Important changes are taking place in 2018 for Lyme disease patients in the UK.
Treatment guidelines for Lyme disease
The UK now has formal clinical guidelines for Lyme disease for the first time. The NICE guideline has made a number of small but important steps forward in the diagnosis and care of Lyme disease patients on the NHS.
This guideline is only the beginning, however. It has not solved every problem in one step, partly because not all the problems faced by Lyme disease patients are issues of policy in clinical practice that could be addressed by NICE.
There is a lack of published research evidence on how to cure persistent Lyme disease, for example. There is a shortage of experts focused on Lyme disease, with supporting resources in place, among NHS consultants. Across the UK, Lyme disease patients can be referred to a variety of consultants but, without specialists who focus deeply on Lyme disease, clinical knowledge is spread too thinly among them. One aspect of the incremental progress made by the guideline has been to shine a light on these needs, even though it does not come under the remit of NICE to resolve them.
Should the guideline be thrown out entirely because of the shortage of evidence? That would mean rejecting the evidence that has already been published and usefully synthesised in the guideline, and can now be used to bring about some important improvements in diagnosis and care, because there isn’t more of it. Follow the link (above) to read about the improvements achieved so far.
Is the guideline unacceptable because some evidence that did not meet the criteria required by NICE was rejected? As with all other NICE guidelines, there are specified rules for the standards of evidence which can be used to make recommendations. The manual that details this NICE guideline process is reviewed regularly and is currently open to external stakeholder comment via its website. This provides the opportunity for these objections to be formally presented to NICE for their consideration.
Caudwell LymeCo believes that the following issues now need attention:
1) Securing a budget for Lyme disease research from the Department of Health (DH)
This is required to fund the Lyme disease research which was recommended in the NICE guideline and supported in general terms by the DH’s own independent enquiry. Caudwell LymeCo’s estimate is that the research recommended in these guidelines could probably be done for around £10 million.
Caudwell LymeCo is raising money to donate towards this research. If you want to get involved and do something positive, you could join our growing group of fundraising supporters.
2) The need to create “Centres of Excellence” for Lyme disease in NHS hospitals
Funding should be sought to create several Centres of Excellence in existing NHS hospitals, to serve as tertiary referral centres for Lyme disease patients. Currently, Lyme disease patients are either treated by their GP or referred to a local consultant (possibly a neurologist, infectious diseases consultant, rheumatologist or other specialist) and this doctor may only have treated a few or even no Lyme disease patients before. If a GP feels they cannot find a consultant with the necessary experience and knowledge of Lyme disease to help a particular patient, there is currently nothing they can do.
3) The need to design a public & professional information campaign
Cauwell LymeCo and our sponsor and spokesman, Mr. John Caudwell, have worked hard on awareness raising, but there are still too many people in the UK with little or no knowledge of Lyme disease. Overt government ratification of an official information campaign would help the public identify what to trust among the material about Lyme disease, both online and in the press, that spans a spectrum from reliable to misleading and even dangerous.
Caudwell LymeCo works hard to be a provider of proven information about Lyme disease to help patients. If you want to learn more, you can read our general information pages or our summary of the NICE guideline.
4) The need to press for a social security and education system that is more supportive of Lyme disease patients
The welfare system needs to be studied in order to understand why patients with severe chronic symptoms ensuing from Lyme disease are sometimes refused financial benefits or other forms of state-funded help. This should result in recommendations being issued based on the findings, and where necessary alterations being made to the methods of assessment. Suitable experts should also formulate official recommendations for schools on how to support children with long-term Lyme disease symptoms.
The new Lyme disease NICE guideline makes a small step in the right direction, advising doctors to support people who have ongoing symptoms after Lyme disease by “encouraging and helping them to access additional services, including referring to adult social care for a care and support needs assessment” and also “communicating with children and families’ social care, schools and higher education, and employers about the person’s need for a gradual return to activities, if relevant.”
Caudwell LymeCo Charity has asked the All Party Parliamentary Group for Lyme disease to investigate the way Lyme disease patienta are handled under the current system.
How to get involved
The best way the public can press for these improvements is by joining the growing group of people who are taking positive and constructive steps to help.
Patients can read the NICE guideline, of our summary of the guideline, ensuring they know and understand the new provisions it offers, and ask their GP to implement them as appropriate. Patients can only become advocates for better diagnosis and treatment, for themselves and for others, if they know what the guideline entitles them to expect.
Volunteers can educate family, friends and the general public on Lyme disease prevention and recognition.
We supply leaflets you can download and print, or you can contact us to order ready printed trifold leaflets and/or collection boxes for donations. We also have lessons (with teacher crib-sheets) for primary school children.
Fundraising volunteers can get involved by raising money towards the vital research that we need in order to find cures for Lyme disease patients. This will help to ensure that when the guideline is updated in the future, it provides the solutions that Lyme disease patients really need.
Follow the link for some fundraising ideas.