Tyneside Kidney Patients' Association

Registered Charity Number 518767

April 2010 Newsletter.

EDITORIAL
 Our Association exists to support patients with Chronic Kidney Disease, often referred to as CKD. One of the very important aspects of this is representing you locally, nationally through the National Kidney Federation (NKF) and recently in the EEC as well.

We need your help to represent you so we can support your interests and seek to get the best care possible. Please help the committee in this and don't leave it to others. Simon Lloyd

GEORGE DICKSON
George Dickson died on the 10^th February in the Freeman Hospital.

 George was a kidney patient with polycystic kidneys and going to the Low Clearance Clinic. He gave our Association a lot of support first on the committee and then as our vice-chairman for the last two years. He also acted as our membership secretary and sent out our newsletters by e-mail. He did a lot of fund raising including getting A Christmas hamper from Fenwicks for the last two Christmas raffles.

 George was a lifetime supporter of Newcastle United and was a Board member for a time. He had a tremendous interest and encyclopaedic knowledge of league football.

George was a quiet, thoughtful man who had the ability to get to the heart of problems and give good advice. This was combined with a gently wit. He was in every way a real gentleman whose support and advice we will miss. 

FEEDBACK ENCOURAGED!

(WE NEED YOUR COMMENTS)

 Within Renal Services, we are always very keen to hear your thoughts and opinions of the service and care we give – good or bad!  We would therefore encourage feedback from patients, carers and relatives who have experience from any areas within the service.

 Understandably, some people may find talking to staff regarding these issues, either quite difficult or awkward.  If this is the case, please can I try to reassure you that we very much welcome your thoughts and views as we are keen to maintain our high standards of care and always strive to make your experience as good as possible.

  If you do want to talk to someone, please speak to:

• the nurse or doctor looking after you at the time or:
• the senior nurse in charge of the ward / department
• or alternatively I am happy to meet and talk with you – Just ask one of the nurses to contact me direct or on my number below.

  We are keen to make things right for you so please talk to us!!
Julia Harding, Matron, - Tel: 0191 244 8960  

TALE OF THE DONGLE

 I can only connect to broadband by a mobile wireless connection. This is through a small wireless device plugged into my system called a dongle.

 My dongle broadband connection has been very variable and steadily getting worse. It became so unreliable it was annoying to say the least. Eventually I phoned customer services to complain.

 I got through to a call centre manned by an Indian-sounding man called Rabi. He listened to my complaints and then checked them out. He found I was quite right, I had a valid complaint. Rabi then told me about some of the problems they had been having locally. Then he gave me step by step instructions to change the waveband to a different one.

 Since then I have had a very good service.

  Now let's draw some important points out of this dongle incident:

1. The bad service was very annoying and frustrating. Getting upset didn't solve the problem.
2. If I had not complained I would still have a bad service.
3. I had to provide precise details of the problem so it could be checked and action taken to improve it.
4. Rabi wanted to help me get a good service. He not only listened to my complaint but also confirmed it. He then helped me to resolve the problem and get a good service.

Please remember the dongle when you get poor care. Getting upset, even sharing your feelings with others, does not solve anything. Staff will listen to complaints providing they are detailed and made soon after the event. They need precise details of place, time, those involved and what happened. It often helps if you write them down.

  I know it isn't easy to make a complaint. But please remember another old saying:

  "Sow an action, reap a habit. Sow a habit, reap a character."

We can be too stoical and accept poor care when a firm but polite complaint can lead to a change.   Simon Lloyd 

LOBBYING SUCCESS

In February the NKF sent an e-mail asking all Kidney Patient Associations (KPAs) for help in lobbying Members of the European Parliament (MEPs). This is all about the development of a legal directive on organ transplants for the whole of the EEC

The problem was an amendment designed to prevent the exploitation of organs for transplants. An amendment had been put forward that could seriously damage our living donor programme. Very serious as about half the transplants done last year were from living donors.

The e-mail from the NKF was forwarded by e-mail to all those on our list and helpful comments came back. A draft response was produced and circulated by e-mail. This was then discussed and approved at the March meeting before it was sent on to the appropriate MEPs.

The whole issue was dealt with in the European parliament on 16^th March. The relevant paragraph was amended to read:

  "Living donation should be seen as complementary to post-mortem donation and may be carried out where there is no suitable organ available from a deceased person.

  Living donations are predominantly carried out among family members and close relatives and/or for the benefit of a recipient with whom the donor has a close relationship, or where it can be proven that the donor is not acting for the purpose of financial gain in order to prevent commercialisation. Particularly, in the absence of such a close relationship, adequate provisions in national law of the Member States shall be made, thus assuring the highest possible protection of living donors."

Thank you for sharing with kidney patients throughout the EEC in getting this change. 

DONATING ORGANS AFTER DEATH

 Until recently someone who is about to die has not been able to pass on any of his or her organs to a specific person. Those on the organ donor list have had no say in who any of their organs should go to. This has recently been changed. It is now legal for someone who is about to die to donate an organ to a named person for transplantation. This is expected to affect very few people. 

KIDNEY CARE PLANS

This is a new initiative from Kidney Care UK, which we are beginning to introduce here in Freeman.

The kidney Care Plan (KCP) is designed to help you get fully involved in your care planning. It encourages you to take full ownership of your own care plan. It helps you to identify your personal goals for your own treatment, by discussing and agreeing them with the team of doctors, nurses, dieticians and social workers, when you visit clinic.

The KCP document includes list of prompts or suggestions of topics for you to think about in advance, identify the issues that most concern you and that you want to ask about.

For example, you might want to discuss your medication and what changes could be made; what is going to happen to your kidney function in future; what sort of dialysis will suit you best; what plans for future transplantation; or how to arrange a holiday.

The idea behind the KCP is that by identifying your concerns before your clinic visit you and your care can focus on those key issues and really tackle the issues that most concern you.

You can then take away a written record of what you have agreed  - either by waiting for a typed copy clinic letter which comes through the post as at present, or by having a document printed out in clinic summarising discussions which you can keep in your KCP folder, and take home or to other appointments in hospital or with your GP.

At each visit to clinic, you can review the care plan goals you have previously identified, and discuss what your care team can do and what you personally can do to achieve these goals. Your personal goal might be, for example, how to achieve optimal dialysis, or how to get to an agreed blood pressure target, or a blood phosphate  target, or a weight loss target; or it might be to have a holiday abroad on dialysis, or returning to work after a transplant. The goals you want are up to you – it is your kidney care plan!

Knowing your own blood pressure results and blood test results is an important part of your care – in the not too distant future we will have Renal Patient View available for all those who wish to log into the computer system to access all results and documents online from your own home or place of work.

We plan to start introducing the KCP folder in the predialysis clinic initially, but will gradually roll out to all areas of kidney care, for all those who would like one. Of course, many of you may feel that you already agree a care plan and do not need to have this additional documentation, so will not take up the offer of the KCP folder.

But we hope most of you will want to have a KCP that you are in charge of -  if you would like to have a KCP, there are some examples in the outpatient waiting area for you to look at. Just ask the doctor you see at your next outpatient clinic appointment to get started on being in charge of your own kidney care!!

  Dr Alison Brown

JANE MEADOWS

 I would like to introduce myself as the new social worker on the Renal Unit at the Freeman Hospital. As you know Mary Woods retired at the end of last year and I was delighted to be appointed as her replacement.

I have already worked for many years in Social Work at the Freeman and am now looking forward to working alongside Marian and Lynne in supporting renal patients and their families.

We are part of the renal team and are based on the Social Work department at the Freeman. Our telephone number is 0191 223 1025. 

PROGRAMME OF EVENTS

  Committee meeting - Tuesday 13^th April 7.00 p.m. in Room 137 - members only

  24^th April coach trip to Harrogate Flower Show. There are still some tickets available @£15 including the entrance fee. If you want to come please contact David Errington as soon as possible

  11^th May 7.00 p.m. General meeting. Quality in Renal Care,    .Pam Yanez Room 137

  22nd May – Walker Park stand – volunteers needed

  Saturday June 26^th Fun Afternoon in Paddy Freeman's. The doctors had to call off the darts competition so we are organising a Doctors v Patients Rounders competition for the Elizabeth Dickson Challenge cup

  3^rd July South Shields Festival stand – volunteers needed

  Tuesday 6^th July Doctors v Patients Cricket Match at the Blue Flame 6.00 p.m. 

SPONSORED WALK

 Alan Bond is organising a sponsored walk on the upper part of Paddy Freeman's. We can't use the Dene unfortunately as there is a lot of maintenance work going on so the walk will be round the sports fields.

 HOLIDAY FORUM

We had a slight problem as Freedom Holidays weren't able to come but Kevin and Louise Edgar came over from Lakeland Dialysis at very short notice. They were joined by Colette Henderson and the renal social workers Lynn Cullen and Marian Wainwright. We had the opportunity for a lot of open discussion. So what came out of it?

• Check on dialysis facilities before you book a holiday. Not all holiday destinations can offer dialysis facilities.
• If you are going to the Lakes Kevin and Louise offer a really good dialysis unit. In fact we have never been able to arrange for dialysis at Carlisle Hospital
• Contact the renal social workers to get financial help with a break if you need it

INCOME

Donations  £3,025.65    (1)

Bank Interest  £118.46

Fundraising

Stalls   £3,594.81

Raffles   £1,052.65     (2)

Social Events  £838.37

Collecting Tins  £659.87  

Outings   £476.00       (3)

Charity Aid tax refund and interest   £93.26

Misc     £60.00

£9,919.07

EXPENDITURE

Holiday Fund Payments £3,000.00

Stall Purchases  £1,074.34

Event Expenses  £884.70

Outings    £951.50   (3)

Printing, Stationery and Postage           £756.52 (4)

Travel Expenses  £819.58

Insurances   £467.50

Resource Room  £827.20 (5)

Bank Charges  £15.00

Misc. Expenses  £332.31

Memorial Seat  £1,415.65 (6)

NKF Raffle   £100.00

£10,644.30 

Balance in the bank

£11,825-06 
 

Explanatory details:

1. We get donations from a variety of sources. The biggest are from memorial donations.
2. We held 3 raffles of our own and also got back £60 for the £100 worth of NKF raffle tickets we sold.
3. We subsidize about half the cost of outings to support members.
4. The major item is printing the Newsletter. This currently costs us about £130/edition of which about £70 is spent on postage.
5. The Resource Room costs were to buy portable disk players, books and a full range of information leaflets. We had been awarded a grant by the League of Friends but didn't get this until this financial year. This had the effect of leaving us with a deficit.
6. The Memorial Seat was purchased for the RSC courtyard. We were given £2,000 to cover this cost in the previous financial year.

REPORT ON MEETING WITH RENAL STAFF

  In the quarterly meeting the following items were discussed:

• Dr Katie Jones has come to replace Dr Nick Torpey. She has moved from James Cook Hospital, Middlesborough
• E Records. This is the computerized system that will eventually take over all records. Three sections of this have been implemented and two affect us directly:
• Booking appointments - there have been some teething problems with this so please be patient
• Prescriptions on the wards is working really well
• Demonstration of NX dialysis machine - funds are being sought from the PCT for a trial on two of these machines. Dialysis is more expensive but for home dialysis this machine can be taken on holiday in a estate car
• as the Doctor v Patients Darts match had to be called off. We have suggested a rounders competition on Paddy Freeman's. Date Saturday 26^th June
• Surveys are being developed for Ward 32
• Renal Review should be on line soon

DIALYSIS AWAY FROM HOME

  All haemodialysis patients have had a letter about dialysis away from the Freeman. The commissioner of the Primary Care Trust (PCT) has set the limit of 6 sessions per year. This limits holidays to two weeks or sessions for work or family reasons.

  The NKF have done a survey that showed that:

• 80% of units have a limit of four weeks or no limit at all.
• This means we are in the minority 20% limited to two weeks.
• About 10% of patients have done dialysis away from home

This decision goes against the principle of the Department of Health Guidelines and the principle of equity laid down in the National Service Framework (NSF) 1. This states that:

 'For a variety of reasons  - work, education, holidays, family visits - it is important that patients can dialyse away from home.' Primary Care trusts and NHS Trusts are encouraged to develop agreed local policies for temporary dialysis away from home which will ensure equity while minimising the impact of renal failure on patients mobility.

Clearly the decision of the commissioner has been imposed rather than agreed. So we are planning to take this up at the next Renal Review meeting on 28^th April.

  If you have been affected by this ruling could you please let me know as the more information I have the better.  Simon Lloyd

WORLD KIDNEY DAY

We set up three stands for this day. One by Ward 31 which was not successful. One opposite WH Smith, which attracted a lot of interest and one inside, the main entrance.

We had 500 balloons printed to advertise the fact that over 1720 kidney transplants have been done in Newcastle since 1967 and gave a lot away. The rest will be used in the fetes we go to. We also got 4 banners to advertise the day that we can use in future years, as they are undated.

We gave away a lot of donor cards and spoke to quite a lot of people. We had collection tins and were given £110-38 during the day,

WRISTBANDS

There have been some problems with our wristbands as they are printed on the surface and the lettering can rub off. We are getting a new batch which has the lettering debossed (imprinted) and the colour printed into each one.

We are selling you wristbands for life so will exchange your old one for a new one. We are also getting a smaller size. So we can now offer the adult size of 22 cm or smaller size of 18 cm.

ACKNOWLEDGMENTS

We are very grateful to all those who have give us books and gifts to sell on the stall. Particularly to Heather Ramshaw who gave us a lot of books.