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Most KPAs give away their location in their name - e.g. 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).
Where is Addenbrooke’s
Derby
2As of 13 March 2015
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
A little history of Renal treatment
at Addenbrooke’s Hospital
3As of 13 March 2015
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
Addenbrooke’s Renal History (cont.)
4As of 13 March 2015
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.
A little history of AKPA
5As of 13 March 2015
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.
The AKPA Committee
6As of 13 March 2015
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 NewsFlash newsletter (and to provide to NKF)
How many members
7As of 13 March 2015
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.
How we work with the medical team
8As of 13 March 2015
Christmas Cards Christmas raffle Supporter’s events (e.g. 60’s gigs) Many provide funds via “JustGiving”, 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
Fundraising initiatives
9As 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]
Fundraising initiatives (cont.)
10As of 13 March 2015
Legacies have been kind to us, and we have a healthy Balance Sheet at about £300k
With this background we are in a position to run with an operating loss year on year.
2014 saw an operating loss of £18k (excluding legacies) Income £17.8, Expenditure £36.5k
2013 saw a loss of £37k (£18k in & £55k out)
Our financial position
11As of 13 March 2015
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 £18k 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
How we spend our money
12As of 13 March 2015
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
NewsFlash
13As of 13 March 2015
For a while we offered ad-hoc support for exercising during dialysis
In January ‘15 AKPA approved £60k to support a research programme to trial and then develop inter and intra session
Exciting new exercise project
exercise. Most of our money is for staff costs.
The funding application highlighted the great benefits found in other’s research
14As of 13 March 2015
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 2nd 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.
What’s ahead for AKPA
15As of 13 March 2015
We do not have a Charity shop (but we have a bric-a-brac stall every other month)
We used to, but no longer have a seaside caravan
What we don’t do
16As of 13 March 2015