For information & support

Team from Kidney Care UKHead Office: 01420 541424Wales Advocacy Officer: 01656 514776E: Linzi.Isaac@kidneycareuk.org

Team from Kidney WalesT: 02920 343940E: team@kidneywales.cymru

Team from Paul Popham Fund T: 01792 654182E: enquiries@paulpophamfund.co.uk

On 30 May Renal Youth Worker, Shaun Thomas, led a team ofpatients and healthcare professionals to cycle virtually (using exercisebikes at their homes) the 120 miles between the dialysis units in SouthWales in order to raise awareness of kidney disease.The heroic team of renal warriors raised £1525 for Kidney Wales, Kidney Care UK andPaul Popham Fund. Well done and thank you!

The Big Virtual CycleFundraiser!

Indian SpicedBaked Beans:INGREDIENTS

● 1 teaspoon cumin seeds● 1 teaspoon curry powder● 1 tablespoon olive oil● 1 red onion, finely chopped● 2 garlic cloves, finely chopped● 1 red chilli finely chopped

(or ? teaspoon chilli flakes)● 2 x 400g tins of baked beans● 4 slices of thick sourdough toast

(or just your normal bread)● 1 handful of fresh coriander

(optional)● 10g unsalted butter● Black pepper

METHOD1. Heat the oil in a frying pan, once hot add the

cumin seeds and curry powder cooking for 1minute being careful not to burn the spices.

2. dd the onion, garlic and chilli and cook until soft.3. Then add the baked beans and stir to combine.4. Toast and butter the bread.5. Serve the beans on top of the buttered toast.6. Top with the chopped coriander and black pepper

to taste.For more kidney-friendly recipes visitwww.kidneykitchen.org

Kidney Care UK have launched new recipes as partof the Kidney Kitchen initiative. These have beenspecially put together for people to makeusing store cupboard ingredients during thelockdown. Try this tasty lockdown version ofIndian spiced baked beans!

We can help!The Paul Popham Fund, Renal Support Waleshas a team of volunteers available to deliveressentials and prescriptions to people withkidney disease under Swansea BayUniversity Health Board.

If you are a person who iscurrently having to shielduntil the 16th August,thecharities volunteer teamare available to collectessentials from your localsupermarket and will arrange foryour prescription to be collected from the RenalPharmacy Team.This service is currently onlyavailable under Swansea University Health Boardand covers from Llantrisant to Aberystwyth.

If you are a shielding and have no one to helpcollect essentials, then please call us now forsupport on 0800 038 8989or email: support@paulpophamfund.co.uk

The Journey of the Kidney Communityin Wales during the CoronavirusBreakout and LockdownThe Paul Popham Fund, are creating a dailyjournal of the journey and challenges thatthe Kidney World in Wales faces andovercomes during the Coronavirus lockdown.

They want to record what happened, how theKidney Community in Wales dealt with it andhow we lived through it - the Charity want tobe able to look back on this, reflect and sharefor future generations. The Charity would likeanyone from Wales’ Kidney Community tocontribute in whichever way they would like:it could be a diary journal you would like toshare, an activity you did, something you havelearnt, how you felt, how you overcame thelockdown ,how you overcame the virus.

All photos, videos, poems and stories arewelcome. The Charity will co-ordinate thejournal entries, send them with the datecreated too: hayley@paulpophamfund.co.uk

Recipe of the week!

Kidney patientCovid-19 update

Welcome to the fourth edition of yourkidney patient newsletter. As the first stepstowards lifting the Coronavirus lock downmeasures have begun, this issue highlightsthe changes that affect people with kidneydisease and looks at some of the key issuesas we move forwards.This newsletter has been compiled by Kidney CareUK, Kidney Wales, Paul Popham Fund, the WelshClinical Renal Network which oversees services foradult kidney patients in Wales and the WalesKidney Research Unit (an All-Wales strategy forthe study of diagnosis, prevention, treatment andsocial context of kidney disease) and the All WalesHealth and Wellbeing Reference Group (aninitiative to support professionals allied tomedicine in their important role in deliveringkidney patient health and social care).

We value your opinion and would welcome yourfeedback on the content, what you would like tosee now and in the future. This is your newsletterand it is important that it works for you. You canfeedback through your kidney care team or bycontacting any of the charity providers on thedetails below.

Please help us in continuing to thank ourrenal health and social care workers bysharing your stories, photos, artworks,poems with us. Specially designedcertificates of thanks are available from us- send one to someone who deserves aspecial mention today. We will publishthem online and on our social media.

This newsletter is available in Welsh. Ask amember of your kidney care team if you wouldlike a copy in Welsh.

Shielding up-dateOn Sunday 31 May Welsh Governmentannounced a relaxation of the lockdownmeasures for people who have beenshielding during the pandemic.The new advice says:● Outdoor exercise is unlimited, as long as

individuals strictly follow social distancingrules and hygiene practices

● Those who are shielding can meet outsidewith people from another household - butshould not go into another person's houseor share food with them

All people who are shielding will receive a letterfrom the Chief Medical Officer for Wales before15 June setting out the next steps to confirmthat shielding will be extended to 16 August.

The change in advice for Welsh patients who areshielding has understandably caused concern forsome. It’s important to remember that thegovernment is trying to find the right balancebetween keeping you safe from coronavirus andallowing a quality of life that is manageable.There isn’t a lot of scientific evidence to guidethem as the disease is very new and not likeones we’ve seen before, and therefore thechanges being suggested are only small at themoment.

On 9 June Kidney Wales hosted a Facebook LiveQ&A with Dr Mike Stephens, ConsultantTransplant Surgeon https://www.kidneywales.cymru/news/2020/06/01/shielding-people-kidney-disease-nextsteps/],

to help understand the changes and what theymean for kidney patients and families.

The key messages from Dr Mike were:

● Until there is a vaccine or an effectivetreatment, the only thing we can do is toavoid getting Coronavirus. The priority is toprevent transplanted patients, olderpatients, and older transplanted patientspicking up the virus.

● The advice for shielding is clear: stay athome, with the exception of keeping a socialdistance of 2m for exercising outdoors andmeeting another family outside. You mustnot go into other people’s houses.

● Following advice on shielding and handhygiene can keep your risk of Coronavirusreally low. However shielding is difficult todo in practice and so a balance must befound with what is achievable and gives youan acceptable quality of life. Stick at it - thiswon’t last forever.

● You are advised to wear a mask when youare out of the house and in any area wherea social distance cannot be maintained.Request your mask from Kidney Wales here!

● The decision on whether your child(ren)return to school must be your decision,based on what you know about your child,yourself and your circumstances. If you areshielding and there is a realistic option tonot send your children back to school at thisstage, that would be reasonable.

● Most transplant units across the UK arelooking at how to re-open in a phased way,with priority given to the lowest riskpatients. For Welsh patients, transplants areeither done in Cardiff or Liverpool.

● The vaccines that are being tested at themoment are not live vaccines and so wouldbe safe for transplant patients.

● If you’re asked to come to hospital, pleasebe assured that effective measures are inplace to ensure it is safe to do so.

If you have doubts or questions, ask your kidneyteam who know you, your condition and yourpersonal circumstances and will be able to giveyou the best individualised advice. Also take alook at the Kidney Care UK guidance onCoronavirus for people with kidney disease.

The kidney charities have also written to theWelsh Government Minister for Health and SocialServices to ask for clarification on what theshielding changes mean for with regards tocontinued access to food boxes, support formental health, changes to employment and thefurlough scheme, and children and young peoplereturning to school from 29 June. Moreinformation will be provided as soon as aresponse has been received.

Here’s a picture of one of our weekly meetingsto produce the newsletter!

ISSUE 4

JUNE 2020

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Linzi Isaac, Wales Advocacy Officer forKidney Care UK, offers the benefit of herexperience of supporting many kidneypatients with Personal IndependencePayment (PIP) applications:If you are due for a review or reassessment ofPersonal Independence Payment (PIP), or anyother benefit, between 24th March and 24thJune 2020; your award will be automaticallyextended to receive support at your current rate.

People making a new claim for PIP can still doso in the usual way by phoning the DWP on0800 917 2222 to request an application form.

Once you have completed your applicationform and sent off supplementary evidence, youwill be given a date for your healthassessment. For the time being, face-to-faceassessments for sickness and disability havebeen suspended. Many people who have madea new claim for PIP have been receiving theirassessment in the form of a phone call toprevent further delay to much needed financialsupport. You will receive your decision letter4-6 weeks after the assessment. If you do notagree with this decision, you are still able toappeal in the usual way, which will be detailedin the letter.

The first stage of appealing is called aMandatory Reconsideration (MR), which canbe requested over the phone. It is stronglyrecommended that you send furtherinformation as to why you disagree with theirdecision, a letter of support from a clinician ormember of your renal team is an excellentexample. The MR process is paper-based andwill not require a further health assessment.If you are still not satisfied after the seconddecision letter, there is the option to progressyour claim to tribunal.

Claiming for a welfare benefit can feel verydaunting and you can ask for help at anystage of the process. Sometimes it can be assimple as talking it over with someone beforeyou begin completing a form. Your renal socialworker or youth worker can help you gathersupport letters and provide advice on theprocess. Your Kidney Care UK advocate canalso advise on the process and providepractical support in filling out the forms, alongwith tools on how to provide all theinformation and evidence needed to supportyour claim or appeal.

Here is Caron Jones,Renal Social Workerattached to WrexhamMaelor, describing herexperience ofsupporting a patientwith a PIP Tribunal:

“When a mandatory reconsideration is turneddown, the claimant has the right to appealand their application for PIP or AttendanceAllowance be considered by an IndependentTribunal. Again, this must be done within onemonth of the date on the notification letter. Atthis stage the claimant can nominate a person

to represent them (friend, family member,renal social worker, kidney care advocate...whomever best placed to advocate for them).

Normally the Appeals Service requests claimantsand representatives attend in person.Currently, due to COVID-19, the process haschanged. Appeals are being considered overthe phone. Last week I represented a personwhose claim had been turned down in 2018.

Unfortunately the claimant was unwell, unableto make the conference call. There were 3people on the tribunal panel: GP (medicalexpert), Solicitor (legal expert) and a personwith knowledge/experience of illness anddisability. Due to COVID-19 each person onthe panel was working remotely. A week priorto the tribunal I forwarded further supportingmedical evidence, highlighting recurrentinfections, hospital admissions and on goingsupport provided by Medical Team, RenalPsychologist and Renal Social Worker.

Each member of the panel asked questions...why there were gaps in the data provided,how the claimant managed to work, how longI had known the claimant, clarification ofmedical procedures and treatment. As is thecase for many people living with a chronicillness, I stressed the impact of on-goinginfections and fatigue and the psychologicalimpact this has on a person.

As the claimant was not present, members ofthe Panel could not share their decision. Theyawarded the allowance, backdated to 2018,and informed the claimant by letter.

Please take advice and support if your claimis turned down”.

“Volunteers don't get paid, notbecause they're worthless, but becausethey're priceless.”Volunteers' Week took place in the first week ofJune and was a chance for the kidney charities tocelebrate and say thank you for the contributionof the volunteers who support our work. Amassive diolch yn fawr from us to you!

Here are just a few of the volunteer heroes forour charities:

Paul Popham FundPeer SupportService - thanksto our volunteerbefrienders!

At the Paul PophamFund, Renal Support Wales the charityrecognises the support they and their beneficiariesreceive from their volunteers, they could not carryout our work during this time if it were not forthem who themselves are also shielding.

The Charity runs a Peer Support Service(Befriending Service) where people with kidneydisease or family members volunteer to becomePeer Mentors (Befrienders) where they are trainedto offer advice and support to people like them.

The Charities’ Peer Mentors are matched topeople with kidney disease seeking advice basedon having similar circumstances as each other sothat the Peer Mentor is best able to understandthe situation of the person with kidney failureand able to offer support based on their livedexperience. They would normally meet up to offersupport however during this time that is notpossible and so the charities volunteers are:

● Manning the charities Careline, a telephoneservice for people with kidney diseasemanaged by people with kidney disease,

anyone wanting support can be guaranteed tospeak to someone who understands, willlisten, and offer their guidance during this time

● Providing Peer Support over the telephone,where people with kidney disease are referredto the service, they are matched to a PeerMentor with similar circumstances, the PeerMentor will then call the person to offer theirsupport

● Facilitating the Charities’ on-line supportgroups, where people with kidney disease candiscuss burning questions in an on-lineconfidential setting and get feedback andmorale support from their peers!

If you would like to train to become aPaul Popham Befriender please contact:enquiries@paulpophamfund.co.uk

Peer Support Services - North WalesThe Paul Popham Peer Support Service iscurrently in operation within Swansea UniversityHealth Board and Cardiff and Vale Health Board.

Our aim over the coming months/year is todevelop the service to support patients in NorthWales.

As part of this process, we are looking to patientsin North Wales to join our service by becomingVolunteer Peer Mentors (befrienders). We arelooking for people who understand what it is liketo live with kidney disease, be on dialysis or havea transplant, who can help (and/or support) others.

Training is provided and volunteers are wellsupported by the Team. If this is you, pleasecontact support@paulpophamfund.co.uk or call0800 038 8989 for further information.

We look forward to hearing from you!

Tell us aboutyour Covid-19experience!The Coronavirus pandemic has forcedsome changes to the services thatpeople with kidney disease receivefrom renal services in Wales.Kidney Care UK, Kidney Wales, Paul PophamFund, Welsh Kidney Research Unit and theWelsh Clinical Renal network are keen tolearn about the positive changes that havecome out from the adaptation of services inWales during this time such as outpatientappointments, dialysis treatment at unit orhospital, technical support, pharmacy andprescriptions, dieticians, social workers,psychologists, physiotherapists and so on.Considering your experience as a personwith kidney disease, of the services you havehad to or needed to access during thepandemic, please tell us in your own words:

● Which changes to your health carehave worked well and should remain?

● What changes need adapting?● What changes would you like to suggest?Please feedback directly to either:

Kidney Care UK, Wales Advocacy OfficerT: 01656 514776E: Linzi.Isaac@kidneycareuk.orgTeam from Kidney WalesT: 02920 343940E: team@kidneywales.cymruTeam from Paul Popham FundT: 01792 654182 E: enquiries@paulpophamfund.co.uk

Welfare, benefits and advice

Coronavirusresearch studyHealthWise Wales is supporting astudy by researchers at UniversityCollege London (UCL) into the effectsthat COVID-19 is having on people’smental health.

The study will identify how the news aboutCoronavirus is affecting people, whether peopleare having to isolate, and their experiences ofdoing so.

The study is open to all adults in the UK andinvolves answering an initial 15-minute onlinesurvey, followed by a shorter 10-minute follow-up survey once a week whilst social isolationmeasures are in place.

For more information, see here:https://redcap.idhs.ucl.ac.uk/surveys/?s=TTXKND8JMK

Kidney Wales recently held a Q&A sessionon welfare and benefits with Julie AnnRiseborough of RCT Citizens Advice,which you can read at:

https://www.kidneywales.cymru/news/2020/05/15/benefits-financialsupport- entitled/

https://www.kidneywales.cymru/news/2020/04/21/qa-session-covid-19-welfare-advice/]

If you would like to find out what benefitsand financial support is available to you,please contact Kidney Care UK about afinancial health check.

Volunteer’s Week

Kidney Wales face masks for patientsWelsh Government’s latest guidance is for the public to wear face coverings whilst using public transport, or visiting areas where social distancing is difficult.

KidneyWales PoetryCompetitionIn May, Kidney Wales launched apoetry competition within our privateKidney Wales Community Facebookgroup offering the opportunity forpatients and families to express theimpact the Coronavirus Pandemic hashad on their lives in the form of apoem.The first poem that stood out from thecrowd was written by Julie Jenkins:

What can we say about Covid, the worry it brings to our family.

Two of my boys work for the NHS, Mum’s very proud but worried andstressed.

I listen to the news update everyday, wishing this virus would go away.

Missing my grandchildren my heart is breaking, how much longer is this taking?

Good job I can rely on Kidney Wales, for lots of updates and lots of news.

Nothing is too much trouble, no emails not answered. They are never too busy or can’t be bothered.

Thank you for being there for us.Kidney Wales you are the best.

(https://www.kidneywales.cymru/news/2020/06/02/poetry-competition-winners/)

The use of face masks whilst travelling to/from and whilst dialysing isencouraged by the Welsh Renal Network. Transplant patients are alsoadvised to wear a mask if going outside.

Kidney Wales will purchase re-usable face coverings for our Kidneycommunity, for use during the pandemic. This type of mask is a facecovering, rather than a medical grade surgical mask and it will thereforenot negatively affect the supply of PPE to healthcare settings.

Masks are provided free of charge for all kidney patients who are underhospital care. Additional masks can be requested (limited to an additional3 per household), but for these we ask that you consider a donation of£4.50 per additional mask to cover the cost of the mask and postage.

To order your mask, get in touch withKidney Wales on 029 20 343 940 oremail: team@kidneywales.cymru

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