Closed petition Fund an NHS Lyme Disease Centre of Excellence

NICE guidelines (2018) suggest to refer complicated Lyme Disease sufferers to a Specialist. Referral is often made to other specialties who do not have the knowledge or experience to manage this debilitating disease of multi-systemic symptoms .

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Endemic in the UK, with an est. 3,000 new cases a year, Lyme disease can cause tremendous suffering to some patients, each requiring an individualised holistic plan of care which no other specialty can give. Sufferers with ongoing symptoms see multiple inexperienced Doctors, costing the NHS thousands in various wasted appointments/investigations. Many are unable to work fulltime. Referral to a Specialist in the Centre, experienced and trained in Lyme would have the ability to manage all aspects of the disease.

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Government responded

This response was given on 27 September 2019

There are no plans to establish a Centre of Excellence for Lyme disease. NICE has issued a clinical guideline (2018) and a quality standard (2019) to support diagnosis and treatment of this disease.

Read the response in full

Lyme disease is a common infection acquired through the bite of an infected tick. Most cases are diagnosed and treated by GPs and recover uneventfully, but a few cases which present late or are not treated adequately may develop complicated Lyme disease with neurological or other symptoms that can be difficult to treat.

At the Department of Health and Social Care’s request, the National Institute for Health and Care Excellence (NICE) developed evidence-based clinical guidance for the diagnosis and treatment of Lyme disease. This was published in April 2018 []. This guidance identified when referrals to specialists should be considered and noted that the specialist referred to should be appropriate for the person's history or symptoms, for example, an adult or paediatric infection specialist, rheumatologist or neurologist. This guidance did not recommend the establishment of an NHS Lyme Disease Centre of Excellence and there are no plans to establish such a centre.

More recently (July 2019) NICE has published a quality standard on Lyme disease [] which sets out expectations on diagnosis and treatment in certain scenarios as well as health promotion activities to raise public awareness about how to prevent Lyme disease.

All NICE guidance is based on a thorough assessment of the available evidence and is developed through extensive engagement with a wide range of stakeholders. It represents best practice and health and care professionals should take it fully into account in the care and treatment of individual patients. This guidance does not, however, replace the judgement of health and care professionals to determine the best treatment for individual patients.

It is recognised that Lyme disease can be a difficult condition to diagnose. We expect GPs to use their professional judgement in diagnosing and treating this condition. All medical training includes elements on infectious diseases and the way they are transmitted. In addition, Public Health England (PHE) has a helpline for doctors as well as running GP training days. In the UK the medical revalidation programme ensures that specialists are up to date in their field. Several infectious disease clinics across the UK see cases of Lyme disease, as do neurology and rheumatology specialist centres. Specialist doctors have access to the literature on Lyme disease and are trained in the recognition and management of the disease within their higher professional training and continuing professional development.

Services for the treatment of Lyme disease are commissioned locally and are the responsibility of Clinical Commissioning Groups. NHS England expects commissioners to provide services based on clinical insight and local population needs. All treatment for Lyme or other conditions should be evidence-based and targeted at the disease mechanisms underlying those symptoms. Each patient should be treated according to the pathological process giving rise to those symptoms.

Department of Health and Social Care.

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