Directed donation

Naqeeb Quereshi on donating a kidney to his mother

Article For GMKIN In the name of Allah, the most Beneficent, the most Merciful. Waoo, it has been Four Years Now (13 September 2013-2017) since my mum has her transplant done at Manchester Royal Infirmary (MRI). We arrived in this country in July 2012 as a family to live and progress our life and careers[…]

DNA Editing

DNA Editing: Future therapy for genetic conditions?

DNA Editing: Future therapy for genetic conditions? It can’t have escaped your notice that in the past few days the latest development in DNA editing has featured heavily in the media as news emerged of scientists from the USA and South Korea successfully removing a piece of faulty DNA from an embryo. Not untypically, the[…]

World Transplant Games

Paul Reynolds at this year’s World Transplant Games

Paul Reynolds at this year’s World Transplant Games Paul, one of our Salford Royal Kidney Ambassadors, reflects on his time at the World Transplant Games in Malaga.   We’re just back from an incredible two weeks – 1st week showing the world the power of organ donation by playing for Team GB at this year’s[…]

Peer Support

SRFT Renal Dept. Introduces Peer Support Network

Salford Royal’s renal team is introducing a Peer Support network so that patients with queries, looking for support or simply a conversation with someone with lived experience of CKD have access to a friendly contact.  If you think you’d like to help other patients in this way then please contact Peer Support Nurse Jane Ascott[…]

DNA Editing

100,000 Genomes Project

100,000 Genomes Project With thanks to Jackie Evans, Mel Kershaw and Emma Wolfenden, a few words on signing up for the 100,000 Genomes project… I’ve taken part in several research studies over the years, the first being a comparative study of Ciclosporin and Sirolimus to which I enrolled on the day of my kidney transplant[…]

Immunosuppression prescription: Progress!

“The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.” — George Bernard Shaw I’ve never considered myself an unreasonable man.  In fact at times I feel cursed that I invariably see both sides of an argument[…]

Merry Christmas from HKPA, MRIKPA and everyone at GMKIN

The Christmas Season is upon us and it’s both a time of celebration and reflection.  GMKIN has much to celebrate this year after winning a number of awards which all of you have made possible so when you’re reflecting, give yourselves a huge pat on the back and perhaps, for those of you on dialysis,[…]

Summer burgers for the BBQ

Home-made beef burgers for the BBQ Burgers are a staple to many peoples barbecue during the summer.  However those bought from the supermarket often contain phosphate additives and added salt, making them less ideal for people with renal disease. Making them with good quality mincemeat will reduce the highly absorbable phosphate additives, whilst also being[…]

Spicy Spring

Recipes adapted with thanks from www.BHF.org.uk Recipes for GMKIN From Sarah Brook RD Spicy Spring As the weather heats up into spring, the SRFT dietetic department bring you some spicy recipes where salt can be swapped for spices. Low fat spiced chips Ingredients: 450g peeled potatoes, 1tbsp olive oil, 1 tspn lemon juice, ½ tsp[…]

John and the big silver box

John and the Big Silver Box   Having been told by my consultant some years ago that my future (with a capital F) lay in dialysis, I was dragged down a long dark corridor, kicking and screaming, by a nurse and shown two machines, one large, imposing and scary, the other somewhat smaller and looking[…]

Professor Kalra in conversation about kidney disease and research

Professor Phil Kalra of Salford Royal and CKD patient Michael Lomax in a series of videos taking about kidney disease and kidney research.  I’m involved with a few research projects and echo Michael’s comments about it giving you a greater understanding of the disease but I’d also emphasise that, in my case, it has also[…]

Using CKD lab results

Researchers at Manchester University are running a study to improve how CKD patients view and use their lab results online.  Initially the study is looking for patients from Salford Royal or Manchester Royal who have been transplanted for at least one year.  Checkout the poster below for details.  There are links below the poster for[…]

PKD update: PKD Clinic, Tolvaptan and ‘Befriending’ Event

An update from Dr Janet Hegarty and Dr Grahame Wood of Salford Royal Foundation Trust covering the PKD Clinic, Tolvaptan and the launch of a PKD patient Befriending project run by the PKD Charity UK.  For details please follow the link below. PKD update: PKD Clinic, Tolvaptan and ‘Befriending’ Event

‘Imagine what I could have done healthy’

In an interview with The Daily Telegraph just before the recent Rugby World Cup Jonah Lomu, who sadly died at the age of 40 last night, said “Imagine what I could have done healthy”.  That’s a scary thought given what he did achieve in the game but we should read more than that into those[…]

Patients can change the future of research

October 15th, 2003 is a date I celebrate with my family every year, it isn’t my birthday but to me it felt like a rebirth.  It was the day I received my kidney transplant.  It was also the day I enlisted in my first research study.  The details of the research escape me although I[…]

Invitation to join Patient Focus Groups to influence Renal Research

Greater Manchester Kidney Information Network (GMKIN) seeks patient involvement from across Greater Manchester in setting priorities and refining kidney research in Salford and Manchester Do you want to influence kidney research in Greater Manchester? Are you passionate about patients and their families having a voice within their healthcare service?                 Improving care for patients is at[…]

Tolvaptan: A Game Changer?

It’s almost two years since I wrote a blog called Parental Dilemma in which I posed the question in relation to a genetic disorder “would you test your child or would ignorance be bliss?” The genetic disorder in question was Autosomal Dominant Polycystic Kidney Disease (ADPKD) and it caused the complete failure of my kidneys[…]

Team Manchester at the Transplant Games, 2015

Zoe Dixon, manager of Team Manchester has kindly written a report of the team’s experience and performance at the recent Westfield Health British Transplant Games in Newcastle & Gateshead.  With many thanks to Zoe and Arthur Taylor for sharing the report. BRITISH TRANSPLANT GAMES NEWCASTLE & GATESHEAD 30 July – 2 August 2015 The Manchester[…]

Being in pain is a bit of a pain

There were so many great talks and presentations at the British Renal Society’s Conference in Leeds last week that it’s taken several days of reflection for them all to sink in. My mind however keeps returning to a talk from a junior doctor from Imperial College Renal and Transplant Centre, Louis Koizia. His excellent and[…]

Abba, Dementia and Empathy

Cristina and I have given a few presentations about GMKIN in the past few months but they felt like rehearsals for the main event, the British Renal Society Annual Conference which this year was held at Leeds University. Our journey to Leeds didn’t bode well for the rest of the conference: motorway traffic jams, a[…]

Shared Decision Making for kidney patients

With many thanks to Kate McNulty for allowing us to share this video.  Shared Decision Making (SDM) is a useful resource to identify your options when you’re approaching the point where you need to decide which type of dialysis is most suitable for you.  It will also help you talk in greater detail to your[…]

Be a part of it!

The British Transplant Games are taking place in Newcastle/Gateshead this year between July 30th and August 2nd.  If you come from Lancashire, South Cumbria, Manchester or North Cheshire and would like to take part please check out the details in the document below and contact Zoe Dixon who is the Manchester Adults Transplant Games Team[…]

Information sharing and where it goes wrong

I sometimes struggle for ideas for my blogs and often find that reading the blogs of others sparks an idea in my head.  This blog is based on comments I made to Anne Cooper (@anniecoops) about her recent musings on Information Governance and her assertion that the processes involved in capturing personal data aren’t always[…]

CKD Lab Results Research

  Stuart Powell and I attended an initial meeting with Lamiece Hassan and Paolo Fraccaro at the Health eReseach Centre (HeRC) in Manchester on Friday morning to discuss Paolo’s study into how best to present lab results to patients with Chronic Kidney Disease.  Following a brief introductory chat Paolo gave a short presentation on the[…]

The Ticking Clock of Routine and Twitter Friends

The weekend didn’t get off to a good start so it shouldn’t have come as a surprise that by Sunday afternoon my mood was heading steadily downwards. We were supposed to be travelling to the north-east to visit my step mother-in-law in her care home but the snow that greeted us on Saturday morning put[…]

Pause For Thought

I’ve always been one for reflecting on events in my life, thankfully these days I manage to avoid the negative, confidence sapping reflection that fuelled my period of deep depression. Nowadays I look for the postive things in my life and celebrate even the minor achievements no matter how insignificant. Until last week I counted[…]

Guest blog from John Roberts on organ donation

John Roberts urges people to spell out their organ donation decision.   New figures out this week show that just 45% of families agree to organ donation going ahead if they are unaware of their loved one’s decision to be a donor but this figure rises to 95% when they know the decision. To mark[…]

The Impenetrable Language of Research Documents

Many years ago as I was taking my first steps into Information Technology management I was invited by the board of directors to present a proposal detailing my recommendations on resolving the performance issues of the company’s computer system. The day duly arrived, I was summoned to join them in the boardroom and nevously began[…]

GMKIN Registration and Blogging process

I recently created a document (see link below) which gives a step by step overview of registering on the GMKIN website and also how to create your own blogs.  If you’re already registered on the GMKIN website then simply login and proceed to the section of the attached document about creating you own blog.  […]

Healthcare and Technology: A Brave New World?

When technology giants Apple and Google begin acquiring companies that have developed healthcare applications or equipment you know that mobile healthcare is a growing business. It is predicted that the next version of Apple’s IOS mobile operating system will come with built-in apps focused on measuring and improving our health while Google has already demonstrated[…]

Changes to Immunosuppression Medication Prescription

Some of you may have read a recent warning from the National Kidney Federation regarding changes to the method of prescribing immunosuppression drugs for transplant patients. Immunosuppression drugs will now be prescribed and dispensed from the patient’s renal centre. I had expected to hear more about this significant change but have heard nothing. Then again,[…]

Depression in CKD sufferers

“There are three clinical psychologists attached to the Salford Royal Renal Department.” “People with depression often have worse physical health, as well as worse self-perceived health, than those without depression.” source “1 in 4 people (in Britain) will experience some kind of mental health problem in the course of a year.” source “In a study[…]

My first dialysis session, my last dialysis session

The build up to my first dialysis session was very short and intense. While I’d attended all of the outpatient clinics to have my kidney function assessed throughout the previous ten years, I had made no attempt to accept and understand my condition and hadn’t thought through the dialysis options but decided on home haemodialysis.[…]

Healthy Kidneys, Healthy Lives

I spoke briefly at yesterday’s Healthy Kidneys, Healthy Lives event at the Reebok Stadium in support of Cristina Vasilica’s excellent work in developing and promoting GMKIN. This is what I had to say… “Good day everybody, it’s a pleasure to see such a well attended and supported event. Cristina has asked me to talk about[…]

Tripadvisor type service for the NHS

According to this article http://www.theguardian.com/society/2013/nov/28/nhs-launch-tripadvisor-style-website?CMP=twt_gu the government intend to introduce a Tripadvisor type service to the NHS having trialled it for several months in parts of London and the north-east. In the past I’ve had reason to both complain about and praise the care I’ve received within the NHS and have done so either directly[…]

ADPKD Information Event

This short blog is on the excellent Autosomal Dominant Polycystic Kidney Disease (ADPKD) event held at Salford Royal Hospital on Saturday 16th November, 2013.  The event was organised by Tess Harris of the PKD Charity and hosted by Dr Grahame Wood, consultant Nephrologist at Salford Royal. If I had to sum up the event in[…]