NICE Quality Standard for Lyme disease now published

The NICE Quality Standard for Lyme disease was published yesterday (10th July 2019).

The quality standard covers diagnosing and managing Lyme disease in people of all ages. It also includes raising public awareness about prevention.

It aims to work alongside the NICE Guideline for Lyme disease, helping to improve care of Lyme patients and increase understanding around the priority areas for quality improvement. It’s intended for use by commissioners, service providers, health and public health practitioners, as well as the general public.

Our former CEO, Veronica Hughes, was invited to be on the quality standard committee as a lay member, and helped to pass on the view and experiences of patients that had contacted Caudwell LymeCo, as part of the formation and consultation process.

The quality standard statements

The final four quality standard statements are based on identified areas for improvement when it comes to care of those with Lyme disease, and are as follows:

1. People presenting with erythema migrans are diagnosed and treated for Lyme disease based on clinical assessment, without laboratory testing.

2. People with suspected Lyme disease without erythema migrans who have a negative enzyme-linked immunosorbent assay (ELISA) test carried out within 4 weeks of their symptoms starting have the test repeated 4 to 6 weeks later if Lyme disease is still suspected.

3. People with Lyme disease have initial antibiotic treatment, with the antibiotic, dosage and duration determined by their symptoms.

4. Local authorities organise health promotion activities with organisations in their area to raise public awareness about how to prevent Lyme disease.

Click on each of the statements for further information.

How will these statements be used to improve care?

The quality standard is there to help healthcare professionals:

Click on the links above for more information on how each of these actions will help improve care.

With regards to how these will work to improve care of those with Lyme disease, these standards are listed as those which all organisations and health professionals should try to achieve, and can give further patients impetus when speaking to their doctors about how their diagnosis and care should be approached.

So, where the Guideline lists recommendations about WHAT doctors and health professionals should do, the Quality Standard is about HOW, and the level to which they should be carrying out these recommendations.

Who is the quality standard supported by?

This quality standard is endorsed by NHS England and Department of Health and Social Care as required by the Health and Social Care Act (2012).

A number of organisations, including Caudwell LymeCo, recognise the benefit of this quality standard in improving care. They work with us to promote it to commissioners and service providers:

Although we acknowledge that there is still further work to be done to educate health professionals in recognising and treating Lyme disease, and that the Guideline and quality standard is arguably most applicable to acute cases of Lyme disease; we hope these quality statements go some way towards improving diagnosis rates in early stages, preventing more people from becoming chronically ill.

For full information on the quality standard, visit the NICE website.

4 thoughts on “NICE Quality Standard for Lyme disease now published

  1. The work you are doing is amazing and the whole Lyme community already owes you so much in improving GP/NHS awareness of Lyme and improving patient experience in inital stages. With this guideline now published I was wondering if at some stage you will be able to turn your efforts towards improving the experience for chronic Lyme sufferers who by and large are still left to fend for themselves by the NHS. Like most long term sufferers I work hard to be my best self but it is made so much harder by a medical community that takes a ‘guilty until proven innocent’ approach before taking chronic Lyme sufferers seriously.

    1. Hi Juliet. Thank you for your comment. We’re sorry to hear that you are a long term sufferer of Lyme. The charity’s core mission is to fund research into Lyme disease, based on the recommendations made within the NICE Guideline. It is our hope that the findings from this research will be of great benefit to long term, chronic sufferers, and will uncover answers as to accurate testing for all stages and presentations of the disease, along with a treatment that works for every patient. We’re fundraising for research as we speak and are working on being able to start a project as soon as possible.

  2. Drs Nurses consultants still ignoring my lyme and co with a great deal of illnesses.
    Been telling them over 30 years of illnesses started in 1973 I am from Bawtry nr Doncaster..
    Mind is going cant keep up to chase this treatment.
    Cant work too illsavings gone and cognitive decline and other things getting worse and faster.
    Ways ignored for ?
    MRIs been asking for lots if help..getting nothing.
    Now pressured by ESA and more to get a job and improve my heLth.
    An imposdible situation.
    No one to help..GPs have been terrible and ridicule us..even laughinv
    Reinfected dozens if not 100s of times
    .in pre ious decades.
    This is a constant torture like being in a sadistic prison

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