FREE Please Take Me Home!

LEICESTER KIDNEY PATIENT’S

ASSOCIATION

NEWSLETTER

ISSUE TWO– 2013

FREE!! – Please take me home!

From the Editor – Tony Monaghan ….

Hello everyone welcome to issue two of our newsletter. First of all may I take this opportunity to thank those of you who have said how much you enjoyed reading issue one and how you approved of the new format. It is always a pleasure to hear from our readers and your comments are welcomed.

In this issue as always you will find articles of interest and others for your information. Our events calendar continues to expand and there are additional dates for your diary. We also have reports on World Kidney Day and other events that have already taken place since the beginning of the year.

Remember if you wish to submit articles to be included in future issue’s use the contact details which are on the back page of this edition.

In the meantime – happy reading!

A message from the treasurer – MadhuMadhani

A brief pledge to our member’s - Please continue to support the LKPA. Any contribution, however small, is always greatly appreciated and we the committee members would welcome your ideas with regards to various activities you would like us to get involved with. Remember, the LKPA is your association and all income received is put towards helping and benefiting members, whether it is the summer coach trip, welfare grants or whatever activity we may be organising.We always look forward to seeing you all and hopefully the activities will generate some interest. All activities do incur some level of cost and you may well recall that the last coach trip to Skegness was free of charge for renal patients and carers/friends/family members contributed a nominal sum of £ 10.00 which helped the trip to be financially viable. This year's coach trip will follow a similar pattern. All members are requested to look out for the coach trip date and book the seat(s) early to avoid disappointment. The deposit will ensure availability of seats and as last year, the deposit will be refunded to renal patients on the day. Please book early so we know in advance how many coaches to hire. Please see details of all our events in The Events Diary.

HELPERS REQUIRED – IF YOU HAVE TIME TO SPARE AND WOULD LIKE TO PUT IT TO GOOD USE THEN WHY NOT BECOME AN LKPA HELPER? WE NEED VOLUNTEERS TO ASSIST WITH OUR BUSY SCHEDULE OF EVENTS. IF YOU ENJOY MEETING PEOPLE PLEASE CONTACT US USING THE CONTACT DETAILS AT THE REAR OF THIS PUBLICATION.

From the Chair – Margaret Ince ….

The main theme of my remarks in Spring is WE NEED YOUR SUPPORT EVEN MORE.

So how can you contribute?

Newsletter and Website

Following the first Newsletter of 2013, we received only positive comments for its editor, Tony Monaghan, and also had some new members joining the LKPA via the website, managed by Nigel Allured. However, both Tony and Nigel (and the rest of the committee) would really like to have some written or photographic contributions from YOU – the members.

Are there any topics that you would like to see articles on?

What are you doing to keep fit?

Do you have any favourite recipes (renal-friendly) you would like to share?

Where are you holidaying and dialysing away from home? How was the experience for you?

Have you any fund-raising activities that you would like to run? Can we help to promote them for you?

Do you write poetry or paint or draw or have other craft skills to share.

Maybe we should have a photo competition of members holding the LKPA Newsletter in interesting locations!

Events – information and fund-raising

We have a busy programme of events (see the events pages), and, whilst committee members contribute MUCH to organising and running these, most of them are renal patients so consequently have their own health issues (especially so in 2013). We are increasingly aware of a need for more hands, heads and person-hours.

How can YOU help?

Offer a couple of hours to help on the stand at one of the park events (especially in August when we have an event most weekends).

Help distribute fliers for events on your dialysis session, through your clinic etc.

Come in person to support us at events, for instance:

• At the LKPA -NKF-BAPS Temple awareness-raising event on June 16th;
• The Fun Day at Markfield Community Centre on June 30th;
• The coach trip to Skegness on September 8th;
• The LKPA-NKF sponsored walk on September 22nd in Abbey Park etc.
• Make goods for sale at events or sell our raffle tickets for/at the events.
• Make suggestions to us on how YOU or WE could develop our programme of events

Committee

You do NOT have to be a renal patient to be a member of the LKPA or be on the committee – just an interest in or an association with renal patients and renal disease.

Please do consider joining the LKPA committee – we have 3 vacancies.

You can get in touch with me to discuss the committee or to send your suggestions and offers or come along to a committee meeting to see how the LKPA works (the next meeting is on Sunday July21st at 10.30 at LGH). Best Wishes to all of you – and I hope to see many of you at our up-coming events.

SUNDAY 30TH OF June

Markfield Community & Sports Centre

Mayflower Close,MarkfieldLE67 9ST

10:00am – 5:00pm

Free Admission

Golden Mile Sponsored Walk

Walk starts at 12:00

(Entrants entered into free prize draw)

Stalls-Games-Displays

FUN DOG SHOW (Just bring your dog)

Bouncy Castle-Fire Engine-Slide

Bar-Food and Drinks

Events Diary ….

World Kidney Day –was yet again a resounding success with various events taking place throughout the UK.

Here in Leicester we were busy taking part. Bharat and Avril got together with the homecare team from here at the General Hospital, and were located at Beaumont Leys shopping centre. Although the weather wasn’t on our side, the day was successful. The homecare team were offering free blood pressure checks to shoppers and their families and also raising awareness of the importance of regular blood pressure checks with their GP.

Meanwhile, Bharat and Avril were helping raise awareness of kidney disease by handing out information sheets for people to take home and read. Advice was also available if needed.( Please see Bharat’s in depth report )

The Haemodialysis Unit at the General Hospital also supported the day by transforming part of the unit’s weigh in area with balloons, rosettes and numerous posters. The work was undertaken by nursing staff from the unit. They even made cakes for the occasion!

The LKPA events team were present in the LGH main reception area and were selling Easter items alongside our newly acquired range of jewellery. They were also chatting to visitors who were very supportive and many of whom bought raffle tickets or took their chances on the tombola.

We would like to thank everyone who supported World Kidney Day and look forward to next year’s event.

We are also attending several Park events throughout the summer and yet again you are invited to come along.

Dates for your diary –

June 16th BAPS Temple Event

June 30thMarkfield Community Centre - Family Fun Day.

July 6th Western Park Leicester

August 4thAylestone Hall Garden Party

August 10th Evington Village Fete

August 17th Saffron Fete (yet to be confirmed)

September 1st Knighton Park

September 8th Coach Trip to Skegness

September 22nd Abbey Park Sponsored Walk

Organ Donation Awareness Evening ……..

A joint event with BAPS Charities, LKPA, NKF and NHSBT

Date: Sunday 16th June at BAPS ShriSwaminarayanMandir, 135 Gipsy Lane, Leicester, LE4 6RH

Time: 4-8pm:

Event: LKPA stall, NKF stall along with a stall promoting organ donation and encouraging people to sign up on the day.

The main programme will be from 6.00-7:30 pmand will include many speakers in Gujarati/Hindi :

- A video presentation about life on dialysis

- The Hindu perspective on organ donation

- Experience of people who have received a transplant / are waiting for a organ

- Presentation from a professor and two doctors from Leicester General Hospital

- Question and answer session

- Refreshments available after the event

Kidney Research – Broadening Horizons

We have had meetings with researchers looking at providing information about ‘End of life options’, especially for people in communities of South Asian ethnicity

Lifestyle-Exercise

We have met with different UHL research groups and members of the renal staff at LGH to discuss projects in this area. This has a number of outcomes including:

• LKPA will have a stand with relevant lifestyle and LKPA information at outpatient clinics, starting in mid-June in OPD3. Thanks to the NHS for supporting us in this venture.
• Members of the UHL Research team will, when possible, be present at LKPA event to provide advice and pedometer ‘training’ so that people can monitor their own exercise progress. (Lead person Dr Alice Smith).
• Members are supporting training of junior doctors by ‘acting’ as renal patients in on-going training sessions. The first 2-day session in April, supported by 4 LKPA members, was very positive. (Lead person Dr Rakesh Patel).
• We are working with NHS staff and UHL Researchers to produce renal-appropriate literature on exercise and diet. The first outcome of this will be a ‘Physical Activity and Exercise’ page on the LKPA website with some general advice and a short section every month or so from Darren Churchward, the team’s Personal Trainer..

Going on Holiday After Having Transplantation

By NareshLakhani

I was on dialysis for 10 years before a successful kidney transplant in 2010. With my transplantation came the hope of being able to go on holiday without the need to dialyse abroad. However, as I wanted to go to India, there was also the concern ofthe potential for infection and the serious consequences this could bring. Nevertheless, I very much needed a break after not having been on holiday for seven years.

The first thing was to get permission from my consultant who said I was able to travel after the 12 months following the transplant. The last thing I wanted was for the success of the kidney transplant to be jeopardised as a result of rushing to go abroad. I was advised that it was important to take out comprehensive holiday insurance (covering all pre-existing conditions), to take the necessary vaccinations and special malaria tablets along with being careful with what I ate and drank. With this in mind, I began to plan my trip.

I was in India for three weeks and had a very enjoyable time meeting family I hadn’t seen for so long and doing a little sightseeing. It was a much needed break after the drain dialysis can have and the resulting weakness from the transplant operation. As long as the necessary precautions are taken, I would recommend any renal patient (on dialysis or post-transplant) thinking of going on holiday to go for it. A holiday can be a very rewarding experience. I came back refreshed and with amazing memories that will last for a long time.

WORLD KIDNEY DAY – By Bharat Patel

World kidney day is recognised and celebrated throughout the world on the second Thursday in March every year by the renal community and events are held worldwide to mark the day with a particular theme every year. This year the theme was “raising awareness of Acute Kidney Injury”. Kidney patient organisations, renal patients, nephrologists and all involved with management and treatment of kidney problems (failure), care and carrying out of kidney transplants all get involved on the day for the benefit of kidney sufferers.

Locally in Leicestershire this year’s Kidney Care Appeal a UHL based charity, organised a day of awareness by having a stand at the Beaumont Leys shopping centre. The stand gave out information to members of the public on detecting kidney disease early, protecting your kidneys, the foods you should

avoid, leaflets on kidney disease and information on how to become an organ donor.

Consultants, nurses involved with renal care, and the home care team from the Leicester General Hospital, were present on the day. Nurses were checking blood pressures of members in the community for high readings.Hypertension, being one of the principal causes of kidney failure. Most people shopping on the day took time to visit our stand which kept everyone busy. Lots of questions were answered and quite a few people registered to become organ donors on the day. All those in attendance claimed the day to be a huge success. We are looking forward to next year.

Worldwide - in India (New Delhi) a march attended by thousands was organised in the city to raise awareness of kidney disease, in Surat (Gujarat) the Indian Renal Foundation organised a rally to spread awareness which included college students and people from all walks of life, in Kanpur doctors of a private hospital organised kidney disease screening and consultation camps at various locations in the city. In Isfahan (Iran) a rally was organised in ShahidRajaeepark, the students from committee on public health taking part, events included free screening, nephrologists answering public questions, questionnaires distributed to measure knowledge of public. In Colorado (USA) great chefs of the west participated in a fund raiser organised by the National Kidney Foundation. In Argentina an ambitious programme on giving information about acute kidney injury and kidney disease to physicians, post graduate students, students and personnel of principal hospitals in all states of Argentina was under taken.

Carla Smith explains…..

FaceBook allows for free advertising of LKPA events (past and future), for patients to chat between themselves and for all to stay in touch with LKPA.It’s a social network!Since its launch over a year ago it has attracted many members of the LKPA but also lots of supporters.

“It all starts with a simple sign-up to all the basics you would expect, which enables you to make announcements and engage with people online. Catching up with old friends, making new ones, sharing an interest with a group of people or sharing your photos with someone the other side of the world - it’s only as limited as you want to make it.”

Contact Us-

ChairpersonMargaret Ince

SecretaryAnn Carter

TreasurerMadhuMadhani

EventsAlan Carter

EditorTony Monaghan

LKPA website address :

By post: The Secretary, LKPA, Leicester General Hospital, Gwendolen Road, Leicester LE5 4PW.

Depart LGH 8:00am (CAR PARK 1 )

Depart Skegness at 5:30 pm

Renal Patients - £10 to secure your seat (will be refunded on the day)

Carers/Family accompanying Renal Patients £10 per person (not refundable)

Further Details Contact: Ann 07702703882 / Tony 07902101995

To Pay your Deposit (£10 per person)

Send cheque (Made payable to Leicester Kidney Patient Association)

To Mrs A Carter (secretary LKPA)

c/o Leicester General Hospital, Gwendolen Road, Leicester, LE5 4PW

Important Member’s Notice

We at the LKPA endeavour to keep our records up to date whenever we are able. If you receive communication from us and unfortunately the person it is addressed to, has sadly passed away, then please accept our profound apologies and inform us as soon as possible. You should contact The Secretary of the Committee. Details appear on our contact list which can be found on the last page of this document. This will ensure that details are removed forthwith. We as most organisations, are obliged to comply with data protection act and our access to certain information is very restricted. If you have received anything of this nature recently, please accept our sincere apologies. It was not intended to cause any distress.

Here,there, and everywhere!!

Ann, Alan and Naresh - Out and about in Birmingham with the NKF

Meet the medical team- this month Carol Robinson Deputy Sister

I have been nursing for 36 years, 29 of which I have been working within the renal department in Leicester. During the past 29 years I have worked in a variety of roles between ward 15 and the haemodialysis unit including CAPD sister. I re-joined the team on the haemodialysis unit last year.

I started my nurse training in 1977 at the Royal Hospital for Sick Children in Glasgow and qualified as an Enrolled Nurse. I then moved down to England to join my mum who had moved from Scotland to live in Scarborough. I completed a conversion course in 1983 in Harrogate, North Yorkshire, to become a State Registered Nurse and moved to Leicester in 1984 where I have lived ever since. I have always wanted to be a nurse from being a very small child. My mum was a nurse and I think her influence rubbed off on me. I love working in the renal setting and have known some of our patients for as long as I have been here. I could not envisage working anywhere else and enjoy the challenges that my job gives me every day. I am always looking for new challenges.

I have 4 children. My son, Stephen, is 24 years old, 21 year old twin girls, Kathryn and Emma, and my youngest, Rebecca is 18 years old. Only Rebecca is living at home now. She is still at college in Leicester studying music. Stephen lives in Derby, Emma is just finishing university in Lincoln and has yet to decide what she is going to do and Kathryn is an aircraft mechanic in the RAF. She completed a tour in Afghanistan last year where she was working on the engines of the Tornado jets.