HOME PAGE

NO CHANGES HAVE BEEN MADE FOR A WHILE DUE TO DIFFICULTY ACCESSING AS WE TRANSFER TO A NEWLY DESIGNED SITE,

LOWER DOWN THIS PAGE WE REFER TO OUR MEMBERSHIP OFFER AND UPDATES WILL BE ADDED OVER THE NEXT FEW WEEKS.

MEANTIME, PLEASE NOTE THAT OUR AGM WILL BE ON SUNDAY 8TH OCTOBER, 2017 AT 11am AT THE SAMLESBURY HOTEL, JUST OFF JUNCTION 31 OF THE M6 AT PRESTON AND WILL INCLUDE A TWO COURSE MEAL, COFFEE or TEA. COST TO MEMBERS £10, AND NON-MEMBERS £22.

A FUNDRAISING BALL IS PLANNED FOR NOVEMBER, DETAILS WILL APPEAR HERE SOON.

THE NEXT EAST LANCS SUPPORT GROUP WILL BE HELD ON THURSDAY 31ST AUGUST AT 12 NOON AT THE STORK HOTEL, READ / SIMONSTONE, PLEASE JOIN US FOR A CHEAP MEAL, DRINK AND CHAT.

OTHER SUPPORT GROUP INFORMATION WILL APPEAR HERE SOON.

(11TH AUGUST 2017)

The website was amended on 19th April, 2017 to show the changes to the Committee, amendments to the Support Group details and a new Facebook address, lower down this page, but otherwise will remain as is until we complete our transfer to a new webmaster following the sad loss of Dave Ambler.

~~David Ambler 1954-2017

Dave was a character, larger than life! I first met him when I had started a support group for the Fylde Coast. Dave turned up at the first meeting I had arranged and walked in looking like Robocop, in full leather and his helmet still on.

It wasn’t long before I persuaded him to join our committee and he has been probably the most active member ever since. He set up and maintained our website and ran our KPA Helpline. With the help of his wife Pauline, he organised the meetings for the Fylde Coast Support Group, taking over from me, he rang all members every month, as even those who attend every month, seem to need a prompt. Dave then set up a second support group for Clifton Haemo patients. He organised quite a few trips to the Lakes which were very popular, one or two on canal cruises and Blackpool Panto at the Grand every year. As he would have said, “Oh no, he didn’t!”, “Oh yes, he did!”.

Dave was a diabetic, the cause of his kidney failure. Diabetes caused him to lose his sight for a while, but he took part as enthusiastically as you would expect in all the organised activities, including rock-climbing. He admitted that, as a young man, he hadn’t paid too much attention to the doctors about his behaviour and taking his medication etc.. He came to regret that, because, a few years ago Dave kept having gangrene. First a toe, then other bits, until, gradually, the surgeons had to remove his leg. At the time, neither he nor Pauline dared discuss with the other, not knowing that the doctor, John Anderton, later to become clinical director, had told both of them that taking into account his other problems, Dave’s chance of survival from the operation was quite poor. Dave was keen on his motorbikes and his biggest worry was that he wouldn’t be able to have a false leg, meaning his biking days would be over. Nevertheless, he went ahead, before the gangrene consumed him and though it was a while before he recovered and the end of his stump healed, he came back as active as ever!

Unfortunately, although he had two prosthetic legs made for him, he could never bear to put his weight on them and only ever wore it on rare occasions. His beloved bike had to go! Usually when you met him his mouth had only gums, because, likewise, he couldn’t get used to his falsies and they were only worn at Christenings and the like!

Dave became vice-chairman, reluctantly, as he didn’t think he would enjoy the “political” side, but we promised he could avoid that. Two years ago, I had a lengthy illness and Dave came in to his own as acting chairman.

Dave needed help to begin with, so his wife helped him by joining the committee, so that she could chauffer him. Eventually though, he was provided with a Motability car that he could drive himself and, as Pauline had commitments on Thursdays to her grandchild, she withdrew and Dave came alone. He still attended “Dialysis Choices” days and events such as World Kidney Day.

His great love was Manchester United. He didn’t miss a match, home or away unless some major disaster prevented him. Because of that, we were all asked to wear colours reflecting the Man U kit at his funeral. That was held at Carleton Crematorium on 25th January. The chapel there is not small, but it was packed with others outside, who couldn’t get in. Afterwards, we went to The Venue on the seafront at Cleveleys. Again a full room, where pie and peas were served and Dave and Pauline’s granddaughter addressed us amusingly about her grandad.

Dave and Pauline were very close to their only child, Tracy, her husband James, their children, Natasha and little Charlie. Tracy was “Bonniest Baby“ in Blackpool and Natasha put even Steve Royle out of his stride, when she told him at the Panto, she was getting a little brother for Christmas! Of course, they also saw plenty of Betty, Dave’s mum, who was a well-known face at many KPA events. James worked for Haven for a while, so Dave & Pauline regularly travelled to the site to stay.

Dave enjoyed his holidays, but he and Pauline couldn’t afford to go away too often. Things always happened to Dave and his stories of their holidays were always entertaining. The latest, an amusing critique on travelling for the disabled, was thought to be the best article ever to appear in our Newsletter.

Unfortunately, we also lost another Committee Member over Christmas:

~~Steve Walton 1954 – 2016

Steve had been a committee member for a relatively short period of time but his enthusiasm made it seem as though he had always been a part of our group. He joined the Focus Group, where he was a very active participant, as he was at “Dialysis Choices” days for pre-dialysis patients. He helped Paul with his work with the PKA (Polycystic Kidney Association), and was a very active supporter of “Kidneys for Life” based at Manchester Royal.

Once he felt comfortable on the committee, Steve started to help us modernise, by making our logo and leaflets more appropriate and appealing to potential new members.

Steve, his wife Cath and daughter Lisa were also regular supporters of Anne’s Ladies Evenings at The Pines.

Steve had polycystic kidney disease and joined the committee pre-dialysis. He went on to be on home dialysis for 18 months, after being trained at the Home Haemo training unit at Chorley, whilst his family were being tested to check for a compatible Live Donor.

His son-in-law, Ryan, was a match and a transplant operation was arranged.

Due to the size of Steve’s kidneys, he had to have one removed before the transplant took place. When this happened, the doctors found a small cancer within the removed kidney, however it was deemed an insignificant amount and so in January 2016, Ryan and Steve went into surgery at the MRI. After a few initial issues, the new kidney worked well, and both patients recovered quite quickly.

In the autumn of 2016, Steve had been out cycling with Ryan. He noticed a lesion in his groin area, and after initially receiving anti-biotics from his GP, was sent for tests at the hospital.

In December, after being been seen by various doctors and consultants, Steve was advised that he had penile cancer, a rare cancer that effects less than 550 people in the UK each year.

Steve was admitted to Christie’s hospital, where doctors operated for over 10 hours. Unfortunately, the doctor’s couldn’t remove all the cancer, and after a scan, it was also found to have spread to his stomach and lung. Steve was told that his condition was terminal, and was given 3-6 months to live.

Within a week of this sad news, Steve was scanned again and told that the cancer was spreading extremely quickly and he had weeks rather than months. Steve deteriorated very quickly that same night and died on the morning of December 23rd.

His funeral was held at Leyland Crematorium, Charnock Richard. As could be expected, the chapel was packed and some couldn’t get in. Following the service celebrating Steve’s life, a wake was held at Leyland Golf Club. Rather than flowers, people were requested to make donations to the L&SCKPA.

Steve worked for a chemical distribution company and although Steve had semi-retired and only worked 2 days per week, his company made a huge donation, so that, together with other funeral donations, the fund stands at over £6,000. We have promised Cath that it will be spent on something tangible that will be a memorial to him.

Before becoming ill, Steve had organised a “Saturday Night Fever” charity evening in January this year at Leyland golf club.  The family decided to carry on with the event, and it proved a very successful evening, raising a further £2,000 for L&SCKPA.

Steve believed that with the changing times, we needed to reconsider our objectives and the activities needed to achieve them. Sadly, his life was cut short before the projects he started could be completed. His son in law, Ryan, however, is also an active committee member, and will continue Steve’s work.

Steve was only with us for around 3 years, but he was a young, driving force that we expected to lead us forward into an evolving future. We will miss him greatly.

Although no longer on the Committee, he gave us as much as if he were and unfortunately, we also lost:

~~Kevin O’Hara 1945-2016, winner of the David Hemmings Award

As reported in the Winter Issue, the award was given for 2016-7 to Kevin O’Hara, the trophy to be presented at the East Lancs Support Group. In November, Kevin was called in to have a biopsy on his throat, went in on the Monday having obeyed instructions not to eat or drink beforehand, was kept in all day taken in all gowned up and then told they hadn’t got his notes, he would have to go home. On Wednesday, he had an appointment with his consultant, ostensibly to have the results reviewed. Kevin arrived early, having had breakfast. He was called in by the consultant before his appointment was actually due and reported what had happened, whereupon the consultant said, “Well let’s do it now!” Told Kevin that he would be very surprised if any problem were found and Kevin was going back to his car approximately five minutes after his appointment time!

However, our group meeting was the following day and Kevin hadn’t felt up to coming, so I told the group that the trophy had been awarded to him and why, (as explained in the Winter issue). So, it was actually the December Christmas lunch on 13th December, when we had the opportunity to present it. Meantime, Kevin had also had good news about his heart, for which he had been warned that he faced an operation that would almost certainly stop his transplanted kidney working. For that reason, the op had been kept at bay, but the consultant had just told him that his latest test showed his heart wasn’t bad enough to warrant an operation so Kevin, whose transplant was the best working part of him, was very relieved.

As explained, Kevin carried out a lot of work for kidney patients in East Lancashire, but had left the KPA Committee because of his own deteriorating health and the demands on his time by his father, who is now 97 and needing regular visits. In spite of leaving the committee, he had agreed to work with us on the Renal Focus Group and on the Blackburn Unit Mobilisation Group, thereby serving all patients across the whole of Lancashire and South Cumbria.

Jenny Fleming, who had organised our Christmas lunch and who worked closely with Kevin organising the East Lancs Support Group, had given the trophy a good polish, so that it was much shinier than after my own efforts. Before lunch was served, she said there was an announcement regarding the David Hemmings Award, but Kevin didn’t take much notice, he was slouched over his table. So though everybody else already knew, we hadn’t said a word to Kevin until Jenny, told him he had won and presented it to him. He was astonished.

He was also delighted, though, typically modest, he said he didn’t deserve it, there were others who deserved it more. We assured him that he was a very worthy winner and that when the decision was made at Committee, Anne Hemmings had voiced the opinion, shared by us all, that there couldn’t be a more well-deserved award.

The following Saturday, I was in our garden when Linda came out to me with a message from Kevin’s wife, Susan. In the morning Kevin had started to cough and asked Susan to send for an ambulance, he was struggling to breathe. Within 10 minutes a paramedic was there, giving him oxygen. Kevin wanted to lie back, but the ambulance man wanted him to sit up, so Susan held him upright, but, despite the paramedics best efforts, Kevin laid back in Susan’s arms, closed his eyes and had gone.

Violent CPR had no effect, so he was rushed to Blackburn Hospital for more CPR, but to no avail.

On a cold but bright Thursday morning, between Christmas and New Year, Kevin’s Requiem Mass funeral was held at the large, but packed out, Church of St Mary (Our Lady Assumed into Heaven,) York Lane, Langho. The church where he and his wife Susan attended every week.

Kevin always had a funny story to tell and sent us home from Committee with a smile on our faces. He liked to tell a tale of being at Mass one morning, (before communion, you shake hands with those around you), not long after Owen Coyle had deserted Burnley F.C., where he had done well as manager, went for his 30 pieces of silver to Bolton Wanderers. On this particular morning, Kevin turned round and found he was shaking hands with the man all Burnley fans called “Judas”. Coyle preferred to call himself “Noah”, for leading Burnley to the “promised land”. Burnley was the last job he held from where he was not sacked!

The service sheet showed Kevin as a younger man with hair! The church has a screen for the hymn words and there were some photos of Kevin shown. His children and their own children gave readings and stories. Afterwards, we went for a short service at Burnley Crematorium for lunch, quickly moving on to Burnley Football Club where we were served a late lunch in a full Banqueting Hall.

Kevin told me only a couple of weeks before he died that he started his working life selling stationery in Nelson & Colne for F H Brown. He told me that period, though not the most remunerative, was the happiest of his working life. His customers, and that meant just about everybody who bought stationery, became his friends and many of them, including his old boss, were at the wake.

Kevin had a transplant about 20 years ago, unfortunately, his spine was broken during the operation and he had back pain ever since. He had a number of illnesses, an occurrence of vasculitis forcing him to cut short a holiday and be flown home in an air ambulance. Nevertheless, he ignored all that and just got on quietly with whatever we asked for and more. He always had a smile, so let’s remember the good times we shared.

Although not on our Committee, the North West Kidney World suffered yet another loss:

~~Dennis Crane MBE 1948 – 2017

Dennis Crane may not be a name that is as familiar to you as the other three people that we have lost this winter, but Dennis was the foremost patient of all in the North West, possibly the country, for at least 35 years.

So far as our KPA and members are concerned, as a founder member in 1983 and later, chairman, of the Manchester Royal KPA, then North West Region KPA, he blazed the trail for our own formation. He then became involved with the NKF. In 2002, the same year in which his efforts on behalf of kidney patients were recognised by Buckingham Palace with the presentation of an MBE, Dennis became NKF Advocacy Officer, covering the whole of the North and Scotland, this after having retired from his full-time work in education, due to a heart attack. As his health deteriorated and the NKF were able to fund additional officers, his area reduced to “just” the North West. He was supposed to be part-time, but that didn’t stop him from devoting almost all of his time to kidney matters.

He had CKD when he was 19 and was fortunate that Withington Hospital opened a Dialysis Unit around the same time, so that he became one of its first patients. Dennis was one of the first home haemo patients and dialysed for 9 hours overnight, so that he could continue working. From the beginning, he felt grateful for the chance of life that had been given to him and threw himself into improving the lot of kidney patients.

He was a strong supporter of the Transplant Games and participated himself in 1982 and subsequent Games, including a World Transplant Games. He worked with the MRI clinicians and North West Commissioners, ensuring that all policies bore in mind the needs of, and effect upon, patients. He was one of the first members of a project that eventually evolved into the Organ Donor Register.

Every meeting that I ever attended to discuss a matter of importance to kidney patients, such as the formulation of the Strategic Framework for Kidney Care that set out standards for all hospitals to aim for, Denis was there. He used to attend all our L&SC Network meetings until he was no longer fit and alongside that was a member of the group planning for the Blackburn Unit, joining us in 2009. He was involved in the drafting of the Transport Provision for Haemo patients and though I and our KPA were critical of the outcome, he seemed confident that he had done the best for patients that he could.

Dennis with Shauna Birtles of Amgen at a joint committee meeting we had with Manchester Royal KPA held at the Tickled Trout

Dennis had 2 transplants, the second lasting for 37 years up until his death in January this year. His funeral was held at Manchester Crematorium and packed with members of the kidney fraternity including members of the NKF Committee, members of the MRIKPA and many surgeons and doctors. One of the talks given was by Professor Netar Malik who recalled the early days when doctors and nurses trembled before entering the dialysis ward, the risk of catching Hepatitis was so great. Mr Neil Parrot, who will be known to many transplant patients as one of the leading kidney and pancreas transplant surgeons at Manchester, now retired, but who, besides his own personal tribute, read out a letter from Alistair Hutchison, a surgeon not able to attend in person, because he still works. Neil’s own words were echoed by Guy Hill, current chairman of MRIKPA, who said, “whenever you had a problem, you always said, “ask Dennis”, he’s sure to know”.

As mentioned above, Dennis was an avid supporter of “Kidneys for Life” and asked for donations to that charity as opposed to floral or other tributes.

John Sagar, chairman

These memories, together with photographs will appear in the Spring Newsletter

Our original KPA site had a total of 38,086 hits from its inception in 2002 to its closure in 2010.

This new site has had 162,969 visits since its inception in 7th November 2010 and was last updated on

6th December 2016 

HOME PAGE

B'POOL SG

CLIFTON CORNER

NEWS & EVENTS

PRESTON SG

6th November 2016

HOME PAGE

2016 CHRISTMAS CARD COLLECTION

B'POOL SG

PRESTON SG

MEMBERS


 

FREE TO GOOD HOME

PD EQUIPMENT

After several years on  PD, one of our patients has now converted to Haemodialysis. As a result, we have some equipment that a PD patient may find useful. There is a Drip Stand that holds bags etc. and a table specially designed for a PD machine and all ancilliary equipment. It is free to a good home although it must be collected from the Oswaldtwistle area.

Telephone the KPA Helpline on

01253 867999


 

Welcome to the Lancashire & South Cumbria Kidney Patients Association Web-Site and thank you for taking the time to visit. This portal will enable you to browse through our many and varied pages at your leisure, we hope you find it both useful and informative. 

If you are not a member and live in the area covered by our Association, why not become a member? We currently have an OFFER OF YOUR FIRST YEAR FREE, to get a taste, and then from as little as £5 a year (minimum donation) you can benefit from the many facilities we offer our members.


We have now become one of the many charities and organisations who can benefit from a website called Easy Fundraising .co.uk and can be found by clicking the link below. (Or by copying & pasting into your browser):-

www.easyfundraising.org.uk/causes/lsckpa/?t=Easyfundraising-lo&v=a&=

To find more information and how you can help, please check out the full article on the FUNDRAISING/ RECYCLING PAGE.


This site has been produced for you by the L & SCKPA, a charitable Association, run by patients for patients. All patients, their friends and their relatives are welcome to join. We organise support groups, campaign for better renal facilities, publish information and newsletters, help the NHS where funds fall short and assist patients with their problems. To learn more about the Association, or to join, click on the links alongside. Some of these links point to the National Kidney Federation's own web-site and their information pages. The association would like to take this opportunity to thank the NKF for allowing us the use of this facility for our readers.


HOW DO I DONATE A KIDNEY?

If you would like to ask questions informally please use the messaging service below; this is designed to allow you to ask questions without committing yourself any further or even identifying yourself or the person you are thinking about donating to.

If you are ready to look into donating further, you will need to contact your local Living Donor Coordinator. They work at the local hospital with kidney services (see details below). In the North West this will be one of the 3 hospitals with kidney services – Preston Royal Infirmary, Central Manchester and Manchester Children’s Hospital (Manchester Royal Infirmary) and Salford Royal NHS Foundation Trust.

If your relative/friend or loved one lives away from the North West, we can help by contacting the right kidney centre for you.

Living Donor Coordinators

Contacts at Preston

Fiona Biggins
Live Donor Coordinator
01772 716565 bleep 2744
or
01772 524353
or
E-mail: fiona.biggins@lthtr.nhs.uk
or
Mags Delargy
Transplant Nurse Practitioner
01772 523475

Contacts at Salford Royal

Karen Scroby
Live Donor Coordinator
0161 206 0531
077931 89544
or Email: karen.scroby@srft.nhs.co.uk

Contacts at Manchester Royal Infirmary

Sue Kost and Janet Gill
0161 276 4565 / 5083
or
E-mail: susan.kost@cmft.nhs.uk
and
janet.gill@cmft.nhs.uk
 


WE ARE ON FACEBOOK  JUST CHECK IT OUT...

       FOLLOW US ON THE NEW LINK BELOW .

(Click Link Below)

          www.facebook.com/Lancs South-Cumbria Kpa

This is for you to keep intouch with other patients and friends

please do not post any medical problems or take any medical advice from our site ....


JUST GIVING dot COM

In conjunction with the Lancashire & South Cumbria KPA, the above web-site "JustGiving.com" are offering the facilities to raise money for your favourite charity. If you are thinking of conducting a sponsored event, or just wish to donate money to our charity, please follow the link below to donate.

www.justgiving.com/lsc-kpa/


Lancashire & South Cumbria

Kidney Patients Association

We now have wristbands for Haemodialysis and Transplant patients.

ONE SIZE FITS ALL

£1 EACH

Available from Jenny Fleming

jenny.fleming1@ntlworld.com

or

PRESTON RECEPTION DESK

CHORLEY RECEPTION DESK

BURNLEY UNIT

ACCRINGTON UNIT

CLIFTON UNIT

KENDAL UNIT

ALL SUPPORT GROUPS

 

Emergency Protection For Your Fistula Arm

SPECIALLY DESIGNED FOR KIDNEY PATIENTS

Emergency Service Are Made Aware Of Your Special Requirements


NKF SITE

www.kidney.org.uk

Originally created by a renal patient who won the NKF’s tender. He died of renal failure, but was carried on by his close friend and fellow webmaster. We hope all patients, of whatever age and technical ability will continue to find this website helpful, informative and an invaluable resource.

FREE PHONE CALLS TO NKF 0845 601 0209

Calls to the NKF Helpline will not be charged. (Free courtesy of BT).


British Kidney Patient Association – making the difference

The BKPA is the leading grant-giving charity for kidney patients in the UK. We work to improve the daily quality of life for kidney patients and their families. We

  • are the largest provider of patient grants to those on low income, helping with welfare and domestic costs

  • support numerous projects in renal units to help improve patient care and patient facilities

  • support national research projects that will help to improve quality of patient care, working for example with the British Renal Society and other kidney charities

  • offer patient information and support

  • fund short breaks and holidays for children, adults and their families

  • have a Facebook Group and active social media

  • have a counselling support line

  • stand up for your rights at a national level

  • Each year, we supply up to £2.5 million in grants, fund 5 of the 8 NKF/BKPA Advocacy Officers & support local Kidney Patient Association activities & members.

The BKPA is here to help you. To find out more about the BKPA visit our website. 

www.britishkidney-pa.co.uk

Or call us on Tel 01420 541424 or contact

info@britishkidney-pa.co.uk

www.facebook.com/groups/TheBKPA

www.twitter.com/The_BKPA