LDA met with a small group of MPs, their representatives and a member of the House of Lords at Portcullis House on 16/11/2016. The meeting was facilitated and chaired by Hugo Swire MP. Those present were:
- Simon Hoare MP
- Oliver Letwin MP
- Natalie McGarry MP
- Martin Vickers MP
- Teresa Pearce MP
- Derek Twigg MP
- Baroness Masham of Ilton
and representatives from the offices of
- Clive Betts MP
- Michelle Donelan MP
- Andrew Stephenson MP
- Claire Perry MP
The briefing note provided by LDA was discussed. LDA passed round a vial of newly collected nymph ticks to show how small they are and how they can genuinely go unnoticed. MPs were told that although on average about 6% of UK ticks are infected with Lyme disease, it varies from place to place. On the continent infection rates are very much higher, and other diseases more widespread; this is where the UK is heading.
The main topic of discussion was the need for specialist expertise. MPs advised that the budget for specialised commissioning by NHS England was already stretched and so securing funding for a new clinic would be challenging. However, it was agreed that it would be useful for work to progress towards this in parallel with the NICE guideline process, rather than waiting until after publication of the guideline.
A specialist Lyme clinic would have initial set-up as well as running costs but it was anticipated that most running costs would be covered by replacing the current multiple local referrals. A multi-disciplinary approach, with facilities to run assessment and review clinics and to safely administer OPAT (Outpatient Parenteral Antibiotic Therapy) on a day patient basis, would seem most cost-effective and consistent with currently available evidence.
LDA made the point that an NHS clinic would be able to collect and analyse outcome data, an area that seems currently neglected by private clinics.
MPs observed that as well as limited budgets and competition with other health conditions for limited resources and funding, the apparent divisions and discord that they perceived between various ‘Lyme splinter groups’ was thought likely to be a significant deterrent for more concerted political interest and commitment to invest in service development.
Further possible options aimed at securing progress towards a specialist Lyme clinic include:
- A Westminster Hall debate on Lyme disease.
- Approaching the Chair of the Parliamentary Health Select Committee, Sarah Wollaston MP and requesting consideration of a formal enquiry into the need for service development for Lyme and tick-borne diseases. Currently there are a large number of other health conditions awaiting enquiry by the Committee.
- Initiating dialogue with NHS England.
The meeting took place over one hour and was felt useful by all.