Lyme Disease UK

Patient Leader

Lyme Disease UK is the largest patient support network for Lyme disease sufferers and their loved ones in the UK. We run an informative website, a public Facebook page, an email newsletter, a Facebook support group with well over 4500 people and a Twitter account. Our team of volunteers attends public events, protests, meetings and conferences and liaises with other international Lyme disease organisations in order to campaign for an increase in knowledge and advancements in patient care. We are also stakeholders in a national Lyme disease guideline writing process. Our community inspires us daily and helps us to foster hope in the face of so much suffering and adversity.

Nominations

Best in Show: Google+ Health Activist Hero Best in Show: Facebook Best Kept Secret Best in Show: Community or Forum Patient Leader Hero

In a world of chronically sick people, they have started and developed an online support group for Lyme disease, one of the most misunderstood illnesses in the UK, despite both being chronically ill themselves. They have created a safe place where suffers can talk about anything they want to connected with this illness and also created a great resource of knowledge and information that patients can read and learn more about the illness and the help available. They have also managed by sheer hard work and determination to engage with Public Health England to such an extent that the group's presence was noted at the recent Conference on Lyme Disease in London and a series of questions were submitted from patients to PHE which Lady Mar no less requested that PHE answer in writing. They are both brave, inspiring people for whom support, compassion, education and advocacy are second nature despite their ongoing battles with their own health.  — Lyme

Natasha and Louise run a facebook discussion group, page and website dedicated to helping those with Lyme Disease. Lyme disease is not recognised or treated properly by most medical professionals and sufferers are usually not given proper care on the NHS. Therefore sufferers feel isolated, abandoned, socially stigmatised and are often branded as mentally ill or malingerers when they actually have a treatable infection. Natasha and Louise both have Lyme and are really quite sick but despite this, they put a huge amount of effort in, daily, supporting other sufferers and bringing a voice to those who are voiceless. The group is very active, with online discussion, friendship, and engagement with the wider political and policy regarding Lyme disease in the uk. The group is an absolute lifeline to many people.  — Nicola

This forum has, without doubt, given me more understanding of Lyme Disease, from which I suffer, than any health professional over 6 years. The administrators, Natasha Metcalf & Louise Dean are exceptionally knowledgeable and supportive of the group members, many of whom are desperately seeking treatment and advice denied by the NHS. They have also guided successful group campaigns where we are taking our collective knowledge to doctors, researchers and politicians.  — Fiona

Louise co-runs Lyme Disease UK with me, has built our website for us and has dedicated so many hours to helping Lyme patients in the UK when she is so sick herself - she is an inspiration!  — Lyme

Louise Dean and Natasha Redcalf have set up an online support group for those affected by Lyme disease. They are amazing people.  — sarah

This web site has been the result of 8 months of work by Natasha Metcalfe and Louise Dean, bringing people together first via Facebook and now onto the new web site. This is a valuable source of information and support for Lyme patients in the UK. It shows the first ever Lyme worldwide protest in May 2013 and archives media events - all helping to raise awareness of this dangerous disease  — Denise

The support and knowledge that the founders and members of this group give for many people suffering from Lyme Disease and co-infections and ignored by the mainstream medical profession is phenomenal.  — Ann

I have nominated both Louise Dean and Natasha Metcalfe who founded LymeDiseaseUK for doing an outstanding job supporting British and European sufferers of this devastating disease. Not only are they battling their own extreme health issues they have also made the website into a fabulous resource where sufferers can find information to help them fight this disease which is not always recognized by the NHS. They both work tirelessly to support people who are often desperate for help and at their wits end, pointing them in the right direction for medical help and treatment. They also successfully fought to become one of the groups represented at the Health Protection Agency's recent conference on Lyme Disease in London. All this from a group only started this year but which now has upwards of 300 members. They would be worthy recipients of this award.  — Lyme

Formed less than two years ago by two fellow sufferers of Lyme Disease the group now has over 1100 members and has become the source of the best information and support for patients on the net. Natasha and Louise work tirelessly to ensure the smooth running of the group and to support the ever growing number of new sufferers.  — Lyme

This group has rapidly become the best place on the net for resources and support for Lyme Disease in the UK. Only running for a little over twelve months the group has over 1100 members. The leaders work tirelessly to provide up to the minute research and information and despite their own illnesses they support everyone who needs it.

This forum has the lot, a warm friendly atmosphere, all the support patients need, amazing leadership which ensures that special atmosphere prevails, a massive library of relevant, up to date information and also participation in symposia and seminars. Members are welcomed, supported and encouraged through the trials of this awful disease.

LDUK has become an important life line for people with Lyme disease who often feel isolated and alone. They are also stakeholders in the NICE committee for Lyme disease guidelines. The group support each other well and share vital information with each other. Many of us would be lost without them.  — Bevedley

LDUK provide a vital space for 1000s of UK lyme patients and those concerned that they have been infected.. They gave me information and support that is not provided by any other org in the UK. As a direct result of joining their group I am in treatment. I am one of many members who feel that LDUK has changed, if not saved, their lives!  — Ann

Fantastic help, information and support for both sufferers of Lyme Disease and their families.  — Lisa

A community which offers an invaluable source of support for thousands of patients across the UK who are dealing with an illness that can cause very intense suffering, but which is still not fully understood by the UK medical community. LDUK is a lifeline but is also involved in many efforts to improve the handling of Lyme disease in the UK.  — Kellie

This charity is helping Lyme Disease sufferers to understand to deal with their life changing disease through a helpful and knowledgable community. Lyme Disease sufferers constantly find themselves abandoned by medical professionals, family and society as a whole. Lymediseaseuk.com gives them an understanding online community.  — Mark

Lyme Disease UK is a wonderful forum! It's helped me so much while I've been navigating my own health problems. Natasha & Louise did a wonderful thing when they founded the community and, together with their admin helpers, they do a great job running it. They're very responsive to any questions, and are so knowledgeable and kind. Thank you LDUK!:)  — James

With over 4 and a half thousand members this forum is an invaluable source of information and support for anyone suffering from Lyme disease. A warm, compassionate, insightful and extremely knowledgeable group of people.  — B

This patient support network has a private discussion group where we discuss anything and everything to do with Lyme disease and the many problems we face with diagnosis and treatment in the UK. If it wasn't for this group I'd be a lot worse off. The founders, Louise and Natasha have had such a positive impact on our Lyme jourther.

Louise & Natasha have created a fantastic supportive group in the midst of their own illness. They put a lot of time and effort into the rapidly growing group, offering support, education and information to sufferers and relatives of sufferers of this terribly misunderstood disease. It gives us all hope that one day proper diagnosis and treatment will be available.  — Lyme

Bringing together people suffering with Lyme Disease to provide guidance, support and a voice to us all.  — Roger

Setting up a long-overdue and much needed UK-based Lyme support group on Facebook  — Sharon

My nomination is for Natasha Metcalf and Louise Dean for all their hard work and devotion to the Lyme disease UK discussion group, which they run in spite of their own health issues due to Lyme disease. I was made to feel so alone for years, on the subject of Lyme disease, by the NHS. I don't feel alone anymore thanks to the discussion group & will be eternally grateful to them both for this. I now know there are literally thousands of us suffering from this dreadful disease. Due to the discussion group, we can share our experiences & information, and above all else be there for one another. Natasha & Louise also manage to inject a lot of humour which makes it very uplifting for everyone. With all the many others who needlessly suffer from this devastating disease and are left to their own devices, I take my hat off to you both, we really appreciate all that you do and would love for you to receive this award in recognition of your hard work and devotion to all of us. This would be a well deserved award.  — kim

This life-saving, soul-saving, warm, informative, ground-breaking group is determinedly trailblazing its way through the thorniest of territories to raise awareness of Lyme Disease in the UK but more than that through creative activism it pushes for better testing and treatment of Lyme Disease. It gives an otherwise abandoned patient group hope.  — Kathryn

Lyme Disease UK

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