In Touch newsletter April 2024

Is there something you would like to share in the next newsletter? Email sharney@kidney.org.uk by Wednesday 8th May 2024.

A Big Thank You To All Who Attended our Annual KPA Day News

Thank you to everyone who attended our KPA Day on Saturday 13th April.

It was great to have a mix of KPAs from across the country, ones that had just been newly formed and some of the more established ones.

The day started with a breakout session where each group had 15 minutes to discuss a particular subject and share what they do within their KPA.

In the afternoon it was more of a formal event with the NKF AGM and Council meeting and the day finished off with an open forum.

Our new list of NKF Executive Committee Members is provided below:

World Kidney Day Activities

We would like to say a big thank you to all those who got involved in World Kidney Day this year, it was amazing to see so many dedicated volunteers and staff get involved with the day and raise awareness of such an important cause. Below are a few Kidney Patient Associations that have shared a few words on what they got up to on the day:

Dorset Kidney Patient Association:

"At the Dorset County Hospital we celebrated World Kidney Day and raised awareness of chronic kidney disease with a cake sale which was organised and run by our fabulous renal team, but a special mention goes to Leanne. We were in Damers Restaurant promoting how to keep your kidneys healthy and what your kidneys do, as well as acute kidney injuries. Thank you to everyone who was involved, who baked the fabulous cakes and also all whom bought the cakes." - Tracey Dolbear.

Bristol Kidney Patient Association:

"BAKPA held a table display in the atrium of Southmead Hospital at Gate 5 which is where renal is situated. We had lots of interest from the public, staff and students of the university studying genetic diseases, we had given out lots of information leaflets, pens and trolley token keyrings, it was also a great way of letting our patients know who we are and what we do." - Vicky Gardner

The Royal London Hospital Kidney Patient Association:

"Our stand was set up the Saturday morning after World Kidney Day and was manned by two stalwarts of the Royal London Hospital KPA, Glenn Maloney and Marie Niven. Quite a few leaflets were handed out and a number of enquiries were received. It turned out to be a pretty busy day. The stand was set up at the Mercury Shopping Centre in Romford, East London." - Brian Gracey

Keep an eye out for our Summer issue of Kidney Life where we will share more about your World Kidney Day activities!

NKF Home Dialysis Peer Support Service

Our UK-wide National Home Dialysis Peer Support Service offers an opportunity for patients to have a one–to–one chat about home dialysis queries, shared dialysis care, and similar life experiences and lifestyles with our fully trained peer supporters.

In support of this service, we have produced a booklet to explain to patients the benefits of home dialysis and shared care. Inside this booklet there is information about our service, what is peer support, key points about home dialysis, concerns our peer supporters can advise on, how to contact our service and also some quotes from our peer supporters and patients/carers who have used our peer support service.

If you are a patient or from a renal unit and would like a free copy of the Home Dialysis Peer Support Service booklet, please contact the NKF Helpline at helpline@kidney.org.uk or call 0800 169 0936.

CKD Petition - Scottish Parliament

Kidney Research UK have lodged a petition with the Scottish Parliament calling on the Scottish Government to make chronic kidney disease (CKD) a clinical priority.

The petition is now live:

Make chronic kidney disease a key clinical priority - Petitions (parliament.scot)

We’re calling on the Scottish Government to make kidney disease a clinical priority in Scotland as we believe this is the only way to ensure an action plan is implemented to drive forward positive action in prevention, early detection and treatment of CKD. By making CKD a clinical priority its status would be elevated, and the Scottish Government and clinical leaders would take action to improve kidney patient outcomes.

Whilst diabetes and cardiovascular disease are currently deemed clinical priorities, kidney disease is not, which we believe is a short-sighted disservice to kidney patients today and those of the future. Kidney patients often fall through the net in Scotland, many diagnosed too late to prevent kidney failure. Clinical guidelines on CKD are in desperate need of overhaul so medics are clear on clinical standards and responsibilities and patients receive the best care.

We would appreciate your support in signing the petition.

Please note the petition can be signed by anyone living in the UK.

Thank you for your support.

Becoming a Living Donor

Meet kidney donor Prafula. Prafula donated one of her kidneys through the UK Living Kidney Sharing Scheme to enable her niece Shakti to receive a kidney transplant.

Shakti spent much of her childhood in and out of hospital suffering from chronic kidney disease. By the time she was 24, her kidney function had declined to six per cent and the prospect of daily dialysis loomed.

Prafula says “I wanted to do something to help and after many tests, it was discovered I wasn’t a direct match for Shakti.”

After finding out about the UK Living Kidney Sharing Scheme – a scheme which attempts to pair donors and recipients across the UK – a match was found for Shakti. Prafula donated to someone through the scheme on the same day.

“Shakti’s transplant was a success, and she now lives a full life without dialysis. It’s sometimes hard to believe it was all possible through this scheme. I would do it all again if I had another spare.”

For more information on living donation visit: https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/32633/2324-0414-living-donation-leaflet_bilingual_digital_compressed.pdf

Developing Messages to Promote Organ Donation by Faith Among Ethnic Minority Communities

On Tuesday 4th June 2024 NBTA and NHS Blood and Transplant are arranging a conference at the Resource for London, Holloway Road, N7 6PA, from 09:30 - 16:00.

The aim of the day is to develop messages to promote organ donation among ethnic communities by faith and discuss plans to raise awareness. The event aims to involve key individuals, faith leaders and organisations with experience and expertise in this area and NHSBT staff. The event will also share the latest information on the impact of the opt out law in England, data on organ donation and transplantation by ethnicity/religion and attitudes to organ donation by ethnicity and religion. There will be discussions by faith groups to develop messages and discuss plans to raise awareness about them will also take place.

Attendance to the event is by invitation, however, if you are interested in attending please email stephanie.norris@nhsbt.nhs.uk in the first instance.

Conservative Management in Kidney Disease

What if I think dialysis is not the right choice for me?

You have the right to decide not to start dialysis if you feel that the burden of the treatment would outweigh the benefits, and so reduce your quality of life.

Deciding not to have dialysis does not mean you will have no treatment for your chronic kidney disease (CKD). We call this (no dialysis) option conservative care.

Why might I choose not to have dialysis?

For many people with advanced CKD, dialysis treatment (or a kidney transplant) means that they can still have a fulfilling life.

There isn’t a cure for CKD and dialysis treatment doesn’t always:

• improve other health problems

• improve quality of life

• extend life

Dialysis treatment can be demanding on your time and energy, and most people need to make changes to their lifestyle (such as diet and fluid intake).

Some types of dialysis also involve spending a lot of time at the hospital.

What is conservative care?

The aim of treatment with conservative care is your wellbeing and quality of life. Conservative care (also called supportive care) aims to:

• treat and reduce any physical symptoms of CKD such as:

– tiredness

– feeling sick

– itching

– swelling and breathlessness

• protect and maintain any remaining kidney function (where possible) by:

– controlling your blood pressure

– changes to your diet

– changes to your medication

• provide emotional, social and spiritual support

• plan for the future

Your care will be shared between the renal unit, your GP and community services. You will be seen in clinic, or have an appointment by telephone or video call, by a doctor and/or a specialist nurse, who will see you as little or as often as needed. The nurse specialist for supportive care will support you and your family at home and liaise with other services you may need.

If I don’t dialyse will I die sooner?

How long someone lives is different for each person and will depend on:

• existing medical conditions

• amount of kidney function left

Not having dialysis may shorten your life but for some people dialysis could worsen their quality of life. If your doctor thinks you are not well enough to start dialysis and it will shorten your life, they will explain this to you.

The renal team will be supportive whatever you decide.

Who can I talk with to help me make a decision?

Many people find it hard to talk about deciding not to have dialysis.

They are often concerned that they will upset their relatives or are worried how they will react.

As with anything that is difficult, it is always best to talk openly and honestly

Your clinic doctors and the pre-treatment nurses will be happy to discuss the options with you, and those close to you if you wish.

Often people find it helpful to have a friend or family member present for these discussions.

Some people also find it helpful to speak with their family doctor or their religious advisor, for example.

Can I change my mind?

You can change your mind and your kidney doctor and the renal team will support you.

You need to be aware however, that starting dialysis in an unplanned way can be difficult and if you start treatment very late, it can be harder on your body.

Further planning

Some people take the opportunity to think further about their preferences for what they would want for the future if, or when, their health worsens.

This is called Advanced Care Planning. If you would like to think more about your preferences please let your hospital know.

If you have already written an advanced directive (or ‘living will’) please:

• Let staff at your renal unit know about this

• Talk with your family, friends, and carers about this, so that they know your wishes as well.

The National Kidney Federation cannot accept responsibility for the information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

To request a full list of our patient information leaflets please call our Helpline on 0800 169 09 36 or e-mail helpline@kidney.org.uk

NKF’s Helpline Information Leaflets

The NKF Helpline information leaflets cover a wide range of topics such as chronic kidney disease, end-stage renal failure, emotional impact of CKD and much more. The leaflets are free of charge and can be mailed out free of charge upon request.

KIDNEY BASIC TITLES

About the kidneys

Chronic kidney disease

How to cope with end stage renal failure

I’ve got kidney disease

The emotional impact of CKD

End of life care for renal patients

Conservative management for kidney disease

Carer’s information helping your loved one manage their renal condition (NEW 2024)

Cholesterol and kidney disease

Calculating kidney function

High blood pressure

Frequently asked questions about kidney disease

Acute kidney injury

Preventing AKI’s

Acidosis in patients with CKD

Kidney biopsy

Confronting depression while managing kidney disease

KIDNEY DISEASES AND CONDITIONS

Anaemia

Iron deficiency anaemia and CKD

Glomerulonephritis Q and A

Haematuria

Kidney cysts

Pain in kidney and urine disease

12 steps towards pain control

Proteinuria

Small or single kidney

Diabetes and kidney disease

Focal and Segmental Glomerulonephritis

(FSG)

IGA Nephropathy

IGM Nephropathy

What is vasculitis

Henoch-Schonlein Purpura

ARPKD

Adult polycystic kidney disease

Renal artery stenosis

Amyloid

Kidney disease in myeloma

MPGN Membrano Proliferative

Glomerulonephritis

Minimal change nephropathy

Nephrotic syndrome in adults

Loin pain haematuria

Interstitial nephritis

Urinary infections

Reflux

Alport’s syndrome

Lupus and lupus kidney disease

Fabry disease

Bones, calcium, phosphates & PTH kidney failure

Good mouth care for renal patients

Calciphylaxis

HAEMODIALYSIS

Introduction to haemodialysis

Home dialysis the advantages

Myth busting home dialysis

Having a fistula for dialysis

Living with a fistula for dialysis

Fistula care

Dialysis line insertion

My first haemodialysis

Fluid balance on dialysis

EndoAVF system more access options for your dialysis

NKF Peer Support Booklet

Peritoneal dialysis

Introduction to peritoneal dialysis

DRUGS

Medication for immunosuppresion and prevention of infections in kidney patients

Commonly taken drugs for kidney failure

Over the counter drugs

Blood pressure medication

Holiday travel vaccinations in transplant patients

TRANSPLANTATION SERIES

Top tips information about transplants

What is a kidney transplant

How long does the kidney transplant operation take

How are kidneys allocated

The transplant phone call - what to expect

The transplant procedure - what to expect

How long is the wait for a kidney transplant

Is a kidney transplant psychologically stressful

Complications of a transplant

Can a transplant come from a relative, partner or friend

Are work and normal life possible after transplant

What drugs are needed after transplant

Infection after transplant

Diabetes after transplant

Blood pressure, cholesterol, heart disease after transplant

What is transplant rejection

After my transplant - what to expect

Skin care in renal transplant patients

Sexual problems following a transplant

Cancer after a transplant

LIVING DONOR INFORMATION

Living donor information

How do kidney donors feel afterwards

Reimbursement of living donor expenses by the NHS

Going home after donating a kidney

KIDNEY DISEASE AND FOOTCARE

Charcot feet

Holiday feet

Foot ulcers

Footwear

HOLIDAY INFORMATION FOR KIDNEY PATIENTS

Holiday tips and guidelines

Holiday guidelines for pd patients

Holiday guidelines for hd patients

Holiday guidelines for transplant patients

DIETARY INFORMATION

Potassium

The eatwell plate

Can kidney patients eat fruit and vegetables

Dietary information for kidney patients (CKD 4-5)

Healthy eating for people with chronic kidney disease (CKD 1-3)

Phosphate in your diet

INFORMATION FOLDERS/BOOKLETS

Benefit guide for kidney patients 2024

Dietary information folder

CKD stage 3 information folder

Dialysis information folder

Exercise information folder

Post transplant information folder

Pre transplant information folder

NKF new patients support book

EXERCISE INFORMATION

Exercise for kidney patients

Exercise for kidney patients (NEW Nov 2023) NKF and Leicester kidney lifestyle team

Staying fit with kidney disease

Let’s get active - exercise for kidney patients

Can I safely exercise with high blood pressure

For more information on our NKF Helpline information leaflets, please visit our website: www.kidney.org.uk/helpline-leaflets

Our free to call confidential Helpline is available on: 0800 169 09 36

Available from: Mon-Thurs 08:30am - 5:00pm, Fri: 08:30am - 12:30pm

Or alternatively email: helpline@kidney.org.uk

NKF Fundraising

Once in a Lifetime Event

It's great to plan ahead, here at the NKF we offer lots of different events to take part in and ones you will remember for a very long time. Some of the new events on offer are Snowdon at night, watching the moon as you climb 1,085 metres to the summit, or being part of one of the most ancient treks you can do - walking along Hadrian’s Wall with some of the most remarkable Roman monuments in the country.

All these events have a small deposit charge and then you generate sponsorship with our help.

Not only will you be doing an event of a lifetime but also helping to raise vital funds to support kidney patients and their families.

For more details please visit: Fundraising Events | National Kidney Federation

TASTE! Healthy Eating for a Modern Lifestyle

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 £5.00 plus P&P: www.kidney.org.uk/shop/nkf-cook-book

Making Our Website Accessible for All

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:

• Somali

• Hindi

• Finnish

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

Patient Participation Opportunities

Online peer support in long-term conditions: A team at King’s College London has developed a new online peer support platform in collaboration with people living with long-term physical health conditions. They are interested in finding out what people think about the new intervention, such as what they like and dislike.

Want to get involved? Please click here: https://bit.ly/commongroundresearch

NKF KPA Members

Currently there are 48 Kidney Patient Associations (KPAs) and their officers 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 via 01909 544 999 or email nkf@kidney.org.uk

Addenbrooke's KPA

Bristol Area KPA

Chesterfield KPA

Colchester KPA

Coventry & Warwickshire KPA

Doncaster and Bassetlaw Kidney Association

Dorset KPA

Dudley KPA

Exeter & District KPA

Friends of Derriford Hospital Kidney Unit

Gloucestershire Kidney Patients' Association

Guy’s & St.Thomas’ KPA

Heart of England KPA

Hope 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

Ysbyty Gwynedd KPA

Associate Members

British Association of Social Workers (BASW)

K.D.A.R.S

Kidney Cancer UK

If you are a Kidney Patient Association that would like to become an NKF member please call 01909 544999