Blog

17th June Neele Dellschaft and Sue Stewart

On Thursday 13th June, Sue Stewart attended a meeting at the  B&CR offices, Whitechapel. She met Neele Dellscaft, Postdoctoral Researcher of St. Peter Mansfield Imaging Centre, Nottingham University and Deborah Gilbert, CEO of B&CR. The meeting was to discuss protocol for the MRI research study, PORT have funded, to ensure the project is patient friendly. This proved to be a very successful meeting, and any concerns were addressed positively.

PORT are proud to be funding 3 projects this year at a cost of £149,544. To fund this research PORT is using reserve funds. Therefore fundraising over the next 2 years is even more important, so please do support our charity.

The first project involves harnessing MRI for the diagnosis of CIPO funded by PORT. PORT are funding £49,554 for this study and will build on previous research from The Nottingham Gastrointestinal Magnetic Resonance Imaging group and colleagues at University College and Queen Mary University of London. Using MRI should allow CIPO to be diagnosed by a test that is accessible and sensitive.

Additionally, PORT is funding £50,000 to study the potential of developing neurons for tissue repair. The team is being led by Professor Joe Martin, Professor of Pathology at Queen Mary, University of London. The potential of developing a therapy that could seed and migrate new functioning nerve cells could have a significant impact on quality of life, and potentially be a life line for some of the most poorly.

Finally, PORT is funding a study led by Professor Gareth Sanger, which will study a new approach to gastroparesis and nausea. This study in human tissue will help to pin point this mechanism, paving the way to the development of new treatments to help patients who suffer with this debilitating symptom.

To find out more about the 3 research projects PORT are funding this year, please go to our research section.


Pseudo Obstruction Research Trust (PORT) reg 1114217

Safeguarding Policy – August 2018

This policy applies to all staff, trustee’s, and volunteer workers, or anyone working on behalf of Pseudo Obstruction research Trust (referred to as PORT within this document).

The purpose of this policy is to,

Protect children, young people, and their parents, who receive any services from PORT.

Protect adults and vulnerable adults who receive any services from PORT.

To provide staff and volunteers with overarching principles that guide our approach to safeguarding.

PORT believes that a child young person adult or vulnerable adult should never experience abuse of any kind. We have a responsibility to promote the welfare of all and to keep them safe. We are committed to practise in a way that protects them.

Legal Framework

This policy has been drawn up on the basis of law and guidance that seeks to protect children and adults namely:

Data Protection act 1998

Human Rights Act 1998

Sexual Offences Act 2003

Safeguarding Vulnerable Groups Act 2006

Protection of Freedoms Act 2012

Children and Families Act 2014

Special Educational Needs and Disability (SEND) code of practice, 0 to 25 years, statutory guidance for organisations which work with and support children, and young people who have special educational needs or disabilities HM Government 2014.

Information sharing Advice for practitioners providing safeguarding services to children young people, parents, adults and carers. HM Government 2015.

Working together to safeguarding children a guide to inter agency working to safeguard and promote the welfare of children HM Government 2015.

We recognise that

The welfare of the child is paramount as enshrined in the Childrens Act 1989.

All children regardless of age, disability, gender assignment, race, religion, or belief, sex or sexual orientation.

Some children are additionally vulnerable because of the impact of previous experiences, their level of dependency, communications needs or other issues.

Working in partnership with children young people, their parents, carers and other agencies is essential in promoting young peoples welfare.

We will seek to keep children and young people safe by;

Valuing them listening to them with respect.

Appointing a designated Safeguarding officer and a deputy.

Adopting child protection and safeguarding policies through procedures and a code of conduct for staff and volunteers.

Providing effective management for staff and volunteers through supervision support and training.

Recruiting and storing information professionally and securely. Sharing information about safeguarding and good practice with children and families staff and volunteers via e mail, and/or one to one discussions.

Using our safeguarding procedures to share concerns and relevant information with agencies who need to know, and involving children, young people, parents, families, and carers appropriately.

Using procedures to manage any allegations against staff and volunteers appropriately.

Creating and maintaining an Anti-Bullying environment and ensuring that we have a policy and procedure to help us deal effectively with any bullying that does arise.

Ensuring we have effective complaints and whistleblowing measures in place.

Contact details

Designated Safeguarding officer (DSO)

Sue Stewart 07939 885699 / sue_stewart_pseudo@hotmail.co.uk

Deputy DSO

Rebecca Stanier 07903 664386 / Rebeccamstanier@outlook.com

CEOP

www.ceop.police.uk

Zander Fagerson is a Scottish International rugby player who plays for Glasgow warriors. Zander made his debut for Scotland in the six nations match against England at Murrayfield on 6th February 2016. Zander has supported PORT to date by donating signed rugby sportswear for auction. Zander had never heard of the illness Chronic Intestinal Pseudo Obstruction (CIPO) until he met Louise MacDonald, and her mum Carole who told Zander there is no cure. ‘For me personally I think that’s unacceptable with the level of expertise in medicine. To then see Louise at the rugby, and how happy she was there, supporting Glasgow and Scotland, forgetting about her condition and enjoying the day really got to me. This is why I am proud to become a Patron/Ambassador for PORT. I may not be able to find a cure, but if I can raise a bit of awareness or get a few more sufferers to a rugby game and try and give them some relief , however small, I would feel I was making a difference.

 

Zander Fakerson 2Zander Fakerson

Keep on Walking! 2018 TEAM PORT for the Southend Colourthon 7 th July 2018

All entrants from Team PORT completed the Southend Colourthon walk this year. Everyone completed their walk at different times but it was the taking part that was most important to them all, a fun event, with a great Team spirit. Chairperson and Team leader Sue Stewart mustered a team of 23 walkers to take part on behalf of PORT. This gave the charity a good level of entrants compared to other charities, even some that are well known fielded a lesser number of entrants. For Sue herself this was her 6 th Colourthon half marathon, supported by husband Barry Stewart (4th time) and daughters, Jessica Roskilly-Stewart, and Rebecca Stanier both 3rd time. Friends of PORT Clare Mitchell 2nd time, Team Debbie Callaghan 2nd time, and for their 1st attempt were Team Joe Smiles Team, Team Kaylie Finch’s Earl Grey Pub Team, and lastly Sam Smith who only signed up to walk the day before the event.

As at the time of writing this £11,451 has now been raised from this event for PORT to fund research so a massive thanks to all those who took part, and their sponsors. An incredible amount big thank you from Sue, well done to all.

If we are able to have more support next year who knows what we can attain in sponsorship, so get the word out to friends, and family to become PORT walkers in July 2019!

The event is normally held on the first Saturday in July so pencil it in on your 2019 calendar now! Best wishes TEAM PORT – SupPORT the cause.

 

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Our Trustee from the North Kilian and his wife Lindsey Fitzsimmons-Wilson hosted a Black Tie Ball at Blackburn Rovers Football Club .

They were joined by family, friends and other trustees from up and down the country and raised a massive £16,200!!

They also organised a little surprise for Head Trustee Sonia Frost who was greeted at the event by the Eddie Stobart Truck that is named after her daughter Emily Jasmine Frost.

a BIG Thankyou to everyone that attended, and that bought raffle tickets and auction items on the night.

#supPORTthecause !!!!!!!

 

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A Big Thank you to Finley Fitzsimmons-Wilson, age 7 from Longridge (pictured right)

He took part in the Hero Assault Challenge, Preston alongside his Mummy Natalie and raised a massive £500 for PORT Charity

Finn completed this challenge especially for his older cousin Charlie Fitzsimmons-Wilson, Age 9 (pictured left) who suffers from Pseudo Obstruction.

Thanks for supPORTing PORT!!!

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For all that have never seen it here’s a clip of the Eddie Stobart truck that PORT had named after our Pseudo Angel Emily Jasmine.

We were given this opportunity a few years back and PORT raised over £600 from donations from our followers in Emily’s Memory.

 

A BIG THANKYOU to Paul at Foxley Film for producing this amazing video ‘This is Charlies Day” to help raise awareness. #supPORTthecause #pseudoobstructionresearchtrust #PORT