NEWS
NEWS FROM NKF
Introducing our new CEO: Andrea Brown
The trustees of the National Kidney Federation are pleased to announce that Andrea Brown will be appointed as NKF Chief Executive, from 1st January 2020.
David Marshall, Chairman NKF “Andrea has been the NKF Interim Chief Executive for the best part of 2019, the trustees are looking forward in further developing the NKF and the services it provides to
the renal community. As a patient led charity it is vital that our voice is heard clearly. Andrea is fully committed to this approach, and to take this mantra into the next decade and beyond.”
Andrea Brown “I have had the privilege of working with many wonderful people over the last seven years that I have been employed by the NKF. Working alongside all renal colleagues, the NKF as the
patient led charity will ensure a brighter future for all kidney patients in the UK. Time cannot stand still for the NKF, or for the reason we exist, patients - we must move forward and get the
patient voice heard at every opportunity.”
If you would like to get in touch with Andrea, please email andrea@kidney.org.uk
Have you received a kidney transplant?
The NKF is in the process of dedicating a page on their web site to celebrate kidney transplants. If you have received the gift of life please tell us how many years you have had your transplant,
does your kidney have a quirky name and maybe a photo of yourself? We will add your details to the page www.kidney.org.uk/your-kidney-anniversary Please email details to pete@kidney.org.uk including the date of your transplant
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.
GOLF CHALLENGE
On 24 October David Lilley completed a dawn to dusk golf challenge to raise funds for SAKA.
He raised £481.00 which HSBC are matchfunding and so the grand total will be £962.00, a great result.
He managed to play 4 rounds starting at 7.30am and finished at 5.30pm, even having his lunch on the go whilst travelling between holes.
He played 374 strokes with 17 pars and took 20557 steps.
Winners of the competition to guess his results were Christine Brown guessing 375 strokes,Liam Bennett guessing 17 pars and Amelia Tembey guessing 21000 steps.
Well done to David from all at SAKA.
David is on the right in the photo, being congratulated by Jason Baker from HSBC.
NHS at 70: The Story Of Our Lives is a national programme of work supported by The National Lottery Heritage Fund and led by The University of Manchester.
Stories are being recorded for a Digital Archive, and they are looking for people to share their own stories, including experiences of dialysis and renal transplantation.
They are particularly interested in the following areas:
- early experiences of home dialysis in the 1960s and 1970s
- experiences of transplantation
- issues around organ donation
- campaigning and activism to improve renal provision in the late 1970s/early 1980s
- lobbying to improve renal provision and the creation of a NSF
For more details visit the website : nhs70.org.uk
Download the Information Sheet.
SAKA AGM
The SAKA Annual General Meeting was held on Monday 30 September. Thank you to the loyal supporters who turned out on a wet evening.
We heard from Dr. Bisher Kawar, recently appointed as Clinical Director of Renal Services, who gave us an update on the Department. He explained that some of the dialysis facilities are due to be upgraded, and that they will be looking for patient input into ideas for future improvements.
Dr. Will MacKane spoke about an initiative called "Getting it Right First Time" (GIRFT), which compares best practice amongst renal departments throughout the country and enables units to help each other in delivering the best service possible to patients.
Mr. Steve Dilks from RPG Financial spoke about his management of the SAKA investments.
There followed the routine business, including a report on the National Kidney Federation.
SAKA Chair, David Marshall, spoke about the work of the charity and outlined our plans for the future, including changing our charitable status to become a CIO (Charitable Incorporated Organisation). This will extend the scope of what we are able to do for renal patients.
Phil Beattie, SAKA Treasurer, reported that the finances were in a healthy state and thanked everyone who had supported the charity over the year by regular and one off donations, including those who had chosen to remember loved ones in this way. He also thanked all volunteers who had helped sell Christmas cards and said a special thank you to Andrew Raftery for raising money through his talks to various groups around the city.
Officers and Committee Members were elected as follows:
Chair: David Marshall
Vice Chair: Ken Tupling
Secretary: Peter Joynson
Treasurer: Phil Beattie
Membership Secretary: Glynis Beattie
Committee Members: Adam Greenway, Darren Lath, Kerry Radford, Andrew Raftery
An Open Forum discussion highlighted discontent over the new appointment system. Instead of arranging your next appointment when leaving the Outpatients Deprtment you now have to wait to be contacted.
There were also questions on the supply of medications if and when Brexit happens.
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
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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 Victoria Harrison: victoria.10harrison@btinternet.com
Phone / text : 07985 781364
or visit: https://www.static-caravan.co.uk/private-hire-harrison-cayton-bay
To download flyer with full details CLICK HERE
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.
WORLD KIDNEY DAY 2019
World Kidney Day took place on Thursday 14 March.
To mark the occasion SAKA joined forces with the Sheffield Hospitals Charity to hold a photo exhibition in the Winter Garden in Sheffield city centre from Monday 11 March to Friday 15 March.
The Photo Exhibition featured the kidney stories of local individuals, including dialysis patients, transplant patients, a living donor and health care professionals.
Alongside was an information stand with leaflets on different aspects of kidney health.
We also help an Open Afternoon at the United Reformed Church on Norfolk St., with a variety of information stands, and speakers giving short presentations.
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.
PITHIA Trial
The PITHIA trial is a new clinical trial being rolled out across all transplant centres in the UK. The aim is to allow doctors to perform higher numbers of good quality transplants using kidneys from older donors.
3rd PKD Patient Research
Information Day
The 3rd PKD Patient Research Information Day was held on Saturday,14th July 2018 at The Circle, Rockingham Lane, Sheffield.
The event was chaired by nephrologist Prof. Albert Ong and was attended by nearly forty patients and guests.
Patients at the event were given presentations from experts on new research trials, patient experience of new treatments, managing pain and improvement of imaging techniques.
There were also opportunities to view posters from recent research studies, question the experts and to mingle and share experiences with each other.
The feedback from the day was very positive and there are plans for similar events in the future.
“An excellent informative day, thank you”
“Very useful”
“I am reasonably new to PKD but am very impressed and appreciative of the care and concern (and friendliness) of the Sheffield Team, thank you”
“This event is invaluable to me as a patient. It is so helpful to hear the advances in research as it helps me to feel more positive, empowered and knowledgeable about the disease”
For further information email: j.winterbottom@sheffield.ac.uk
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