currently funding a research fellowship to Dr R Pepper at Imperial College entitled Renal mesangial cell-macrophage interactions and the outcome of glomerulonephritis. A summary of the fellowship is provided below:

    Auto-immune diseases are those caused by the body’s own immune system. One such disease is systemic lupus erythematosus (SLE), associated with antibodies to DNA, and another is systemic vasculitis associated with antibodies to white blood cells called anti-neutrophil cytoplasm antibodies. Both diseases cause significant health problems such as kidney failure and lung disease. However, why certain individuals develop kidney problems while others avoid it remains unknown. The researchers have shown that the tendency to develop kidney disease is related to the expression of certain proteins (receptors) on circulating white blood cells and cells found within the kidney itself. Dr Pepper aims to test the role of these particular receptor proteins in kidney biopsies taken from patients with SLE and systemic vasculitis as well as in living cells from these patients. Understanding the key mechanisms that determine whether cells invading the kidney cause damage or repair, should allow such proteins to be developed as new therapeutic targets.

    In addition, the MRC also funds a broader portfolio of research on auto-immune disorders and on the basic mechanisms in immunology/inflammation which, while not directly relevant, may benefit lupus in the future.

    The MRC does not normally allocate funds to particular topics. Rather, research proposals in all areas compete for the funding available. When appropriate, high quality research in particularly areas of strategic importance may be given priority in competition for funds, but research excellence and importance to health continues to be the primary considerations in funding decisions. The MRC always welcomes high quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding.

    From 1 January this year, patients can expect a maximum wait of 18 weeks from the time they are referred to a consultant to starting their treatment unless they choose to wait longer, or it is clinically appropriate that they wait longer. This commitment includes all appointments and diagnostic tests that lead up to treatment. 18 weeks applies to all consultant-led services including treatment for musculoskeletal conditions, including lupus where this is consultant-led. Nationally, the NHS has met the minimum operational standards for 18 weeks at an aggregate level in each month since August 2008.

    Musculoskeletal conditions, such as lupus, are the largest subgroup of long-term conditions, affecting millions of people and their families. The musculoskeletal services framework (MSF) published in July 2006 proposes new models of good practice for delivering care closer to home for the estimated 10 million people in the UK with bone and joint conditions. It promotes:

    redesign of services, and full exploitation of skills and new roles of all healthcare professionals; and
    better outcomes for people with musculoskeletal conditions through a more actively managed patient pathway, with explicit sharing of information and responsibility, outcomes should be agreed between all stakeholders in all sectors, including patients, the NHS, local authorities and voluntary/community organisations.
    In addition, to improve the situation for patients accessing musculoskeletal services, the Department:

    has been working closely with the British Orthopaedic Association, the British Society of Rheumatology and Arthritis and Musculoskeletal Alliance through a monthly coordinating group meeting to improve services for patients;
    has produced examples of good and innovative practice in musculoskeletal services on the 18 week website to help organisations learn from the success of others; and
    has introduced a national orthopaedic coaching programme that is working with 80 NHS organisations across all 10 strategic health authorities to spread good practice and learning. The coaching programme brings together key stakeholders from across local health communities to share good practice, develop action plans to deliver improved services and identify and spread models and theories on sustainable planning.
    The Government is also aware of concerns that traditional incandescent light bulbs are being phased out in favour of low energy lighting. A number of charities and support groups have said that using low energy compact fluorescent lamps available currently could aggravate certain pre-existing light sensitive, skin and neurological conditions, including some people living with lupus. The Government, along with the European Commission, is working to ensure that these health concerns are taken into account in options for energy saving measures concerning lighting.

    In addition investigations are being conducted into the nature of health effects and the potential numbers of people who could be affected. Constructive discussions are continuing with representatives of support groups, the lighting industry, doctors and scientists regarding availability of suitable light bulbs and new technologies for low energy lamps.

    Further Information
    · Sign up to our newsletter service

    Tags: Medical Research, Systemic Lupus Erythematosus
    **The next £ or $ raised WILL be the cure for LUPUS**

    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

    ..♪♫•*¨*•.¸¸❤¸¸.•*¨*•☆.。.•*✿♪♫•*¨*•.¸¸❤¸¸.•*¨*•☆.。 .•*✿

  2. #2
    Join Date
    Dec 2008
    Blog Entries
    Thanked 81 Times in 70 Posts


    hi ISDM,

    it is so encouraging to see all of the attention that lupus is receiving in the medical community as well as the political arena. Thanks for sharing with us.

    share a smile today

  3. #3
    Join Date
    Feb 2009
    essex, england
    Blog Entries
    Thanked 16 Times in 16 Posts


    hi ya babe recieved same email but i don't know if it was myh bloody brain or what but didn't understand much of it and what i did understand thought it was just a fob off

    example 'Once diagnosed, lupus is a well-understood condition and a range of treatments is available from the NHS. ' i personal have not got much sense out of doctors and have pestered to get anything done! but if i have got what it says wrong please some one tell me! and if you can put the rest in laymens terms i would grately appriated!!! XXXXX from an ever so confused Heidi ( i know this is not hard! lol)

  4. #4
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    WOW!! So, all of these proposals/initiatives are a result of petition? I see that they are proposing to go at this from several directions - broader research, adhering to an 18 week waiting period (what was the waiting period before this) that includes all appointments and diagnostic tests that lead up to treatment, and from the nephritis and musculoskelatal perspectives!
    I hope that all of these recommendations and proposals lead to more effective research and treatment and that they do not fall short on any of them!!

    Good News So Far!

    Peace and Blessings
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts