The Royal London Kidney Patients' Association

REGISTERED CHARITY NUMBER: 266660

Helping All Renal Patients of Barts Health NHS Trust

The Royal London Kidney Patients' Association

REGISTERED CHARITY NUMBER: 266660

Helping All Renal Patients of Barts Health NHS Trust

The Royal London Kidney Patients' Association

REGISTERED CHARITY NUMBER: 266660

Helping All Renal Patients of Barts Health NHS Trust

The Royal London Kidney Patients' Association

REGISTERED CHARITY NUMBER: 266660

Helping All Renal Patients of Barts Health NHS Trust

Our Story

 

 A History compiled by David Craddock with the help of many HARP Members

RELATIONSHIPS

The concept of long term dependence on medical treatment can be hard for the patient to understand and, even more so, to accept. There are underlying fears of the illness, of its treatment and of changes that may occur in condition or treatment.

All patients remember their dialysis training period and especially the staff and fellow patients they first met. There is affinity between patients and there is a need for the patient, even one who appears outwardly self-sufficient, to identify with the Unit staff.

Once established on the treatment, and feeling the benefit of it, the patient is able to appreciate the on-going care of the Unit. It becomes evident that the doctors are delighted when a patient does well.

June Moors (Sister Devonshire) drew the winner. Pictured:with June, patients Barrie Mill. Joyce Critcher and John Court. 1987

Mutual support between staff and patients found expression in the Association for Renal Patients that evolved in the early days of Hanbury and has continued to grow, greatly benefiting the patients and the Unit. Many have likened the Association and its close links with the Unit (and with Devonshire ward under the care of Sister Devonshire, June Moors 1968-88, succeeded by Ann Casey 1988 on) to one, big family. HARP and Hanbury can be proud of their good, working relationship.

THE NEED FOR CHARITY

The first patients dialysing in the newly opened Hanbury felt themselves particularly privileged at a time when, according to an article in The Listener of 27 February 1969, 7000 people a year were dying from chronic kidney disease.

Almost all the patients were expected to continue with their treatment at home after a period of training: in those early days it was the partner who took the initial responsibility for overseeing the dialysis. The patients were “on” the machine for fourteen hours, usually from 2.00 pm. to 4.00am. twice weekly.

For the patients, the most notable improvement to the regime was the gradual introduction of the blue Meltec seven-hour kidney, distributed first to those patients who had been dialysing the longest.   Mary Bailey remembers her husband, David, dialysing at home for three, ten-hour sessions a week until his colleagues bought him a   seven-hour kidney for £375. Most of the patients knew each other and there was great camaraderie. During the long hours of treatment the nurses sometimes moved the machines, even putting inserts into the blood lines to lengthen them, enabling patients to play cards or Monopoly in the middle of the room. Radio helped pass the time, often with patients and staff joining in a “sing-song”. The partners would make tea in the kitchen and sometimes share the nurses’ rest room.

The time required for dialysis, together with a strict diet, imposed considerable restrictions on the social life of the patients’ families. A break from routine was desperately needed.Sally Beer, the first social worker in Hanbury, recognised the several needs of the patients and their families. The most urgent financial need was for help toward travelling expenses. Matty of the patients lived far from the Hospital and had to make their own way to and from the Unit. At the same time patients were losing earnings on the days they trained.

Sally realised that the provision of financial help with patients’ expenses and a holiday home with dialysis facilities were beyond the scope of the National Health Service. She enlisted the willing help of Jo Twigg, the Hanbury   ward clerk, and began fund raising.The first major fund raising event was a sponsored swim at the nurses’ pool in Stepney Way. Many patients with fistulae managed a few lengths and those with shunts, while not allowed in the water, helped with refreshments. The £1,700 raised was deposited in the Renal Amenity Fund held by the Marie Celeste Samaritan Society and Sally and Jo began to look for a holiday home.

HARP IS BORN

 

HARP’s first holiday home  (lease May 1972 – 2007) on the Isle of Wight

Sally and Jo decided to purchase a holiday chalet at Thomess Bay on the Isle of Wight and completion was made on 26 May 1972. Fred Coe, Mary Bailey’s boss at the Ford Motor Company, lent a Transit van and several patients visited the chalet to equip it for the holiday season. The dialysis facilities were installed by the Hanbury technicians.

Sally thought it best that the patients themselves take over the fund raising and the running of the chalet. To this end she approached June Gray, Winifred Levy, Barbara Rogers and Neville Cooper. The four were then joined by David Panting, Peter Parsonage, Patrick Rodd and David Sando. The first meetings, under the chairmanship of June, were held in the Devonshire teaching room or around a bed if a committee member was dialysing.

Firm friendships were made; rapport between patients effected support for the committee as the Charity became an important part of their new way of life.

Back row: Bob Spicer, Peter Spray, Norman Smith, Jean Sturt, Sheila Harden, Joe Moore, Ernie Glibbery

Front row: Joyce Critcher, Ann Spicer, Jenny Smith, Betty Risk, Margaret Craddock, Iain Gloag

The committee continued to fund raise and a bank account was opened. Patrick Jackson became the first treasurer and transferred the financial records to a multi-column cash book. With the increase of funds came a desire to organise the Charity on a more formal basis and preparations were made for registration with a new name and a constitution. June stepped down at this point and Neville was elected…chairman.

CONSTITUTION AND MEMBERSHIP

 The name “Hanbury Association for Renal Patients”, with its acronym “HARP”, was suggested by Neville Cooper. The first Annual General Meeting, in 1973, proved hectic when a motion to establish a national association was proposed. The motion was defeated and the meeting progressed to approve the name and constitution.

The object of the Association is:

  • to relieve and assist persons from the Royal London Hospital Suffering from kidney diseases; and
  • to assist the families of renal patients from RLH who are in necessitous

The name and constitution were adopted by the Charity Commission on 7 February 1974. The constitution has been amended on five subsequent occasions but the object has remained the same. The committee consists of twelve members: chairman, vice-chairman, secretary, treasurer and eight other members, including up to three Hospital staff.

The growth in membership reflects the success of the Renal Unit. The first record of members was held in an address book and the envelopes for   mailing to members   were hand written or typed.   David Panting introduced a system of labels that could be photocopied and this worked well for several years. By 1981 the membership had grown to 180.It was decided to split the membership into three classes for administrative purposes:

  • Full membership for patients;
  • Associate membership for immediate family members;
  • Friends of HARP

On 15 September 1989 HARP became registered under the Data Protection Act. Margaret Craddock put the records of membership on her computer and Spray’s Bakeries donated a dot matrix printer. In February 1993 the mail list contained 508 records consisting of 385 patients, 85 associate members and 38 friends (including Hospital staff).

THE LOGO

John Scholl designed the logo which represents a drop of blood being cleansed as it passes between the membranes of a dialyser.

SOCIAL LIFE

We used to hold and annual social evening with music and a marvellous buffet, organised by patient Joyce Critcher (HARP Treasurer 1985 – 2001), held in the Board Rooms of RLH, Sept 1988.
Pictured: the late Professor John Ledingham (Chair of Medicine at The London) with Professor John Cunningham (now the Queen’s Physician) drawing a raffle prize

 

The first social events were organised primarily to raise money for the Renal Amenity Fund and for the purchase and running of the holiday chalet. A ploughman’s supper and a dinner at York Hall were among the earliest events. Sponsored walks were held over London bridges, one raising over a thousand pounds. David Bailey’s father was caretaker at a Billericay school and these premises were used for dances with themes such as the Wild West and Tramps Ball.

In 1976 it was decided to hold the first social evening for the patients. Dr. Marsh, attending a committee meeting, expressed his view that HARP should not be only a fund raising body. The Spring and Autumn Socials have become popular occasions where old friendships are renewed and new friends made. Here, Joyce Critcher’s excellent buffets are enjoyed by all.

 During the ‘eighties barn dances were held in the Woodford Memorial Hall until their popularity waned. In recent years the Christmas dances organised by Wendy Clark, Senior Nursing Officer, have been very successful.

HARP has sponsored outings for CAPO patients, after learning that many of these patients feel too insecure to travel far. Visits have been made to Eastbourne, Leeds Castle and a river trip to Hampton Court, all organised by CAPO SisterBarbara Cooper and accompanied by staff.Events staged at the Hospital, and especially where Unit staff attend, are always especially well supported.

HOLIDAY HOMES

In December 1975 the committee decided to look for a second holiday home. The chalet at Thorness Bay was popular but could not provide for all the holiday requirements of a growing membership. Some members were not happy about the idea of travelling on the ferry.

Holiday home, ground floor flat in Poole,Bournemouth (Lease 99years from 1977)

The Bournemouth area proved to be the choice and various properties were viewed. The idea of a house was soon discounted because of the difficulty in maintaining the exterior and garden. The eventual choice of a flat in Surrey Road, Poole, was made and completion took place on 17 March 1977.

The main bedroom of the flat was partitioned to include bunk beds and the second bedroom converted by the Unit’s technicians into a treatment room for haemodialysis. The flat was then furnished with items donated by individual members.

While the purchase of the flat was being negotiated the committee looked into the possibility of engaging the services of a dialysis trained nurse so those patients unable to manage their own dialysis could have holidays. The enquiries, as on subsequent occasions, proved fruitless.

In 1978 it was decided to allow transplanted members to use the holiday homes and not just members on haemodialysis.

HARP was fortunate in having the friendship of Bill and Jean Marshall who, from their home in Christchurch, took care of the Poole flat until they retired this year. Bill also spoke on behalf of HARP at a court appeal in 1979 against the use of the flat for holiday purposes. The appeal was overturned.

Romford Brewery Charities Committee ran lots of events in 1984/5 to raise funds for HARP (eg Treasure hunt, army assault course) and, on 16.04.1985 John Court received their cheque for £9,000 to buy an AK10 Gambro, water softener and CAPD big warmer for each of HARP’s holiday homes

The kidney machines at the two holiday homes were in need of replacement when, in 1985, the Romford Brewery Charity Committee contacted HARP with the view to fund raise for such equipment. The two committees worked together and several events were held, the most spectacular being a sponsored assault course at the Colchester Barracks. HARP was delighted when the RBCC handed over a cheque for £9000: two Gambro AKlO monitors were purchased.

The chalet was extended in 1986 with a purpose built treatment room and modernisation of living areas. HARP has received invaluable help and advice from the managers of the Thorness Bay Holiday Park.

In response to the growing number of CAPD members and their requests for a holiday home nearer to the Hospital, the committee purchased a caravan in 1989 at St. Lawrence Bay, on the River Blackwater. The facility was well used for three seasons but interest faded and the caravan was sold.

The increase in membership, and in particular that of Unit based HD patients, prompted the purchase of a holiday home at Sussex Beach Holiday Village where HD treatment was available from the British Kidney Patient Association (BKPA) at their Holiday Dialysis Centre. The BKPA moved their dialysis facility to nearby Hayling Island in 1993 and HARP members are welcomed there for treatment.

HARP NEWS

A notice board in Hanbury provided the earliest method of communication between members. The minutes of the November 1975 committee meeting recorded that it would be a good idea to contact members in a newsletter and by 1976 HARP NEWS was being published. Lily Duffy was the first editor and her husband, Ken, had the newsletter photocopied at his work. Freda Court next took over as editor and her husband, John, had the newsletter duplicated at the school where he taught.

In 1983 David Panting proposed changing from typewritten sheets to the present A5 format and Barrie Mill became editor. Margaret Craddock succeeded Barrie, followed by Pauline Garred. Margaret became editor again for the autumn 1988 edition onwards.

The magazine is now word-processed and printed on an ink jet printer before being pasted up. Photographs and graphics can be included and the printing, binding and stitching is carried out by a specialist firm. Although published and distributed without charge to members it is a vital part of HARP’s organisation and a major aid to fund raising.

LINKS WITH OTHER ORGANISATIONS

 HARP is essentially a self-help group of patients and its members have consistently stressed the view that it remain an independent body. Dr. Frank Goodwin, addressing committee members in 1975, suggested that staff be represented on the committee and allowed to play a more active role. This proved good advice and an amendment to the constitution was adopted, redefining the membership and giving voting powers to a maximum of three elected members of staff. Frank Butterworth, then Home Dialysis Administrator, offered his services and has remained an invaluable worker and advocate of the Association.

In 1976 Dr. Frank Marsh informed the committee that Mrs. Elizabeth Ward, president of the British Kidney Patient Association had contacted him with the view that Kidney Patients’ Associations (KPAs) subscribe one hundred pounds each year to her Silver Lining Appeal. The commit­tee decided this was outside its scope at the time but later, in recognition of the excellent work of the BKPA, HARP joined d sent a donation in 1987.

During the ‘seventies new KPAs were being formed throughout the country as renal treatment became widely available. Addenbrooke’s KPA sent a letter to all renal units in 1978, identifying the need for a national association of KPAs. Lily Duffy and John Court attended the inaugural meeting of the National Federation of Kidney Patients’ Associations (NFKPA) and Lily became HARP’s representative. John was elected onto the NFKPA committee in 1983 and is presently its treasurer and HARP’s representative. All affiliated KPAs pay an annual subscription to the National Kidney Federation (its working title) and patients receive its Kidney Life magazine. The HARP committee sends representatives to the NKF annual conference where they learn about current issues and report back to the Association. The NKF is a non-profit making organisation concerned with the welfare of kidney patients in the UK.

HARP applied to the Regional Health Authority to be placed on the regional list of associations in 1984, when Ron Coleman volunteered to be our representative at the Community Health Council meetings, ensuring the Association is kept informed of developments in the area.

A team is sent to the annual British Transplant Games. Team managers have included Roy Harden, Ken Day, Terry Gray, Barrie Mill, Joyce Critcher, Sheila Harden and Peter Spray. The object of the games is to illustrate the worth of organ donation.

The week preceding the Transplant Games is designated “Transplants in Mind” (TIME) week with the aim of informing the public and publicising the need for more donors. From TIME’s inception in 1991, an informative display depicting aspects of Renal Replacement Therapy and the work of the Renal Unit, provided by Miss Rozanne Lord, has been mounted in the Foyer of the Hospital. Several patients have contributed photographs of themselves and stories telling of their new life with a transplant.

FUND RAISING

Revenue was first raised by means of dances and sponsored events in which the members themselves were the main contributors. An attempt was made to collect subscriptions but this proved impracticable and it quickly became apparent that the Association must appeal to the public for much of its financial requirements.

Fund raising at a fete at Harwood Hall, July 1987, the summer in which we raffled a car

From the early ‘seventies to the late ‘eighties fetes and carnivals were attended where members would set up a stall with publicity material and donor cards. The Technicians lent the casing from a Dylade kidney ma­ chine to add interest and the selling of popcorn, lucky dips, and darts helped draw the crowds. In 1977 a Ford Fiesta motor car was raffled, but it was hard work taking it on Dennis Foakes ‘ trailer to each event. In 1980 a Honda Acty van was purchased to hold the considerable quantity of fete equipment which by then included trestle tables, chairs, display boards and a tent. Hand-made goods were sold along with tickets for the Grand Draw, a “big money” raffle running for several months .

The Hanbury Staff having pantomime fun, Xmas 1993

David Panting started the Christmas Trading in the early ‘seventies. Kevin Norton took over as agent followed by Len Rossall and HARP is now one of Webb Ivory’s largest customers. The Christmas Trading and HARP’s Grand Draw enable all members to participate in fund raising.

Lesley McGarr and Anne Gloag man the stall for The RLHKPA, at Lakeside, during TIME week, June 2002.  (no longer HARP!)

Towards the end of the ‘eighties the fetes became over-subscribe d by charities and revenue fell with the increased competition. A more direct appeal to the public was begun with collection days being held at shop­ ping centres and railway stations. These proved most effective both in terms of raising money and in promoting the donor card scheme.

The auction was opened by Trevor Brooking 7th May 1983, one of our early fundraising events. 72 renowned pigeon fanciers donated some wonderful birds, with their pedigrees etc. Pictured: John Court (HARP chairman), Wally Pope & daughter Dorothy, Margaret (HARP secretary)

Several unusual events have been held over the years including a Pigeon Auction in 1984 opened by the West Ham footballer, Trevor Brooking, a sponsored orbit of the M25 and ice-cream vending in 1987.

At one of HARP’s annual strawberry fayres 1988. Pictured: 3 patients, the late Ernie Gibbery (chairman 1989-92), the late Jim Popely and Peter Spray

An annual Strawberry Fayre has been held outside Hanbury since 1987.Regular income is obtained from interest on monies invested and, under the management of Ernie Glibbery, from donations via collecting boxes.

Ken Looseley and Iris Price (Hanbury technical assistants ) – who taught us how to build a Kiil,
cutting Peter Sprays Bakeries’ cake, in the form of a Gambro AK10, at a social to mark their retirement after more than 25 years’ service.

HARP has never been successful in securing sponsorship from business (apart from Spray’s Bakeries) mainly because the Charity cannot offer sufficient publicity in return.

Much of HARP’s income is raised through the initiative of individual members in running such activities as table top sales, coffee mornings, sponsored events, concerts and the collection and sale of postage stamps and aluminium. Niki Flouri held a spectacular Dinner and Dance in 1990 and Franz Niklaus a remarkable London Taxi Draw in 1991. All these efforts are greatly appreciated by the committee.

ACHIEVEMENTS

 The provision of confidential financial help for renal patients and the opportunity for dialysis patients to enjoy family holidays have remained priorities of the Charity since its founding.

HARP is virtually the sole contributor to the Renal Amenity Fund and keeps the fund topped up to an agreed amount, the Renal Social Worker and Hospital staff controlling the payments to patients.

Success in fund raising enabled the Charity to widen its scope of general help for the patients. By 1984 HARP had already donated £44.000 to the Royal London Hospital Renal Diseases Research Fund and later funded a Research Lecturer.

The Charity has sponsored staff to attend courses and conferences, purchased a laser printer and computer equipment for. the Medical College and gave additional funding for Hanbury’s night dialysis programme.

Presenting a Scanner to Helen Noble, Sister Devonshire ( on the right). Margaret, Joyce, David and Bob

HARP contributed to the upgrading of Hanbury in 1986 and a year later installed a shower unit in James Hora House and refurbished the Devon­ shire dining room. The Charity has purchased a considerable amount of medical equipment to assist in the treatment and care of renal patients.

Mark O’Callaghan, Deborah Emery, David Craddock, Len Rossall, Anne Gloag, Margaret Craddock, Ann Spicer, Lesley McGarr, Jean Sturt

The Association has provided a channel for mutual support between patients, and between patients and Hanbury. The need for charity, and the need for HARP itself, will increase as the Renal Programme of the Royal London Hospital becomes more comprehensive and expensive.

HISTORICAL NOTES

Royal London Hospital

 “The London” was founded in 1740, the result of seven men meeting at the Feathers Tavern in Cheapside and putting up one hundred pounds between them. A house was leased in Featherstone Street, near the present Moorfield Eye Hospital, the sign outside reading,

“THE LONDON INFIRMARY SUPPORTED BY VOLUNTARY CONTRIBUTIONS, BEGUN NOVEMBER 3, 1740.”

It was moved in 1741 to Prescott Street, north-east of the Tower. The present site in the Whitechapel Road was leased from the Corporation of the City of London in 1752 and the foundation stone of the 350 bed building laid on 15 October.

Before the Reformation the monastic orders were the main providers of care for poor sick people. From the Reformation, the voluntary system was the sole provider for the acute sick until the introduction of the NHS in 1948. The picture emerges then, as now, of medical staff dedicated to the alleviation of suffering, researching new methods of diagnosis and treatment, and setting standards of medical practice.

Famous people associated with the Hospital include: Sir William Blizard, a surgeon who founded the Medical School in 1785 and, later, a medical club at the Hospital and helped establish the Royal College of Surgeons, of which he was the first president; Florence Nightingale who became a life governor of the Hospital in 1785; Eva Luckes, appointed Matron in 1881 and who later defended the Hospital before the House of Lords, and Dr. Thomas John Banardo who joined the Medical College as a student in 1866 and later founded the Dr. Banardo’s Homes.

When Queen Victoria opened a new wing in 1876 the Hospital, with its 790 beds, was the largest in the country.

Queen Elizabeth II became patron of the Hospital in 1953 and, in 1990, conferred a royal title on the London Hospital and the Mile End and St. Clements units.

The Royal London became a Trust Hospital on 1 April 1990 in the first wave of about thirty Trusts, its full title being, “The Royal London Hospital and Associated Community Service National Health Service Trust”.

Marie Celeste Samaritan Society

Sir William Blizard was concerned for the welfare of the poor when they were discharged from “the London” and he raised money to found the Samaritan Society in 1791. The Society’s motto, “Take care of him”, was taken from the parable of the Good Samaritan in St. Luke’s gospel.

In 1900 James Hora, believing he had neglected his wife, covenanted an annual subscription to the Society and later bequeathed a large sum. In remembrance of his wife, the Society became the Marie Celeste Samaritan Society.

James Hora House, which provides a refuge for close relatives of patients and for patients not needing hospital beds, was established through a grant from the Society and opened in 1981. The Society holds the Renal Amenity Fund.

Devonshire

The Cavendish family were Dukes of Devonshire in the 18th century. It was probably John Harrison, a surgeon and one of the seven founders of the Hospital, who persuaded the Duke of Richmond and the Duke of Devonshire to become patrons. The Duke of Devonshire succeeded the Duke of Richmond as president of the Infirmary circa 1753.

Wards were named after patrons and benefactors. Sometimes a name was lost when wards changed, then reintroduced at a later date.

Hanbury

The Black Eagle Brewery was built on a site leased to John Stott in 1660. Part of the land was sublet to Thomas Bucknell, on whose death Joseph Truman acquired the lease. Joseph was succeeded by his two sons, Joseph and Benjamin. Joseph retired in 1730 but, under Benjamin, the brewery became famous for its “porter” or black stout.

Sampson Hanbury took over after the death of Benjamin Truman and Thomas Buxton joined the firm in 1908, subsequently becoming a partner. In 1873 Truman’s was the largest brewery company in the world and became a public company in 1888 continuing to be led by the descendants of the Hanbury, Buxton and Pryor families. The firm later became Watney, Mann and Truman.

Robert Hanbury was a vice president of “the London” in 1876, as was Osgood Hanbury. Eight other members of the Hanbury family served as life governors up to 1918.

 

THE NEED FOR CHARITY

The first patients dialysing in the newly opened Hanbury felt themselves particularly privileged at a time when, according to an article in The Listener of 27 February 1969, 7000 people a year were dying from chronic kidney disease.

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