Tyneside Kidney Patients' Association

Registered Charity Number 518767

October 2009 Newsletter.

EDITORIAL

 How can I follow the editorial work done by Joan Longstaff and Margaret Nelson over the last three years? Very difficult because they have a great touch between them. So I want to start by thanking them on behalf of all of us for all their hard work.

 We start this new year in the life of our Association with a very big asset. The help and support we give each other.

 We are planning to shorten the Newsletter but bring it out every two months. We hope this will help keep you informed of what is coming up as well as we can. Simon Lloyd

MANY,MANY THANKS TO:

Sister Carina Taylor and all the staff of Ward 31 who have worked so hard to make sure the move to the new facilities in the Renal Services Centre have gone so well. 

PATIENT TRANSPORT SURVEY RESULTS.

 Last October all the haemodialysis patients

 took part in a survey about transport to and from hospital. The results are in a big 94 page report. The results from our wards show that:

1. The age groups of those on haemodialysis are:

1. 16-39  - 13 people (5%)

2. 40-65 - 123 people (47%)
3. Over 65 - 126 people (48%)

2. The ways in which patients travel:

1. By ambulance service 168 people (64%)

2. By public transport 5 people (2%)
3. By private car 89 people (34)

3. The distances traveled are:

1. 0-5 miles 139 people (53%)

2. 6-20 miles 89 people (34%)
3. Over 20 miles 26 people (10%)

4. The journey times are:

1. Up to 10 minutes 18 people (7%)

2. 10-30 minutes 157 people (60%)
3. 30-60 minutes 76 people (29%)
4. Over 60 minutes 10 people (4%)

5. The times when patients are picked up to go to hospital are:

1. Over 30 minutes early 110 people (42%)

2. 10-30 minutes early 39 people (15%)
3. 0-10 minutes late 78 people (30%)
4. (5%) Over 30 minutes late 13 people

6. Patients have to wait on the ward before haemodialysis:

1. Less than 30 minutes 42 people (16%)
2. 10-30 minutes 97 people (37%)
5. 30-60 minutes 94 people (36%)
6. Over 60 minutes 13 people (5%)

7. After dialysis the waiting time before being taken home is:

1. Less than 10 minutes 84 people (32%)

2. 10-30 minutes 97 people (37%)
3. 30-60 minutes 68 people (26%)
4. Over 60 minutes 13 people (5%)

8. The overall satisfaction with ambulance transport is that it:

1. Meets needs of 149 people (57%)

2. Meets needs most of the time for 39 people (15%)
3. Meets needs some of the time for 37 people (14%)
5. Does not meet patients needs for 21 people (8%)

The details highlighted in red do not meet the standards laid down in the National Service Framework (NSF) 

TRANSPORT STANDARDS

  The NSF standards are that patients should be collected within 30 minutes. In practice that means:

1. Collected within the period from 30 minutes of a set time to 30 minutes after it so they get to the dialysis unit just before their shift starts.
2. They are collected to return home within 30 minutes of finishing dialysis. (This must not be confused with the old system where patients waiting more than an hour could order a taxi)

There have been reports of patients being collected well over an hour before they are due to leave home. The survey does not pick this up and the point has been raised with the group doing it. Simon Lloyd  

KIDNEY SUPPORT NETWORK

While I was on holiday in Brisbane I spent a couple of hours comparing notes with Kay Shafer, the CEO of the Kidney Support Network in Queensland. They suffered exactly the same transport problems we have and have built up their own patient transport system dedicated to haemodialysis patients. This was started by a patient 6 years ago and has become state wide.

 Their system involves:

• Working with renal staff so local groups of patients travel and dialyse together.
• They have teams of volunteer drivers at each renal unit so each person does one shift a week.
• They have a desk manned by volunteer transport organisers at each unit.
• They have a subscription of A$20/year (about £10)
• Each patient donates A$15/week for the 6 journeys (about £7-50)

They are working with much smaller numbers than us and in a different environment. Fuel is about half our price and they only travel up to 15 kilometers (about 10 miles). They are also paying for their healthcare.

Could we develop a similar system of dedicated transport here? One man got the whole system started on a small scale first of all. Now they have built up a system with their own fleet of cars.  Simon Lloyd

 COULD WE ORGANISE OUR OWN TRASNPORT SERVICE FOR HAEMO PATIENTS?

A haemodialysis patient told me recently how one of the other patients offered to drive her and another patient home as the live close together. Could we organise a transport system where those who drive in to dialysis sessions use their cars to transport others?

Are there enough drivers? Survey results show that 168 people come in by ambulance and 89 by their own transport. So in theory there could be enough drivers. However life is never quite that simple.

At the AGM we took the decision to carry out a feasibility study into setting up a dedicated transport system run by volunteers. This would be done in conjunction with renal staff.

 Currently there are four options:

1. See if is possible for the North East Ambulance Service to improve.
2. The Hospital Trust might be able to find an alternative transport provider such as LifeLine, who provides a really good service.
3. Help patients who drive to set up car sharing with other patients who either live nearby or on their route.
4. Develop our own patient transport service starting with volunteer dialysis patients transporting others.

We have agreed to carry out a feasibility study just in case there is no other way of getting a better transport service. Our proposal will be on the basis of starting in a small way. Then if we can get the system to work well gradually build it up as demand grows. Simon Lloyd

WRISTBAND FOR HAEMODIALYSIS PATIENTS

 One of the Kidney Support Network members has designed a white wristband that is embossed in red with the words:

 FISTULA RIGHT ARM 

 NO BP TESTING /NEEDLES.

 There is also one for the left arm. This is made by the internet company Mediband. Hopefully they will make this one of their stock items and should cost about £1.

 CAR PARKING

 Please note that all parking opposite the entrance to the Renal Services Centre entrance is for permit holders only! Including:

• The 11 bays on the left which are for RENAL DIALYSIS patients with permits that must be displayed on the dashboard. Others are being fined for using these bays. Unauthorized parking is blocking the parking for those on dialysis!
• Disabled bays on the right are for those disabled permits only! If they are full you are not permitted to use any of the other bays.

Otherwise patients can park in the bottom to levels of the multi-storey and buy a parking ticket. If you are delayed and go over the time you have paid for see a receptionist to get the time extended. 

PARKING FOR MEETINGS.

 The parking arrangements for meetings have been changed. Parking has to be in the multi-storey on Level 2 or above with a permit on the dashboard.

 Disabled drivers can still use the disabled bays in the car park by the Education Centre for our meetings.

 
HARROGATE FLOWER SHOW

 On Saturday 19^th September 26 of us went by coach to the autumn flower show.

On arrival at the site we each went our separate ways but Joan, Mary, myself and a couple of friends decided our first stop would be coffee, before wandering round the many shades and exhibits.

The site covers a huge area and there is so much to see. The displays of plants and flowers were many and varied. The colours and perfumes were stunning. There was a large selection of vegetables and fruit on display.

Now and again we stopped to watch various demonstrations. One for a kitchen gadget that could make soups, smoothies, ice-cream etc. was fascinating, until we were told the price - £400! Strange how the crowds drifted away after that.

There was a wide range of goods for sale from sweets, cakes and pastries to jam, chutney, cheese and wine. Also face and body lotion, jewellery, items of clothing and accessories, cards crafts and garden ornaments.

Halfway through the afternoon the five of us decided a tea break was in order, so we spent a pleasant half hour or so sitting in the

sunshine. Relaxing before returning to some of the stalls to buy gifts. Then it was time to make our way back to the pick up point for the journey home.

We held a raffle on the coach which raised £41-50 for the TKPA. Thanks to all who joined us on the trip, we really appreciate your support.    Margaret Nelson 
 

ANNUAL GENERAL MEETING

 We had received nominations for all the committee posts. The following were appointed:

 Chairman Kath Brown transplant patient

 Vice chairman George Dickson low clearance patient

 Secretary Simon Lloyd transplant patient

 Treasurer David Errington now a transplant patient 

 Committee members

 David Lee transplant patient

 Mike Hayhoe Haemodialysis patient

 Isobel Stubbington carer

 Alan Bond supporter

 Thanks were given to:

• Len Cline for his work as our treasurer.
• Joan Longstaff for her work as Editor
• Simon Lloyd for 3 years as chairman

The examined accounts were presented and approved, showing our finances continue to be in a healthy state, though we were slightly down this year due to a delay in grant payment for the Resource Room supplies.

We agreed to carry out a feasibility study into setting up a volunteer transport service for haemodialysis patients. 

DARTS COMPETITION
Our second Doctors v Patients match will be held on the evening of Tuesday February 23^rd. The doctors have chosen to make this a darts competition. They are looking for a venue to hold it. If you know of a suitable venue could you please let us know? Ideally we need one that is wheelchair-friendly.

We also want to produce a team that will beat the doctors. So if you are a darts player please contact David Lee.

November

 10th November 7.00p.m. Room 138, General meeting, Haemodialysis at Home or in Hospital Sister Maria Love (Home Haemodialysis Sister)

 8^th November 3.00 p.m. Thanksgiving  Service – St Georges church, Jesmond

 December

  8th 7.00 p.m. Committee Meeting for members only Room 138

  15th 7.00 p.m. Christmas Dinner, Wheatsheaf Hotel

  Father Christmas round the renal wards - date and time to be arranged

2010 January

12th 7.00 p.m. General meeting. What are the Quality Standards for Renal Care?

February

9th 7.00 p.m. Committee Meeting - members only

23^rd Doctors v Patients Darts match - to be arranged

March

9^th 7.00 p.m. Holiday Forum

11^th World Kidney Day

April

13^th 7.00 p.m. Committee Meeting - members only

24^th April - coach trip to Harrogate Spring Flower Show

May

11th 7.00 p.m. Peritoneal Dialysis

June

8th June 7.00 p.m. Committee Meeting - members only

July

5th-11th Transplant Week

13th 7.00 p.m. General Meeting - Skin Care

August

9th 7.00 p.m. Committee Meeting - members only

19th -22nd British Transplant Games - Bath

CHRISTMAS DINNER

This will be held on Tuesday 15^th December at 7.00 p.m. in the Wheatsheaf Hotel, Woolsington

 Christmas Dinner Menu

Starter

Winter Vegetable Soup served with warm roll and butter

Prawn cocktail served with a wedge of brown bread

Fan of Melon with Raspberry Couli

Main Course

      Traditional Roast Turkey

Roast Beef and Yorkshire Pudding

Salmon with a Tomato and Basil Sauce

(All served with roast and boiled potatoes and seasonal vegetables)

Desserts

Christmas Pudding and Brandy Sauce

Profiteroles

Vanilla Cheesecake

Coffee and Dinner Mints

Price £14

If you want to come please fill in the booking form on the last page. 

SERVICE OF THANKSGIVING

 The Newcastle Transplant Unit has given us an invitation to the Service of Thanksgiving for donor families and those who have had transplants.

 The service is on Remembrance Sunday 8th November at St George's Parish Church, Jesmond at 3.00 p.m. There will be light refreshments afterwards. 
 

RENAL REVIEW GROUP

This group meets with the commissioner Peter Dixon to oversee the provision of renal services. Peter then meets with primary care representatives to arrange the funding.  This group consists of Danny Ruta for Chief Public Health Officer, representatives from Newcastle, Middlesborough and Sunderland renal staff as well as patient representatives. At the last meeting these were Dennis Crane for the NKF and myself.

 In the September meeting issues discussed included:

• Haemodialysis Away From Home (AHFD) as Newcastle has to pay out over £40,000 a year so dialysis can be done at other centres, as they are more expensive.
• Sunderland Kidney Patient Group has got £3 million to build a holiday dialysis "hotel" on the sea front with 10 dialysis units.
• The results of the Transport Survey done last October. Newcastle had some of the worst results in the country. By contrast Sunderland using LifeLine, one of the best.
• Plans for a new Health Centre including a satellite dialysis unit in Morpeth. This is scheduled to open in 2012. Simon Lloyd 
  

INDIVIDUAL CARE PLANS

 Many of us patients have their health affected by a variety of conditions. So there are renal patients who are diabetics and some have dicky tickers, some poor eyesight and some welfare problems. They need to see different specialists for each thing.

 How can we ensure that a patient gets all the care needed? Or more specifically that all the things that affect their health are identified? Then how can a plan be developed so all aspects are dealt with?

 The answer is Individual Care Plans (ICPs). These are developed in an interview with one of the healthcare team whose aim is to discover, in discussion, all the things that are involved. Then help the patient develop their own care plan. A plan that will clearly identifies the specialists who can help with each area.

 Care plans belong to the patient with appropriate support from medical staff.

 Dr Alison Brown is chairing a group, who are developing care plans. We already have the draft renal care plan. They have asked us to carry out a survey to find out what patients want and specifically how many want their own plan.

Did you hear of the burglar who fell in a cement mixer?

He's now a hardened criminal. 

Did you hear about the man who fell into a machine at the upholsterer's factory?

NEWSLETTER BY E-MAIL

 We are asking if you could help us by getting your Newsletter by e-mail rather than post? Postage alone costs us 30p/mailing. Add on the cost of producing an 8-page Newsletter @ about 30 p and sending out 6 editions this year will cost at least £2-40 per member.

So could you please help us increase our mailing list from 66 to 100 by e-mailing George Dickson 

FUNDRAISING NEWS

On Saturday 3^rd October the TKPA held a coffee morning at Westoe Road Baptist Church in South Shields. Thanks to Joan, Mary, Adela and Venetia for manning the stalls and church members Audrey Tennet and Betty Bays for serving refreshments and then clearing away afterwards. The total raised was £153.

Many thanks to all who supported this event. It was lovely to have Paul Adamson, who recently received a kidney transplant and his wife Doreen join us. 

ACKNOWLEDGEMENTS

  Audrey Naylor for gifts of jewellery and tombola items.

  Leona Naylor for hand-knitted berets.

  Linda Newman for a selection of items for the stall.

  Mrs Urwin for continuing to save 5ps for us.

  Stewart and Josie Hogg for filling margarine tin with change for us.

Our grateful thanks go to the following:

Mrs Watters - items for tombola & raffle

Heather Armstrong – jigsaws & books

Alan Bond – items for stall/raffle

Sylvia - handmade cards

Doreen & Paul Adamson - tombola items

Mrs Mooney - tombola & stall items

Our thanks also go to the many very kind people who have anonymously donated gifts of money, hand knitted garments, hand-made cards and goods for funds/raffle/stall.

We would also like to thank Freeman’s staff, both medical and clerical, who support and help us in so many different ways, including donating goods and supporting the stall and raffles.

Not forgetting people who helped us at the various fetes we attended – Walker Park, South Shields, Felling & Saltwell Park –who included Simon Lloyd, Margaret Nelson, Alan Bond, Mary Bullock, Isabel Jed Cassie & Holly Stubbington, John & Sue Harty. Also our grateful thanks to the many who donate books, gifts of money and various items to the stall, but who prefer to remain anonymous. Also of course to all of you who support our stall and raffles - we couldn't do without you. 

AUTUMN RAFFLE

PRIZEWINNERS

  228 Pat Fairley         244 Mrs Sheldon

  274 Les Hodson        317 Marie Redshaw

  332 Sue Robinson     410 Karen

  427 Ms Burdis          437 A Bond

  450 M Lee                 567 G Taylor                                           

  Thank you to everyone who took part. 

CHRISTMAS RAFFLE

 Fenwicks are going to give us a hamper worth £100 again this year.  We are adding a further 9 great prizes for our Christmas Raffle. Tickets cats 50p each. The draw will be made at the end of the afternoon of Friday 18^th December.

WHICH IS THE BEST KIDNEY CHARITY TO SUPPORT?

  Finding the right charity to support can be a bit confusing. If you want to support kidney research then there are two you might consider:

• Northern Counties Kidney Research Fund (NCKRF) which supports kidney research in Newcastle.
• Kidney Research UK  - a very big national charity which gives its fundraisers 50% of the money they raise.

  If you want to support a charity that supports kidney patients direct the two most relevant are:

• Tyneside Kidney Patients' Association. We give all the money we raise to directly support local kidney patients with chronic kidney disease.
• National Kidney Federation which is a national organisation running a central office and playing a very important role nationally.

Warning - There are some people raising money fraudulently, apparently for kidney patients. Before you give any money check to see if they are a registered charity. If they are not, even if they claim to be applying for registration, don't trust them.  

GOLF BALLS AND LIFE

When things in your lives seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 cups of coffee!!

A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls.

He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “yes."

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

 "Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things--your family, your children, your health, your friends and your favourite passions--and if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car.

The sand is everything else—the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.   
    
 "Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups.

Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first--the things that really matter. Set your priorities. The rest is just sand."

 One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked.

 It just goes to show you that no matter how

full your life may seem, there's always room for a couple of cups of coffee with a  friend."

If you really care about those in your life, share this with them, just as I DID.

DREAMS

  Catch a dream as it passes by and let it steal your heart away.

  Fly on the wings of happiness and let your spirit freely play.

  Enjoy your magical moment and have a simply perfect day 

   
 What did the fishmonger say to the magician?

CONTRIBUTIONS

Would you be prepared to tell us about your experiences as a patient? Contribute jokes or even photos? If you would like to contribute any article please contact me.

 Simon Lloyd -editor  

PHONE CALLS

 If you phone up one of the committee and get an answering machine please leave your name, telephone number and times when you will be available so we can phone you back.

Your number is particularly important if you ring from a phone where the number is ex-directory.

Your phone calls are important and we want to be able to reply to them.

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