And we’re at @BestPracticeUK in London today and tomorrow, sharing info on our #personcentredcare #emotionalhealth and #traumainformedpractice which includes our latest newsletter

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Understanding how #fatigue arises & what you may be able to offer in supporting a person experiencing the consequences of fatigue is vitally important for a world of more #personcentredcare approaches in #neuro #rehab @communityneuro. Pls help if you can, to draw attention to 👇

Could this also have implications for the #gutbrain connection given significance & relevance of insulin resistance in the brain & a role in increasing risk of #Parkinsons @communityneuro @ParkinsonsUK @CureParkinsonsT @UCCpsychiatry @MarkIMardell @ParkinsonDotOrg @jonny_acheson

When we become more focused on #personcentredcare then #rehab #recovery #qualityoflife becomes a focus of care after #physical #emotional #trauma @rehabresearchuk @editorNRTimes @TROOP_PPI @BSPRM_UK @ORehabAlliance @ACNRjournal @IntlSportsRehab @derickwaderehab @theRCOT @RCSLT

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Latest Activities

Delivering more person-centred neuroscience services (in a van)!

P-CNS recently visited Oxford University to be part of a meeting to discuss the creation of a new more person-centred neurosciences education initiative, to tackle the phenomenon of Neurophobia

It was data from a large survey of people who had experienced a life-impacting event or news, run in 2020, and published in the Eur J of Integrative Med  in 2021, that lead he P-CNS to better understand the term “person-centred“. Since that moment the P-CNS has been working to help raise awareness and support the delivery of more person-centred, trauma-informed services, and to join forces with other important organisation to begin tackling “Neurophobia“.    

Through 2024 we plan to continue that work, through our various activities which includes:

Our attendance at Best Practice London, 28th and 29th Feb, which you can read about from here. And if you wish to attend, then the organisers have set up this link for us,

We will be attending Neuroconvention, with the van on the 20th and 21st of March, and holding a session entitled: Braincare and Living in the Fasting Lane. If you wish to register, please use this link, as it helps the organisers to know where the bookings come from. 

Our attendance with a poster at the conference for the Society for Research in Rehabilitation. Our poster “Providing a more person-centred approach to neurorehabilitation: The value & impact of healthcare professionals who have heard life-altering medical news” will illustrate results described in this abstract

Then on the 15th and 16th of May, we will be at the Primary Care Show, and Dr Jonny Acheson, Dr Alistair Church, and Dr Nassif Mansour will be exploring a number of practical diagnostic and management issues. This will include discussion to explore the significance of the thoughts and emotions of health professionals diagnosed with the likes of Parkinson’s and Migraine.

Neurotalk

These are short 10 min excerpts from conversations with people living with a neurological condition, held on online. In the latest Neurotalk, founder and P-CNS Exec Director, Neil Bindemann, talks with stroke survivor, Paula Leask, who is now a community support coordinator for Chest Heart and Stroke Scotland. In this episode Paula shares with Neil, the impact of 4 words her doctor said to her, that empowered her to travel a pathway to a comprehensive recovery.
 
It is a powerful example of why the nature of words we hear really matter, including those words we can hear when we are thinking, and those are words that can have significant ramifications for a person’s mental and physical health, arising out of a person’s emotional health. You can watch it from here.
 

To read a selection of short summaries of key research papers that highlight the significance of the foods we eat and how stress impacts the success of a rehab programme after a brain injury, click here.

P-CNS Exec Director Neil Bindemann & Lifestyle Health Foundation Director Damon to share how their dogs have contributed to re-energising their lives with both recently seeing very encouraging brain tumour MRI scan results.

The first of these evening events is scheduled for Wed 21 Feb at the Tonbridge Old Firestation, to support and fundraise for the Neurocafe Tonbridge. Tickets are £20 and available via Eventdex booking page and includes a selection of canapés throughout the evening and a glass of wine or soft drink.  

Launching in April 2023, the Tonbridge Neurocafe is place and space for people living in the Tonbridge area, touched by a neuro condition to come together, currently once a month. It is a safe and friendly space to meet others, give support and receive support. The main aim is to bring a community of people together who can encourage (within the group) a creative mindset, with the hope that they transform a life-impacting situation into now that offers a sense of hope, for them and the wider community.  To learn more leave your details with us, if you want to set up a Neurocafe in your ares, use the form found here

The significance of emotions in delivering person-centred care

In this presentation, given at Guidelines Live in Nov 2021, you will here how the P-CNS is learning through lived experiences to support a more person-centred care approach to the deliver of neuroscience services.

Watch now

Help with Sleep – Top tips

We have added a selection of short videos that provide a number of top tips that were shared during a “Sleep Question Time” session run during the height of the COVID pandemic. The panel of healthcare professionals with an keen interest in sleep, both from primary and secondary care came together to share their knowledge of sleep and brought to the online Zoom webinar a combination of both personal and professional experience. The panel included sleep consultant, Dr Michael Farquhar, from Evelina London. To learn more about this series of video click on ‘Watch now’ or select the Sleep videos from the drop down from the ‘Resources’ menu option.

Watch now

Complex Neuro in the Community.

Managing Complex Neurological Conditions in the Community was the topic of an event we held back in 2019. To access more information about the content of the conference and to watch  the talks please use the “Click Here” button.

Click Here

ebrain

ebrain, run by the Joint Neurosciences Council, represents the largest, most comprehensive web-based training multimedia facility in clinical neurosciences to support both training and Continuous Professional Development for those working in relevant fields. Get free access by joining the P-CNS.

Click Here

Neurodigest is a growing UK-based magazine, created by P-CNS in partnership with ACNR, with the aim of providing a central resource to keep health professionals up to date with news and reviews that reflect the latest Brain-Gut science and research.

Our main editor is Gerard Clarke is a Professor of Neurobehavioural Science in the Department of Psychiatry and Neurobehavioural Science, and a Principal Investigator in APC Microbiome Ireland at University College Cork.

Who has the authority to write or say that a neuro condition ‘is’ progressive?

“Neither”, according to P-CNS Exec Director, Neil Bindemann, who explains, especially when a person or service is providing, or plans to provide, more person-centred care. He goes on to explain that perhaps more significantly, it is also neither if the service provider wish the person to have hope, and for them to receive a standard of care that empowers them “to live their best life.”

Why that should be the case, is explained by Neil, in a short article in which he makes reference to two contrasting statements written about Type 2 Diabetes. These are two statement that were published in two highly respected medical journals, over 20 years apart. You can read those statements and his very short article from this blog post

The P-CNS is working in partnership with the Lifestyle Health Foundation to run an important research project. The main objective is to collect key insights to better understand how we can support and help to deliver more person-centred care services. Our focus is on people living with a neuro diagnoses, such as ADHD, Brain Tumours, Epilepsy, Migraine, MND, Multiple Sclerosis and Parkinson’s. 
 
To contribute to this important project, we would like you to answer a few questions, at https://uk.surveymonkey.com/r/FRLSQDW
 
Please share this link or this website page with anyone who you know can help us with this project and can answer the questions.

Braincare 2024: Learning through trauma-informed experiences

July 8th, Edgbaston Cricket Stadium, Birmingham

People from across the UK, who have experienced life-impacting medical news, are being invited by both the P-CNS and the Lifestyle Health Foundation to coming together in July. The objective is to encourage more learning through listening to trauma-informed experiences, to call for a radical rethink concerning the way pharmaceutical drugs are prescribed and deprescribed to optimise the management of the mental and physical wellbeing of people living with a brain and mind related conditions. A further aim it to explore ways to address the syndrome of neurophobia, which you can learn about from this paper.

To be part of this day or to simply register interest in receiving further details of this important event, which is to be chaired by P-CNS steering committee member and Consultant Neuropsychiatrist at Brain and Mind, Dr Mike Dilley, leave your details with us here.

Register interest

Person-Centred Care Thoughts

Members of the new Person-Centred Neurosciences Steering Committee contributed to the writing of this paper. The aim of the paper was to offer a unique window into what it’s like to hear very challenging news, written with health professionals who have had to hear the news themselves! Click on the button below to read the paper.

Read the paper

recoveriX Neurotechnology is a non-invasive brain-computer interfaces (BCIs)-based rehabilitation system to train upper or lower extremities of patients who experience motor impairments. It is currently used in hospitals, clinics and rehabilitation centers worldwide to treat stroke and MS patients. To learn more about recoveriX and g-tec medical engineering, our latest corporate partner, please visit our Partnerships page.

eQOL – Epilepsy Quality of Life

eQOL recognised the significance of lived experiences and has been designed for you to share information and resources to support families and individuals living through epilepsy, in the hope it will:

  1. Encourage discussion that helps ensure equal access to the best treatment options
  2. Stimulate thoughts and ideas from both healthcare professionals and patients
  3. Help raise awareness that people cope with epilepsy in different ways
  4. Provide a place where you are an equal partner in stimulating ideas for epilepsy research
Visit

Ketobakery.co.uk – supporting the person-centred work of the P-CNS

Ketobakery.co.uk, which was established at the end of 2022, is an online service set up to provide quick and simple approaches to eat foods that support people who wish to follow a ketogenic lifestyle, to balance or rebalance their health and wellbeing.

All profits from the sales going to help fund P-CNS work in collaboration with the Lifestyle Health Foundation and delivery person-centred lifestyle health services, such as the new Neurocafe in Tonbridge. To read the story behind the Ketobakery.co.uk and to start enjoying the health benefits associated with baking ketostyle, please click on the www.ketobakery.co.uk  window.

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Resources

We have an array of resources available from our website, including videos from P-CNS neurology studies days, and presentations from a workshop on Parkinson’s lead by Dr Tom Britton and another on Headaches lead by Dr Andy Dowson. To access these plus e-brain please register and pay the one off joining fee of £45

Click Here
Neurosymptoms – video guides

These are information, educational tools and shared learning video guides for three common neurological conditions; headache, dizzy spells, faints and fits have been developed to support GPs in managing the majority of patients locally rather than refer them to a specialist as an outpatient.

Click Here

On Facebook

As well as out P-CNS Facebook page, we have set up new Facebook Group for people to come together and share living experiences to help everyone live their best life, after receiving live-altering neurological news. If you want to become part of that community please come and join us on Facebook, where we also have a page where we aim to keep the Facebook community updated with our activities.  

Find and like our Facebook page.