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

What my KPA does

Ralph Slattery [NKF Rep]Janet Man [Fundraising lead]

1As of 13 March 2015

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


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


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.)


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


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


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


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


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


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.)


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


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


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


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


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


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


Any Questions ??

Ralph Slattery [NKF Rep]Janet Man [Fundraising lead]


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

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