What my KPA does Ralph Slattery NKF Rep

What my KPA does Ralph Slattery [NKF Rep] Janet Man [Fundraising lead] As of 13 March 2015 1

Where is Addenbrooke’s Most KPAs give away their location in their name - e. g. Derby Royal Derby KPA is in … Addenbrooke’s hospital is in Cambridge Satellite dialysis units in Cambridgeshire (Huntingdon – since October 2008), Norfolk (Kings Lynn - since 1999) & Suffolk (Bury St Edmunds - since 2001). As of 13 March 2015 2

A little history of Renal treatment at Addenbrooke’s Hospital Addenbrooke’s is one of the ancestral homes of kidney transplantation, if not dialysis With the success of ‘azathioprine’, renal transplantation was established by Professor Sir Roy Calne in Douglas House (right) 1966 Primitive dialysis machines were used to keep the transplant patients alive. A purpose built 12 -station unit was opened in 1969 As of 13 March 2015 3

Addenbrooke’s Renal History (cont. ) CAPD became available at Douglas House in December 1985 The Dialysis centre moved to the main hospital site (to a ‘temporary location’) in 1990 The Dialysis centre now has 26 stations As of 13 March 2015 4

A little history of AKPA Started in 1975 by a group of patients with the support of medical and nursing staff Including Professor Calne and Dr David Evans (and Sally Taber) Brian Pearmain, a founder member and Second chairman of AKPA, realised there was a need for a national organisation and (with Ruth Lupton of the Renal Society) he setup the National Kidney Federation. As of 13 March 2015 5

The AKPA Committee The committee consists of 10 people [2 staff, 2 on dialysis, 3 with transplants & 3 family and supporters] We have set up subgroups for (a) Fundraising, (b) Finance and (c) Communications We meet (in the Clinical School, on the main hospital site) on a Monday evening every two months. We usually get a turnout of 8 out of 10. As of 13 March 2015 6

How many members The AKPA ‘membership list’ contains over 600 names We invite membership subscriptions (£ 2/yr) but we do not enforce this The list identifies patients, family, staff, etc. at time of joining, but this is not updated, except to remove people who have passed on The list is primarily used as an address list for our News. Flash newsletter (and to provide to NKF) As of 13 March 2015 7

How we work with the medical team We have two members of the medical team on our committee Medical team members give presentations at our AGM We are keen to provide funding and patient experience to some research projects put in place by the medical team Our stated patient involvement was seen as one ingredient in Addenbrooke’s gaining the funding to be a Transplant Research Unit A member of our Committee gave the patient view lecture to all year 2014 new medical students at Cambridge University. As of 13 March 2015 8

Fundraising initiatives Christmas Cards Christmas raffle Supporter’s events (e. g. 60’s gigs) Many provide funds via “Just. Giving”, but we found linking the income to their sites difficult, so sending ‘Thank you’ letters (emails) is not always possible 200 club Donation tins in various locations As of 13 March 2015 9

Fundraising initiatives (cont. ) As of 13 March 2015 Tour de Dialysis (building on Cambridge’s part in the 2014 Tour de France) ~ 30 people (staff & patients) cycled the 162 miles between the four dialysis units over 2 days in June Raised £ 1, 300. shared 50: 50 with NKF [Peter R did sterling work with us] 10

Our financial position Legacies have been kind to us, and we have a healthy Balance Sheet at about £ 300 k With this background we are in a position to run with an operating loss year on year. 2014 saw an operating loss of £ 18 k (excluding legacies) Income £ 17. 8, Expenditure £ 36. 5 k 2013 saw a loss of £ 37 k (£ 18 k in & £ 55 k out) As of 13 March 2015 11

How we spend our money Patient welfare (one off transport costs, holidays, gas bills, etc. ) – accounts for about half of our spending Medical equipment not available through NHS sources (e. g. in 2013 we paid £ 18 k for four home Haemodialysis Machines) Financial support for Research Financial support for staff training (e. g. transport to conferences) Transplant games team Enhanced facilities in dialysis units (TVs, hand-held DVD players) Christmas treats for those attending the four units over the Christmas period As of 13 March 2015 12

News. Flash Regular newsletter / magazine sent to all our ‘members’ Provides information to patients Shows what we have done with the money raised Provides details of past and future fundraising events As of 13 March 2015 13

Exciting new exercise project For a while we offered ad-hoc support for exercising during dialysis In January ‘ 15 AKPA approved £ 60 k to support a research programme to trial and then develop inter and intra session exercise. Most of our money is for staff costs. The funding application highlighted the great benefits found in other’s research As of 13 March 2015 14

What’s ahead for AKPA New main dialysis unit (opening in Nov ‘ 15) Will be a short distance from the main hospital site (doctors will cycle there) This will (like the current 3 satellite units) be run by Fresenius (with NHS staff) Tour de Dialysis 2015 (same as 2014, but the other way round) We are already planning our 2 nd Christmas Carol Service. Last year’s service brought together patients, families, staff. This included Professor Calne, Sally Taber, Nicky Moncrieff and Dr John Bradley all of whom were ‘there at the start’ of AKPA. As of 13 March 2015 15

What we don’t do We do not have a Charity shop (but we have a bric-abrac stall every other month) We used to, but no longer have a seaside caravan As of 13 March 2015 16

Any Questions ? ? Ralph Slattery [NKF Rep] Janet Man [Fundraising lead] As of 13 March 2015 17