NEWS
OBITUARIES
All at SAKA were deeply saddened to hear that two valued members of the kidney community had passed away in early December. May they both rest in peace.
John Powell
John served as a Trustee in the early days of SAKA as well as being active in NKF. (Longer tribute to follow)
Darren Lath
Darren was a transplant patient and a Trustee of SAKA. He was a popular and loyal member of the Sheffield Adult Transplant Games Team and competed regularly in the Games over several years. Many people will remember him as the person who organised bookings for the seaside caravans which SAKA used to own. He was first diagnosed with cancer a few months ago but then given the all clear.Tragically he was then diagnosed with another tumour and lost his battle after a short illness.
COVID-19 / Omicron variant Updates
Information about new treatments (updated 20 Dec 2021)
The NHS is offering new antibody and antiviral treatments to people with coronavirus (COVID-19) who are at highest risk of becoming seriously ill.
This includes people with Stage 4 and Stage 5 chronic kidney disease as well as transplant patients.
If you are in this category you should receive a communication from the NHS and you will receive a PCR test kit through the post. For full details visit: Treatments for coronavirus (COVID-19) - NHS (www.nhs.uk)
The websites of the leading kidney charities have up to date information about the treatments being offered as well as advice on safe working etc.
CLICK HERE FOR COVID 19 ADVICE FROM NKF
Latest guidance for kidney patients
You can check on the latest updates via the Kidney Care website:
Coronavirus (Covid-19) guidance for people with kidney disease | Kidney Care UK
JCVI advice following Omicron variant
For further details on JCVI advice click here.
And here you can find the latest Government advice for the people with weakened immune systems (issued 1 Dec 2021)
The leading Kidney charities have produced a summary of what vaccines kidney patients should be offered, including a timetable for working out when you should receive your vaccines and which ones you should be offered. It also explains who is eligible for FOUR DOSES.
Click below to download the PDF.
Produced December 2021
VACCINES EXPLAINED DEC 21.pdf
Adobe Acrobat document [507.7 KB]
To access the latest advice from the Government visit:
Coronavirus (COVID-19): guidance and support - GOV.UK (www.gov.uk)
MELODY STUDY
This study aims to recuit people who have received solid organ transplants in order to estimate how many immunosuppressed people in the UK have antibodies that may provide protection against Covid-19 after 3 vaccines.
For details and to register to take part, visit : www.melodystudy.org
Kidney Beam
Kidney Beam 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, which is especially important right now when many of you might still be wary of attending classes in person.
The online platform is hosted by specialist kidney professionals - from renal physiotherapists to renal counsellors - from a number of different NHS trusts and backgrounds, as well as people living with kidney disease. Kidney Beam is aimed at anyone over 16, with any ability, any kidney condition, and at any stage of kidney disease.
Kidney Care UK hosted their latest Covid-19 Question Time Webinar on 8 November.
What vaccine patients should receive
This is the latest guidance:
The renal patient groups for a third primary vaccination or booster vaccination are as follows:
- All kidney patients who have a transplant including those who have returned to dialysis but still receive or have received immunosuppression in the last 6 months: third primary vaccination
- Patients who at the time of the original 2 vaccine programme were receiving significant immunosuppression: third primary vaccination
- All patients on the transplant waiting list: booster vaccination unless also in group 1 or 2 in which case a third primary vaccination
- All patients on dialysis: booster vaccination unless also in group 1 or 2 in which case a third primary vaccination
- Chronic kidney disease stage 3-5 not on dialysis treatment: booster vaccination unless also in group 1 or 2 in which case a third primary vaccination
NKF Virtual Patients' Event
If you missed the NKF Patients' Event on 9 October or if you want to see parts of it again, the videos are now available on the NKF website. You can watch the whole event or choose the presentations you would like to see:
NKF Virtual Patients' Event 2021 | National Kidney Federation
Beware of Covid Pass Scam
There is currently a countrywide scam around Covid 19 Passes. If you receive a text or email offering any information on Covid 19 don't forget to check that it has come from a reliable source, even if it uses the words NHS in the text, Please report any suspicious messages.
See the Action Fraud website for more details :
An Addenbrooke’s trial is rolling out to hospitals across the UK to see if a drug used to treat tapeworm can give high-risk kidney patients extra protection against Covid-19.
The PROTECT-V study has been running since February and now 40 more hospitals will join in to investigate whether niclosamide can reduce the number of people who become seriously ill or die. If the trial is successful, it may pave the way for a new treatment to prevent or alleviate the impact of Covid-19 in people on dialysis, kidney transplant patients, and those with auto-immune diseases affecting the kidneys, such as vasculitis.
Kidney patients who would like to take part in PROTECT-V should speak to their nephrologist in their local centre . More information is available via https://www.camcovidtrials.net/trials/view,protectv_50.htm
Organ Utilisation Group online call for evidence
The Organ Utilisation Group (OUG) has recently been established at the request of the Department of Health & Social Care. Its remit is to review the current organ transplantation system and deliver recommendations on how to maximise the potential for organ transplantation in the UK, ensuring that we provide a premier healthcare system that delivers equity, excellence and innovation to meet the needs of those on the transplant waiting list.
They are seeking insights into the challenges of transplantation and examples of best practices and would like to hear from a wide range of stakeholders, including kidney patients.
Further details about the Organ Utilisation Group, its Terms of Reference, and meetings to date can be found on the Group’s webpage here:
Click here to access the online questionnaire
Home Dialysis
The National Kidney Federation is running a national campaign to encourage dialysis patients to consider dialysing at home rather than in a hospital. During the Covid 19 pandemic statistics emerged to show that home dialysis patients were at a lower risk of contracting the virus.
To help people make the transition NKF have launched a Peer Support service which offers short term practical and emotional support. If you would like to be put in touch with someone who has experience of home dialysis and who can talk to you about the process and share experiences, do get in touch by calling the NKF helpline: 0800 169 09 36 (9 am. - 5 pm, Monday to Friday)
or email helpline@kidney.org.uk
For full details of the Home Dialysis Peer Support Service click here
New NICE Guidelines
NICE (National Institute for Health and Care Excellence) have published new guidelines for the care and treatment of patients with chronic kidney disease.
A joint statement from professional, patient and research kidney organisations, including NKF, particularly welcomes the changes relating to measuring the kidney function of ethnic minorities.
Click here to see the joint statement.
Click here for an explanation of the rationale for the change.
UK Renal Registry Report
The 23rd UK Renal Registry Annual Report has been issued.This contains a wealth of data and statistics relating to chronic kidney disease.
Click below to download the report.
Dialysis away from base
UPDATE ON DIALYSIS AWAY FROM BASE: As lockdown restrictions ease and patients want to start to make travel plans, professional and patient societies have issued ad updated statement on dialysis away from base.
KEEP UPDATED
NKF (National Kidney Federation) have the latest news and advice for kidney patients on their website.
NKF are also working with other colleagues in the renal community to ensure information is up to date.
Click here to access the latest news
FOR MORE HELP AND ADVICE
Don't forget that NKF run the only free UK Helpline dedicated to kidney patients with two fully trained, experienced advisers providing a 5 day per week service to kidney patients, carers and healthcare professionals and renal units.
The NKF Helpline is open from 9am until 5pm Monday to Friday on
0800 169 09 36 or email : helpline@kidney.org.uk
The NKF Helpline is also the UK’s largest provider of kidney-related medical information leaflets with a library of over 200 titles written by nephrologists in simple language for patients and carers.
To access the latest advice from the Government visit: Coronavirus (COVID-19): guidance and support - GOV.UK (www.gov.uk)
Drive Through Blood Test Centre
The drive through blood testing facility has moved again (as from 5 July) and is now located at City Parkway, Parkway Avenue, Sheffield, S9 4WA.
(Use the turn off for the Pentagon car showroom)
PUZZLE BOOKS
SAKA has purchased a supply of Puzzle Books to be given to dialysis patients.
We know it is beneficial to keep our brains active and these puzzles will help to pass your time during your dialysis sessions.
If you would like one and have not been offered a copy, please ask a member of staff.
We would welcome any feedback on these books, or if you have any other ideas or suggestions about what else we could do to help:
please email: contact@saka.org.uk
New UK strategy sets out ambition to be world leaders in organ donation and transplantation
On 1 June 2021 a new 10 year strategy was launched for organ donation and transplantation. Increasing consent rates for organ donation and making the most of donated organs for transplant are the two key aims set out in this UK wide organ donation strategy.
To see further details click here.
SHARING GP DATA
From 1 September 2021 GP Practices across the UK will begin sharing patient data. The original start date was to be 5 July, but this has now been postponed.
The new General Practice Data for Planning and Research (GPDPR) aims to reduce the burden on GP practices, allowing doctors and other staff to focus on patient care.
The NHS will share details about diagnoses, symptoms, medications, immunisations as well as your gender and ethnicity. They will not share your name and address or any written notes your GP may have.
For more details via the NKF website click here.
ORGAN DONATION VIDEO
A group of British Asian artists have come together to produce a video promoting organ donation. View below.
KPA DAY AND AGM
NKF held their annual KPA Day and AGM via Zoom on Saturday 27 March 2021, with about 70 people attending. A new Executice Committee was elected, including Glynis Beattie and Phil Beattie from SAKA.
Two very interesting guest speakers were invited.
Paul Cockwell, Consultant Nephrologist, spoke about the impact of Covid-19 on renal patients, especially those on dialysis and Rommel Ravanan spoke on the impact of Covid-19 on kidney donation and transplantation and also gave an update on the new strategy for organ donation and transplantation.
To read more details about the presentations click here.
Below is the video of the speakers.
WORLD KIDNEY DAY 2021
We were unable to get together in person for World Kidney Day due to the ongoing coronavirus situation, so, in conjunction with Sheffield Teaching Hospitals NHS Foundation Trust, we held an online event on the evening of 11 March with presentations by health care professionals.
Over 40 people joined us for a very interesting evening.
Dr. Arif Khwaja chaired the event, which began with an update about Covid 19 in Sheffield by Dr. Veena Reddy. Other speakers included Dr. Syazrah Salam on bone health in renal disease, Louise Jackson on nutrition for kidney health, Dr. Helen Simms-Williams on her research about children with spina bifida in Uganda and Sarah Albone about the use of exercise bikes by dialysis patients. Professor Martin Wilkie rounded off the evening.
See below to watch the video of the World Kidney Day event:
VIDEO: HOW KIDNEYS WORK
To mark World Kidney Day teachers at Becton School worked with NHS staff at Sheffield Childrens Hospital to produce a short video to demonstrate what kidneys do.It features Kevin the Kidney and his twin Kate. Whilst this is aimed at the younger generation it is well worth a watch as a very basic explanation of how kidneys work. Click below and enjoy!
Click here to watch Kevin the Kidney
Ken Tupling
Everyone at SAKA was deeply saddened to hear the news in February that Ken Tupling had passed away. His most recent post at SAKA was as Vice Chair, but over many years he fulfilled lots of roles. Many of you will have met him selling Christmas cards at Sorby. He was also a stalwart at the National Kidney Federation, including serving as President.
FUNDRAISING NEWS
TEAM SCARLETT
SAKA is very grateful to Team Scarlett for raising the tremendous total of £3,229 for our funds.
Scarlett O’Keefe was waiting for a liver and kidney transplant when she sadly passed away on 15 April 2020 at the age of 28. She had already decided she wanted to raise money for charity, and she had challenged her mum Bev, along with family friend Kath, to do the #1000 mile walk to raise funds for SAKA. After their sad loss, Bev and Kath took the decision to continue this walking challenge and spent the rest of 2020 working towards raising as much money as possible, their original target being £1,000. Due to the generosity of Scarlett’s friends and family they far exceeded this target, and it is a wonderful tribute to Scarlett that they were able to give such a substantial donation to SAKA.
RAFFLE
Thanks to Katrina Mills for organsing a raffle amongst her family and friends. Her plans for a coffee morning had to be abandoned due to Coronavirus restrictions, but her raffle raised £147 for SAKA funds
HEALTH CARE WHEN TRAVELLING TO EU COUNTRIES
Here is a link to the latest guidance on receiving dialysis etc. when travelling to the EU after 1st January 2021:
Reciprocal Healthcare for Dialysis patients from 1st January 2021 | National Kidney Federation
FREE Information and Advice Sessions
SAKA is funding Information and Advice Sessions at the Renal Unit at the Northern General Hospital. Any renal patient can make use of this service, which covers benefits advice, housing issues, consumer issues, non-residential care, money matters, legal issues etc.
Sessions are also held at Heeley Satellite Unit.
The sessions are run on our behalf by Age UK, but are open to patients of any age.
So far we have had a lot of success in helping people claim benefits, which they may not otherwise have realised they were entitled to.
For further details or to book an appointment:
Phone 0114 2502850 or
email: enquiries@ageuksheffield.org.uk
We have set up a new Facebook Group:
We are
looking for patients (and family members/ carers etc) who attend the Sheffield Unit or its satellites.
We have started a small confidential group to discuss Sheffield and also share news and information based upon Sheffield. It
is clear during the COVID outbreak information is different from other units and it can get confusing. We would like the input of as many people as possible so that we can get a clear picture of what
is happening during this crisis.
Click here to visit / join the Group. https://www.facebook.com/groups/sakasheffield
WORLD KIDNEY DAY 2020
To mark World Kidney Day, SAKA joined forces with Sheffield Hospitals Charity Trust to organise a Photography Exhibition at the Winter Garden in Sheffield, which ran for a whole week in March.
Paul Cocker took photographs of ten kidney patients and renal staff and these were displayed along with their personal stories.
We also had a range of information leaflets for the public to take.
DIALYSIS BIKES AT SHEFFIELD DIALYSIS UNIT
SAKA has purchased 2 specialist bikes for patients at Heeley to use whilst dialysing.
These bikes have great benefits for patients.
Haemodialysis patients generally spend 3-4 hours 3 or 4 times a week on dialysis. This equates to 4-6 weeks per year sitting or lying inactive whilst on dialysis. Physical inactivity can lead to poor physical performance, loss of bone strength, loss of appetite, muscle wasting, hypertension, fatigue and dependence. These complications are augmented in patients with kidney disease, which in itself can lead to muscle wasting and hypertension. As most haemodialysis patients spend a considerable amount of time travelling to and from and in a dialysis unit, they have less opportunity to exercise.
Exercise in the general population is associated with a number of benefits including:
- Improved blood pressure control
- Increased muscle strength
- Improved mental health and well being
- Improved physical function and maintenance of independence
- Improved sleep
There are further specific benefits noted in haemodialysis patients including:
- Improved efficiency of dialysis by increased muscle blood flow enhancing removal of toxins
- Improved nutrition
- Delay in end stage cachexia
Living Donor Event
19 November 2019
The Living Donor Coordinators organised a highly successful evening at Bramall Lane on 19 November to give patients considering a living donor transplant all the information they needed. They were able to listen to and meet recipients of kidneys along with their donors.
The evening included a pie and pea supper and there was the chance to put questions to health care professionals as well as to donors and recipients.
CARAVAN HIRE
As you may know SAKA used to own a holiday caravan on the east coast, but, due to its declining use, we took the decision to sell it.
However, the North East Kidney Patients Association now have a caravan for hire at Cayton Bay Holiday Park near Scarborough.
Details: 2 bedroom, 6 berth, wheelchair friendly, fully equipped , hire fee includes free entertainment passes
Dialysis is available at Scarborough Hospital (4 miles away) and Bridlington Dialysis Unit (6 miles away)
For more details / bookings please contact : 01325 721909 or 07460874034
or visit: https://www.static-caravan.co.uk/private-hire-harrison-cayton-bay
SAKA was delighted to be chosen as one of the charities to benefit from the 2019 Music in the Gardens. This is an annual event in Sheffield's Botanical Gardens organised by local Rotary Clubs. Six volunteers from SAKA sold programmes and held a bucket collection on the evening of Sunday 7 July when the crowd was entertained by Unite the Union Brass Band and Sheffield Philharmonic Orchestra, followed by a firework display. So far over £700 has been raised, with more to come later in the year.
SHEFFIELD CELEBRATES 50 YEARS OF KIDNEY TRANSPLANTATION
On 28 September 2018 a celebration was held at Kenwood Hall to mark 50 years of kidney transplantation in Sheffield.
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