REMINDER TO START WRITING LETTERS AND SPREAD THE WORD
RLS UK has kindly agreed to support a campaign for education of GPs in the UK and has approved the template letter for all UK members to send to the organisations/bodies listed below. The letter should be personalised to tell your own story about treatment (or lack thereof) and side effects and how RLS has affected your work, social and family life. The Association Of British Neurologists has been very helpful and pointed out there is a shortage of neurologists in the UK and that most RLS patients will only ever see a GP about their RLS so GP education should be the first priority.
The letter should be sent between mid June to the end of July 2021 by as many members and their families and friends as possible to the following:
1. Royal College of General Practitioners
30 Euston Square
London NW1 2FB
2.The Association of British Neurologists
27 Boswell Street
London WC1N 3JZ
3. Your Local GP Surgery
4. Your local MP
5. Your local university/medical school.
6. The new NHS curriculum is currently being worked on and the NHS is asking its members for comments. We should send letters to them as well.
If you're a member of other RLS help groups in the UK, please ask for others to send letters at the same time.
I am also in touch with a journalist from the Independent newspaper and a health journalist at the BBC, both of whom have expressed an interest in covering the campaign and publishing "lived experience" stories. However, there's no guarantee they'll publish as other major world health issues ( Covid, long Covid and vaccine side effects) are taking priority.
TEMPLATE LETTER ( Copy and paste)
RLS is one of the most common neurological diseases in the UK, affecting approximately 5% of the population in varying degrees. It has the highest economic impact of all other neurological diseases combined and the highest suicide rate. It causes severe sleep disruption and has a major impact on social, family and work life.
RLS UK has carried out research which has confirmed that this serious disease is not taught at medical schools or during GP training in the UK. As most patients will only ever see their GP (and not a neurologist) about their RLS, it is essential that this serious neurological disease is taught in depth.
Insert 2 or 3 short paragraphs about your personal experience with RLS, setting out when and how you were diagnosed, what medications you have been given, what side effects you have experienced, including Impulse Control Disorder or Augmentation with Dopamine Agonists, whether your GP increased the dose of your medications or advised about side effects. Explain how RLS has affected your home life (lack of sleep, inability to share bedroom with partner), work and social life. Has your GP advised stopping dopamine agonists without a sensible withdrawal schedule or not known how to treat Impulse Control Disorders or suggested your symptoms are psychological/not serious?]
I am now asking for RLS to be taught in depth at universities and medical schools and as part of GP training in the UK. The training must include the benefits of lifestyle modification and raising serum ferritin through treatment with iron before medication is considered and the possible complications from treatment. In particular, future doctors need to learn about the management of augmentation and withdrawal with dopamine agonists and the medications that worsen RLS.
There is a need for more research into this common, serious neurological disease and we desperately need more neurologists to specialise in this area.
It is unacceptable that the vast majority of RLS patients know far more about RLS than the GPs and neurologists treating them.
I look forward to hearing from you,
Name, Address, email.