I was concerned over the funding of the specialist Lyme Disease clinic in Winchester which opened only a few months ago so I e mailed Dr Christine McCartney PHE.
Public Health England Rare and Imported Pathogens Porton Down Salisbury Wilts SP4 0JG Tim.firstname.lastname@example.org 01980612774/612400 Ms J Drayson Guildford Surrey 25th February 2014
Dear Ms Drayson PHE support for a Lyme clinic Dr McCartney has asked me to reply to your letter about support from Public Health England for a Lyme disease clinic at Winchester or another location.
I appreciate your concern that a clinic should be available on the South of England to cater for the needs of patients with Lyme and related illnesses, and indeed our intention is to support such a clinic as Dr McCartney stated at the Lyme Open Day. PHE is not a direct health service provider as clinical service provision is the responsibility of the NHS, and so any clinic has to be held under their auspices. We therefore have to partner with a suitable hospital Trust who are both willing to provide the service and who can offer the necessary facilities, staffing resilience to meet the demand within reasonable waiting times and ensure continuity of service, and clinical governance arrangements to ensure the service operates to the highest possible standards. To date the service has been provided by Winchester, funded through the normal NHS mechanisms for referral patients, and supported by PHE through provision of the extended range of tests without charge.
PHE are working to establish a permanent home for the clinic in a major NHS centre in the South of England, ideally with access to and participation from an academic infectious diseases group to support the clinical studies we believe are required to examine the diagnosis and management of Lyme disease and related illnesses in the UK and Europe. By hosting the clinic in a major centre we can facilitate access to the latest diagnostic support systems for management and research, ranging from MRI scanners to clinical immunology. As Lyme disease and similar conditions have protean manifestations and affect many systems in the body, it is important to be able to involve specialists in rheumatology, neurology, dermatology, cardiology, infectious diseases and other disciplines to offer the most comprehensive service.
An academic centre also allows us to involve the Clinical Research Network to support clinical studies in both General Practice as well as hospital cases. A definitive system for caring for sufferers from Lyme and similar diseases has to include access for patients from the whole of the UK. To achieve this, we have to work with other major centres to establish common investigation pathways, case definitions, treatment regimens and protocols to record and share clinical data so that we can identify those therapies that work, and promulgate best practice. Therefore, we are also approaching centres in London and the rest of England to form a network of service providers within the NHS to meet the demand, and will liaise with colleagues in Scotland about arrangements for NHS Scotland.
Clearly this is going to take some time to set up. In the meantime, we will continue to support Winchester, subject to that Trust agreeing, in providing a service for Lyme patients and in ensuring continuity of care until the permanent solution is operational. Finally, the National Institute of Health Research recently awarded funds to a number of universities to work with PHE as Health Protection Research Units.
One of the programmes included in the Emerging Diseases unit award was on Lyme Disease. Although this is a relatively small programme, it is the basis on which a comprehensive study of Lyme Disease in the UK can be launched.
I hope this answers your concerns, but you will understand that we have a number of complex negotiations to undertake that will take time, and by their very nature will have to be confidential until agreements are signed.
Dr Tim Brooks Clinical Services Director Rare & Imported Pathogens Laboratory Public Health England Porton Down Salisbury Wilts SP4 0JG Copy: Countess of Mar Christine McCartney Matthew Dryden George Stafford
Clearly any specialist centre will only be as good as the open mindedness of it's doctors and their willingness to consider empirical treatment until more accurate testing is available, these doctors will learn from following their patients over time and following the emerging science on this complex disease.
I remain hopeful, this is an enormous step forward from the drawer full of replies I have had from the Health Protection agency and Dept of Health in the past seven years.