Peninsula Parkinsons Excellence Network (PenPEN)

Welcome to the Peninsula Parkinsons Excellence Network (PenPEN)

PenPEN executive team

Here is the current structure of the PenPEN executive team:

  • Lead – Dr Camille Carroll – Neurologist (Plymouth)
  • Exeter – Dr Sarah Jackson – Healthcare of the Elderly
  • Torbay – Vicky Queen – Parkinsons Disease Nurse Specialist
  • Cornwall – Lynne Osborne – Parkinsons Disease Nurse Specialist
  • Patient Representative – Jane Rideout – Exeter
  • Carer Representative – Val Evans – Tavistock

Local information/services:

For peninsula-wide guidance from PenPEN, we have the following links for health professionals:

Useful links to various resources and information for patients with Parkinsons:

  • Non-motor symptoms and Parkinsons part one and part two - a patient-friendly booklet from Canada on NMS by Ronald Postuma, Christos Galatas at McGill University Health Centre, Quebec (October 2011)
  • Apomorphine for Parkinsons - Best Practice Guidelines by the South East London & Kent PDNS Team (2013)
  • Parkinsons Excellence Youtube Channel - view a YouTube video titled “Transforming the Future” from Parkinsons UK about the new national strategy for Parkinson’s (2015-2019) which will bring together everyone with an interest in the condition. Hear from key people who will be working to transform lives through this bold new approach (originally published April 2014).
  • Parkinsons and Twitter - a book has recently been published in the USA by an award-winning US journalist and veteran TV producer, Jon Palfreman, which tells the stories of doctors, researchers and patients hunting for a cure, stories that take on a particular urgency since he himself has been diagnosed with the illness. The book is entitled “Brain Storms”. There is also a Twitter feed at @ReduceParkinson.

Useful links:

A small list of potentially useful links to other resources – we can never claim it is exhaustive, and will be missing key links – but if you know of a useful link/resource, or want to add some more info on a link please contact us.

Support:

Blogs:

A Parkinson's Blog - a blog by Russell Hale who shares his experience of Parkinson’s Disease. 

Parkinson’s Disease! is not the final frontier. These are the blogs of the Rusty Hale. His new mission: to explore this strange new world after DBS, to seek out a better daily life after Appo-Morphine, to find new ways to adjust to living with PD, to boldly go where no Rusty has gone before….Parkinson’s Disease and more!! I threw this page together to give a real life account of living with the disease, for me , family and friends read on…

You can also follow on Facebook.

News

Can a smartphone unlock new discoveries in Parkinson's?

You’re invited to join a world-first global study to learn more about your health, support people living with Parkinson’s and help change healthcare.

You can become a citizen scientist, tracking ten aspects of your health that are important to you for 100 days using the uMotif platform on your smartphone or tablet. Everyone will track their sleep quality, mood, exercise, diet and stress levels. Then it’s up to you to choose another five aspects of your health that are most important to you.

In return, you can share your experiences and see how everyone else taking part in the study is benefitting on the 100 For Parkinson’s website. The data you’re donating will contribute to academic research approved by a committee led by the Cure Parkinson’s Trust, helping to unlock new discoveries in Parkinson’s.

This is a world-first people-centred project of this size and scale in healthcare and open to everyone, whether you have Parkinson’s or not. You can be a part of it!

Simply visit www.100forparkinsons.com, download the uMotif app from the Apple App Store or Google Play, choose “I would like to register” and enter code 100FP.

Cycling helps Parkinson's patients

Channel 4 News (26 November 2012) has a feature suggesting that Parkinson’s patients may be able to reduce their symptoms by emulating British cycle hero Bradley Wiggins, new research claims.

Scientists saw that cycling led to greater connectivity between brain regions linked to the disease. But research found that vigorous “forced” pedalling was key to the changes, which were associated with improvements in co-ordination and balance.

See more at Channel 4 News.

Scottish scientists make Parkinson's fight discovery

A report in The Scotsman (26 Oct 2015):

Researchers at the University of Dundee have found links between the genetic causes of Parkinson’s at a molecular level.

Vital molecular “switches” which regulate cell growth and survival have been found to be the missing link in explaining why some people are afflicted with Parkinson’s disease later in life.

Read the article at The Scotsman (26 Oct 2015).

The woman who can smell Parkinson's disease

BBC News (22 October 2015) aired an item on a Scots woman from Perth whose super sense of smell could change the way Parkinson’s disease is diagnosed:

Joy noticed something had changed with her husband long before he was diagnosed – six years before. She says: “His smell changed and it seemed difficult to describe. It wasn’t all of a sudden. It was very subtle – a musky smell. “I got an occasional smell.” Joy only linked this odour to Parkinson’s after joining the charity Parkinson’s UK and meeting people with the same distinct odour.

For more see BBC News (22 Oct 2015).

English national ballet provides Dance for Parkinson's classes

The Daily Telegraph (13 March 2014) has an article about how English National Ballet provides Dance for Parkinson’s classes, but more are needed:

Every Saturday afternoon, one of English National Ballet’s rehearsal rooms in London hosts a very unusual troupe of dancers. “Dance for Parkinson’s” is the Ballet company’s programme for people with Parkinson’s Disease, their families or carers.

For more see Daily Telegraph (13 Mar 2014).

Carers project

Update April 2016

Vicky Queen, Acute PDNS at Torbay hospital is leading the carer’s POD and the following rough plan has been made with an initial meeting being coordinated for the end of April/beginning of May 2016. 

  • Setting up the project/pod group.
  • What do carers want (info from the Parkinson’s LINK work).
  • Mapping of what is currently available in terms of carers support (Parkinson’s UK are currently looking at this).
  • Provision of distance support (including facebook, IT forums and telephone).
  • Face to face provision.
  • Clinical carer support.
  • Acute hospital carer support.

If you are interested in being part of this work please contact Vicky Queen. 

Vicky Queen

Acute Parkinson’s Disease Nurse Specialist,Queen’s Nurse and Lead Queen’s Nurse for the South West of England. Appointed Committee Member of the Royal College of Nursing Neurosciences Committee.

Level 6, Simpson Ward,Torbay Hospital, Lowes Bridge,Torquay TQ2 7AA

Telephone: +44 78102 84655 Email: vicky.queen@nhs.net

http://www.torbayandsouthdevon.nhs.uk  Skype: sdh14891  Twitter: @VickyPdns

For clinic bookings and referrals please contact: Mrs A Darling, Movement Disorder Admin Co-Ordinator

Telephone: +44 1803 655513 Email: mandy.darling@nhs.net


Read more about PenPEN projects and research