NEWS

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.

Kidney Patient Involvement Network (KPIN)

KPIN are a partnership across organisations, charities and academic institutions and welcome all patient and clinician members from across the UK and all backgrounds of kidney care. KPIN are committed to quality public involvement and engagement (PPI/E).

For more details about KPIN and/or to join, visit their website:

Welcome to KPIN - Kidney Patient Involvement Network - Kidney Patient Involvement Network

KPIN are currently looking for people to join their Patient Involvement Group and are working on a project looking at information and education to help slow further kidney damage for people with reduced kidney function to identify what advice and guidance works for who, and where the gaps are in the evidence.

 This is so they can set research recommendations and priorities in collaboration with patients, families and healthcare professionals.

What’s Involved:

1. Attending 5 online meetings until November 2025
2. Providing feedback and ideas to the research team in meetings and via email
3. Meetings will be chaired by Andy, a patient and co-lead of the Kidney Patient Involvement Network (KPIN)

For more information, queries or to submit your interest:

Please email Andy at info@kpin.org.uk

  Click below for 2023 results:

2023 Kidney PREM results | Kidney Care UK

For results for individual kidney units:

PREM | The UK Kidney Association

Help with living costs

The Government has extended the Household Support Fund so that local councils can give grants to people struggling to pay energy bills etc. this winter. If you live in Sheffield you can get more details and apply for the grant by visiting the Sheffield City Council website:

Apply for the Household Support Fund | Sheffield City Council

Research Study on Lupus

Exafield UK (Medical Market Researcers) has been commissioned to conduct a study on Systemic Lupus Erythematosus (SLE) and Lupus Nephritis (LN). As part of this research, they would like to speak with patients who are experiencing severe forms of Lupus.

The research aims to explore how people with severe lupus perceive a potential new therapy called ‘chimeric antigen receptor T cell therapy’ (CAR T-cell therapy).

Study Details:

• 75 minute online interview (laptop/PC required)
• Deadline – End of August

Participants will receive for discussion £75.00 and £10 for providing Confirmation of diagnosis (COD) total £85.00 for completing the research which is payable via BACS or Amazon Voucher.

If you are interested, please complete the screener and questionnaire using the link below, and your eligibility will be confirmed as soon as possible:

https://form.jotform.com/242194186299064

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

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.

The evening was chaired by Dr Jiehan Chong who outlined the aims of World Kidney Day and introduced the speakers.

Dr Syazrah Salam spoke about blood pressure and the importance of knowing your numbers. She recommended checking your blood pressure at home in a relaxed environment using a blood pressure monitor with an arm cuff. The monitor should be purchased from a reputable source such as a pharmacy, or from the British Heart Foundation:

Buy approved Blood Pressure Monitors | British Heart Foundation (bhf.org.uk)

Two readings should be taken a few minutes apart and you should be sitting in comfort with your feet flat on the ground. A reading of over 140 / 90 should be reported to your medical health professional so that treatment can be offered or considered. High blood pressure can lead to many serious conditions such as strokes, heart attacks and vision problems as well as kidney damage.

Amy Nuttall-Allsop, a renal dietitian gave an informative presentation about how to lower salt in your diet. Lots of every day foods such as bread, biscuits, breakfast cereals and cheese contain salt and it is a good idea to check labels for salt content. Many different terms can be used to indicate salt, but basically you need to look at the sodium content. The “traffic sign” labelling system is useful and you should aim to choose foods with green labels. The more processed the food is the more likely it is to contain high amounts of salt.

Dana Holmes, a kidney patient, then told us all about her kidney journey. Her story was honest and moving. She was diagnosed with IgA nephropathy and her kidney function declined fairly rapidly until she was at the stage of needing dialysis. She was determined to take control of her own treatment and did not want her life to revolve around medical issues and so she took up the option of home haemodialysis as soon as she could. It was by no means always straightforward and she had several setbacks and stays in hospital. Then, early in 2024 she got the call saying there was a suitable kidney for her and she had a transplant for which she is very grateful.

Next, Dr Badri Shreshtha told us about his life and work as a kidney transplant surgeon. His presentation can be viewed here:

(PDF) "Kidney Disease - Transplant Surgeon's Perspectives": World Kidney Day Celebration (14/03/2024) (researchgate.net)

The final presentation was by Dr Helen Nye, who used to work in Sheffield and then moved to Kenya. She told us about the difficulties of providing renal care in Kenya and how she would love to offer preventative care but ends up having to give treatment to patients with severe problems brought on by kidney disease. There is a shortage of nephrologists, there being only 41 for a population of over 53 million and Helen is helping to raise money to train a kidney doctor.

Here is a video about the situation:  Omara Trust World Kidney Day 2024 - YouTube

Here is a link to the JustGiving Page:  Train a kidney doctor in Kenya - JustGiving

Dr Chong ended the evening by summing up what World Kidney Day is all about.  He pointed out that Chronic Kidney Disease does not get the attention given to other serious medical conditions and said it is up to all of us to spread the word, to talk about it at every opportunity and to raise issues such as organ donation whenever we can.

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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.

Click here for details.

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)

Video for Living Donors

Sheffield Teaching Hospitals have produced a video with advice for living kidney donors.

Click here to watch

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.

OBITUARIES

Anne Murphy

We were shocked and saddened to hear that Anne Murphy, a Sheffield City Councillor and former Lord Mayor, passed away unexpectedly on 23 December 2022.  She will be greatly missed by all the charities she supported, including SAKA. She was diagnosed with Type 1 diabetes at the age of seven, and this later led to a decline in her kidney function. After a short time on dialysis she was lucky to receive a pancreas and kidney transplant at Manchester Royal Infirmary. Her new pancreas continued to work but the kidney failed in 2015. Fortunately her brother stepped forward to donate one of his kidneys and she had a second successful transplant.

Anne never allowed her health problems to get in her way and was determined to live life to the full, both in her professional and personal life. She pursued a career as a hard working social worker. Wanting to serve her community, she was elected onto the City Council in 2014, and she was Lord Mayor of Sheffield in 2017 to 2018.  One of her fellow Councillors has described her as a “complete force of nature” and commented that the word “no” wasn’t in Anne’s vocabulary. 

Debbie Kerry

We were deeply saddened to hear of the passing of Debbie Kerry in November 2022. Debbie, along with her husband Paul was a long standing supporter of SAKA. Debbie had two kidney transplants, and was very active in the City Group in the days when they did lots of successful fundraising. She also took part in many Transplant Games, beginning at Newcastle in 1993, and won lots of medals over the years.

TRIBUTE TO STAN NUTTALL