SAKA
SAKA is here for you. We help all kidney patients covered by the Sheffield Kidney Institute, along with families and friends.
Feel free to contact us for further information, to make any suggestions for what we could do for kidney patients or if you need any help.
Email:
Phone SAKA Secretary:
07719 787885
SAKA Facebook Group
Patients (and family members, friends, carers etc) who attend the Sheffield Kidney Unit or its satellites are invited to join this small confidential Facebook Group to share news and information.
Click the link below to visit/join:
ShareNEWS
Winter Vaccinations
Don't forget to book you vaccinations for flu and Covid 19 this winter.
To check if you are eligible and to book visit:
Book, change, or cancel a COVID-19 vaccination appointment online - NHS
Visit the NKF shop today to secure your favorite festive items
Each purchase you make helps the NKF support another individual affected by kidney disease.
All cards are 100% biodegradable, making them an eco-friendly choice.
Christmas card prices from £3.50 for a pack of ten cards are complete with envelopes.The collection features many beautiful festive designs, including "Santa's Little Helpers" and "Snowman's Party" cards currently being our most popular and selling out very quickly!
In addition to cards, the NKF 2026 calendar is perfect for keeping track of all your important appointments, along with a selection of gift wrap and money wallets, plus grow your own Christmas tree seeds!
Click this linkfor details and to place your order:
Christmas 2025 | National Kidney Federation
FUNDRAISING
YORKSHIRE 3 PEAKS
Well done to Lloyd Bennett for completing the 3 Peaks Challenge to raise money for SAKA. Lloyd's wife, Rachel, received a kidney transplant in 2020 and now competes in the British Transplant Games.
The Games will take place in Sheffield in 2026, and so we are keen to raise as much money as possible.
If you would like to add to Lloyd's sponsorship total please click the link to his JustGiving Page:
Lloyd Bennett is fundraising for SAKA
To celebrate Organ Donation Week 2025 the Sheffield Teaching Hospitals website included a feature on transplant surgeon Dr Badri Shrestha:
Transplant surgeon reflects on remarkable career - Sheffield Teaching Hospital
The annual survey for kidney patients is now open.
The Kidney Patient Reported Experience Measure (Kidney PREM) runs every year and asks you about a range of important topics, so that your team can understand how they are performing in offering you kidney care.
The survey is open until 10 November. Click the link below to take part
Kidney Patient Reported Experience Measure (PREM) | Kidney Care UK
Research study on
Autosomal dominant polycystic kidney disease (ADPKD)
Exafield is conducting a research study focused on Autosomal dominant polycystic kidney disease (ADPKD).
The goal is to gain a deeper understanding of the signs, symptoms, and the profound impact of living with this condition.
They are seeking patients living with Autosomal dominant polycystic kidney disease who are willing to share their invaluable experiences. This includes discussing their current treatments and their needs concerning potential new therapies. Their unique perspective is crucial in helping us advance healthcare.
The study is designed in two phases:
- Phase 1: 60-minute in-depth video interview Participants will be invited to a 60-minute one-on-one interview.
- Phase 2: week-long video diary, where patients will self-film on their mobile phones.Participants will join a secure research app (note it is not ‘live’ research) for approximately one week, dedicating about 45 minutes in total. The video diary tasks take the form of written instructions which will be programmed into a secure research app, on different topics around your ADPKD experience.
In exchange for their valuable time, the participant will receive £100 for taking part in both phases, which is payable as BACS, PayPal or Amazon Voucher.
PLEASE CONTACT SAKA if you are eligible and interested in participating in this research. SAKA will get a donation from Exafield if you are chosen.
email: contact@saka.org.uk
Kidney Transplants and ADPKD
The PKD website has an article with updated information on kidney transplantation in PKD. This has been
co-written by Mr Badri Man Shrestha, Consultant Transplant Surgeon at Sheffield Teaching Hospitals NHS Trust.
Click this link for detals:
New Kidney Care Glossary
Find out more about kidneys and kidney disease, from A to Z. Understand more about some of the medical words you may hear or read relating to kidney conditions and get links to more in-depth information.
News from NKF
Sign the letter to the Prime Minister
Following the publication of the 10 year plan for the NHS (see NKF reaction below), everyone in the kidney community is asked to sign an open letter to the Prime Minister urging the Governemnt to set up a national strategy on kidney disease:
Sign Our Letter to the Prime Minister - Your Voice Matters | National Kidney Federation
NKF's reaction to 10 year plan for NHS
The Government has published a 10 year health plan for England, "Fit for the future".
Click to see NKF's Reaction:
NKF reaction to the NHS 10-Year Health Plan for England | National Kidney Federation
Home Dialysis
We are very pleased to announce the release of A MANIFESTO FOR INCREASING HOME DIALYSIS IN ENGLAND FOR THE BENEFIT OF PATIENTS AND THE NHS.
This manifesto, in the form of a report with recommendations that has been prepared for the Secretary of State for Health and Social Care and the kidney community following a five-year campaign. This is a culmination of the Home Dialysis Summit hosted by the All-Party Parliamentary Kidney Group (APPKG) in May 2025.
This report is the result of a five-year campaign instigated, created and contributed to by the National Kidney Federation, colleagues from across the NHS and people living with kidney disease from across the country. The report is the final output from the campaign, but it is not the end of the work. The NKF and the APPKG will continue this work over the coming years in full recognition of the impact on patients’ lives and the significant fiscal benefit.
You can view the report on the NKF website https://www.kidney.org.uk/home-dialysis-campaign-manifesto
OBITUARY
May 2025: We are all shocked and saddened to hear about the passing of Paul Johnson. a well known and active member of the local kidney community and a former SAKA committee member.
Here are the details for anyone who knew Paul and who would like to pay their respects:
Celebration of Life for Paul Johnson,Tuesday 17th June 10:50am Ardsley Crematorium, Doncaster Road, Barnsley, S71 5EH. There will be a collection for SAKA.
Reception for Paul Johnson, 12-3pm, The Strafford Arms, Stainborough, 10 Park Drive, S75 3EW
Please don't feel the need to wear black.
Research participants wanted
My name is Jun Wang, and I am a PhD student at the Information School, University of Sheffield. I am currently conducting a research study exploring the information needs and broader challenges faced by individuals living with chronic kidney disease (CKD), particularly in managing their condition alongside other coexisting health issues.
As part of this study, I am conducting semi-structured interviews with people living with CKD or their carers. These interviews (approximately 40–60 minutes) aim to understand how individuals seek, access, and use information related to their health, as well as the barriers they may encounter. All interviews will be scheduled flexibly to suit participants' availability.
Participants who take part in an interview will receive a £20 voucher gift card as a token of appreciation for their time and contribution.
The study has received ethical approval from the University of Sheffield, and I will be happy to provide a Participant Information Sheet and Consent Form to anyone who expresses interest in taking part.
I would be grateful if you could consider sharing this invitation through your website, newsletter, or bulletin to help reach potential participants. If you require any further details or materials, I would be happy to provide them.
PREM is the Kidney Patients Reported Experience Measure. Each year kidney patients are asked to take part in a survey about their care and results are collated in order to improve renal care across the country.
Football Team uses
SAKA logo
The Head Coach of Kiveton Under 18's Mens Team is a dialysis patient at Sheffield and an ex member of the Sheffield Adult Transplant Games Team. The team now has the SAKA logo on their shirts.
We wish them all the best in their upcoming matches.
Bus
advertising campaign
to coincide with
World Kidney Day
SAKA has sponsored a bus advertising campaign to promote organ donation. These adverts will be on several bus routes in Sheffield, Rotherham, Barnsley and North East Derbyshire for four weeks.
One has been spotted by David, the SAKA Chair. Let us know if you spot any - tell us where and when (and send in a photo if you can): email contact@saka.org.uk
Message asking for Research Participants
Hello, our names are Rachel Kettle, Hema Chaplin and Paula Ormandy and we are health services researchers from the University of Salford working on this project about information and education for early-stage chronic kidney disease.
Our project is about helping patients with early-stage chronic kidney disease and their families get better information and education. The research has two parts: first, we look at all the evidence to see what works best; second, we talk to patients and families to hear their ideas and experiences. We’re inviting you to take part in the second part - sharing your thoughts with us.
We would like to learn from people with kidney disease, high blood pressure or diabetes, and their families, about what information and education interventions they have received through completing a survey.
The survey will take roughly 30-40 minutes to complete. It can be completed on a smartphone, tablet, laptop or computer that has internet access.
Please see the information below or if you would prefer to watch a video summary of this information, please click here.
Are you or do you know someone who is aged 16-30 looking for a safe space to connect with others about kidney disease?
We invite you to join a special community that could make a significant difference in your journey with kidney disease. We have created a private Facebook group specifically for young adults navigating the challenges of kidney disease, and we would love for you to be a part of it.
The NKF Peer Support Service has now expanded!
The Peer Support Service is a safe space where people can connect with our ‘peers’ to converse about lived experiences and they are there to support you. This might be
over the phone, online, or in person.
The Peer Support Service has now expanded and is open to
all
individuals
who have kidney disease, Family
members, partners or carers of somebody with kidney disease
The service provides an opportunity for all individuals to have a one-to-one chat with a fully trained
peer supporter who may have similar life experiences and lifestyle stories. Whatever your experience or query about kidney disease, we can connect you with one of our peer
supporters.
For more information on the NKF Peer Support Service visit: www.kidney.org.uk/peer-support
Whatever your query, if you would like to contact the NKF Peer Support Service, call our Freephone Helpline on
0800 169 0936
or email helpline@kidney.org.uk.
Our lines are open from 08:30am - 5:00pm Monday to Thursday and Friday 08:30am -
12:30pm.
Breathe Easy Sheffield is a unique new non-profit events series. If you enjoy socialising, but feel cautious since the pandemic about crowded and indoor spaces - this is for you.
Many people are still worried about the risks of attending in-person events, especially people who are clinically vulnerable to covid-19 and other infectious diseases.
Breathe Easy Sheffield is a new eclectic series of social and cultural events, designed with enhanced safety measures in place to reduce transmission risk.
Booking is now open for autumn/winter events, including cinema, life drawing, informal socials and festive crafting.
Want to find out more? Join the mailing list bit.ly/breathe-easy-signup
or mailto:breathe.easy.sheff@gmail.com
Understanding results of blood and urine tests
All kidney patients have regular blood and urine tests. Health care professionals use the results to monitor your kidney function and to check on other aspects of your health.
To help you understand what they are checking for and what the results mean Kidney Care have produced a pateint information guide.
News from Patients Know Best / Renal Registry
Here is a message for renal patients:
Dear PKB users.
Sheffield will be the first eMED site to switch over to Real-Time reporting. this is when your blood results are forwarded to the Renal Registry immediately and not after 12 months. This is something that has been done for some time.
You can actually see what is reported on https://ukkidney.org/about-us/who-we-are/uk-renal-registry
|
ukkidney.org
|
Have a look. It tells you about SKI and how it compares with other units' metrics. It's easy to read and gives lots of interesting data etc.
When all parties are happy with the data, the system will switch to Real-Time reporting. This will affect the PKB system for at least 48 hours. UKKA will post information on their social media feeds to inform patients. We will put a message in the library part of PKB and flyers in outpatients and HD areas.
We will inform everyone once we have a date for the switchover. This will allow data to be live in the registry and enhance research into Kidney Disease.
Kidney Care UK has a YouTube channel, with videos covering patient stories, kidney friendly recipes and expert renal advice.
To subscribe go to: Kidney Care UK - About Us (youtube.com)
Artificial Intelligence Tool
Profesor Albert Ong is now using an AI tool is his specialist kidney clinic
To read the details, see the article on the Sheffield Teaching Hospitals website:
Introducing Kidney Care UK’s FREE online PIP Helper
PIP is a benefit support awarded by the Department for Work and Pensions (DWP) to people who are eligible, to help them with living costs, but applying for it can be a confusing and long process. Kidney Care UK have launched a new online helper to guide you through :
Patients as Educators
Could you help medical students to learn from real patients ?
The Clinical Skills Centre of the Sheffield University Medical School helps to train would-be medics of various sorts by introducing them to real patients with a variety of conditions. It is valuable to the students to be able to talk to patients and carry out relavent physical examinations. Many participants in the scheme feel that this is an easy way of 'giving something back'.
They would particularly welcome more kidney patients.
For more details visit the website:
Patients as Educators | Medicine and Population Health | The University of Sheffield
Guidance on Shingles Vaccination
All those eligible should be offered the non-live vaccine Shingrix as part of the UK shingles vaccination programme which aims to protect those individuals most at risk from shingles and its complications.
The British Transplant Society and UK Kidney Association have produced guidelines on the shingles vaccination.
Kidney Beam is now fully funded for kidney patients in all parts of England.
This is an online service helping kidney patients take care of their physical and mental health. It offers you a way to improve your physical activity in your own home.
Click below for full details about the service and how to sign up
In September 2023 two experienced consultant nephrologists from University Hospitals Coventry and Warwickshire set up a new website for CKD patients and their families. It contains a wealth of information on how kidneys work, treatments for kidney disease etc. and is well worth looking at.
About - Chronic Kidney Disease Explained (ckdexplained.co.uk)
"My New Kidney" book for children
SAKA gave a grant to Kidney Research UK to help fund the publication of a book to be given to children awaiting kidney transplants.The playful, interactive books show what to expect in the lead up to and after their operation using a fun approach to alleviate anxiety. They are designed to encourage the recipients to colour, comment, write questions, draw and stick things in – creating important engagement so families can explore the transplant process together.
SAKA Chair, David Marshall, went to Nottingham to the handover of the books to the renal team and one of the specialists said:
‘The moment I saw the format of the My New Kidney book I knew it was exactly what we needed as a team in order to support our children and young people when embarking on the prospect of having a kidney transplant. The fun, child focused, and interactive format is just perfect. More importantly this will be a great tool for parents to use with their children’.
NHS App
You can download the NHS App or open the NHS website to access a range of NHS services, including your GP health records.
For details about how to use these services visit this section of the NHS website:
About the NHS App - NHS (www.nhs.uk)
Charity Clothes Collection
You can now support Kidney Care UK by recycling your unwanted clothes and other items. The process is easy as they come to your door to collect your donations,
For details of how to use the free collection service visit:
Video for Living Donors
Sheffield Teaching Hospitals have produced a video with advice for living kidney donors.
Book a free counselling appointment with Kidney Care UK
Kidney Care UK have re-launched their free counselling service for renal patients, carers, families and loved ones.
For details click here:
The National Kidney Federation have partnered with ITN Business to produce ‘Understanding Kidney Health’, a news-style programme featuring clinicians, stories of patients, the loved ones who care for them, plus highlighting vital work being done by the National Kidney Federation.
For more details and to watch the programmes Click here.
Reimbursement of additional utility costs for home dialysis
Click here to visit the NKF Website for full details
The NKF alongside other kidney charities and professional bodies have been working with the UKKA Kidney Patient Safety Committee.
Together they have produced a toolkit to support reimbursement of additional utility costs for home dialysis.
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