Friday, 28 February 2014

NHS SPECIALIST LYME DISEASE CLINICS IN UK

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.brooks@phe.gov.uk
                                                                   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.

Yours sincerely


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.

5 comments:

  1. Laura Cunningham2 April 2014 10:57

    I was advised that the clinic in Winchester had not been commissioned therefore we could not get a referral to it. is there any other alternative clinic we can go to? Or will we have to pay privately to see a specialist (for my 3 year old?)

    ReplyDelete
    Replies
    1. Laura I am sorry to hear you have a 3 year old that might have Lyme Disease the situation in the UK is quite dire in the NHS. I have not heard of one Pediatrician who has really taken on board the possibility of a chronic or late infection of Borrelia let alone any other co infections that many ticks are able to pass on. All seem to follow the outdated guidance on NHS websites based on HPA information sadly although this has been found to be based on many uncertainties in the science those guidelines have yet to be updated.
      There are a number of parents with young children that I know through Facebook groups who travel abroad to seek help from specialist doctors who have experience of dealing with many thousands of cases of Lyme Disease.
      In the UK there are only a smattering of Consultants and Doctors who are realising that a chronic infection is very different than an early acute infection and may need longer or different treatments. Finding one to help a child would be like looking for a needle in a haystack.
      If you find me on Facebook I will put you in touch with some of the other mums.
      Keep seeking answers - all too often our NHS doctors are denying this disease based on misinformation and often over inflated egos and not the available science.

      Delete
  2. Hi Laura. I am banging my head against a wall trying to get help. I have had 2 tick bite rashes which the doc didnt know was. My problems have since got so bad. I had a test but doc said they are unrealible. Came back in 3 days ??? and negative. Since then the doc said to take it out my mind. My symptoms other that the rashes are terrible joint pain, especially in legs that it hurts to walk. Vertigo and dizziness, terrible brain fog and balance problems. A feeling that my limbs dont belong to me. Sensitivity to wind, light and temperature....really affects my head! My new ones are sore feet that i can barely walk....night sweats and the most awful dreams every night!. The doc just seems to roll her eyes when i go in that i try to now just put up with it. I dont know who can help me. My children are still young, 11 and 7 and they are aware that i am unwell, am worried if something doesnt give i will get worse ( if that's possible). Joanne Drayson, i have sent you a message on FB but think its gone into your ' others' folder.

    ReplyDelete
    Replies
    1. Hi Wendy much of what I said above to Laura also applies but I have sent you a message via Facebook. Good Luck in finding a doctor to help you

      Delete
  3. Banging head against a wall too!!!

    ReplyDelete