Participating Project

Project information

NeST Community Networking

Nephrotic Syndrome is a rare kidney disease and can be life threatening. We wish to raise awareness further as it can be easily misdiagnosed. Hold education days for both families and medics ; give the opportunity to meet up as many are isolated coping with this condition and extend support groups.

March 2018 - April 2019

Charity information: Nephrotic Syndrome Trust (NeST)

Nephrotic Syndrome Trust (NeST) logo
  • Need

    Need

    The main aim of our project is to solve the lack of information and increase support for individuals and their carers and families.

    We currently have nine support groups in the UK,this project will also encourage more support groups to grow.

    Solution

    It will engage medical staff by educating the first symptoms of Nephrotic Syndrome and it's treatments.The project will help raise awareness as there is still a lack of information available. Also, by bringing families and sufferers together it will mean an end to isolation coping with this condition and many will be able to share their experiences coping with this condition.

  • Aims

    Aim 1

    Educate medics and patients,carers and families.

    Activities

    » By holding education days inviting medical staff and those who have nephrotic Syndrome and their families.

    By requesting all attendee's fill out a feedback sheet at the end of meetings asking what most useful topics discussed and if any improvements could be made for future meetings.


    Aim 2

    To help support patients to feel more confident and knowledgable about their condition.

    Activities

    » By holding education days inviting medical staff and those who have Nephrotic Syndrome and their families.

    By requesting all attendee's fill out a feedback sheet at meetings. Ask if all questions were adequately answered and enquire were any area's which they still felt less confident


  • Impact

    Impact

    The project will empower more patients and families to be more able to manage their condition. It will be a valuable time meeting other sufferers and their familes sharing their experiences,knowledge and an opportunity to form lasting friendships of support. At the meetings patients and families awill be able to understand in more depth about Nephrotic Syndrome,current research to find a cure. Medical professionals will learn from guest speakers, but also from the patient perspective too.

    Risk

    The main risks to consider making sure venue can adequately seat all attendee's. Knowing from experience numbers can fluctuate either way, but always have managed to have find a suitable meeting/conference room either on a hospital site or nearby. Make sure meetings are well advertised on our charity website,renal clinics and wards and relavant kidney literature magazines and inform renal consultants. A speaker may not be able to attend at late notice so need to identify others to stand in.

    Reporting

    I would be very happy to report back on the success of the meetings. I would initially do this by letter and then email photographs and any video footage of meetings. I would ensure donors logo's/names would be on slides and any programmes. Publish meetings in relavant magazines with donors names.

  • Budget

    Budget - Project Cost: £8,000

    Loading graph....
      Amount Heading Description
      £2,500 Refreshments Holding four education/community patient days.
      £3,000 Speakers Travelling expenses
      £1,000 Speakers Accomodation expenses
      £500 Advertising Programmes/flyers
      £1,000 Venue Free venue's would be sought but if needed to find a more suitable one or two meeting rooms.
  • Background

    Location

    The location of project meeting places : -

    I. Milton Keynes

    2. Leeds

    3. Edinburgh

    4. Southampton

    These are new places to hold meetings and easily accessible for different area's of the country. Previous meetings have been held in Bristol,London,Birmingham and Manchester.

    Beneficiaries

    It is hoped the project will encourage new families to attend the education meetings being in new area's. Hopefully consultants from renal wards & clinics,GP's will attend and contribute to the meetings and learn up to date research and treatment methods.The meetings will be inclusive of both children and adults as well as child and adult clinicians. New friendships between patients could potentially be formed giving each other long term support and possibly new local NeST support groups born.

  • Why Us?

    Why Us?

    Our charity is best placed because we are the only dedicated charity for all those suffering from Nephrotic Syndrome. We focus on only those with Nephrotic Syndrome giving individuals and their families support and information. We also fundraise for the research team at Bristol who are worldleaders researching into Nephrotic Syndrome and are always willing to share their research at conferences and meetings. My trustee's and I know many clinicians who are willing to help us too

    Read more about the Charity running this project.

    People

    Wendy Cook (Mother Of Child With Nephrotic Syndrome)

    My role is director and fundraising coordinator and I'm employed four days a week,part time. I have took the lead building the charity since 2005.

    Volunteer - Louise Lukins (Mother Of Child With Nephrotic Syndrome).

    Newly appointed trustee and active fundraiser. Louise will assist me to arrange meetings and input.

    Gemma Bint (Mother Of Child With Nephrotic Syndrome).

    Newly appointed trustee and active fundraiser. Louise will assist me to arrange meetings and input.

    Professor Moin Saleem

    Bristol Paedatric consultant and lead consultant researcher at Bristol laboratories. Advise and help liase with guest speakers for meetings.

Over the years I have seen my son endure pain operations scarring his body.His life has been in danger at least twice from the complications of Nephrotic Syndrome. Transplant was our last hope but tragically and cruelly Nephrotic Syndrome returned. Please help me to support others with NS

Wendy Cook - my son was diagnosed with Nephrotic Syndrome age five, now twenty-one. No remission,not even a transplant has been the answer