Kidney Research UK Update Magazine - Summer 2016, Issue 10

Update Summer 2016 Issue 10

THE MAGAZINE FROM KIDNEY RESEARCH UK

INFLUENCING CHANGE PAGE 10

Shared Haemodialysis Care project

The big interview: Chief Executive Sandra Currie

Meet two trustees keeping us on course

PAGE 04

PAGE 06

PAGE 14

Welcome

Are you going on holiday this summer?

We know many of our supporters love to go on holiday during the summer months to make the most of the seasonal weather. But have you considered how kidney patients receiving dialysis go on holiday?

We have an interesting article on page 8 providing tips for those patients and practical advice on how they can get away too.

In this packed edition of Update we feature some of the work you may not realise we do. Back in 2014 we decided that we needed to bring the issue of kidney heath to the attention of politicians. Our article (page 10) explains what we do and how we are influencing politicians to raise awareness of the need for increased investment in renal research and the need to speed up access to new treatments for kidney patients.

You can also read about a pioneering new project we are supporting involving 1,200 patients that aims to help those on haemodialysis take greater control of their care. The initiative is currently being rolled out across England after being labelled as ‘life changing’ by patients who previously participated in a trial.

On page 6, our chief executive Sandra Currie reflects on four years in the role and why now is the time to kick on and do more; and you can also read about two of our dedicated volunteer Trustees who help guide our work and ensure we are making a difference to people’s lives (pages 14 and 15).

As ever, our work is only possible with the support of our generous donors, as virtually all our funding comes from the general public. As we do more to tackle kidney disease on different fronts, we can only say thank you for helping make our work possible.

However you choose to help, thank you for your support and please let me know what you think of Update by getting in touch.

Alex

Alex Wheldon, Editor alexwheldon@kidneyresearchuk.org Contributors Allison Parkinson Jenny Hursit Harriet Williams Ainsley Harriott Redcar shop staff CP Photography

Printed by Print 4 Business Ltd Designed by www.adeptdesign.co.uk Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

Anna Turley visits Redcar shop On Thursday 7 April Labour MP for Redcar, Anna Turley, visited to the Kidney Research UK shop in Redcar to surprise staff and shoppers.

Ms Turley visited the store to volunteer and show her support for a great cause, by sorting stock, serving customers and even making a window display.

During her visit, she said: “Meeting the volunteers who selflessly give up their time to help raise vital money for Kidney Research UK today was wonderful.

These people do such an important job not only helping to fund research, but also raising awareness of kidney disease. The store here is a great place for Redcar residents to shop and a real credit to the charity.”

NEWSROUND // P03

Research report is a House of Lords hit Parliamentarians from across the political spectrum were united in their support for the launch of our report into renal research in the UK, which took place at the House of Lords in January.

The report, entitled Renal research: from a pioneering past to a positive future for kidney patients, celebrates breakthroughs in recent and ongoing research, and clearly lays out ways in which politicians can take action to support further progress in renal research.

At the reception, Kidney Research UK funded researchers described their work to MPs and peers, who also heard from patients and their families about the difference research can make to day to day living.

The event gave politicians food for thought in readiness for the launch of the UK Renal Research Strategy, coordinated by the UK Kidney Research Consortium. c You can read our Pioneering Past report on our website: www.kidneyresearchuk.org/file/pioneering_past.pdf c Find out more about our Public Affairs work with politicians and policymakers in our special feature on pages 10 and 11.

London Marathon On 24 April over 35,000 people took to the streets of London to take part in the 2016 Virgin London Marathon. In total Kidney Research UK had 60 runners all running as #TEAMKIDNEY. The charity has already received £90,000 in sponsorship from those taking part and is encouraging runners to keep sharing their stories to break the £100,000 barrier.

Keen supporter, Grant Johnson, ran in the elite category and came 25th overall! We’d like to say a massive thanks to all our runners and those who joined us at our cheering stations – we couldn’t have done it without them! Anyone who is inspired to take part next year can find out more at www.kidneyresearchuk.org

Dates for your diary KM Charity Walk (Kent and Medway) Sunday 26 June

London Bridges Walk Sunday 3 July

British 10K

Sunday 10 July

Ride 100

Sunday 31 July

Great North Run

Sunday 11 September

Newcastle Bridges Walk Sunday 2 October

Glasgow Bridges Walk Sunday 9 October

Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04

We’re helping patients take greater control of their care A pioneering project which aims to help patients on haemodialysis take greater control of their care, if they wish to do so, is to be rolled out across England.

The Shared Haemodialysis Care project, which was initially trialled in the Yorkshire and Humberside area, seeks to improve patients’ quality of life and outlook by supporting them to become more independent in managing their own dialysis.

It has been selected to be part of The Health Foundation’s £3.5 million Scaling Up Improvement programme – a national initiative which takes successful health care improvement interventions (treatments and actions) and helps to deliver them on a larger scale.

Over the next two and a half years the Shared Haemodialysis Care project will work with up to 1,200 patients and health care teams at 12 renal units throughout England. It will receive up to £500,000 of Health Foundation funding to help with the delivery and evaluation of the project. And, if found to be successful, Shared Haemodialysis Care may eventually become standard practice throughout the UK. The project is being led by Professor Martin Wilkie and his team at Sheffield Teaching Hospitals NHS Foundation in collaboration with health care professionals, patients, carers and various partners including Kidney Research UK, patient charities and 12 NHS trusts.

Kidney Research UK’s involvement will include sharing our experience of patient engagement and advisory support and helping to communicate the project’s aims and purpose. We will also be sharing our experience of working on other scaling-up programmes across the UK. For example, the

Find out more: www.kidneyresearchuk.org

ASSIST CKD project (which is also supported by a grant from the Health Foundation) which is mapping data from routine blood tests to detect patients with the early signs of progressive kidney damage across 20 centres.

The current concepts of Shared Haemodialysis Care were developed through a programme across Yorkshire and the Humber that started in 2010 supported by the Health Foundation. At its core, dialysis nurses give patients the opportunity to learn how to perform any of the 14 or so key treatment related tasks associated with haemodialysis, such as preparing equipment, measuring weight and blood pressure and self-cannulation. The project emphasises shared rather than self-care where patients are encouraged to learn at their own pace, taking on as much or as little of their own treatment as they would like to do.

Patients have been involved in all aspects of the programme – including its design.

They explored potential barriers to increased shared care and considered ways to overcome challenges. They also worked closely with renal staff and the project team to develop a wide variety of resources and tools. These include a three-day training programme for healthcare staff, a patient handbook, a nurse training journal and a dedicated website – all of which have helped to spread the idea of shared haemodialysis care to six renal units across the region.

Measures were also developed to document levels of patient involvement in their own care as well as staff and patient satisfaction with this new approach.

Over the last five years 350 nurses had been trained to support people to take a greater role in their own care and patients across Yorkshire and the Humber had the opportunity to participate in their own haemodialysis treatment. The associated 68% increase in home-based dialysis during this period resulted in an estimated saving of £1.2m to the NHS. And shared care made a massive difference to patients’ quality of life.

Professor Wilkie and his team now aim to use the knowledge gained and resources developed from the Yorkshire and Humberside programme to help them roll out shared haemodialysis care to patients, carers and renal staff across England. They also intend to add their findings to the UK Renal Registry’s clinical database to help further research into all aspects of kidney disease.

HOW YOUR MONEY’S HELPED // P05 Patients were encouraged to be actively involved in their own care

“Just as in Yorkshire and Humberside, we very much want patients and staff in the 12 sites that form part of this Scaling Up programme to be able to influence the direction of this initiative since this will only be successful if it is directed by the patient perspective. It’s all about tailoring care to the individual by asking how they would like to get engaged and what they would like to do,” says Professor Wilkie.

“We want to sustain a culture change where it becomes the norm that people who are on dialysis have the opportunity to play a greater role in their own care. It puts patients at the centre of care, enhances safety and increases equity – giving all patients the opportunity to take an active role in their treatment.

It’s all about tailoring care to the individual by asking how they would like to get engaged and what they would like to do.

Professor Wilkie

The next step

“We believe that patients can feel much better if they are able to take some control and some responsibility for their own circumstances, if they choose to.” says Andy Henwood (renal patient and Project Board Member). “By opening that door to patients we believe that many will want to walk through it.”

The following 12 sites will take part in the larger Shared Haemodialysis Care study:

c C entral Manchester Healthcare Trust c C ity Hospitals Sunderland NHS FT c E ast & North Hertfordshire NHS Trust c G uys and St Thomas’ NHS Foundation Trust c Heart of England NHS Foundation Trust c L eeds Teaching Hospitals NHS Foundation Trust

PATIENTS’ VIEWS ON SHARED HAEMODIALYSIS CARE David from Sheffield says the programme has “changed his life”

Nurses asked patients to choose which dialysis-related tasks they wanted to try

“Our primary objective is to demonstrate that people can become more independent in their care so they can have more control over their treatment. The may choose to dialyse at home or in renal units more independently, if they wish to do so,” says Professor Wilkie.

“And our intention is to link our findings with hospital data to hopefully demonstrate a link between greater patient involvement and less hospitalisations, improved quality of life and better health outcomes.

“Shared care changed my life. I eventually learned enough that I was able to go home and do home dialysis with the machine. Rather than hate this machine sometimes I’ll even cuddle it a bit because it’s saving my life – that’s the difference shared care made for me.”

David Pargeter You can see the rest of David’s interview on YouTube: youtu.be/FyyZNQEY4PA

c N orth Bristol NHS Trust c N ottingham University Hospitals NHS Trust c S heffield Teaching Hospital Foundation Trust c T he Royal Wolverhampton NHS Trust c U niversity Hospitals of North Midlands NHS Trust c Y ork Teaching Hospitals NHS Foundation trust For more information about the project visit the website: www.shareddialysis-care.org.uk

Help us change more lives Please help us fund more projects that will make a real difference to kidney patients’ lives. Make a donation today at www.kidneyresearchuk.org/donate or call: 0300 303 1100

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

I fundamentally believe that patients give enormous value to every stage of research and I’m pleased to see that we’ve been able to really accelerate our work with patients over the past four years.

It’s time to do more Why Chief Executive Sandra Currie feels the time’s now right to step up the pace of change for kidney research.

This September Sandra Currie will mark four years as Kidney Research UK’s Chief Executive.

We caught up with Sandra recently to ask her to reflect on the key developments that she’s witnessed within the charity and the wider renal community since 2012. We also asked her to share her hopes for the future – and reveal some very personal achievements too!

Find out more: www.kidneyresearchuk.org

Q

Q

I’ve worked in the charity sector for most of my working life but this job appealed to me because it offered the opportunity to work for a medical charity that was purely concerned with research. I was also drawn to the fact that it focuses on a disease that has an enormous and often devastating impact on people’s lives but doesn’t necessarily have the same profile as other conditions.

So having the chance to work somewhere that aimed to really improve the prospects for people with kidney disease was very interesting role.

We’re spending more money on research; that’s the biggest shift. We said we needed to and we’re doing it now and that’s partly because we’re raising more money and partly because we’re focusing very carefully on managing spend. This joint increase in giving more awards and funding more projects is a direct result of the hard work from every team in the charity.

It is almost four years since you joined the charity. What made you first apply for the role of Chief Executive?

I remember initially visiting the office, still just exploring the possibility of joining the charity, but as soon as I met the team and the then Chairman Professor Tim Goodship and understood the challenges that the organisation was facing I got really fired up.

So when it came to the formal interview I knew I really, really wanted the job.

What are the main changes that you’ve seen in the charity and in the renal community as a whole over the past three years?

Funding more research was clearly one of the main challenges that we needed to tackle.

We’ve taken the first step in that direction and it’s a good direction to be travelling in but there’s still more to do. There’s an awful lot of research that we are still having to say ‘no’ to when we should be saying ‘yes’.

Another noticeable difference is that we now work more collaboratively across the renal community – and I think we’ve played quite a big part in bringing about this closer working.

THE BIG INTERVIEW // P07 I care deeply that we should all have a fair and equal chance in life, and I worry about some aspects of inequality in the world of renal disease. Some people have worse prospects than others, and if we can do anything to improve that we must. I hope that our renewed focus on the strategy to address inequalities will mean better prospects for all kidney patients.

We’ve done a lot of fine tuning and refining how the charity works over the past four years and we’ve got fantastic people here doing amazing work. Now I want to really turn up the volume and the speed.

Let’s continue to seek more funding to start projects sooner, let’s continue to engage government support to help us remove some of the obstacles in the way of research.

Sandra Currie, Deborah Bakewell, Mike Nicholson and Lauren Laverne

The recently launched UK Renal Research Strategy is a great example of this. It’s the right thing to do for patients and for progress in delivering better kidney health care – and the research aspect of that is critical.

We might be a relatively small charity compared to some of the larger UK research charities but our work has a global impact too, which benefits people in the UK and overseas.

That feels good.

Q

Are there any recent research advancements or achievements that stand out for you particularly?

None of our research is quick; I’ve grown to understand that – and it’s not always about the size of the investment either. Sometimes we can make a small investment which results in a massive result many years later. Professor Goodship’s work on the drug, Eculizumab, is a good example of this. That research only has an impact on a small number of people with atypical Haemolytic Uraemic Syndrome (aHUS), but the impact on their lives is huge.

Our investment all those years ago shows the value of making the right decision when people approach us for funding.

Professor Mike Nicholson’s pioneering warm perfusion technique is having a very direct effect on patients who are now able to have a kidney transplant when they would otherwise have still been on the waiting list.

The impact of this research is tremendously far-reaching.

All of our research projects are very different and each one is of significant importance to the people who could benefit from them. I always love it when I hear that someone has found something or published something – even if it asks more questions than it gives complete answers – because it still takes us up to the next rung of better understanding.

Q

You’re very passionate about keeping patients at the forefront of everything we do. Do you think your experience as a nurse at the start of your career has contributed to this passion?

There’s no doubt that my nursing experience gave me an early insight into the impact that a long term or life-threatening condition can have on the patient and the people around them, but I also think empathy comes from being part of a family. You learn that in life – you don’t ever want yourself or a loved one to be simply regarded as a statistic. We quote statistics about kidney patients but I never forget that each statistic is a person, an individual person.

I fundamentally believe that patients give enormous value to every stage of research and I’m pleased to see that we’ve been able to really accelerate our work with patients over the past four years. We’ve now got a much deeper and broader patient involvement across everything we do and it’s adding significant value to how we do things. We’ve got a good balance of patients on our trustee board; patients are now much more active on our lay advisory committee, they’re involved in project teams and they advise us on how to set up research protocols.

Q

What are your hopes for the next four years and beyond?

I want to stop saying ‘no’ to really high quality research. Every time we put out a call we get more high scoring applications than we can fund and it troubles me that we might be saying no to something that really would make a huge difference to somebody’s life. If we want to be able to say ‘yes’ to all high-quality research we need to raise more money and we need to work more effectively with partners who can help us fund or co-fund some of the work.

Let’s do things quicker; let’s be less patient on behalf of patients and speed things up.

Q

Finally, on a very personal note, have you made any changes to your life over the past four years?

Taking inspiration from research that highlights exercise as a key component for kidney health, I recently learned to swim. A less than supportive teacher had once persuaded (shouted at me actually) me that I would never do it but I’m pleased to say that I’ve proved him wrong. I’ve also taken up dance as another way to keep fit and I’m totally hooked.

It’s tremendous fun – and it gives me a great excuse to buy shiny shoes!

There’s an awful lot of research that we are still having to say ‘no’ to when we should be saying ‘yes’.

c You can read the UK Renal Research Strategy on our website www.kidneyresearchuk.org/file/ research/uk_renal_research_ strategy.pdf c Find out more about Professor Tim Goodship’s work on atypical Haemolytic Uraemic Syndrome (aHUS) on our website www.kidneyresearchuk.org/ research/case-study-ahus c Find out more about Professor Mike Nicholson’s normothermic perfusion technique on our website www.kidneyresearchuk.org/research/ case-study-mike-nicholson

Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

TAKING A HOLIDAY ON DIALYSIS – ADVICE S T N IE T A P Y E N ID K R FO can be stressful, but what is it like if We know that planning any holiday y be overwhelmed by the thought. you are on dialysis? Many patients ma Peritoneal dialysis patients can holiday just about anywhere. You can arrange for bags of fluid to be delivered to your holiday destination either through your Unit or by speaking to the company that supplies your dialysis fluid.

If you have haemodialysis, provided that you are free of any infections, your dialysis can be carried out in most units within the UK. You just have to ensure that you choose a holiday close to these units. However, space limitations may make this a problem in terms of dates and timings so it is best to check before you travel.

Haemodialysis can also be arranged in many European countries and in countries where there is a reciprocal agreement with the UK. There are some exceptions so it is best to check with your Unit before booking. In some parts of Australia and New Zealand there is no charge for haemodialysis, but be aware that there is a charge in the USA. You should also be aware of the higher risk of infection in some areas and you should discuss the implications of this with your Renal Unit.

Not all holiday dialysis is in a hospital and some hotels are able to provide a dialysing facility.

The British Kidney Patients Association has some units with facilities that are all-inclusive, providing accommodation for the whole family as well as dialysis. You can find more information on their website: www.britishkidney-pa.co.uk/ holidays Provided you have informed your home dialysis unit before you travel your holiday dialysis unit will have received your latest blood figures; the hours spent on dialysis; the type of dialyser used; a list of drugs taken; and any particular problems relating to your health in time for your arrival. And of course, remember to inform your travel insurance company.

Source: University Hospitals Birmingham

Find out more: www.kidneyresearchuk.org

SPECIALIST TRAVEL INSURANCE ADVICE FOR PEOPLE WITH KIDNEY DISEASE Why do I need specialist travel insurance?

Most standard travel insurance policies do not cover chronic kidney disease, which means you would not be able to claim if you needed emergency treatment abroad or if you had to cancel your trip because of your condition. A specialist policy such as Free Spirit will cover your medical condition(s) subject to medical screening, so that you have full protection both before and during your trip. As with all policies, terms and conditions will apply so you will need to read the policy wording.

What is medical screening and why do I have to go through it?

Medical screening provides the insurer with all the relevant facts to make a decision on whether they can offer travel insurance. It is used to calculate a risk score, which is then used by the insurer to determine whether they will cover you and on what terms.

What medical screening questions will I be asked if I have chronic kidney disease?

How often are you being monitored for your kidney problem?

Are you on dialysis?

Are you awaiting dialysis or a kidney transplant?

How many medicines do you take for this condition?

Have you been referred to a kidney specialist?

It is very important that you answer the questions as accurately as you can to ensure that you are covered. If you do not answer the questions, correctly, it may affect any claim.

HEALTH & LIFESTYLE // P09 Do I need to provide a doctor’s letter to say I am fit to travel?

For certain medical conditions (such as terminal and life limiting conditions), insurance providers will ask for a letter from your GP confirming your diagnosis and that you are fit to travel.

Will my medical condition(s) affect the cost of my travel insurance?

The cost is likely to be higher than for someone without medical conditions but it can be less expensive to get travel insurance cover for some countries due to varying healthcare costs. For example, France may be cheaper than Spain, and Australia significantly cheaper than the USA or Canada.

I am on a kidney transplant waiting list, can I still get cover?

Most specialist providers such as Free Spirit, will be able to offer cover. You will need to let your transplant coordinator know that you are going on holiday and they will temporally remove you from the list until you return from the trip.

We have teamed-up with Free Spirit, a specialist travel insurance provider who, for all Update readers, are providing a 15% discount on travel insurance policies. To claim this offer simply call 0800 170 7702 quoting KRUK or visit www.FreeSpiritTravelinsurance.com/ medical-conditions/kidney and use promo code KRUK.

I am taking medication to control my chronic kidney disease. Do I need to declare it?

Even if your condition(s) is under control with medication, you still need to declare it. The insurer may ask you about your medications and whether they have changed recently.

Can I get insurance without covering my chronic kidney disease?

Some insurers will issue you with a policy that excludes “anything directly or indirectly related to your medical condition”. However, it is strongly recommended that you do not travel without full cover.

Oven-baked chicken with chorizo and artichokes The fantastic Ainsley Harriott has provided us with this one-pot wonder that gives loads of flavour for minimum effort and is guaranteed to wake up your taste buds. If you don’t have a suitable casserole dish, use a large frying pan, then transfer the contents to a roasting tin and cover loosely with foil.

Ingredients

Comments from Harriet:

1 x 300g (11oz) jar artichoke hearts in olive oil 25g (1oz) butter c 4–6 boneless chicken breasts, skin on c 1 large onion, finely chopped Serves c 2 garlic cloves, crushed 4 c 100g (4oz) chorizo sausage, sliced c 350g (12oz) long grain rice c 150ml (¼ pint) dry white wine c 600ml (1 pint) chicken stock c leaves from ½ x 20g(¾oz) packet fresh flat-leaf parsley, roughly chopped c salt and freshly ground black pepper

Harriet Williams Renal Dietician and Chair of the Renal Nutrition Group, tells us how to make it more kidney patient friendly.

c c

Method Step one: Preheat the oven to 180ºC/350ºF/gas 4. Drain the oil from the jar of artichokes and add 1 tablespoon to a flameproof casserole dish. Add half the butter, then place on the hob to heat. Season the chicken breasts, add to the dish, skin-side down, and cook for 2–3 minutes until lightly browned. Turn over and cook for another minute or so. Transfer to a plate and set aside.

Step two: Add another tablespoon of the artichoke oil to the dish with the remaining butter, then tip in the onion and garlic. Sauté for 2–3 minutes until softened but not coloured. Add the chorizo and rice and cook for another 2 minutes, stirring until the chorizo has begun to release its oil and all the rice grains are well coated.

Step three: Pour the wine into the pan, stirring to combine, then add the stock and fold in the artichokes. Arrange the chicken on top, pushing the breasts down into the rice. Cover and bake for 35–40 minutes until all the liquid has been absorbed and the chicken and rice are cooked through and tender. Scatter over the parsley and serve.

This recipe provides a whopping 14.8g of salt, that’s 3.7g salt per portion as it contains three high salt ingredients. Salt contents of different products will vary slightly but here is a rough guide showing where this comes from: cA rtichoke hearts – 5.4g (where salt

has usually been added to the oil) cB utter – 0.5g cC hicken breasts – 0.8g cO nion and garlic – less than 0.1g cC horizo – 3.5g cR ice – Less than 0.01g cS tock cube – 4.5g

Almost everyone with kidney problems will be advised to cut down on salt to less than 6g a day to help control blood pressure and avoid problems with fluid retention.

This recipe could be adapted to lower the salt content: cU se a small (200g) jar of artichoke hearts, and instead

of the extra artichoke add a red or yellow pepper.

cR eplace 50g (2oz) of chorizo with other flavourings

e.g. ½ level tsp of chilli powder and ½ level tsp smoked paprika.

cL ook on food labels to find stock cubes with the

lowest salt content.

Artichoke hearts are a high potassium vegetable, but on the whole this recipe is ok for people advised to follow a low potassium diet as it’s served with rice (which is very low in potassium).

Call our donation line: 0800 783 2973

FOCUS ON... // P10

We’re getting our voices heard In 2014 Kidney Research UK made a strategic decision to start vital conversations with policy makers across the UK Laurence family attending our House of Lords reception, January 2016

We decided that we needed to bring the whole issue of kidney heath to the attention of politicians across the UK. They needed to know the full extent of the UK kidney health problem; they had to understand the urgent need for increased investment in renal research and the equally important need to speed up access to new life-saving and life-improving treatments for kidney patients. And we needed to show them that we had the expertise and credentials to help them bring about change for the better.

This important relationship-building and influencing work is known as Public Affairs.

Although still a relatively new activity for the charity, we have already started to make significant progress in a variety of ways. Update magazine recently caught up with Director of Communications Peter Storey to find out more.

“We want politicians and policymakers to see renal research as a national priority,” says Peter. “We can only achieve this by talking to them, so one of our first tasks in Public Affairs was to think about how we would actually start this conversation.

Find out more: www.kidneyresearchuk.org

“We wanted politicians to truly understand what kidney disease really means and why research is so important. We knew just how expensive kidney disease was to the health service and we knew that there were a lot of arguments to be made about how innovation in renal research – for example finding ways to prevent or delay people from starting renal replacement therapy – could drive down costs in the NHS and improve the lot of the kidney patient. We also knew we had a wealth of scientific, clinical and patient expertise that could help to bring about change. We certainly had a lot to shout about!

“The next step was to learn who to talk to, which is something we are still learning.

However, we’ve already been able to forge some really good relationships with a number of parliamentarians. We’ve been invited to their offices and constituency events, they’ve visited our shops, we’ve spoken to them on renal wards and they’ve written newspaper articles about our work.

“We’ve met all three Ministers for Public Health in England, Scotland and Wales, we’ve run three parliamentary receptions,

We’re now being recognised as a go to authority on a number of issues in renal and we are involving the right people – patients and renal experts – in those conversations. two in Holyrood (The Scottish Parliament) and one in Westminster and we’ve been engaged in all sorts of policy initiatives – all in a space of just over 12 months.

“The House of Lords reception was a tremendous success and the attendance far exceeded our expectations. We’re now planning follow up meetings with MPs whose interest was sparked by that meeting and we’re going to run similar events in Wales in July and in Scotland in September.”

FOCUS ON... // P11

Maureen Watt MSP, Minister for Public Health, Scotland (pictured with Peter) pledges to raise awareness of the importance of organ donation in her area

Mark Drakeford AM, Minister for Health and Social Services, Wales pictured helping out at our Cardiff Shop

Great work by these Birmingham community peer educators on organ donation @Kidney_Research bit.ly/1z3psEX Jane Ellison MP @JaneEllison

Peter believes that one of the key factors in Public Affairs is to be able to identify specific issues that may start the initial conversation.

“We’ve found that our work on health inequalities has attracted a lot of interest from parliamentarians. In particular, our award-winning peer educator projects in Birmingham and Scotland are seen as pioneering. These projects are raising awareness of the increased risk of kidney disease amongst Black, Asian and minority ethnic communities and encouraging greater organ donation amongst these groups. Politicians don’t want to just simply hear about this work – they really want to get involved,” he says.

He also believes that our combined patient, clinical and scientific expertise and our close working relationships with other professional organisations is a major strength. It means that politicians are increasingly recognising our credentials as an important resource that can be consulted when shaping new health policy.

“A major part of our Public Affairs work involves us galvanising our stakeholders and

Members of our Peer Educator team and the Scottish Parliament join Peter at the Holyrood Reception in February 2015

friends to talk on behalf of the charity which increases our credibility and our clout,” says Peter. “We’re now being recognised as a go to authority on a number of issues in renal and we are involving the right people – patients and renal experts – in those conversations.

“We were invited to give evidence at the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care on the government’s planned Care Data initiative. The scheme, which aimed to gather anonymised patient data from GP surgeries, was somewhat controversial but we were able to give evidence there and put a view across. We talked about work that we had funded that relied on the use of anonymised patient data and we illustrated how access to much bigger samples of such data could help us accelerate research.

“We’re increasingly providing expert opinion to the public bodies in England, Scotland and Wales that approve the use of drugs and other treatment techniques. Once again we pull in the expertise from clinicians and patients to help us work on these submissions.

“For example, we were asked to comment on the National Institute for Health and Care Excellence (NICE) review of the drug, Eculizumab, to treat atypical Haemolytic Uraemic Syndrome (aHUS). Similarly, we commented on the NICE and Scottish Medicines Consortium review of the drug Tolvaptan as a treatment for autosomal dominant polycystic kidney disease (ADPKD).

We threw a lot of time and energy into making submissions about these drugs and were delighted when NICE approved them both. Unfortunately the Scottish medicines consortium rejected Eculizumab – which just goes to show you can’t always win them all.

“It’s still early days for our Public Affairs work and we’re still learning as we go along but I’m delighted with the progress we’ve made so far. We’re definitely beginning to interact with the people who really matter.”

Turn back to page three to find out more about our House of Lords reception.

Call our donation line: 0800 783 2973

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you World-renowned scientists, supported by you, are fighting kidney disease and its many associated conditions on all fronts.

In this issue we’re focusing on the ground-breaking research that’s being carried out at the University of Bristol and taking a closer look at three specific projects.

Bristol Renal is a diverse team of scientists, adult and paediatric doctors, students and technicians who share lab space, knowledge and research findings. They aim to improve the management, treatment and prevention of renal disease, especially kidney diseases which are characterised by abnormal amounts of protein in urine.

By studying the disease at molecular level and working with kidney patients in hospitals and clinics they aim to develop new treatments that will ultimately save lives and greatly improve quality of life for adults and children.

Unlocking the secrets to a debilitating disease A protein called INF2 will be at the centre of new two-year study which aims to better understand the workings of a rare kidney disease called Focal Segmental Glomerulosclerosis (FSGS).

FSGS is one of the leading causes of kidney failure in children and many patients have to rely on dialysis to stay alive.

FSGS damages specific cells of the glomerulus (a cluster of microscopic blood vessels in the kidney that help to filter waste products from the blood) called podocytes. The disease is known to be triggered by mutations in several proteins in the podocyte (including INF2) but it is not known what the mutations actually do to the cell to cause the damage.

We have given a £129,834 Research Grant to Dr Gavin Welsh and Professor Moin Saleem to investigate further.

Building on the findings of an earlier Kidney Research UK-funded study into INF2, they will explore how the different proteins interact and bind with each other by testing normal and disease causing mutant INF2 using specially grown human podocyte cells.

Right now, the lives of over three million people in the UK are threatened by kidney disease.

Please help us fund even more ground-breaking research into better prevention, treatments and ultimately a cure.

By gaining a clearer understanding of the disease they hope to pave the way for further research, using data from all FSGS patients nationwide, that could help to identify new and effective treatments.

Visit: www.kidneyresearchuk.org/support-us

Call: 0300 303 1100

Image showing the INF2 protein in human podocytes

Find out more: www.kidneyresearchuk.org

RESEARCH ROUND UP // P13

New discovery could lead to diabetic kidney disease breakthrough Researchers at Bristol University may have uncovered an entirely new way to treat diabetic kidney disease.

A three-year study, conducted by Dr Becky Foster, PhD student Sara Desideri, Dr Andy Salmon and Dr Simon Satchell, has shown that a growth protein called Angiopoietin-1 can repair and protect kidney blood vessels damaged by diabetes in a matter of minutes.

A new project, which parallels the Angiopoietin-1 study, will be examining another potential way to prevent kidney function decline and repair existing damage caused by diabetic kidney disease.

Diabetes is the leading cause of kidney failure in the UK. 1.16million people – nearly half of all diabetics – will get kidney disease. This is because the kidney blood vessel walls, including the innermost protective lining (called “endothelial glycocalyx”), get damaged, allowing a protein called albumin to leak into urine.

Dr Simon Satchell and his team have also been investigating how diabetic kidney disease (diabetic nephropathy), causes damage to the tiny blood vessels that make up the kidneys’ delicate filtering system.

They have discovered that particular enzymes cause loss of a certain protein (called syndecan 4), which is a vital component of the endothelial glycocalyx – the innermost protective lining of the blood vessels.

Research has already shown that blood vessel linings elsewhere in the body can be repaired by certain molecules so we gave the team a £77,648 Research Grant to investigate whether kidney blood vessels (known as glomeruli) could also be repaired.

Their study revealed some astonishing findings: c I n tests on human glomerula cells, Angiopoietin-1 triggered the production of the protective lining rapidly. cW hen Angiopoietin-1 was tested on diabetic rat kidneys the protective cell linings – which had been greatly reduced by the disease – appeared to be restored. This restoration also seemed to prevent further albumin leakage.

Slides showing how protective cell linings in diabetic rat kidneys appeared to be restored after treatment with Angiopoietin-1

We have now given them a £234,739 Research Grant to investigate whether restoring the protein and preventing its loss in diabetes can protect the glycocalyx, prevent protein leakage and so protect the kidneys from kidney failure.

Over the next two years the team will test the benefits of protecting or restoring syndecan 4 on human kidney cells and in diabetic mouse kidneys.

c S ara was able to formulate a method (assay) to measure tiny leakages of albumin which can now be used to measure miniscule changes in healthy and diabetic human kidney glomeruli.

This project has now paved the way for further work to investigate exactly how Angiopoietin-1 is able to restore protective cell linings. This could lead to the development of new treatments for diabetic kidney disease and possibly several other diseases.

New study aims to shed further light on our understanding of diabetic kidney disease

They hope their study will bring us closer to developing new treatments that are desperately needed for patients affected by diabetic nephropathy.

Human glomerular cells treated with Angiopoietin-1

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FOCUS ON... // P14

Keeping us on course for a brighter renal future Ten dedicated volunteers make up our board of trustees. Working with our Chairman, Professor John Feehally, they are responsible for overseeing the charity’s long-term direction.

They ensure that we are constantly working towards our planned objectives and are complying with all legal requirements.

Collectively, they offer support and guidance and a wealth of experience from a wide range of personal and career backgrounds.

“I come from a creative background so I’m very much into brainstorming and ideas generation. I like to keep abreast of popular culture and new trends and I’m a bit of a sponge when it comes to information gathering, so I’m always trying to think of fresh ideas that could help the charity.

“It’s also a really interesting learning experience for me too. It’s still very early days but I’ve already learned a huge amount.”

In addition to her official trustee duties, Anna-Maria will also be welcoming out #TEAMKIDNEY members home at the end of the iconic Great North Run in Newcastle in September.

I’m very proud to be able to play my part in helping to ensure that there’s a great future for renal research.

Anna-Maria Steel

Anna-Maria Steel

Anna-Maria Steel and Federica Pizzasegola joined our board of trustees in September last year. We caught up with them recently to find out how they are getting on and why this role is so important to them.

Newcastle resident Anna-Maria Steel is an accomplished project manager and has worked in publishing, multimedia and event planning.

She’s also a busy mum of three who has firsthand experience of kidney disease.

“I was diagnosed with Familial Focal Segmental Glomerulosclerosis (Familial FSGS) in 2004 and received a kidney from my husband Robin in 2014,” says Anna-Maria. “So I’d like to think that I can bring a patient’s perspective to my trustee role as well as my career skills.

“It’s an exciting time to be a trustee for Kidney Research UK,” says Anna-Maria.

“There’s so much potential now for treatment advancements and the charity is also working really hard to support the next generation of researchers into the field so that they can continue the good work already being done and, through their efforts, further the fight against kidney disease. I’m very proud to be able to play my part in helping to ensure that there’s a great future for renal research.”

London-based chief operating officer Federica Pizzasegola has many years of experience in the oil, banking and insurance industries, and has also volunteered for several charities. The part-time Biomedicine Degree student is also passionate about research so when she decided to embed herself further in charity work and seek a trustee role we proved to be the perfect fit.

Federica Pizzasegola

“I was really drawn to Kidney Research UK’s dynamism and innovation.

I was excited by the teamwork, the leadership and the focus on medical research,” says Federica.

“Volunteering is very important to me and the spirit of the charity makes me feel that I can actually help to make a real difference.

“I hope to use my knowledge of the corporate and charity sectors to support the charity because, in my experience, they often experience similar trends and issues.”

“Science is my passion,” adds the busy mum of two. “I really want to understand medical research and bring this understanding to my trustee role so I can get a clearer insight into the issues we face in renal medicine and how our research is addressing these issues.

“I recently visited a laboratory in Cambridge and it felt wonderful to really understand the work our scientists are doing and the techniques they’re using.”

Despite all of her other commitments Federica found time to cheer on some of our #TEAMKIDNEY runners at this year’s Virgin Money London Marathon.

“I was extremely inspired by the runners,” says Federica “I used to be a runner myself so now I’m seriously considering joining #TEAMKIDNEY too!”

Volunteering is very important to me and the spirit of the charity makes me feel that I can actually help to make a real difference.

Federica Pizzasegola

TO FIND OUT MORE ABOUT OUR TRUSTEES VISIT OUR WEBSITE: WWW.KIDNEYRESEARCHUK.ORG/ABOUT-US/OUR-PEOPLE

Find out more: www.kidneyresearchuk.org

YOUR YOURMESSAGES MESSAGES// //P15 P15

Stay in touch We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or e-mail: update@kidneyresearchuk.org.

Star Tweets

Just wanted to say a big thanks to you and the team.

You have been really helpful. As you know I have done a couple of Marathons and I can honestly say the reception I received yesterday was the best. Everyone was so kind, could you pass my thanks on to Sandra Currie for coming along and taking the time to speak with everyone. Not many people in her position would have done that. I know from experience. My legs are tired but apart from that I am feeling fine. Still raising as much money so hopefully will manage to reach £1,000. It’s not a huge amount but hope it will help in some small way for a very worthwhile charity. Thanks again. Adrian Bines, via email You guys do such a great job (understatement) organising events like today to raise money and my wife and I have experienced the worth of the fundraising first hand and for that we’ll always be grateful. I know we run today but you guys are the real stars working and striving to help those who need it continuously. Adam Brock, via email

Kidneyversary biscuits made with mummy 2 take to school.

2day sydney kidney is 2yrs old @Kidney_Research Ella Chadwick @Ellachadwick1

@Kidney_Research we cycled to Paris for Kidney Research BX 2 Paris @BX_2_P

Did someone say diet? Cake sale at work today for my #vlm2016 efforts @Kidney_Research#bakeforbaggers Laura Bagshaw @LorLorB20

Star Facebook posts Survived the gruelling Inca trail! Was almost defeated by Dead Womans Pass at 4,200 metres but I did it! An amazing place.

Sal Daw, via Facebook

This is my sister, my friends and me taking part in a three lakes challenge to raise money for Kidney Research UK on Saturday we did 16 miles around three lakes in 8 hours Laura Spencer-Thompson, via Facebook

Call our donation line: 0800 783 2973

Help us build a better future for

Joshua

Five years ago my son, Joshua, was diagnosed with Chronic Kidney Disease. He is only nine-years-old and has been in and out of hospital his whole life.

“It’s only a matter of time before Joshua’s kidneys fail and he needs a transplant or dialysis. I hope that when that day comes there will be more treatment options and a better outlook for Joshua. We don’t know what the future holds for him, but with your support we can help Kidney Research UK fund more breakthroughs in research to help children like Joshua.”

Thank you,

Please complete the form on your letter 0300 303 1100 www.kidneyresearchuk.org/joshua

Registered Charity No. 252892, Scottish Charity No. SC039245