I would like to share my experiences of the care I have received over the years, both of the good things, of which there have been many, but also those things that I believe could be improved.

Renal care has different requirements from many other medical conditions, in as much as it very often supports a situation that is chronic and does, therefore, enable a whole life relationship to develop between the patient and the medical team. This, to me, should be the core of renal care. Over the years I have received excellent care, but there have been occasional lapses. It is rarely due to a lack of medical knowledge or experience; it is much more a straightforward lack of understanding of the patient’s needs and concerns. Although I will largely restrict myself to my more recent experiences, it is worth recalling my shock and horror when I was told, having been an out-patient for a number of years in the mid-1980s and fully believing that I could happily continue as an out-patient, that I would have to receive dialysis or a kidney transplant relatively soon in the future. I had had no idea about this and was convinced that my life was at an end. I had two very young boys at the time and I found it very difficult to come to terms with this news sitting on my own facing the consultant and with no idea what to ask, what to say and how to respond. We have come a long way since those days, but some of the lessons today are not that different.

My first kidney began to deteriorate in late 2006 and the standard of care I received was excellent. I was then transferred to a different section of the renal team, whose expertise was in attempting to preserve failing kidney function for as long as possible. My wife was fully involved in the discussions and we were both kept informed of the progress, or otherwise, of the kidney. I

knew long before it was required, that I would need dialysis. Of the various options for dialysis, it was explained to me that haemodialysis was likely to be the only reasonable option for me and although I understood the medical mechanics of dialysis, that it purified the blood and removed excess fluid, I had no appreciation of the psychological impact of dialysis and I was given very little help in trying to understand its impact. My introduction to haemodialysis was a brief visit to an acute dialysis unit where I was shown patients attached to bleeping machines, all looking pretty poorly. The unit was full, noisy and it appeared to me to be barely organised chaos. I was not given the opportunity to talk to any patients in a similar position to mine and I found the visit quite disturbing. I think it was predominantly for that reason that I delayed the decision to start dialysis for longer than was medically advisable.

At each of my visits to the unit in the months leading up to starting dialysis in May 2008, I was asked how I felt and I would say I was OK, but I knew in my heart of hearts that I wasn’t. I was very tired all the time. I was not able to do much around the house, I slept most of the time, my feet and legs, particularly, were very swollen and I became very breathless every time I walked more than a few hundred metres, but making that final, irrevocable decision to commence dialysis was something that I wanted to put off for as long as possible. It seemed such a big and irreversible step to make. It was my wife, at one of our regular visits, when I had responded, again, to the doctor that I was OK, who said, ‘No, you are not. It is time to start dialysis.’ She was right but I had left it very late and I was found to be carrying in excess of 10 kg of fluid when we tried to establish my dry weight.

There is more than one means of vascular access and the options were explained to me well. In my particular set of circumstances, there was a possibility of receiving a kidney from my brother and it was therefore suggested to me that I have a permcath installed, which is a simple procedure and which enables the patient to begin dialysis immediately. After some discussion, I accepted this option and the procedure took place in mid-May 2008 and I began dialysis that same day.

It was always made clear to me that I would receive a couple of sessions at the main hospital before a more permanent slot was found for me elsewhere. Within a month I was given Tuesday, Thursday, Saturday evening slots at a local hospital, which were convenient for me and enabled me to drive to and from the hospital. Although it would be ideal for patients to be given a choice as to which slots they might prefer, in reality that is not possible. Each of the units I attended over the years was simply too busy and, if you were to be relocated, the choice of slot was determined by what was available, not necessarily what was ideal for the patient. I did, however, request an alternative time, since I found the evening slot difficult to adjust to. I often suffered from cramp and found it difficult to sleep when I arrived home. I was eventually given morning slots on Mondays, Wednesdays and Fridays and that was to be my schedule until I moved to home dialysis.

My experience at the hospital was not always good. Renal care enables a closer relationship between patient and provider to develop than is often the case with other medical disciplines. This is particularly the case with patients on dialysis, where they will see the same nurse or group of nurses, week in week out. A good relationship between patient and nurse is, therefore, desirable and it should, self-evidently, be combined with care and compassion. None of these qualities requires intensive training; all require a particular attitude of mind and this, in my experience, was not always there. In addition, I could see how some simple changes could improve the lot of patients on the ward but I became increasingly frustrated at my inability to get any changes introduced while I was on dialysis.

It is important for patients to feel that they are more than just an object that needs to be treated. It can help a patient gain some self-respect if he or she assists in preparing for their treatment. This might mean taking their weight, their temperature and perhaps their blood pressure. It could also mean learning a little about lining the machine, getting your tray ready with dialyser, needles, swabs and so forth. Although this might mean a small investment in training from the nurses in the short term, it will help them in the longer term and it will also give patients a feeling of empowerment, which is so important for long-term treatments such as dialysis. This, though, was not my experience and it was left to patients as to whether or not they were able to assist. The view from the nurses was that they were too busy to do anything other than connect and disconnect the patients.

Because the patients are likely to see the same nurses week in, week out, it is not only possible but also desirable to develop a good relationship between the nurse and patient. In my experience, this did not happen until I was transferred to the self-care unit prior to dialysing at home. It was often the practice of nurses, having put the patient ‘on’, to sit at the computer where it was clear that they were not always working! All I am suggesting is that the nurses talk to their patients and get to know them better. It will help the nurses understand the concerns of their patients better and it will certainly help the patients feel that they ‘matter’ and are not simply objects to be processed.

Regular visits from the consultant did not take place. Those consultations that did take place invariably took place at the bedside, rather than in the more discreet confines of the consultant’s room. Although I was told I had a nominated nurse, which is a sensible concept, even when she was on duty she did not look after her nominated patients. I never managed to understand what the role of my nominated nurse was. I was on the transplant list for the time I was dialysing and was told that I should have antibody checks carried out regularly. This was not done and I found it very difficult to get these blood tests done in the satellite unit although I was told it was important to monitor them.

Insufficient care and attention was given to monitoring for infection. In my case, I developed a nasty infection around my permcath but, despite regular attention given to that area by the nurses, as they attached and detached my line to/from the machine three times a week, it was my wife who noticed the infection, as a result of which I was immediately admitted to hospital as an in-patient and I was given large doses of antibiotics to stem the infection. I had the old line removed from my right jugular vein and a new one installed in my left jugular vein. How is it possible for a nurse not to notice something that he or she looks at so regularly when they should be specifically trained to be aware of the risk of such infections in a patient with a permcath?

Cannulation protocols vary considerably between nurses. It was only when I started training for home dialysis that this issue was explained to me. The two main techniques are ‘button hole’ and ‘rope ladder’; each has its advantages and disadvantages but none of this was explained to patients in my unit. Without careful needling, a patient can end up with very ‘lumpy’ access points, which may not be necessary and can be cosmetically very disturbing. It appeared to me that the nurses would ‘needle’ wherever they could, rather than following one or other of the main techniques.

Holidays are very important for dialysis patients. It is, reasonably enough, a patient’s responsibility to organise whether or not a slot is available at a particular centre, but procedures were not in place when this initial research had been done, to set the medical requirements in train. It was often not clear which nurse was responsible for liaising on my behalf with the holiday centre and it happened more than once that my unit contacted me on the eve of a short visit away for information on exactly where I was staying, who the contacts were and what was needed. This is very frustrating, given that trips have to be arranged at least six weeks in advance and dialysing away from your main base can itself be stressful.

After two years or so of increasing frustration, I asked one of the nurses if there were any alternatives to dialysing at the hospital three times a week. One of the better informed nurses suggested that I might enquire about dialysing at home. This seemed to me to be an excellent option and I was able to get the assistance of a nurse recently transferred from another hospital to teach me to line the dialysis machine and, much more importantly, to needle myself. It was only now that I learnt the differences between the various needling techniques, which, in my view, all renal nurses should know about and discuss with their patients. Training was slow at the satellite unit and there were various parts of the process that I could not be taught as there was never enough time between the am/pm and pm/evening dialysis sessions for the nurses to take the time to explain to me what I needed to do.

I was, however, finally transferred to the main hospital and I became part of the local self-care unit. Dialysis patients there were able to manage their own care at a level that suited them. Some patients dialysed at the unit independently of the nurses who simply kept a watching brief over their patients, while others were at various stages of training prior to beginning dialysis at home.

Since I had already had some basic training, I quickly completed my training and, having arranged through the hospital for an appropriate machine to be installed at home and all the necessary kit to be delivered, I began dialysing at home in November 2011 and I can quite honestly say it that it changed my life. I was given excellent care from both the nursing staff and the technical support team. Each month a nurse would visit me at home and take my blood for analysis. I was also able to arrange regular visits with the consultant. More importantly, I felt I had regained a greater control over my own life, which is so important for patients with chronic conditions. I began dialysing every other day, which meant I’d be doing a Monday, Wednesday, Friday rota one week and a Sunday, Tuesday, Thursday Saturday rota the following week. I was, therefore, dialysing one session per fortnight more than previously, which helped me to feel a little better and relax a little more with my fluid and dietary allowances. Dialysing at home also meant that I could set my own dialysis times to suit myself and my wife, rather than following a hospital routine, which enabled us to manage our lives better and helped me to ‘dialyse to live’, rather than ‘live to dialyse’.

It was a very positive step for me to be able to dialyse at home. It is not an option for all patients, however, and it is dependent partly on the patient’s willingness to take greater control over their lives but also on their particular domestic situation.

I would recommend that the renal nurses should be trained always to consider which of their patients might be suitable for dialysing at home and to broach the subject with suitable patients. Many patients will not want to go down this path but, with the help also of patients who are already dialysing at home, it is always worth discussing it because it is clear that the long-term outcome for home dialysis patients can be better than for those in hospital. This may require an investment in terms of time and money but it is one that I believe will pay dividends in the medium to long term.

I found the most difficult thing to come to terms with was self-needling but this is not always essential. In the self-care unit it was possible to do everything for yourself, except self-cannulation. At home it is possible to train your carer to undertake the cannulation if he or she is prepared to take on the responsibility.

In my case my wife was not involved in my training until I actually came home, when she learnt from me how to line the machine, prepare the tray, and so forth. Because dialysis takes up so much of one’s life together it is important, in my view, to involve one’s partner in the training from the beginning. It is easier to learn with someone else and it also gives two heads the opportunity to learn what to do should something go wrong.

As I researched options for dialysis, it became clear that other options to dialysing three times a week in hospital did exist – home dialysis (as I have discussed above), but also nocturnal dialysis and using a portable dialysis machine, for example. In addition, there are options available for patients to improve their chances of receiving a transplant through the swap, or paired, scheme. It may be unreasonable to expect all nurses to have knowledge of all these issues but in my experience, none of the nurses knew about any of them. It was only when I asked some specific questions that I was told about home dialysis. This information ought to be included in basic nursing renal training, in my opinion.

As a dialysis patient I visited the units in Penzance, Truro, Jersey, Norwich, Edinburgh (the Holiday Dialysis centre), Inverness and Elgin. All the units were different, in a number of ways, from my home base and in each case each unit could have benefited in some way from the experiences of others. In my view, periodic meetings of senior nurses with their peers could only be beneficial and they could discuss a whole range of issues such as exercising while on dialysis, transport, the provision of food during dialysis sessions, how personal care plans are used, the role of the social worker and whether there might be a role for a patient representative. I am sure that there are many other subjects that would be of relevance to both nurses and patients.

When I finally received the call from the hospital in August 2011, it came as a complete shock. After so many years of dialysis, it was no longer at the forefront of my mind and I was pretty much resigned to leading a life of dialysis. After a mad rush through the night, my wife and I arrived at the hospital at 7:00 in the morning and we spent a whole day undergoing a variety of tests. We were also aware that another couple had been called. Depending on the outcome of the blood tests, one of us would be offered the kidney. This was very difficult for both of us and for some of the time both couples even shared the same waiting room. During the day we were given a little information about the donor and the family and the circumstances surrounding the donor’s death. It was explained that there was a risk, albeit a very small one, that the kidney might not work and that, if it did work, it might take some time to ‘wake-up’ – possibly six weeks or more. This presented my wife and me with a bit of a problem. I was pretty stable on dialysis and we were managing our lives as well as could be expected. Our concerns were that, having waited nearly four years for this kidney, if it did not work, this might have an impact on my antibody levels and my chances of getting another kidney in the future. These were impossible questions to answer but they had to be asked. The general view, however, from the doctors was that there was only a small risk of the kidney not working. I should go for it. Thus, when it became clear that I was to be the fortunate recipient, we did go ahead and I went up to theatre at about 21:00 that evening.

My experiences as an in-patient immediately post my transplant operation, and during the follow-up clinic appointments were generally good.

On the wards, the ‘three Cs’ are of paramount importance: Care, Compassion and Communication. The standard of nursing care on the wards varied considerably from shift to shift and from day to night. In general, the day staff were more proficient than the night staff. They had a better understanding of the patient’s illness, were more likely to talk to their patients (although this was still uncommon in my experience), they were more attentive, responded better to patient requests and often had a little more time to spend with their patients.

Hygiene standards on the ward were mixed. Not all nurses or doctors wore gloves when taking blood, for example. Blood pressure cuffs were never wiped before taking a patient’s blood pressure. What most shocked me, however, was when breakfast was handed out, and my Weetabix was handled with bare hands.

Some nurses would offer the patient a bed bath, but most did not. Some would actively encourage the patient to move, get up from the bed and walk around the ward, but most did not. One nurse only in my experience went to the trouble of introducing herself to me as the patient. This is such a simple issue but so important from the patient’s perspective. You really want to know who is looking after you so that you can speak to the right nurse if you want some advice, help and so forth.

As an out-patient, I was very well treated and felt in good hands most of the time. When it is time to be discharged, there are always delays, which often seem to be the responsibility of pharmacy. This, I am sure, is difficult to avoid but I am also sure that there must be a better, more efficient way of organising a patient’s departure. This is in the interests of the patients themselves but must also be in the interests of the ward in freeing up a bed promptly.

The importance of taking one’s antirejection drugs is paramount. If you fail to take them you may lose your kidney. This needs to be stressed over and over again. I am constantly amazed at the number of patients who ‘forget’ to take their drugs! In addition, it is always important to emphasise the side effects of the drugs. Again, in my experience, this is done but particular attention should be given to the effect the antirejection drugs can have on one’s skin and on one’s susceptibility to infection.

Rejection is a constant worry. There are no guarantees with transplantation. This is another issue that needs to be highlighted. In my experience, this is done competently. My one additional comment in this area is that there is very little attention given to the psychological needs of the patient post-transplant. Initially, it is a very worrying time. You attend clinic three times a week and there can so often be setbacks, that the whole process can be a real roller-coaster. Little thought, however, is given to this area. The appointments concern themselves with the medical side of things only. I do not know whether a counsellor is even available.

As visits to the clinic become less frequent, it becomes increasingly important for a patient to be able to monitor his or her blood results. Patients are understandably concerned about their progress and, although I was told that the hospital would contact me if there were any issues, there are sometimes occasions when issues escape the attention of the experts and, in my case, my very low white cell count was not picked up sufficiently quickly and I ended up attending hospital on a Saturday morning for an emergency procedure.

My husband was diagnosed with kidney disease in 1977, the year we met – thus my experience of living with a partner who has kidney disease has been long and varied. He told me about his medical condition right at the beginning of our relationship, but I think we were both very naïve about the implications for our future together. His condition was managed conservatively for the next nine years. It was always there in the background but did not impact hugely on our life.

The big change came when he was told his kidney function was deteriorating and he should start on a low-protein, low-sodium and low-potassium diet. This was quite hard to manage whilst providing for our two young children, as we had very little advice about how to do this. Essentially just a few diet sheets and prescriptions for the relevant special foods required. These foodstuffs were mostly unpalatable and difficult to prepare. I remember crying over the first meal that I made because it looked so meagre and awful. Thankfully these (Giovanetti) diets are no longer used.

Transplantation followed about nine months later, in January 1988, when my husband’s mother donated one of her kidneys. Living transplants at the time were very unusual, with only about 5% of the total being performed in this way. Two major operations within six weeks and various complications over the following year, resulting in a third operation, finally stabilised my husband’s condition. It was a rollercoaster, never knowing what would crop up next and not quite daring to believe that eventually it would be alright.

I can remember a mother at the school gate saying that she didn’t know how I could cope with all that was happening. I thought to myself that I didn’t know either, but I didn’t have much choice! We did have kind friends and family but it was still a challenging time, trying to be supportive to my husband who was struggling to maintain a positive outlook, balanced with keeping life as normal as possible for our children aged four and two. The culture at the time was very much ‘stiff upper lip and get on with it’. In retrospect it would have been lovely to have someone to voice my concerns to, who understood the road we were travelling.

Eventually we went on to have 19 wonderful years of normal family life, the only reminder of the transplant being the various medications that my husband took daily and the three monthly hospital visits. However, transplantation does not cure kidney disease; it only gives respite from dialysis for the lifetime of the replacement kidney.

By 2006 my husband’s kidney function began to deteriorate and with it his overall condition. Having to take early retirement on health grounds in 2007 was a real blow to his self-esteem; he had loved his working life. Early retirement can be a difficult transition in normal circumstances but when you feel unable to enjoy the new freedom that retirement brings because you are too tired it is very frustrating. As his condition worsened, our lives became very restricted. We were unable to do much because he felt so unwell and tired all the time. Just climbing the stairs was making him breathless and he began to dread the short walk to the station to travel for his fortnightly hospital appointments.

My husband developed sleep apnoea, which meant we could not share the same bedroom. Snoring is often joked about but sleep apnoea is not funny – it gets to the point where you spend your whole time lying there waiting for the person next to you to take their next breath. A 24-hour monitor revealed that he was suspending his breathing up to 40 times per hour. No wonder he was exhausted all the time when he could not get any proper rest. It was not until dialysis commenced that this problem began to resolve itself, as the large amount of excess fluid he carried was gradually removed.