Walk a mile in my shoes

Having had a hectic and stressful few days since the NKF Conference in Blackpool I thought I’d take the opportunity this morning to reflect a little on the conference. Broadly it was a success with only a few minor niggles, the most significant and annoying of which in my view was the curtailing of Marc Clancy’s excellent and informative talk on transplantation. He was prevented from expanding on the part of his talk that was, in his words, controversial. But more of that later.

From a personal perspective I enjoyed meeting some but sadly not all of my virtual friends from Twitter and Facebook. Throughout the event there was sense of people coming together because of a common bond to celebrate the kidney community. Lindsay Upton’s drawings were a big hit on the HKPA stand and there wasn’t a dry eye in the room as Kevin Barr told his transplant story: both Lindsay and Kevin demonstrated a quiet dignity and strength.

Each of the patient speakers spoke with passion, from Hayley’s calm recounting of problems with patient transport through to Lorraine’s campaign for fistula protection and the need to educate all medical staff of the reliance dialysis patients have on their fistula. It’s a shame that there was insufficient time to properly debate the patient transport issue with the local service commmissioner Hadrian Collier.

In a sense all of the talks, from Marc Clancy’s presentation on transplantation through to Lawrence Keogh’s cookery demonstration, highlighted the need for patients to raise their voices to effect change. Several dialysis patients I spoke to throughout Saturday raised the subject of continuity of care while they were dialysing. Some spoke of being shifted from one bay to another with little regard to the importance of feeling secure and comfortable in a familiar space. Others spoke of only wanting certain nurses to needle their fistula. Perhaps each dialysis patient should have their own care plan with specific nurses looking after them. I appreciate that this may not always be possible logistically but if changes are managed in a proactive and collaborative manner then patient distress would be minimised. Sometimes we all need to imagine walking a mile in someone else’s shoes. Sometimes we patients need to speak up not just for what we want but also what we need.

Which brings me back to the ‘controversial’ Marc Clancy…

In early August Monitor announced that dialysis tariffs were to be cut and gave little time for patients and their representatives The BKPA and NKF to formulate a response. I’m sure it was just an accident of timing that the proposal was published when many people were away on holiday. While The BKPA and NKF worked on formal responses to the proposals a patient set up an online petition requesting Monitor re-think their decision. The petition was circulated widely on Twitter and Facebook and undoubtedly played a part in Monitor reversing the cuts planned for 2014-2015. However the same debate will begin again next year with the added complication that commissioning of dialysis services is likely to become the responsibility of local Clinical Commissioning Groups (CCGs) as opposed to the current situation where it is done centrally. The devolvement to local CCGs will almost certainly re-open the possibity of further cuts to dialysis services. Marc Clancy also suggested that pressure would increase within the NHS for dialysis services to be privatised and we all know how well privatisation has worked for us regular folk over the years, just look at the cost of rail travel or your energy supplies. Once the dialysis service is privatised that money will not return to the NHS and will not be reinvested in dialysis or renal care.

We all have a voice whether we use it at a local level to ensure that we have continuity of care in our dialysis units or at a national level where we need to persuade politicians that dialysis services and by implication the NHS should remain in public hands. It is time for all of us, patients, KPAs and the large kidney charities to come together and speak with one voice. Who knows, it may lead to more focussed campaigning for those of us with kidney disease.

 

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for the BKPA and my interests, other than my role within GMKIN, include sport, music and politics . Follow me on Twitter: @finnigr

2 thoughts on “Walk a mile in my shoes

  • Yes it was quite annoying having Marc’s talk cut short as it was one of the talks I managed to see and listen to thoroughly, he raised some really important points and some of the more controversial aspects I wanted to find out whether the patient would be informed prior to surgery, i.e cadaver donor being elderly or Type 2 Diabetic. Would the recipient have the chance to refuse the Kidney if they didn’t feel comfortable. I know of someone given a Kidney that has not lasted long, only to find out the donor was a 78 year old woman.

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