General e-newsletter: Our Autumn update

October 30, 2017

We apologise because we haven’t sent an e-newsletter for several months. We recently obtained our first database and have had a mammoth task of updating 5 years worth of records. Thank you to everyone (nearly 400 people!) who joined our community since we launched our new website in December 2016.

This year we sent Freedom of Information Requests to every health authority area in England, Scotland, Wales and Northern Ireland, asking whether surgeries or Botox injections are routinely funded for people with facial palsy. We will be reporting on our findings in the coming months. We need to push for improvement of access to services in every country. If you have not shared your experiences with us before, please do email us with your comments if you have struggled to access treatment. We will be carrying out a similar exercise next year in relation to physiotherapy. If you have questions about what help is available in your area do get in touch.

Visiting a surgeon to discuss surgery can be very daunting. You only get a short appointment in which to collect information about what may be a life changing decision. To make it easier we have worked with Facial Palsy UK’s Medical Advisory Board to create a form with some prepared questions for patients. Download here.

AGM details

Our AGM will be held on Saturday 18th November from 12 – 3pm at Langley College, Berkshire. An opportunity to meet people with facial palsy and health professionals specialising in this condition.Our AGM will be held on Saturday 18th November from 12 – 3pm at Langley College, Berkshire. An opportunity to meet people with facial palsy and health professionals specialising in this condition.

Claire Hamlet from the Centre of Appearance Research will be presenting the findings of our research project, the first worldwide study to establish a research agenda for facial palsy.

James Parkin will share his experiences of facial palsy as a result of cancer of the parotid gland. James will also perform some songs which have been part of his recovery journey.

A family friendly event with drinks and light lunch provided. Join us in celebrating our achievements for the year ended 30 June 2017.

Find out more

New Video Library

We have created a video library enabling people to find videos of interest to them more easily. More will be added as resources allow.We have created a video library enabling people to find videos of interest to them more easily. More will be added as resources allow.

Go to Video Library

Great North Run 2017

Thank you to all those who took part and raised an amazing amount of money for the charity. We will soon find out whether we have places for next year’s event.

See more fundraising news

Research Priorities

Thank you to everyone who took part in our Delphi Research exercise. We now have a top 10 list of research priorities from those affected by facial palsy and relevant health professionals. Read more.

In the News

Angelina Jolie announced she had recovered from Bell’s palsy and this prompted a lot of press interest in the condition. Joanne & Rachael raised much needed awareness in Belfast. Jacquie Pond was featured in Woman Magazine.

The FRAME project was featured in the Daily Mail and on BBC Click (see video below). Selma, Danielle and Kirsty appeared in The Sun. Thank you to all our media volunteers. To be considered for the FRAME (VR Goggles/glasses) research trials starting next year, if you haven’t expressed an interest previously, please get in touch stating you wish to receive Research news. We will then update your communication preferences.