Peninsula Parkinsons Excellence Network (PenPEN) - projects and research

Ongoing projects that the PenPEN team are currently working on

Film for schools

Community lead: Lynda Fearn

Started: March 2015                                               

Status: ongoing

Other contributors: Karen Rose, Sue Whipps, Eiffon Fearn

Aim: development of a film aimed at schools to educate staff about the emotional needs of children who have a parent with Parkinson’s.

Outcome: film completed. 

In-patient management guidelines

Lead: Fiona Murphy (Parkinsons Specialist Nurse – Plymouth)

Other contributors: Plymouth Parkinsons Steering Group

Started: March 2015                                    

Status: completed

Aim: developing guidelines for hospital staff to improve care of people with Parkinson’s when they are admitted to hospital

Outcome: guidelines developed and shared with the national network

Patient involvement guidelines

Lead: TBC

Started: TBC

Notes:

We have been contacted by Parkinson's UK in Scotland to see if we would be interested in developing guidelines on how to involve patients in service improvement projects. Jane Rideout and Val Evans have provided very useful insights. Further information to follow.

New in-patient diagnosis pathway

Lead: Jane Davis

Started: October 2015                                                               

Status: ongoing

Other contributors: Val Evans, Nicola Hawkes, Ben Blight, Kat Topor

Aim: to develop a new-patient pathway that improves the diagnosis experience and care in the first year

Outcome: baseline audit undertaken which informed new pathway development at PHNT; still being refined, will then be disseminated

Notes: the diagnoses process of Parkinson's can be poor and occasionally insensitive, and can leave a person feeling helpless. Jane is looking to improve the diagnosis process within the Peninsula. With the help of Ben (med student), Jane sent out a questionnaire to newly diagnosed patients with Parkinson's (diagnosed within last 12 months).

Jane received 52 responses that identified areas to be improved upon such as communication, the approach of the Dr and access to information. It was discussed amongst the group how the diagnosis process could be further improved. It was agreed that patients with Parkinson's should feel empowered and supported throughout. At the point of diagnosis, the person should be told immediately when they will be next seeing the nurse specialist. It was agreed that further work is needed alongside clinicians to improve service and experience. Fiona and Emma, the Parkinson's nurse specialists based at Derriford, have recently started their new diagnosis clinics, and will audit their service later in the year. Jane and the project team will review the questionnaire findings in more detail to formulate suggestions for improved practice that could be disseminated across the peninsula.

Parkinson's and exercise

Community lead: Jane Rideout

Started: May 2015                                                             

Status: ongoing

Other contributors: Priyanka Pujara

Aim: setting up an infrastructure that facilitates new provision of exercise classes across Devon and Cornwall

Outcome: Active Devon engaged in class provision; film made to encourage people with Parkinson’s to exercise.

Watch the film on YouTube: Exercise with Parkinson's

Also, please see Jane’s fantastic film aimed on getting older people back to exercise, despite problems: My story - Jane Rideout

Notes:

Jane Rideout has been running exercise classes in her local community (Honiton), specifically tailored for people with Parkinson’s.

Jane has received very positive feedback from users of the service including increased flexibility and confidence.

Active Devon have agreed to fund and facilitate exercise classes for patients with Parkinsons in Honiton, Torbay and Christow. Discussions are in place to source further funding for other areas.

Carer support project

Lead: Vicky Queen

Started: October 2015                                                                    

Status: ongoing

Other contributors: Sue Whipps, Angela Crowell, Sue Whipps, Louise Trout, Jane Rideout, Neil Smart, Nicole Kirbyshire

Aim: identifying carer needs and means of support

Outcome: project just starting; plan for carer support sessions to run alongside exercise classes

Notes: 

Vicky wants to recruit a team to improve the support and information service currently given to carers, especially in more rural areas. It was discussed that clinics could be structured differently so that there is opportunity for the patients with Parkinsons and the carer to talk and discuss issues separately and freely. It was agreed that the service could tap into existing resources rather than duplicate them.

Action: 

Those interested in assisting in the carer support project to contact Vicky Queen (vicky.queen@nhs.net).

Physiotherapy training project

Lead: Sine Rickard

Started: March 15                                                                 

Status: ongoing

Other contributors: Vicky Queen, Katharine Stone, Michael Sherlock, Neil Bowden, Vicki Sheen

Aim: to identify training needs in community physio teams with regard to Parkinson’s and disseminate appropriate training materials

Outcome: baseline audit of training needs being undertaken

Notes:

Sine presented her project aiming to identify and meet the training needs of physiotherapists across the peninsula with regard to Parkinson’s. The project team has identified European guidelines as being the appropriate standard of care to be delivered. The plan is to survey physiotherapy services across the peninsula, with regard to what they offer routinely, compared with the guidelines and then identify training resources which can be uploaded to the PenPEN website.

Action: 

Anyone interested in taking part in the physiotherapy project to contact Sine (sinerickard@blueyonder.co.uk).

Additional upcoming projects

The Community for Research Involvement and Support for People with Parkinson’s (CRISP) Project:

Parkinson’s and clinical research – the CRISP video project on YouTube.

Body Sensor Network project:

Parkinson’s disease is a progressive neurological condition that affects movement and speech. At present there is no cure and little understanding as to why some people develop the condition. One in 500 people in the UK, or around 127,000 individuals, currently have Parkinson’s. Worldwide, it is estimated that 10-20 million people are living with the disease and this number is expected to double by 2030. Many of these cases are undiagnosed and untreated.

One of the ways researchers are hoping to help combat Parkinson’s is by trying to find ways to detect the disease as early as possible, which could prove to be of tremendous significance to patients and clinicians alike.

The technology to be assessed is called the Body Sensor Network (BSN), a system developed over the past several years by Dr John Stein and Dr Newton Howard at the University of Oxford, MIT and the Brain Sciences Foundation. BSN is a system comprised of various body sensors worn on the arms and torso, accompanied by a microphone to record speech patterns.

See the Body Sensor Network project.

Research

There are also some handy links in the world of Parkinson's research:

Charter for Clinical Trials

Charter for Clinical Trials in Parkinson’s from the Cure Parkinson’s Trust – setting standards of practice for those involved in clinical trials for Parkinson’s for potential Parkinson’s study participants and clinicians/researchers.

The Chronic Sorrow Concept

The needs of carers and the concept of 'chronic sorrow' - a link to a research paper from addressing the issue of “chronic sorrow”.

Parkinson’s disease can cause many emotions, including grief and a sense of isolation for both the person with PD and their partner. Such ongoing grief and emotional turmoil can be termed chronic sorrow. The aim of this research is to present accounts of partners’ perspectives, analysed in the context of chronic sorrow theory, to offer health professionals an insight into the impact of non-motor PD symptoms on partners.