03-16%20HKPA%20Autumn%202016

Autumn 2016 1

Registered Charity: 1010321 ‘run by kidney patients for kidney patients’

IN THIS ISSUE

Sky Dive for Charity
IgA Nephropathy
Home Therapies
3D Biology
Medication to Change
the Game
Recipes
Jokes & Puzzles

Unless Otherwise Stated Content is Attributable to the HOPE Kidney Patients Association

Unless Otherwise Stated, All Content is Attributable to the HOPE Kidney Patients Association

2 Autumn 2016

1. Cover: Printed Locally by Leigh Printers

Donald Jones Tel: 01942 608485
By Stuart Powell

2. Contents. 9. Recipe. 14. Doctors Orders.

3. Looking Forward. Baked Cod with Olives and We take the opportunity to
Spring Onions. [A different pose 9 questions to a member
Editorial: New North West way of Cooking White Fish] of the Medical Team.
Regional Advocate For BKPA
10. The Shape of Things to 13. HOPE KPA Holiday

4. Donations & Fundraising . Come. Caravan.

Lee Takes a Dive for the HOPE 3D Printing of Kidneys. [Not About our Holiday Getaway
with Park and Contact
KPA. for the amateur biologist] Details.

[Photos By Keith Pennington]

6. IgA Nephropathy Patient 11. GMKIN Blogspot. 16. Fun Page.

Information Day. ‘Tolvapatan’ A Game Changer A bit of fun and puzzles to
By Rob Finnigan. [A Blog from pass the time of day.
An informative presentation the GMKIN Website] Enjoy!
about this rare kidney disease.
19. Diary Dates 2016.
[Photos By Stuart Powell] *1 12. HOPE Kidney Patients

8. NxStage Home Therapies Association AGM. Check out future events and
Road Tour. see what is coming up in our
Election of Officers for the next issue.
Revolutionary Haemodialysis 2016—2017 year. Self
with mobility in mind. Nomination Form Provided. Documentation was correct at time of
[Photos By Stuart Powell] *2 going to print. Please notify of any errors.

DOWNLOAD YOUR NEWSLETTER!

Your newsletter is available to download from the
website, just email us at [email protected] with
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you the link each time a new issue is ready!

A special thanks to everyone who contributed to
this publication, in particular, the patients, carers
and staff who took part in all of the fund raising
activities.

*1 We would like to thank the Medical Staff from
Leicester University and Patients of the various
KPA’s from around the country. A special mention
to Donald Jones for his magnificent presentation.

*2 Thankyou to NxStage and Nurse Laura Stephens
for the demonstration of Home Therapies. Thanks
to our Guinea Pigs, Brian Egerton and John Roberts
for putting patients minds at ease.

Autumn 2016 3

‘Contact a Committee Member’

HOPE Kidney Patients Association

General Enquiries: [email protected]

News Items: [email protected] <-Chairman:
GMKIN : http://www.gmkin.org.uk Mr. Keith Pennington

Welcome to the Autumn 2016 M: 07770 681496
issue of the HOPE Kidney E: [email protected]
Patients Association Newsletter.
<-Secretary:
NNeewwNNoorrtthh Mr. Stuart Powell
WWeesstt
M: 07724 776848
RReeggiioonnaall E: [email protected]
AAddvvooccaattee
FFoorrBBKKPPAA <-Assistant Secretary:
Mrs. Jan Kempster-Lee

M: 07960 434399
E: [email protected]

<-Fund Raising Co-Ordinator:
Mrs. Ann Hunt

M: 07724 776848
E: [email protected]

Congratulations to Rob Finnigan, <-GMKIN & BKPA:
having recently been appointed to Mr. Rob Finnigan
the British Kidney Patients’
Association, as the North West M: 07791 323598
Regional Advocate, taking up his E: [email protected]
post on 25th April.
<-Caravan:
Rob has been an active member Mrs. Susan Tyrer
of our committee for the past 3
years, playing an instrumental M: 07840 183104
part, establishing the Greater E: [email protected]
Manchester Kidney Information
Network, [GMKIN], teamed with <-GMKIN & University of Salford:
our secretary Stuart Powell, Prof Dr. Cristina Vasilica
Paula Ormandy and Dr. Cristina
Vasilica of Salford University. M: 07724 776848
E: [email protected]
This is great news for kidney
patients of Greater Manchester <-Caravan:
and the North West as he is well Mr. James Tyrer
known to the renal community via
his blogging activity on GMKIN. M: 07840 183104
E: [email protected]
Well Done Rob!
<-Health Professional:
Prof Paula Ormandy

Tel: 0161 295 0453
E: [email protected]

<-Kidney Research UK:
Mr. John Roberts

M: 07855 345792
E: [email protected]

4 Autumn 2016

The HOPE Kidney Patients Association on behalf of all it’s members would like to thank the following
people for their generosity and time taken to raise funds for our charity.

Miss S.M. Chantel Mrs. S.L. Reid M. Smith

The Collier-Baker Family Ms. J. Aitken Mr. Haynes

Jack Smout Ms. Griffiths S. Relph

Mrs. J. Senior Mrs. Ingham Howard Thomas

Ms. K. Jones Mrs. Horsfall Marlene Rimmer

Zoe Donnely Mrs. J.N. Fearick Max Pemberton

Mrs. S. Worley Mrs. B. Cockshaw Mrs. Brenda Lucas

Mrs. K.L. Tonge Mrs. B. C . Hill Nicola McNulty

A. Conset Landale L. K. F. T. Grp Rounds Country Fayre

W. Wharton Mr. R. Tonge The Total You Raised

Thankyou for funding the way to a better quality of life! £1,400.55

We would like to thank all the members of the public and staff who have helped raise funds for patients
with the ladies on our regular stall outside the renal unit.

Over the past 2 months we have raised £632 thanks to your support.

“I would like to thank my grandson Lee, for doing a parachute jump In aid of the charity,

raising the sum of £515.” Mrs. Ann Hunt

The ladies of the fund raising team are very grateful for the
many donations of hand made blankets, door stops and bric-a-
brac that you have taken the time to make for us.

The Members of the HOPE KPA are grateful for your continued

support. A big thankyou from,

Donations to the HOPE KPA Ann, Sue, Mo & Jan
Please send donations to:
If you wish to make a donation to the Hope KPA then
please make cheques payable to: The Secretary Hope KPA
2 Miles Lane
Hope Kidney Patients Association or Hope KPA Shevington
Wigan WN6 8EB

Autumn 2016 5

The Patients, General Public and dedicated team of
committee members give up their free time to aid the
HOPE Kidney Patients Association in helping the many
people with Chronic Kidney Disease [CKD] to face a brighter future thanks to the donations whether
large or small which are gratefully received.

You can help by simply donating small items of Bric-a-
Brac, unwanted gifts [Preferably Boxed], cuddly toys
or £1 shop items.

Some of you who like knitting would like to take up
the challenge of making Easter Chicks or other soft cuddly toys?
Something for Christmas Perhaps?

Lee Takes a Dive for the HOPE Kidney Patients Association

Despite all the training, health checks and waiting, the eventful day
arrived, and Lee Abbott decided to continue in his quest to perform
a tandem skydive with a member of the Black Knights parachute
display team in the hope of achieving his goals of ‘Skydiving’ while
‘Raising Funds’ for our amazing charity.

Accompanied by his Black Night, Lee [pictured left in
red], heads out to the aircraft and great adventure.

Supported by his grandmother

Ann Hunt and her co-committee

members, Keith and Jan, Lee went

through the necessary induction

and pre-jump checks while he We are trying to get small items
waited his turn to take a leap of together in readiness for making
faith. Christmas Hampers and would

While waiting what seemed an really grateful if you could help us

eternity, Lee took the plunge [pun by donating just one small item

intended] and paid the extra from such as tins, jars, crackers or

his own pocket to add an extra deodorants etc. If you have any

4,000 feet to his initial 11,000 feet items to offer then please

target, increasing his fall altitude contact:

to 15,000 feet above the coastal Falling 15,000 feet in just 14 Ann on 07769 713087
minutes, Lee arrived safely back
plains of Lancashire. on Terra Firma, achieving his wish Sue on 07840 183104 or

Warnings of ice clouds did not to sky dive and in the process Jan on 07960 434399
deter our intrepid volunteer as he raised the magnificent sum of
prepared to head skyward. After £515 for the HOPE KPA. Anything you can do to help

many hours of waiting, the skies would be much appreciated.

cleared and Lee was on his way. Our thanks to Lee for your brave Thankyou.
achievement.

6 Autumn 2016

Following the success of the First UK IgA
Nephropathy Patient Information Day,
held on 8th March 2014 at The National Space Centre, Leicester,
Salford Royal, proudly took on the role in the Humphrey Booth
Lecture Theatre of the Mayo Building on Saturday 7th May 2016.

Patients and Doctors from across the world came to learn and speak
about this considered to be, Rare Chronic Kidney Disease.

Professor John Feehally, condition called Approximately 10% of dialysis

Internationally Renowned for his Glomerulonephritis. patients have IgA Nephropathy

Expertise in Nephrology, opened In 50% of patients this damage IgA Nephropathy has a relatively
the day with his keynote speech. resolves
itself with initial early onset, first affecting patients

treatment, in their 20s or early 30s. At

however 20% of patients will diagnosis, a patient's doctor

develop chronic kidney disease cannot predict whether the

(CKD) and the remaining 30% will disease will progress to kidney

progress to end stage renal failure or resolve itself. This

(kidney) failure (ESRF) requiring has a big impact on a patient's life

dialysis or a transplant. As IgA decisions.

What is IgA Nephropathy? Nephropathy is caused, not by a Lack of information about disease

IgA Nephropathy is a kidney fault in the kidney but. by a fault progression is difficult for
disease caused by a blood protein in the IgA in the patient's blood, patients. It is known that patients
called IgA getting stuck in the kidney transplantation is not do better with any disease if they
always successful, because the know as much about their
filter units of the kidney.

glomerulonephritis reoccurs in condition as is possible.
50% of patients.
Information should include not

At present, there is no cure for only the clinical details available

IgA Nephropathy. Treatment is to them from their doctor but also

designed to control the patient's information about the best ways

blood pressure to slow down the to live with the condition on a day

damage to the kidney. to day basis and emotional

The number of patients with IgA support, both of which are best
Nephropathy is hard to define provided by other patients.

because those with the mild form

of the disease will be cared for by

their GP while those with the

progressive disease will be
These filter units then become treated in hospital.
inflamed and damaged, a

Autumn 2016 7

Our cover photo features Donald obstacles, from growing up in His sophomore year in college,

Jones, who honoured us with his Plainfield, New Jersey, amid crime Jones was diagnosed with IgA

presence by travelling from and violence and battling constant Nephropathy, also known as

America to be with us and to peer pressure. Berger's disease, which is an

share his on going experiences as But perhaps his biggest challenge incurable autoimmune disease
an IgA Patient. that affects the kidneys. While
was dealing with
playing with the Buffalo Bills, he
IgA nephropathy
started experiencing symptoms

a kidney disorder that he was such as high blood pressure and

diagnosed with during his vision loss, which severely

sophomore year of college—a affected his health and

condition he fought every day of effectiveness on the field.

his career which eventually forced Subsequently, in 2013, Donald

him to retire. was forced to hang up his cleats

Jones looks back at the lessons he and retire from the game he
learned on a perilous road to the loved. Recalling how he felt after
NFL. And provides keen insights ending his career, Jones laments
on what it takes to succeed on the in The Next Quarter, "I had played
sports since I was seven years old.
off in
I had fought tooth and nail every

‘THE NEXT QUARTER’ day just to make it in. I even

Background became a starter in my first year
after being undrafted. I beat the
Donald Jones thought he was odds. Now I was 25 years old
dreaming when every team in the fighting for my life."
National Football League
contacted him about playing for On December 3rd 2013, Donald's
their organization. life was saved with a kidney
transplant from a donor who
But he always heard the same originally gave him life, his father,
follow-up question: "Can you first pictured below post transplant.
tell us about the drug bust you

were involved in last year?"

They were referring to an
accusation of drug dealing that
could have ruined his career.

Somehow, he overcame the

suspicion and fought his way to Determination and perseverance
the NFL. playing as a wide receiver are two words Donald Jones uses
for the Buffalo Bills and New to describe his climb to success on
England Patriots.
the field. Faith is the word he

Along the way. however, he had expresses to describe his battle

to overcome an onslaught of against kidney disease.

8 Autumn 2016

Salford Royal, recently played host to a special guest,
courtesy of NxStage, a company, specialising in
portable Home Haemodialysis machines.

Pictured left, is a standard mobile home, which
thanks to NxStage has been kitted out with one of their state
of the art HD machines.

Thanks to NxStage and their highly experienced nursing staff,
they were able to demonstrate the benefits of using Haemodialysis, regardless of location.

Taking over from Brian Egerton, experiences to State Registered dialysis every morning, by lunch

our Tuesday Guinea Pig, John NxStage Nurse, Laura Stephens. time he had finished and the rest

Roberts, has invested his life on So how does Home Dialysis affect of the day was to ourselves.
dialysis to using this revolutionary your family?
compact machine. So much so,
that he takes regular and frequent We hear from two more HOPE
European holidays, carrying his KPA members, Sue and Jim Tyrer;

portable device everywhere he Hi, My name is Sue

travels. Tyrer; This is my On NxStage you can dialyse 4, 5,

John tells us that he has husbands experience or 6 days a week, you choose

befriended his machine to the as a dialysis patient at what you want to do. Jim went for

degree that he has named it Salford Royal Hospital. Jim has 5 sessions a week, his health
‘Vlad’, as a nod to the Impaler, a been on various forms of dialysis improved greatly because the
character of myth and legend since 2008, last year we heard machine was much gentler on his
AKA, Dracula. He goes on to say about NxStage dialysis which you dialyzing more frequently. Life
“Like Dracula it takes my blood, can be trained to do at home. became much better we were
unlike the vampire, it does it while Jim fancied this, as opposed to able to do things we couldn't do
going to hospital 3 days a week before. Unfortunately, Jims’
keeping me very much alive.”

for 4 hours a session. health deteriorated just before

We trained as a team as that way Christmas and he had to give up

I could help Jim do the parts he on the home dialysis. Jim was glad

could not manage, due to other he had tried, and had he not been

health problems which made so poorly would still be using it.

some things very awkward for Thank you to the NxStage Nursing
him. We trained at Salford Royal Team for all their patience and
While dialysing aboard the Mobile for 6 weeks, then he had his the wonderful help and support
Home, John relates his positive machine installed at home, we got you have given us.
into our own routine of doing his

Autumn 2016 9

Baked Cod with Olives

A different way of and Spring Onions

cooking white Fish Method

Ingredients Preheat the oven to gas mark 230c/450f/gas mark 8.
Lightly oil a roasting tray and place the Cod on the bottom .
1 Teaspoon Olive Oil

2 x 175g[6oz]Cod Fillets In a bowl combine the Olives, Herbs, Spring Onions, Chillies and

16 Black Olives pitted and finely Lime zest with the Lime juice, then spread the mixture over the top
chopped of the Cod.
2 Tablespoons Chopped Parsley Season with Black Pepper, then pour the Tomato Juice and fish stock
1 Tablespoon Chopped Dill
1 Bunch Spring Onions finely around the fish, place on the hob and bring to the boil over a
chopped
2 Chillies finely diced medium heat.

Place the dish in the oven and Per Serving:

cook for 12 minutes. 209kcals

Juice and Zest of 1 Lime Serve immediately, using the 6gm Fat
Freshly Ground Pepper juices as a sauce, with a Herb 1gm Saturated Fat

150ml [5fl oz] Tomato Juice150ml Leaf Salad. 5gm Carbohydrate

[1fl oz] Fish Stock 0.92gm Sodium

Prep Tip! Potassium: Chemical symbol ‘K’
Potassium comes from diet - especially fruit, vegetables, nuts. Its levels in

CKD Patients need that bit of blood are often high in people with kidney diseases, and in those treated

extra TLC when it comes to with some drugs. This is important as it can be dangerous.

their dietary needs. Normal = 3.5-5.0 mmol/litre. [Information obtained from Patient View]

One of the main things taken Result Comments

in to account in the ‘Renal below 3.5 Too low. If below 3.0, may feel weak, and in susceptible people heart
Diet’ is reducing Potassium rhythm may be upset.

intake. 3.5-5.0 Normal.

5.0-6.0 High but usually not dangerous - getting closer to dangerous at 6.0.
Potassium is contained in

vegetables, fruits and nuts 6.5+ Dangerously high.

e.g. Bananas, Tomatoes, Strawberries and other concentrated fruits such as Raisins and Sultanas etc.

These fruits should be eaten occasionally as a treat, vegetables however, when prepared properly, can

be eaten on a frequent and regular basis as part of a main meal. ytfohErueoCmOhgaatvThreIdePaep:nwa,Unasetfeesoprrtemwhceeiaattlweelyrra!intiefgr
Prepare vegetables in the normal way prior to boiling.
Place the vegetables in the largest pan available to you and fill with water.
Bring the vegetables to the boil and leave to cook to desired taste or recipe.

DO NOT use the water to make any gravy as the potassium is transferred into the water during boiling.

DO use the so called ‘Grey Water’ from the pan to water plants or the veg plot.

10 Autumn 2016

‘Humans could be fitted with kidneys made on

3D PRINTERS’

Thanks to Australian researchers who have already grown miniature organs in labs.
 Researchers from the University of Queensland grew a tiny kidney in a dish U.S. bio-printing

company have signed a deal with the researchers to develop the kidneys for drugs testing and
potential 3D printing.
 The kidney is ‘the hardest thing to build’ said Professor Little.

By KATE LYONS of The Mail Online

A U.S. company has parts such as the bladder and
partnered with Queensland uterus.

researchers in the hope of Bio-printing kidneys could Researchers in Queensland have
been able to grow a two
producing human kidneys on increase the number of organs millimetre long kidney in lab
conditions (left: file photo). It is
3D printers. available for people needing hoped this research might lead to
transplants and greatly improve 3D Printing of kidneys .

Last year the research team at the chances of transplant

the University of Queensland, led success.

by Professor Melissa Little, were

able to grow a tiny kidney, just ‘Bio-engineering a kidney is

two millimetres long, in a probably the most difficult

laboratory dish. thing you could try to build’

The San Diago based bio-printing ‘The kidney is a large organ

company, Organovo have signed with 35 different cell types that

an agreement with the University all have different functions, and

of Queensland’s company a whole lot of different tubules

UniQuest to see how far they that have to be lined up the

might be able to push the right way, making it a much

research, in the hope that more complex organ than the

eventually they will be able to liver, the pancreas or the heart’

bio-print kidneys.

Bio-printing, the 3D printing of However the dream of Professor Melissa Little leads the
bio-printing a kidney is still 15 to research team at the University
body parts, has been occurring for 20 years away, estimates Queensland who have signed an
years. There has been success in Professor Little because the kid- agreement with bio printing
printing skin, blood vessel, company Organovo.
ney is such a complex organ.
cartilage, and with more complex

Autumn 2016 11

By Rob Finnigan

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 in 2002.

The nature of the condition is that treatment available for ADPKD, it Tolvaptan changes that, because

there’s a 50/50 chance it will be isn’t a cure, it merely slows down now there is a treatment so early

passed on to any child where only the progression of the disease and identification potentially allow the

one of the parents has the its licensing has been a protracted patient to be prescribed the drug

defective gene. My wife and I affair: in the USA approval for the and thus slow down its

thought long and hard about drug was denied by the FDA progression. (In the UK Tolvaptan

having our son’s kidneys scanned because of concerns over the is recommended for the those at

but eventually realised an early research trials process and in the stage 2 or 3 of renal failure).

diagnosis would improve his UK, NICE initially rejected the drug Despite the introduction of
chances of managing the only to overturn its decision
progression of the disease and Tolvaptan some parents will
hopefully this would postpone following appeals from charities, remain reluctant to test citing
end stage renal failure thereby patients and the presentation of Increased insurance costs and
delaying the inevitable descent more evidence from experts. adverse effects on their children’s
into the world of dialysis. I must
confess the question behind this So how does the introduction of lifestyle. In my opinion early
blog.
Tolvaptan change the game, how detection and the better quality of

does it add weight to my life afforded by the treatment

argument that it’s better to have providers the decision to test a

“Tolvaptan: A Game Changer?”, your children tested? At present ’no-brainer’.

came from a comment from my there is no formal monitoring of

nephrologist, Dr Grahame Wood ADPKD so unless you have your

at Salford Royal Foundation Trust children tested the chances are

following a brief discussion on the they will only find out if they have

drug’s approval at my recent the disease once they become

clinic appointment. Tolvaptan symptomatic, usually when

marketed under the name hypertension is You may view the latest post at:
(Jinarc® in the UK) is the only detected. http://gmkin.org.uk/tolvaptan-a-game-changer/

12 Autumn 2016

Autumn 2016 13

14 Autumn 2016 We always like to introduce you to the familiar
faces of the Department of Renal Services.
clinics he holds across the county. Dr. Grahame Wood is probably one of the faces
that rank highly within the unit and satellite

As is usual with Doctors Orders, we posed nine questions to him to which he replied with
a couple of somewhat surprising answers.

1. Where were you born?
Southport.

2. What did you want to become when you grew up?
Professional golfer or film director.

3. What type of music do you like?
Varied: Joy Division, Human League, Cure, Japan, Chicane to Deadmau5.

4. What was your first job?
House officer in General Surgery at Royal Bolton.

5. What was your first car?
A green Hillman Avenger.

6. What made you decide to become a Doctor?
Interest in biology and disease.

7. Where did you Study?
King George V Grammar School Southport, Manchester University Medical School, Training in
Renal and General Medicine in North West Region.

8. Before joining the staff at Salford, where did you practice?
I was a medical student in Salford in 1981, qualified in 1986. I worked in all the North West Renal
Units at some stage.

9. When did you join the renal team at Salford?
As a Consultant 1999.

Thank you for making the time to taking part in ‘Doctors Orders.’

Look out for your Doctors Orders in a future issue of the
HOPE Kidney Patient’s Association Newsletter.

Dear Sarah Green,

We’re delighted to inform you that you are shortlisted in this year’s Staff Awards in
the Volunteer of the year category. Well done on this fantastic
achievement – we hope you’re extremely pleased and proud.

The Staff Awards take place on the evening of Friday 7th October
at Manchester United Football Ground.

‘Sarah is speaking at the NKF Patient Conference on Saturday 8th October’

Autumn 2016 15

Our luxury holiday home has did well last year,
providing excellent respite breaks for our kidney
patients. We’ve had lots of new visitors who have
given us great positive feedback.
If you receive treatment under the care of

Salford Royal or you dialyse in hospital or

satellite unit (Salford Royal, Bolton, Rochdale, Oldham or Wigan), you may find it difficult to get away for

a full week, but could try a 3 night weekend break instead. Booking Early is Essential

Members who have done this, tell Contact Committee members
us it’s been lovely to get away and Ann Hunt
relax. on 07769 713087

The site has facilities including,
swimming pool, fishing lake (for dads and lads), a

lovely club house and have a children’s club called Or

Gruntys; feedback has been that the children love Susan Tyrer
it! Why not give it a try for a short break? We are on 0161 736 0242
sure you will enjoy it.

The holiday home is situated in Staining (at Newton They will be happy to provide you with availability

Hall Caravan Park), a Lancashire village 3-4 miles and a booking form. and can also answer any

from Blackpool. questions you may have you may have about the

holiday park.

16 Autumn 2016

Rio Olympics 2016 Sudoku?
Wordsearch

ATHLETICS GYMNASTICS Just fill in the blank squares so that each
BASKETBALL HEPTATHLON row, column and sub-square displays the
BRAZIL JAVELIN numbers 1 to 9 without repetition!
BRONZE MEDALS
CEREMONY OLYMPICS Level: Easy SOLUTION ON PAGE 19
DISCUS PARALYMPICS
DRESSAGE RIO Find the 20 words in the square that fit
FOOTBALL ROWING
GOLD SHOOTING upwards, Downwards, Right to left, Left to
GOLF SILVER
right and Diagonally in the combinations

above. SOLUTION ON PAGE 19

Autumn 2016 17

Supplier of high quality artwork
to the

HOPE

Kidney Patients Association

Langdales Hotel—St. Anne’s

Do you fancy a break on the Fylde coast?

Just 200 yards from St. Anne’s town centre and facing the beautiful
greenery of Ashton Gardens, the Langdales is a warm and friendly
family run hotel where guests are made to feel at home regardless of
disability. Whether on HD, PD or APD,
your needs are all catered for.

The Clifton Dialysis Unit is just over a mile away on a major transport
route. Please view the Langdales website for their fantastic facilities:

HD Patients MUST book their www.langdaleshotel.co.uk

dialysis slot well in advance Email: [email protected]

of their hotel reservation! Tel: 01253 721342 -Speak to Leanne Young Ashton Gardens
Contact the Holiday
In general, if you are thinking of or going on holiday, please make sure you
Co-rdinator at your unit. plan everything well prior to booking. Ensure you have insurance and see

medical staff about booking your dialysis before you arrange the break. Some people have booked a holi-

day only to find that they are unable to access a dialysis unit or that you are required to pay for it and

cannot afford to (e.g. cruise ships). If you do manage to get away, have a good time and be well; let us

know if you think others would be interested and we can recommend it through the newsletter. some of

the insurance companies used by our members are listed on page 12.

Always Ensure That You Have the Right Policy For You!

18 Autumn 2016

Research, Education & Support Kidney Research UK DVD's: http://kidneyresearchuk.org
Tel: 0845 070 7601

KR UK have released 2 DVD’s:

Living with Kidney Disease (module 1) - what you should know, the reality check with Dr Chris Steele.

Living with Kidney Disease (module 2) - what you should know, end stage renal failure with Fiona Loud.

To order visit their website or Email: [email protected]

Salford Royal's website (renal pages) use the URL below:
http://www.srft.nhs.uk/about-us/our-departments/renal-services/

Renal Dietitians can be contacted on Tel: 0161 206 1994
Email: [email protected]

Patient View: (Formally Renal Patient View) sign up to see your results online at this URL:
https://www.patientview.org/ or you can contact your renal team for an application form.

Your health, your way, your guide to long term conditions & self care: NHS Choices website:
http://www.nhs.uk/yourhealth/Pages/Homepage.aspx

Give a kidney—one's enough: http://www.giveakidney.org/index.html

Be A Living Kidney Donor— Contact the Live Donor Nursing Team

If you have thought about being a live donor and would like to talk to someone, then please contact the
Live Donor Nursing Team at Salford Royal Hospital:

: 0161 206 0531 Renal Unit
: 07793 189544 Salford Royal Foundation Trust
: [email protected] Eccles Old Road

A member of our team is looking forward Salford M6 8HD

to hearing from you! A MANCHESTER UNIVERSITY TEACHING TRUST

Help, Advice, Links & Contacts

Renal Radio: Worldwide internet broadcasting service: http://www.renalradio.com/index.php

National Kidney Federation: http://www.kidnev.org.uk Tel: 0845 601 0209

On a restricted diet because of kidney disease? Rediscovering food and flavours?:
http://www.kidnevwellbeing.co.uk/

Holiday Insurance

Travel Insurance Is Important! Ensure you have adequate insurance cover BEFORE booking/travelling.
The following are examples of those that provide cover for people with long term conditions/disabilities.
All companies assess each case individually.

Freedom Insurance Ltd: www.freedominsure.co.uk Tel: 01223 446914

J & M Insurance: www.jmi.co.uk Tel: 0845 338 1638 (Patient Recommended)

Avanti: www.avantitravelinsurance.co.uk Tel: 0800 066 5604

Stay-Sure Insurance: www.staysure.co.uk Tel: 0844 692 8444

Orbis Insurance Services Ltd: www.orbisinsurance.co.uk Tel 01424 215 315

The NKF site lists several companies for use by kidney patients at: http://www.kidnev.org.uk/holidays/insure.html

European Health Insurance Card [EHIC] This card should always be carried when travelling
in the EU. However, basic state cover (NHS Equivalent) is not provided in all countries, so
separate comprehensive cover should always be taken out to ensure you are covered for all
eventualities.
http://www.nhs.uk/NHSEngland/Healthcareabroad/countryguide/Pages/EEAcountries.aspx

Autumn 2016 19

We are pleased to announce EUROPEAN DIALYSIS AND
The NKF Annual Patients’ Conference TRANSPLANT NURSES
ASSOCIATION
will be held at EUROPEAN RENAL CARE
The Hilton Hotel Blackpool 7th to 9th October ASSOCIATION

The Theme & Title EDTNA/ERCA invite you to the 2016
UK Seminar
‘CHANGES’
Person Centred
The programme on Saturday has a wide range of speakers Kidney Care
from Professionals to patients followed by the 3 course Gala
[see page 11 for further details]
Dinner.
Sunday morning will see the NKF Council meeting then a All members of the multi-professional team welcome
Sunday 30th and Monday 31st October
Benefits Workshop with a Q & A session. at Ashford International Hotel, Kent

To book your place, or for further information Coming up
please call 01909 544999.
In The Winter Issue
HOPE

Kidney Patients Association

Annual General Meeting

Wednesday 12th October 2016 Dialysis on the Move

Seminar Room B The NKF Patient Conference 2016
Hope Building Level 2 Doctors Orders
More Puzzles
7pm till 9pm and Recipe Tips
Election of Officers
See You All Soon!
For 2016—2017

[See Page 10 for Nomination Form]

Puzzle Word Search Solution Sudoku Solution

Solutions

From page 16
How Did You Do?

20 Autumn 2016 Please Check Your

HOPE Kidney Patients Association

We raise money and use it to improve the health and social care of kidney Contact Details!

patients under the care of Salford Royal Hospital and it’s satellite dialysis Dear Members.
units.

We have our own holiday home for patient respite. While we in the Hope KPA
work closely with your health
Tell us three things that you believe would improve the ‘Run by kidney patients professionals, our charity is
care of kidney patients that the HKPA could help for kidney patents’ not part of the NHS and
achieve?

1.__________________________________________ We meet once a month and therefore not privy to patient
2.__________________________________________ are looking for volunteers. details unless we are
3.__________________________________________ Come join us, help us make a contacted directly or indirectly
with prior consent by the
Registered Charity Number patients or their families.

http://gmkin.org.uk GM Kidney Information @GMKINet Therefore if there are any
changes in your

The HOPE KPA is an organisation run by kidney circumstances, please ensure
patients for kidney patients and is completely free that your contact details
of charge. Please note that your details will be which are held by the Hope
held on computer by the Association in complete KPA are updated with us by
confidence and will not be communicated to any phone (07724 776848),

other organisation without your permission and in compliance with the Data by post using the form on the

Protection Act. Registering your details with us will enable us to send you a left or you can visit us at

quarterly newsletter by post or email. http://gmkin.org.uk/join-kpa/

PLEASE USE BLOCK LETTERS: Join the Hope KPA to notify us as soon as
possible to ensure you receive
* required information I wish to: or your Newsletter, update your
Title* (Dr / Mr / Mrs / Ms) [Please Tick] Update My Details details or to avoid the receipt
of unwanted mail.
or

Unsubscribe
Other: ____________ Date:* ______________

Name*______________________________________________ Thankyou,
Address* ____________________________________________ The HOPE KPA
Committee.
* _____________________ Home No.: _______________

Postcode* ______________ Mobile No.: _______________ You can use the form to the
left for informing us of any
Email:_______________________@___________________________ change of details or write to:

Tick to receive newsletter download link by email The Secretary
HOPE KPA
I am (please tick one box): The Patient Pre-Dialysis 2 Miles Lane
Relative Carer Peritoneal Dialysis Shevington
Hospital Staff for Haemodialysis Wigan WN6 8EB
Interested Party The Renal Post Transplant or Email:
Research Team [email protected]

You can register on-line at http://gmkin.org.uk/join-kpa/ or return this form to:

The Secretary hand to a member of the team at
2 Miles Lane OR your next OP appointment and they

Shevington, Wigan WN6 8EB will pass on your details to the KPA.