LDA is starting a project to develop a specification for a specialist NHS clinic for Lyme disease. We have been trying to prompt this for years and even had support from a House of Lords debate, but nothing has happened.
So if doctors have not the time to do this, patients will make the time. LDA has engaged Lab4Living, a research group at Sheffield Hallam University, to run the project – they have experience in this type of work. It is intended that GPs, consultants, nurses, researchers, commissioners and patients, using co-production methods, will work together to design something that has a chance of working without being totally overwhelmed to start with.
If we can, between us all, come up with a design that has a good business case and solves some problems, then there is a good chance an NHS Trust will pick it up. One pilot in England, one in Scotland for a start, then regional centres to follow as supported by the Under-Secretary of State, then Lord Prior, all those years ago.
The aim is to consult widely, so watch this space.
The 2018 NICE Guideline recommended, as a high priority, the gathering of data on Lyme disease patients in the UK, their treatment and outcome. Current practice is to discharge patients without long term follow up, so outcomes are not recorded. Based on published studies in other countries, we believe many of these patients do not fully recover, and we know this from our own experience.
Those diagnosed with Lyme disease early in infection and appropriately treated, usually recover. However complex cases, and long standing cases, frequently need referral to secondary care by a GP. Symptoms are varied and so consultations may be with a number of different specialties such as infectious diseases, neurology, rheumatology or cardiology, where consultants have too few patients to develop sufficient experience. These specialists, working in isolation, then individually report their findings back to the GP.
A multi-disciplinary clinic could have a lead consultant who has an overview of a case and provide a ‘one stop shop’ in the treatment of their patient. They would build up experience and GPs would have a regional source of more knowledgeable advice.
Makes sense, doesn’t it?!