What is the Quality Standard for Lyme disease?

New objectives on Lyme care

NICE has launched a new project to develop a quality standard that will define areas for quality improvement for Lyme disease care on the NHS, and Caudwell LymeCo’s Chief Executive Veronica Hughes was asked to join the committee as a specialist on Lyme disease. The committee, whose members included doctors, patients and experts on quality standards, first met on 6th December in Manchester. The quality standard is expected to be published in July 2019.

A “quality standard” contans brief action-focused statements about a specific patient experience during their evaluation, diagnosis or treatment. For any given condition, the aim is to produce about five quality statements. Their purpose is to describe how doctors, nurses and other Health Service staff should provide high quality care for patients in specific situations. Those familiar with the business world will recognise the acronym SMART goals, which also applies fairly well to quality standards. The goals should be Specific, Measurable, Achievable, Relevant and Trackable.

Progress since the NICE Guideline came out

Since the NICE guideline for Lyme disease was published back in April this year, we at Caudwell LymeCo have noticed some progressive improvements in the way doctors help patients. We advise patients every day, explaining the guideline to them and sometimes speaking to their doctors to help make sure the guideline is followed as it should be.

“Veronica made me feel confident in what I was doing to get my son the right treatment, and I’m so glad I found the charity and they made the GP sit up and listen.”

Liz, Lyme disease patient

On the upside, far more of the patients we speak to are prescribed a full 21 days of doxycycline, and more of those who still feel ill at the end of this are prescribed a second course of treatment as well. We also notice more people are diagnosed with Lyme disease on the basis of the characteristic rash, or have their blood tested for suspected Lyme: it is more often becoming something that doctors consider as they sift through the possible diagnoses of their patients.

What are the problems?

On the downside, we are hearing of far too many people who are not prescribed the right dose of antibiotics, or the right treatment length. We sometimes hear from patients who have been prescribed an antibiotic that does not even feature in the guideline. We intervene to correct this error every week.

Some patients are diagnosed with a Lyme rash, prescribed antibiotics and then given a blood test as well “to check” the diagnosis. Unfortunately the blood test is less reliable for diagnostic purposes than the rash, and usually negative in the early weeks of Lyme disease, because antibodies – which is what the test looks for – are slow to develop. Doctors changing their minds about a Lyme disease diagnosis on the basis of a misused blood test goes entirely against the guideline but unfortunately still happens, probably in most cases because the doctors who have not seen many Lyme disease rashes are not confident about recognising them. Again, we make great efforts to explain and we have sometimes successfully intervened, but far more progress is needed.

The single biggest area needing improvement, in our view, is the re-evaluation of people who have been ill for a long time and may have a long-standing Lyme disease infection. It is known that Lyme disease can persist as an active infection for years if left untreated, yet patients who fit this category hardly ever seem to be evaluated for Lyme disease or tested, if they have already been suffering symptoms for a long time. In our observation there has been no change at all for these patients since the guideline came out.

How are these issues being addresssed?

This is where the NICE Quality Standards Advisory Committee (QSAC) comes in. Our Chief Executive, Veronica Hughes, was invited to join the committee, along with several other former members of the NICE Guideline committee for Lyme disease, as subject matter experts. The QSAC will prepare a concise set of prioritised statements designed to drive measurable quality improvements, derived from the NICE guideline for Lyme disease. It is our hope at Caudwell LymeCo that this will directly address some of the issues we have mentioned above.

Before the meeting on December 6th, stakeholders, including Caudwell LymeCo, submitted comments suggesting their areas for quality improvement.

Following that meeting, consultation on the draft Lyme disease quality standard, during which stakeholders can submit comments on the draft standard, is scheduled to open in February 2019.

We will keep you up to date with developments in the work of the Quality Standards advisory committee on Lyme disease.

Julia Knight (left) who provides patient support as a member of Lyme Disease UK was the only representative from a patient group to attend the QSAC as an observer. Veronica Hughes (right) enjoyed meeting her before the committee started, to compare patient support experiences.

Further information

More information about quality standards consultations, and about other phases of developing quality standards, is available on NICE’s website.

If you need information on the guideline, you can read our handy guideline summary or explore the full Lyme disease guideline (NG95) on the NICE website.

If you need information from our helpdesk, Contact us.

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6 thoughts on “What is the Quality Standard for Lyme disease?

  1. The NHS needs better tests and stop Drs Consultants and Nurses ignoring us and our experiences and as such is more experience than staff. Its ridiculous and no one helps me

    Richard Coulthard

    Sent from AOL Mobile Ma

  2. How do I get help my GP won’t believe I have Lyme disease after negative nhs test , iv had small armin test low cd57, also had test in Cyprus Russian Dr juri, and Peters health shop in knowle posative, what can I do to get them to believe, Thanks 13 years now keep telling me it’s just fibromyalgia me/cfs

  3. What about testing in the UK  ! They’re using the Western Blott which is not acceptable .

    Sent from Yahoo Mail on Android

    1. It is recognised that the western blot is not highly reliable, however it is unfortunately one of the few diagnostic tests for Lyme disease with any scientific research published about them.
      We have more information about Lyme disease testing here:
      https://caudwelllyme.com/lyme-disease-testing/

      Lyme disease has varied and sometimes difficult to recognise symptoms, so we really do need a better test. This is the main area of research that caudwell LymeCo fundraises for.
      As a pragmatic workaround in the meantime, the NICE guideline advises doctors that tests cannot be fully relied on, a negative test should not be used to rule out Lyme disease if symptoms are still present, and the test should not be used at all in patients with a Lyme disease rash.

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