A VERY SPECIAL INVITATION

Many of you have told the Kidney Patient Association that you would like help to do things in the community.  This might be starting a hobby, volunteering or even returning to some form of work.   You also tell us that this can be very difficult because things may have changed so much since you have first become ill.

To celebrate the World Kidney Day (8th March) the KPA has commissioned a Specialist Company to run a workshop especially arranged for kidney patients.   The workshop will offer help in PRESENTATION SKILLS, EMPLOYMENT LEGAL ADVICE and each person attending will receive a PERSONAL CV (Personal statement which may assist you when applying for a job).

To attend one of these workshops would normally cost over £100 each, but we are offering it FREE to kidney patients.     The workshop will be very informal, advice will be personalised and is entirely private.

If you would like to attend on the 8^th March, please contact Bernadette Lynch, KPA Administrator on 0207 188 5667 or Email Bernadette.lynch@gstt.nhs.uk by Friday 10^th February.

It may be possible to rearrange your hospital appointments if necessary to allow you to attend, travel expenses can be reimbursed and lunch will be provided.

This year the Christmas party held at the Camberwell dialysis unit took place on the 17^th December. It was a great success and a lot of effort and time went into the fabulous outfits that were worn by the staff, patients and relatives.  It was a fantastic turn out, the food was splendid with lots of different cultural dishes, there was a team of dancers who performed beautifully and the Mayor came to support the event.  The atmosphere was very good and everyone had a great time. Funding for the event was provided by the KPA and representatives from the KPA were there to join in the fun.

We, the members of the Guy’s adult transplant team who were selected for the world transplant games would like to take this opportunity to thank you for your support and funding, which enabled us to compete in Sweden.

All three of us feel very proud to represent the UK in our chosen sports (including badminton, long jump and swimming). Each member was lucky enough to win a medal at the event and have returned home with more determination for future events in both our sporting and personal lives.

George Newman: I have competed in the British Games since 1999 and this is my 3^rd World Games. The events have become an important part of my life and I use my success to help thrive in other areas. I have had a fantastic summer with competing and I am now working towards the British Games in Medway 2012. Thank you again for your support and I look forward to working with you in the future.

Jamie Jessup: I would like to take this opportunity to say thank you to yourselves for your kind generosity. This has given me the chance to represent my country for the first time and being selected was a great achievement in my life. I have participated in four British Transplant Games and through these I have made great friends along the way. I am now embarking on my training regime again to get myself prepared for the British Transplant Games 2012 which are being held in Medway.

Ashley Ramsurrun: I would like to thank the KPA for sponsoring the three of us to compete at the World Games. This is my 2^nd World Games and 4^th British Games I have competed at. Being selected of the world games has been a great achievement for me as it has given something for me to focus on since having my transplant and it has given me inspiration from many other transplantees showing what can be achieved. I have made many friends who have not only supported me but encouraged me to improve myself and achieved great things in the games. Thanking you again for your support.

Chair’s Report, 2010-11:

Trevor Cook, Chair of the KPA welcomed members to the Roben’s Suite at Guy’s Hospital for the Annual General Meeting of the Guy’s and St Thomas’ Kidney Patients Association on Saturday 12^th November 2011.

Membership Matters:

As the number of patients treated by Guy’s and St Thomas’ kidney unit increases so the membership of the KPA increases. In the past the KPA was a paid membership organisation, the committee feel this is no longer appropriate and action has been taken to amend the Constitution to ensure that the Association embraces inclusivity.   

The KPA is keen to communicate effectively with all of its membership and the interested wider community; this is being achieved via newsletters, this website, facebook and face to face interactions. Postal mail outs are not feasible due to cost and the restrictions on the NHS releasing patients’ personal details. 

 Participation:

Local KPA events have included a Dad’s Army production; a golf tournament; dialysis unit parties, BBQs, trips out and a football match. The KPA have also funded participation in the National and World Transplant Games (winning a large number of medals) and a family weekend at Chessington World of Adventures. 

Televisions have been purchased for dialysis units, together with some medical equipment and ongoing support for research.  Ronald MacDonald House (providing accommodation for families of sick children) also received KPA financial support.

 Partnership:

The Committee has been working in partnership with other organisations. For example BLIND AID is supporting kidney patients with visual impairment by providing advice and adapted equipment.   The KPA is represented on the Management Committee of The National Kidney Federation, the Lay Committee of Kidney Research UK, Guy’s and St Thomas’ Renal Project Board, Kidney Research and Education Initiative at City University and many others.   We feel that partnerships have improved the credibility and influence of the KPA throughout the year.

 Looking to the Future:

The KPA are keen to help people rebuild their lives after illness, whether that is to return to some form of work, volunteering or pursuing a hobby.   A workshop for patients is planned for World Kidney Day 2012 to support this. 

A smart phone “APP” is in development for use by young kidney patients  to  give instant access to personal data, appointment reminders and provide information about kidney and social care. 

We plan to work more closely with researchers and support the recruitment of patients to clinical trials.

As a result of a wish of a major benefactor, the KPA is actively involved in the development of home dialysis and is funding a nurse to support and promote the service.

A part-time administrative post has been established to act as the key contact point for the KPA in the future.

The KPA need to raise funds to maintain our level of activity, small scale fund raising activities are useful and will continue, however it is necessary to be ambitious to raise more substantial amounts and the Charity will investigate the use of professional fund raisers.   We remain grateful for contributions through legacies and donations.

Finally ………..

Change is always difficult and this is particularly true for the KPA which has to address extraordinary social and financial challenges, growing numbers of people with kidney disease and rapid changes presented through technological development.

We are committed to identify areas where the Charity can make the greatest impact for the majority of patients and to make it more relevant to all.  This ambition will be embraced in a proposed revised constitution on which we will consult during the year.

Thanks go to all who have supported the Charity throughout the year and we hope that we may continue to inspire and count on even greater achievements in the future.

 Trevor Cook, Chair, GSTTKPA

Below are the results of a survey the KPA committee conducted back in June 2011. The results demonstrate that we, as a charity, need to promote our work as much as possible to the staff and patients of Guy’ s and St Thomas’ hospitals.

Thank you to all the patients and staff that took time to complete this survey.

 GSTTKPA Questionnaire Results June 2011

1. Have you heard of the Guy’s and St Thomas’ Kidney Patients Association?

Yes 51%        No 49%

2. Have you ever attended one of the KPA’s meetings?

Yes    12%      No 88%

If no, why have you not attended?

Times aren’t convenient 8%

Expense of getting to the meeting 0%

Health/Mobility difficulties 20%

Not interested 5%

Didn’t know about the meetings 60%

Other 7%

 3. The KPA often hold informal get-togethers to explain more about the charity and the projects they help to support.  Would this be something you might be interested in going to?

Yes 58%           Maybe 7%          No 35%

 4. The KPA are planning to organise trips for dialysis patients over the summer months such as a boat trip to Greenwich and a tour round the Olympic Stadium in Stratford. Would this be something you might be interested in going to?

Yes 41%            Maybe 6%             No 53%

5. The KPA are keen to communicate with all patients. Have you seen any of the following?

Yes 48%                       No 52%

Leaflet 23%

Posters 23%

Banners 13%

Newsletters 19%

New website 7%

Visit from a KPA representative in a dialysis unit 15%

Are you a transplant or dialysis patient?

Transplant 26%             

Dialysis  32%             

Other 42%

7. Would be interested in getting more involved in the KPA?

Yes 36%           Maybe 8%                 No 56%

8. Would you be willing for us to contact you?

Yes 58%            No 42%

Notes: A few of the questionnaires were not entirely complete, which may affect the final percentages slightly. In addition to this we noticed that there were a fair number of visually impaired patients (15 patients out of a total of 74 questioned), whose mobility problems, prevent them from attending the meetings.

Sunshine and showers were the order of the day at the Sidcup v Forest Hill football tournament on Sunday 7^th August.

Staff and patients from the two dialysis units went head to head to battle it out at the Power League Sports Ground in Catford.  Players, trainers, and supporters arrived early; the organisers arrived fashionably late as excitement mounted in anticipation of the game. Funding for the event was provided by the KPA and representatives from the KPA were there to cheer on their local team.

Forest Hill turned out in their ‘off white’ strip and faced Sidcup sporting a bright red kit; the referee wore black offset with a pink whistle.

From the first whistle both teams engaged with passion and commitment. Forest Hill was soon in the lead by two goals, but were trailing at half time.  Sidcup continued the pressure but the final score was Forest Hill 6; Sidcup 5.     

There was no clear ‘man of the match’ but ‘Jerk Chicken’ played well in goal (until he scored an own goal); Danny and ‘Biscuitman’ were also worthy of a mention.

The teams and supporters ended the day by congratulating each other on their supreme effort and enthusiasm. Following the match players and supporters tucked into home made cookies, sandwiches and other local delicacies! A fabulous afternoon of fun was had by all.

 The event was a tremendous success and celebrated the obvious community spirit present in these two units. Congratulations to all involved.

Staff and KPA members from Guy’s and St Thomas’ set up an information stand in the main corridor at St Thomas’ Hospital to encourage people to join the NHS Organ Donor Register and to discuss their wishes with friends and family.

Three people die each day because there are not enough organs available. There are currently over 7,500 people in the UK waiting for a transplant. 96% of us would take an organ if we needed one but only 29% of the population is on the Organ Donor Register.

Sally Johnson, Director for Organ Donation and Transplantation at NHSBT, said: “We all know how frustrating it is to wait for something we want – be it a bus, exam results or a delivery at home – but our lives don’t depend on it. Imagine how it feels to be one of those waiting on average three years for a life saving organ transplant.

 ”This National Transplant Week we are asking everyone to do their bit to reduce the wait for others and join the NHS Organ Donor Register, then share their wishes with their family and friends so that more lives can be saved. It only takes two minutes – what are you waiting for?”

If you believe in organ donation, prove it:
Register as a kidney donor via the link on the home page

Some of our kidney patients decided that they were not going to miss out on the Royal Wedding Celebrations just because they had to come for dialysis on the big day!

Thanks to a generous donation from the KPA patients attending for dialysis at Forest Hill and Bostock on the 29^th April were able to organise their own street party in the units.

Red, white and blue bunting, hats and banners adorned the dialysis units together with pictures of William and Kate. Patients and staff were able to join in the celebrations with party food and drink while watching the event on TV

Heidi, Ben, Rebecca and Joseph were this year’s KPA runners. They all have a keen interest in raising funds to support kidney patients. As well as working hard to train for the race they also worked hard to get sponsorship.

The KPA would like to thank all friends, family and work colleagues for donating money. Other members of the KPA committee were present throughout the race to support the runners and do ‘bucket collections’.

Next year we hope to have six people running. If you are interested in running the 2012 London Marathon for the KPA please contact Paul Newton: paulnewtonis@bulldoghome.com

Instead of the Americans as their opponents, a team from the Eyeless Trust charity lined up in the inaugural Lillian Ramsay Memorial Trophy with twenty one golfers per side, all of varying standards, going head to head over eighteen holes in a mixture of four ball and foursomes.

Lillian was the late grandmother of Rupert Ramsay, co-organiser and a university friend of mine, who founded The Eyeless Trust in 1993.  The charity’s objectives are to provide respite and social care to children born with anopthalmia, coloboma and other debilitating eye conditions. Lillian regularly used Stoke Park as a venue for her various fundraising ventures and Rupert was therefore keen to return to Stoke Park and use the essence of competitive sport to benefit these two charities.

On the day itself the weather was superb with temperatures reaching 20^oC and upwards! The match, somewhat irritatingly, ended up in a tie! After the golf, the golfers and thirty further non-playing guests, were treated to a magnificent three course lunch along with the inevitable fundraisers – a raffle and a live auction.

The auction proved to be a tremendous success with top lot, a week’s holiday for four in a Cornish cottage, reaching an impressive £820! I would like to take this opportunity to thank all the people who worked so hard in order to make the day the success it was with special thanks going to Rupert for all of his hard work.

Finally at the latest count I am pleased to report £8000 was raised for both charities, which is a superb sum. It is mine and Rupert’s intention to hold a second event in 2012 and I very much hope the KPA members will show their support by joining up with some friends and entering a team of four or, at the very least, joining us for lunch.