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
PREM (Patient Reported Experience Measure) is an annual survey of kidney patients.
The 2023 results are out now. Click below:
2023 Kidney PREM results | Kidney Care UK
For results for individual kidney units:
PREM | The UK Kidney Association
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
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ukkidney.org
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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)
Report on World Kidney Day 2024
SAKA joined forces with the renal research team at Sheffield Teaching Hospitals to put on an online evening of presentations.
Thank you to all of the speakers, who were informative and thought provoking.
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:
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.
Have you had a kidney transplant in the last 2 years?
If so you may like to take part in some research
Newcastle University are running a study funded by NHS Blood and Transplant to design a way of measuring patient experience of kidney transplant care.
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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:
News from Sheffield Renal Dietitians
The dietitians produce a regular Newsletter. The first issue for 2024 is now out. You can meet the Team and read about what their latest plans.
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.
World Kidney Day is a global campaign aimed at raising awareness of the importance of our kidneys.
The aim is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.
Click here to follow the campaign on Facebook in preparation for 14 March 2024
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:
NKF Home Dialysis Peer Support Service
Fresenius Medical Care have announced their support for the free support service offered by the NKF for anyone already on or considering home dialysis.
Patients can be matched with a peer supporter and have one to one chats about any aspect of home dialysis.
For more details visit the NKF Website:
The Transplant Tour came to Sheffield on a very wet Wednesday on 20 September. The 500 mile cycle ride was organised to raise money for the Give A Kidney Charity and to raise awareness of kidney donation, especially non-directed (altruistic) donation.
The riders set out from Edinburgh on 17 September, and then called in at Transplant Centres at Newcastle and Leeds before reaching Sheffield,
They were going on to Manchester and Birmingham before finishing in Oxford.
The welcome banner was made by the children at the Sunshine Day Nursery.
Click here to visit the Give A Kidney website for more details about their work.
The riders were greeted by well wishers, including medical staff and kidney donors and recipients.
A symbolic baton was handed from a kidney donor to a recipient.
The South Yorkshire Mayor, Oliver Coppard welcomed the cyclists and congratulated them on their tremendous effort.
Also on hand to join the welcome party was Ed Clancy, Olympic gold medallist in cycling, and now working as active travel Commissioner for South Yorkshire.
Fundraising News
Thank you to Richard "Gus" Gutteridge for raising the fantastic total of £540 for SAKA through his JustGiving Page set up to mark his 60th birthday.
If you would like to add to the total the page is still open:
Richard Gutteridge is fundraising for Sheffield Area Kidney Association (justgiving.com)
Patient Voice Group
The Yorkshire and Humber Kidney Network are setting up a regional patient voice group to make sure patients are involved in their work across the region. The Yorkshire & Humber Kidney Network supports all 6 renal units in the region (Bradford, Leeds, Doncaster, Sheffield, Hull and York) and all of the associated satellite dialysis units. The network focuses bringing about improvement in the quality and equity of care across the region and there will be opportunities for patients to engage in shaping their work as the network continues to develop.
If you are interested in joining a patient voice group, which would be a mix of face to face and online meetings, could you please email Gillian.Dinsey@nhs.net with your contacts details.
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:
Fundraising News
Collections
A big thank you to Susan and Lee Ellis who have held collections amongst their neighbours and friends over the last year, raising over £500 for SAKA.
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Three Peaks Challange
Gary Hackett successfully completed the Three Peaks Challenge on 29 April and raised a magnificent £812 for SAKA. We would like to congratulate him on this achievement and to express our thanks for choosing to support SAKA.
If you would like to add to the total please visit his JustGiving Page:
Gary Hackett is fundraising for SAKA (justgiving.com)
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.
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PKB: the new kidney care digital record
From January 2023 Patient View will be replace by Patient Knows Best. PKB is the leading provider of digital health records to the NHS. If you don't already have a PKB account you need to sign up before the end of the year in order to be able to continue accessing your test results etc. The two systems have been running in parallel, but from January Patient View will no longer be updated. All details about Patient Know Best can be found here: Renal - Patients Know Best If you have any problems with this new system please discuss it with your renal care team.
There is also an article on the NKF website about the change over. You can read it here: PatientView Switch to Patients Know Best Information | National Kidney Federation |
UK Renal Registry Report
The 24th UK Renal Registry Annual Report has been issued.This contains a wealth of data and statistics relating to chronic kidney disease.
Click here to visit the UK Kidney Association website where the reports can be found.
Click here for a summary of the report which analyses data up to the end of 2020
TRIBUTE TO STAN NUTTALL
Together with his wife Jennie, Stan was a founding member of SAKA in 1975. His daughter Gillian had kidney failure and was on dialysis. Stan and Jennie together with Dr Margaret Platts the then Renal Physician decided that there was a need for a kidney patient’s organization to raise funds for research and as a support group for Kidney patients in Sheffield.
Stan was very involved with SAKA for many years and helped organize fairs in Endcliffe Park, A float for the Lord Mayor’s parade and also collecting aluminium waste for recycling. The latter was a very good money spinner as the price of aluminium was high. It entailed taking a van round one evening a month to SAKA members spread far and wide to collect the metal, which they in turn had collected from friends and neighbouts, taking the truck load to a local scrap merchant on a Saturday morning.
Stan also got involved in a case where SAKA took the Inland Revenue (as it was then) to the commissioners to claim VAT on a computer system bought by SAKA for the Renal Unit. Unfortunately they lost the case but as a result of that case the law was changed so that any items now bought by charities for sole use in medical research or treatment could be VAT free.
Stan spent many an evening with Jennie going around the area speaking and collecting donations , from Rotary Clubs, Working Men’s Clubs and Schools.
Sadly on 2nd April 2022 Stan passed away at the age of 88, he will be remembered by his family and friends as a fun and loving man who made the most of life and was always helping others.
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