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NKF Webinar: Navigating Menopause
Join Dominica McAndrew (MSc, AFHEA, RGN, NMP) for an insightful webinar on navigating menopause, covering its phases, symptoms, lifestyle strategies, treatment options and long-term health considerations - empowering you with knowledge while encouraging personalised medical advice from your healthcare team.
If you would like to attend the webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
NKF Webinar: Ageing Well with Kidney Disease
In just a few months, join Dr Andy Dixon, Consultant Nephrologist at Lancashire Teaching Hospitals and Honorary Lecturer & Academic Advisor for our webinar on Ageing Well with Kidney Disease.
To reserve your place to our webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
Are you looking to enhance your knowledge about kidney health and well-being? You can access online recordings of our past webinars, tailored specifically for kidney patients and families.
Why Tune In?
Our webinars cover a diverse range of topics designed to empower you with the information and tools needed to manage your kidney condition. Here’s a sneak peek into what you can expect:
Benefits for Kidney Patients - The importance of welfare benefits for those with End Stage Renal Failure and the different approaches the two main benefits Personal Independence Payment (PIP) and Universal Credit (UC) have, as well as a focus on disability benefits and the needs of patients undertaking home haemodialysis and carers allowance.
Skin Care, Fatigue, and Itching - Covering all aspects of looking after your skin.
Sexual Relationships in Kidney Failure - With topics such as fertility in CKD, the effect of CKD on libido, contraception and pre-pregnancy considerations in CKD.
How to Access
All our webinars are available online, simply visit our website, browse our videos, and start learning today! Whether you're a patient, caregiver, or healthcare professional, there's something for everyone.
Stay informed, stay healthy, and take control of your kidney health journey.
Check out our webinar series today: www.kidney.org.uk/Event/nkf-webinar-series
Our Peer Support Service is a safe and supportive environment where individuals diagnosed with kidney disease, family members, partners or caregivers, can connect with trained peer supporters to share experiences and receive guidance either by phone, online web chats, or face to face meetings.
Our free service is for all aspects of kidney care and management including topics such as;
• Caring for someone with kidney disease or kidney failure
• Chronic kidney disease and diabetes
• Dialysis including peritoneal and haemodialysis
• Transplantation and post-transplant experiences
• Donation processes and experiences.
We understand how isolating it can be to be affected by kidney disease, therefore we want to ensure that you have the accessibility and inclusivity that you need. Regardless of the topic or question, we are here to connect you with the right peer supporter.
To connect with one of the NKF Peer Supporters, please call the NKF Helpline on 0800 169 09 36 or alternatively email helpline@kidney.org.uk. The Helpline is open Monday to Thursday 08:30am - 5:00pm and Friday from 08:30am - 12:30pm.
For more information about the Peer Support Service please visit: www.kidney.org.uk/peer-support
Join Our Supportive Community for Young Adults Facing Kidney Disease
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.
Why Join Our Group?
Supportive Community - Connect with others who understand your experiences. Share your story or simply celebrate your small wins of the day.
Informative Discussions - Talk about the latest renal news and lifestyle tips.
Safe and Private Space - Our group is a private, safe and respectful environment where members can feel comfortable to share their experiences.
How to Join
Joining is simple! Just click on the link below to request access to the group: www.facebook.com/groups/youngnkf
Once You Request to Join
You will be asked a couple of questions and one of our administrators will approve your membership.
We maintain a friendly and supportive atmosphere, so please feel free to introduce yourself once you’re in!
NHS 10 Year Plan
We need your help to help shape the future of the NHS 10-year plan. The Government is inviting input - now is the time to have your say.
The NHS 10 year plan will set priorities in the NHS. At the moment, kidney disease is not seen as a government priority, despite the impact that it has on peoples’ lives, the NHS, and the economy.
We’d like to ensure that as many kidney patients as possible are able to fill out the survey over the next month to get kidney disease on the agenda.
The National Kidney Federation teamed up with Kidney Research UK to provide some suggestions if you’d like to fill out the questionnaire, pick public or workforce here: https://shorturl.at/zoByk
Find our suggestions: https://shorturl.at/znPeb
We’ll be continuing to work to influence government when the plan is published in the Spring, to ensure that kidney patients’ voices are heard and their needs met.
Kidney Beam Whitepaper
The cost of kidney disease to the NHS and UK economy could rise from £7 billion to almost £14 billion in just 8 years’ time, Kidney Research UK have warned. As prevalence of kidney disease and associated cardio-kidney-metabolic conditions grows rapidly, the costs of delivering dialysis treatment alone threatens to overwhelm the NHS by 2033.
As we reach a crucial tipping point in finding more efficient and innovative ways to tackle the crisis, a new white paper lays out a proposed intervention that could save hundreds of millions, if not billions, for the NHS.
Authored by Sharlene Greenwood of King's College Hospital NHS and Kidney Beam, and with a foreword by Sandra Currie OBE, Chief Executive of Kidney Research UK, the paper proposes an evidence-based, digitally-enabled rehabilitation programme for people with cardio-kidney-metabolic conditions that has already been clinically proven to improve health outcomes and reduce cost-per-patient by almost £600.
Find out more by reading “Reimagining rehabilitation for people with cardio-kidney-metabolic conditions - from inactivity to empowerment” at tinyurl.com/2uytft3k
With thanks to contributors Andrea Brown of the NKF - National Kidney Federation, Dr Katie Vinen of the UK Kidney Association, Professor Jamie Macdonald from Bangor University, Liam Cahill of Together Digital, Professor David Wheeler of the NIHR Research Delivery Network, and Peter Joynson from SAKA - Sheffield Area Kidney Association.
For less than the price of a cup of coffee, you can become a member and make a meaningful difference.
Support When You Need It
Our Helpline advisors and peers are always ready to offer guidance and support. There are no waiting lists, just a friendly and experienced voice on the other end of the phone when you call.
Your Contributions Matter
Your donation enables the NKF to maintain a comprehensive library of educational leaflets. Our leaflets are written by heathcare professionals, providing patients, carers, and renal units with essential information free of charge.
Let's Shape the Future Together
Join us in tackling major challenges related to kidney health and advocating for real solutions in Parliament. Your donation helps the NKF to advocate for policies that ensure everyone in need benefits from innovative treatments and care.
Discover Exclusive Member Benefits
Explore the benefits available to NKF Members today. Make a difference by joining us: www.kidney.org.uk/member
Helpline - 0800 169 09 36
Loin Pain-Haematuria Syndrome
What is Loin-Pain Haematuira Syndrome
Loin Pain-Haematuria Syndrome (also known as LPHS) is a combination of loin (ie kidney) pain and haematuria, which is a medical term for blood in the urine.
The loin pain may be a continuous dull ache, or intermittent, coming on only occasionally, and could be from one side or both.
The blood in the urine may be visible to the naked eye, coming in occasional attacks. There may even occasionally be blood clots. In other cases, the amount of blood is so small that it cannot be seen, but is detected when the urine is tested in the clinic.
What are the causes of Loin Pain-Haematuria Syndrome?
There are several conditions which can cause this problem. A kidney biopsy, or sometimes an angiogram test, is used in many people to make a clear diagnosis. The conditions are all essentially abnormalities within the tissue of the kidney.
The main types of Loin Pain-Haematuria are:-
1. IgA Nephropathy
This is a condition in which small amount of a type of normal antibody (called IgA) get stuck in the kidney as it passes through in the bloodstream. This is a chronic condition, which sometimes goes away on its own but occasionally can cause damage to the kidneys. A related condition called IgM Nephropathy can sometimes cause pain.
2. Thin Membrane Disease
In this condition the membrane that filters the blood to make urine is too thin, and blood can pass across it in very small amounts. In a few cases of this condition, there is pain in the kidneys, usually occurring in attacks every so often. Although this condition can be painful, kidney failure does not seem to occur in the long term, so that the only real problem is the symptoms.
3. Infection
In some cases, Loin Pain-Haematuria Syndrome occurs after a bladder infection with involvement of the kidney. Even when the infection has been treated and bugs can no longer be found in the urine, pain may persist for 6 months, or even longer in some cases.
4. "Nut-Cracker Syndrome" is when the large main artery of the body can compress on the left kidney’s vein, interrupting blood flow. Common treatments include monitoring, stenting or surgery but not always successful at irradicating symptoms.
5.“ Classic Loin Pain-Haematuria Syndrome”
Some patients have none of the above diagnoses. In these cases there may be minor abnormalities on a kidney biopsy. Angiogram tests to look at the blood vessels in the kidney may show abnormal blood flow, perhaps causing a cramp like pain. The cause is not fully understood. It certainly is more common in women than in men, and there may be hormonal influences. Some women find the pain is worse at different times of their menstrual cycle, or comes on during pregnancy, or if they are taking the oral contraceptive. This condition may persist for some years, and can be lifelong. Damage to the kidneys leading to kidney failure does not occur.
What are the treatments for kidney pain?
If infection is suspected, a course of antibiotics may be given. Long term preventative antibiotics may be necessary in some cases.
Loin Pain-Haematuria Syndrome may, in a few people, respond to anticoagulant treatment with warfarin or aspirin - this reduces the tendency for blood flow in the kidney to be interrupted.
In the majority of cases, however, little can be done apart from trying to ensure adequate treatment for the pain itself. The types of treatment that may be effective vary from person to person, and advice from a doctor specialising in pain relief may be needed.
Where can I go for further help?
A joint approach from the kidney specialist, general practitioner and, if necessary, a pain specialist or psychologist may not always be enough. If you want further advice or treatment, please discuss this with your specialist.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
Raising Awareness for Genetic Kidney Disease in South Asian Communities
Did you know that people of South Asian origin (Pakistani, Kashmiri, Indian, Bangladeshi, among others) have a higher risk of some kidney diseases?
This includes a condition called Primary Hyperoxaluria Type 1 (PH1), a rare disease that can cause recurrent kidney stones.
Other signs of that your kidneys are not working properly can include weight loss and poor appetite, swollen ankles, feet or hands, shortness of breath, tiredness and blood in your pee.
Learn more about PH1 (and access information in Urdu!): https://bit.ly/4hwMuzO
Are You Looking to Mix Things Up with Your Renal Diet?
This recipe book is not only suitable for kidney patients, but also for families looking for healthy eating that is enjoyable and tasty.
With over 50 recipes to choose from including...
- Spiced carrot and parsnip rosti with fried egg
- Warm chicken korma pitta
- Singapore style pork noodles
- Devonshire spiced apple cake And so much more!
Grab your Taste! Cook book today for only £3.75 plus postage and packaging.
Shop now: www.kidney.org.uk/shop/nkf-cook-book
Explore Our Accessbility Tool Online
Discover our online accessibility tool that is located on our website www.kidney.org.uk
This designed web tool makes our website more user-friendly, regardless of abilities or impairments. Many of our supporters find the tool useful, this month, our tools most used via the website include the screen reader, translation, styling tool and reading aids.
The top three translated languages were:
• Punjabi
• Indonesian
• Portuguese
Check out our YouTube Channel for a video explaining how to unleash the accessbility tools full potential, whether that be to use our built-in dictionary, text-to-speech functionality or customisable page colours.
Check out our 'How To' video here: www.youtube.com/watch?v=A10Xva5xuzs
KPA Members of the NKF
Currently there are 50 Kidney Patient Associations (KPAs) and their officer who are the controlling council of the NKF. Please find the details below of the KPA's available or for more information please contact the NKF office on 01909 544 999 or email chris@kidney.org.uk
Addenbrooke's KPA
Barts Renal Patients' Association
Bradford KPA
Bristol Area KPA
Chesterfield KPA
Colchester KPA
Coventry & Warwickshire KPA
Doncaster and Bassetlaw Kidney Association
Dorset KPA
Dudley KPA
Dumfries & Galloway KPA
Exeter & District KPA
Friends of Derriford Hospital Kidney Unit
Gloucestershire Kidney Patients' Association
Guy’s & St.Thomas’ KPA
Heart of England KPA
Humberside KPA
Ipswich & District Kidney Association
Isle of Wight KPA
Kent KPA
King’s KPA
Kernow KPA
Leicestershire KPA
Lister Area KPA
Liverpool KPA
Manchester Royal Infirmary KPA
Manx KPA
North East Kidney Patients' Association (NEKPA)
Northamptonshire KPA
North Staffs & South Cheshire KPA
Nottingham and Notts KPA
Orkney KPA
Queen Elizabeth Hospital KPA
Royal Derby KPA
Royal Free Hospital KPA
Royal London Hospital KPA
Sheffield Area Kidney Association (SAKA)
Scottish Kidney Federation
Shropshire KPA
Six Counties KPA
South Eastern KPA
South East Scotland KPA
Southport Kidney Fund
St Helier and Surrey KPA
Tyneside KPA
United Norwich KPA
Wessex KPA
West London KPA
West Riding KPA
Wrexham Maelor KPA
Ysbyty Gwynedd KPA
Associate Members
British Association of Social Workers (BASW) Danielle's Flutterbyes
K.D.A.R.S
Kidney Cancer UK
If you are a Kidney Patient Association that would like to become an NKF member please contact
