PatientsLikeMe ™

My role at PLM:

• Encouraging the sharing of experiences, information and ideas


• Making suggestions in response to what is shared through the forum but please be aware that we cannot give individual advice


• Signposting you to relevant tools and alerting to new site resources


• Responding to your ideas and suggestions in developing the site, and passing your feedback to the team so that we develop intuitive and informative tools


• Making sure that we pull together and foster community spirit and that the forum is a safe place for discussion and debate

I look forward to helping you, and hope that you find PLM useful in negotiating the ups and downs of your illness experience. There is so much we can gain by learning how others cope in a similar situation.

Background

I joined the ALS/MND team at King's College Hospital, London, UK in 2000 and thoroughly enjoyed the Coordinator role within the team. It was a varied role that brings together many different professionals to work together in supporting people living with ALS/MND. I have since moved on from King's (with difficulty it was a great place to work!).

I now work as a project manager for an End of life project that encourages and trains professionals to use their communication skills, experience and key documents to explore individual patient wishes more proactively. If health and social services know more about patient wishes relating to treatment choices, preferred place of care, etc it also helps to share this knowledge and monitor any change of mind or change in condition. Knowing more about individual wishes of patients with any kind of life limiting condition may help to avoid inappropriate hospital admissions and ensure support is in place for example. Ultimately this should ensure that patients are cared for more appropriately in the place of their choice.

I look forward to meeting people through the site and learning what issues are important to individuals and the community as a whole. 

I live in London, although I grew up in Scotland. If you message me be sure and factor in the time difference ;-)

In my spare time I love escaping to the countryside and walking, also swimming and chilling out in the garden are my relaxation activities of choice. 

Emma