Steve Bone

Steve Bone

Hi, I'm Steve and have been a dialysis patient on some form of self-care or other since 1990. I've dialysed at home, abroad, in hospital, oh and had a transplant for 7 years. I work in the insurance industry for a City based business, but am very fortunate to be able to work from home 4 days a week. I hope, with my experiences, I can help others on dialysis or those facing dialysis in the future! It ain't so bad! Steve

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Saturday, 01 January 2011 10:12

Optional Thursday

On the unit where I dialyse a couple of patients seem to think that they can get away with dialysing twice a week, and Thursday is an optional day. Most of the other patients note this, but apart from grumbles to the nursing team, not much else is said. In fairness to the nursing team, they do explain that this is not sensible, to them on their next session, but call it ‘water off a ducks back’  or ‘in one ear and out of the other’, it seems to have no effect. In truth, some more serious education is required for people before they ever start dialysis, rather than just dragging the patient kicking and screaming into dialysis. Consider the  one who recently joined the unit who is utterly convinced she will have a transplant and will not have a fistula, ‘over her dead body’! I wish her well and hope she does get a transplant, but her lack of knowledge shapes her opinions about dialysis, and that this is a means for her to stay alive, which she does not seem to understand.

Better education at the outset will help to shape the attitudes of patients about why they need to ‘do their time’ and coming off early, or missing sessions is not good for them. Also, better education at the outset will help the nursing teams, and also help with moving people through to some ownership of their treatment, maybe even self-care. So, at the point the doctors ‘diagnose’ the issue and ‘prescribe’ dialysis either there and then, or in a period of time in the future, a referral to training for the patient is required, and if suitable, home training, avoiding the patient ever getting on to the ward.

In the meantime, it seems optional Thursday will continue!

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Saturday, 01 January 2011 10:30

Organ Donation Drive

From July 2011 anybody applying for a new driving licence in the UK will be asked a question to donate their organs in the event of their death, as a means to increase organs donated.

This question exists on the DVLA application forms now, but it is optional, yet despite this over 8m have provided consent. The  new ‘method’ will require an answer either as ‘Yes, I wish to become a donor’, or ‘No, i do not want to answer this now’. This is a pilot scheme to try and increase numbers of donors, and if successful will roll out to other routes such as passport applications.

At the present time approximately 27% of the UK population are registered as donors, set against much higher numbers who claim, through surveys, to want to donate their organs, but have ‘not got around to registering’.

In this country we still have over 1000 people a year who die waiting for some form of transplant.

The public health minister, Anne Milton, suggests that prompted choice processes in the US have taken donor rates from 38% in some states to over 60%, and it is felt the same can be achieved here. However, the BMA has continued its campaign  for presumed consent so proposing dramatically changing the donor scene. They renewed their call for presumed consent just last month. I’ve blogged on this before, so wait with interest, but until presumed consent ever makes it through parliament (assuming it gets discussed again), we must pursue other avenues for patient care to make dialysis a better respected option.

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Sunday, 19 December 2010 09:39

Nocturnal Dialysis

There is no doubt, and much research shows, that nocturnal dialysis, using single needle but extended sessions every day, or 6 out of 7, has huge beneficial effects, almost removing any recovery time, and dramatically changing the impacts on your body of ‘clean’ and ‘dirty’ blood cycles, which for some patients results in a pattern of feeling better or worse during their average week.

The NHS is meant to be actively promoting the extension of home hemo and self care in general, although the localised management and enthusiasm to achieve this appears to be mixed by region.

There can be many barriers to encouraging patients to become self caring. Some of these are emotional, some are practical. However, an intelligent approach to achieving self care whether on your own at home or even in a unit, including offering overnight hemo daily dialysis, is needed that can be applied countrywide. Areas to consider are very simple preparation of machines and needles etc for those that are reluctant to needle themselves, to self caring on a unit where the patient either cannot go home for practical reasons, or simply for lack of a carer at home. Beyond this of course, then home hemo is the real winner as this allows daily dialysis, but of course, nocturnal daily dialysis would open up huge benefits for many also.

Most UK dialyis units are standing idle overnight, so how about a concerted programme of daily nocturnal dilaysis combined with self preparation? Yes, there are issues of staff coverage, costs, but for many this will provide an improved dialysis regime with better health benefits. For those that can or are able to go home, then encouraging daily dialysis either as a night time function or during the day if they can work from home at the same time, is a potential no-brainer, but needs motivation to establish the programme.

It is clear that more could be done for a majority of hemo patients and involve many of them more closely in their treatment, so who do we turn to to get this moving more effectively? Locally it needs motivated and innovative managers, doctors and senior nursing staff to get things moving, but they should be backed by a top down drive to do better in this area. So, NHS, more than just a target, how about concerted action? How about involving patients and patient groups in the development – believe it or not, but many of your patients have brains and excellent business experience – use this free resource to help.

So, the shopping list is:

  • Teach preparation
  • Teach self care on the units
  • Actively recruit more for home hemo and use innovative technologies to get over provision of equipment issues.
  • Develop nocturnal facilites around the UK – improve health as a result
  • Encourage daily dialysis for all home hemo patients with a pattern of treatment to suit the individual life style.

Clock’s ticking, let’s get started……

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Sunday, 19 December 2010 10:04

Three biscuits or a sandwish?

No, that is not a typo in the title! To somebody on dialysis for 4 hours 3 times a week, there are some important issues to address. Namely, a decent cup of tea (or two) and something to eat. Now I am not advocating a full blown menu here, and hugely extravagant culinary masterpieces. The debate comes down to why do we (in Peterborough) only get a ration of 3 biscuits for the dialysis session?

As you can see this is world changing stuff, and Twitter will ‘light up’ shortly on this issue when I tweet this in a few minutes time! It is the major debate, that, and a second cup of tea.

You see, some of us impossibly grumpy old patients travel, and so we get to see dialysis elsewhere, in private units and in other NHS units. Amazingly, everywhere else I have been (and others have been too), we have been treated to 2 cups of tea through the session, sandwiches, two helpings of toast, toasted sandwiches, decent cups of coffee and more. Nowhere has been stingey enough to just give you a pack of 3 biscuits.

Now I understand there are health and safety implications here. Apparently toasters are not allowed locally as nurses set fire to the buildings, sandwiches are out as they are not allowed to brandish sharp implements, tea (1 cup) now has to come in a specified holder in a paper cup as the use of a dishwasher will affect global warming (so no mugs), and the budget ultimately has to come from somewhere (apparently). 

So, consider me and all the other patients in Peterborough who will be excitedly looking forward to the small cup of plastic tea and three biscuit ration 3 times a week, but alas, no sandwiches ( I wish….)

Footnote: To add insult to injury, the old tea trolley with the wonky wheel has been replaced, so the exciting chink of mugs as the trolley makes its way towards you has now gone.  So, back to gazing at the ceiling…….

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Monday, 06 December 2010 18:57

The Dialysis Community

Hi all, my first blog post here on Global Dialysis. I have my own blog elsewhere, and since starting that, and now being involved with this one, it strikes me that when you survey the totality of content, groups, blogs and other great items on the web, there is a huge community with a vast array of voices all pulling in one general direction to support the dialysis community, transplant community and others. If we take this further, it suggests that the coming together of a number of these communities and voices into one cohesive group would become (collectively) more powerful, and the volume of the voices would be ramped up to considerably more than the sound emanating from the individuals. There are many good causes on the go most of thr time in our area of interest, but how much more effective would we be if we were able to mobilise a large and effective group. ··Let me cite one example. The law on organ donation. Check out the No10 web site and you will see a large number of (failed) petitions each attracting a relatively small number of signatories. Work together on this type of subject, develop a rational argument and mobilise the enlarged group to have the impact, and draw REAL attention to issue by the benefits of scale. Not saying this should be the primary argument, but hopefully you get my 'drift' on the benefits of working together. Happy Monday evening all. Steve
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