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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Friday, 10 September 2010 16:15

Transplant – A postcode lottery?

A recent piece in the British Medical Journal highlighted the issue of different parts of the country getting you onto the transplant waiting list at differing rates. For example in some areas only a quarter of all new dialysis patients get added to the register within 2 years of starting their dialysis treatment, while in others its over two-thirds. And, the report goes on to say that this does not appear to have any relevance to the patient’s condition.

Did you know that as of now (September 2010) there are over 6900 adults waiting for a kidney transplant, and over 110 children.

The average wait time for an adult kidney is 841 days, but as we know, as we see it happening, many die before they get one! Thankfully children wait less time at just over 160 days!

However, age will play a part, the older you are the less likely you will get on the list or a transplant – which, given that the government is about to scrap the manadatory retirement age, means we will all be working longer and harder – so need one just as much at a greater age as a younger patient. (and as I keep being told I am of advanced years, I have to keep lying about my age!)

The study of 16,202 dialysis patients in 65 UK renal centres was carried out by the UK Renal Registry and the NHS Blood and Transplant (NHSBT).

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Sunday, 12 September 2010 15:41

Keeping occupied on dialysis – a rant!

One of the big issues to address while on dialysis is how to entertain yourself. For some sleep comes easy, and for others, staring into space for 4 hours seems to be their pastime of choice – although how they do that I’ll never know.
I generally can’t sleep so will vary activities between reading, playing games on my iPad or watching a bit of TV on the iPad.
Now that throws up two issues for me.
One is the cost of watching TV by this method and the other is the lack of wireless networks in the hospital.
I purchased a Sky subscription to watch Sky Sports on my iPad, really handy for a Saturday afternoon shift, you’d think, football on and I quite like Jeff Stelling and his bunch of reprobates on the Soccer Saturday Show. I’d already signed up for this service on my iPhone and it was £6 per month, not bad, I thought for 6 channels.
Then I signed up as soon as I got the iPad, and I was charged £35 – for a year I thought, but in fact it’s per month. £35!! They are clearly having a laugh. It’s not 3D, it’s only on a 10″ screen! Murdoch ripping us off again based on his monopoly position. Did I say monopoly? Surely not – that’s not allowed nowadays!! Some sort of financial palm greasing going on I imagine.

So, now to the wireless network. In some areas now they are ubiquitous. But another monopoly rules here – the one that has a company providing a rather second rate combined phone, TV and internet service at the bed side – at extortionate rates for all services.

Time for the NHS to wake up and smell the coffee and stop taking ‘cuts’ from the TV/phone service provider. An ever increasing number of devices are wireless capable now – time to install the network to allow patients to chose how they receive their services. Did I say choose? Surely, is that not what the NHS promotes for patient care?

I wonder.

So, for now, I have to rely on O2′s 3G phone network to stream my TV to me, and I fear Mr Murdoch’s TV service has been binned and I take advantage of CatchUp TV, which is free – and soon the new service from BBC ITV BT et al will be here with Project Canvas – so I wait with baited breath. So, Saturday afternoon’s are sportless. Don’t really see the point of paying £420 a year to watch some football for 4 hours every Saturday. That’s season ticket money. I used to have a season ticket at Portsmouth – but the saga of Pompey is a whole blog in itself – I may be tempted to add something here soon!

Happy dialysing – enjoy your kip! (by the way, please keep the snoring to a dull roar, thank you! :-) )

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Wednesday, 15 September 2010 15:21

Changing the law on organ donation

I recently signed a petition on the No10 web site, for a change in the law on organ donation to presumed consent.
As a dialysis patient, I signed this with what could easily be described as a vested interest at heart. Although, it is worth adding at this time that I have always supported organ donation – a long way before I experienced kidney failure. Indeed, when my father suddenly died just over 10 years ago, I asked that his organs be used, but in his case, the hospital were not able to use them.

Once the petition closed, I received the government response, which could be best described as ‘a bit of old flannel’. Effectively, despite this being a relatively hot topic, no real action to tackle the supply of organs was taken. So i decided to look at this further.

When you view the list of live, completed and rejected petitions on the No10 web site, there are a surprising number of them around this subject of donation. And, interestingly, there are a wide range of views, for and against a presumed consent change, and a number advocating other ideas.

Given that there will be a large number of views on this subject, any change in the law will upset many, as the current law causes upset in its own way through lack of supply.

Another school of thought on this is to charge doctors with asking the donor question at the point of a patient’s death, or whilst still on ventilation. But, this is likely to pressure doctors, and any data collected on this could be fudged.

Given that the NHS has been heralding for some time, a national records capability for patients, surely it would be easier to ensure GPs ask the question about being on the donor register, routinely at appointments with their patients, and this record or ‘state’ to be logged on the donor register. Part of the issue is around getting more people than the current 24% of the population to make the effort to become a registered donor, but a national campaign by GPs would reach a much wider audience on a 1-2-1 basis.

There is still the issue of education of families to individual wishes, but if this was discussed by GPs, then the topic, over time would become a live debate as more and more people would be exposed to a formal question about it.

We hear that many more than those registered would register, but clearly after many years of campaigns there is still a general reluctance or even apathy to making the move. Hand the question to people ‘on a plate’ and this changes the momentum.

And, of course there is the issue of the doctor who has to make the decision on asking the question of relatives about taking organs for donation at an emotional time. The government response to the original petition and others, is that they have employed more transplant co-ordinators. Is the role of asking the difficult question then one for the co-ordinators or somebody specially trained to do this.

I find it interesting that the GMC is advocating doctors have discussions with patients who have been diagnosed with a terminal illness on donating their organs when they die – so the school of thought is there in one form – but it is necessary to coach and train the doctors to deal with what is one of the toughest questions they may have to ask – despite the fact that in many cases, if the question has been handled sensitively the outcome may not be difficult at all and they will receive consent from the relatives.

We can continue to fight for radical change, which in this country means endless debate, argument and counter argument, or we can modify processes to make things better around the way they are. I would love the system to be presumed consent – but then I’m biased – or so I thought! So how about putting our energies into something practical rather than chasing a dream that has not been granted for some considerable time!

The original petition posting and government response is below.

change the law on organ donation.
This petition is now closed, as its deadline has passed.

We the undersigned petition the Prime Minister to change the law on organ donation. More details

Submitted by Miss Emily Caton – Deadline to sign up by: 06 June 2010 – Signatures: 1,714

More details from petition creator
Make organ donation opt out as opposed to the current opt in. The UK has about 18% donation rate, of which have an ‘opt in’ approach whilst countries like Sweden, Portugal, France and Austria all have an ‘opt out’ approach have donation rates between 90-99%. This will decrease organ donor waiting lists to a mere few days compared to months or even years.

Government response
The Department of Health believes that as many people as possible who need a replacement organ should be given the opportunity to benefit from an organ transplant.

In 2008, the independent Organ Donation Taskforce examined the case for moving to an opt-out or presumed consent system. It advised against it and concluded that whilst such a system might have the potential to deliver benefits, it would present significant difficulties which might not bring about the desired increase in organ donation rates.

The Taskforce made a number of recommendations to increase donor rates, of which increasing the number of donor coordinators in hospitals was one. Since the start of the implementation of these recommendations, almost one million more people have signed up to the organ donation register.

The Department is supporting the action to increase organ donation in the UK. Encouragingly, steady progress is being made and the number of organs being donated is increasing. Time is needed for these recommendations to be worked through fully and to assess their success, before looking to change the system further.

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This is a personal recommendation for the Mesogeios Dialysis Centre, just south of Iraklio (Heraklion) on the lovely island of Crete.

I have dialysed at the Mesogeios Dialysis Centre on two separate holidays a total of 8 sessions. On every occasion, the service and attention has been excellent. There are doctors on site at all times, and every patient is checked on every session. I was allowed to needle myself, as I prefer, although they do use short tailed needles, which can be a bind when self caring, but a minor issue.
As soon as you are on, you are offered a cooked or cold snack (ham and cheese toastie is ubiquitous) (oh, and they just called it toast!), plus tea, coffee or cold drink, olives, bread and a sweet snack if you wish.

Every dialysis chair has it’s own TV with satellite TV – and on my very first session there, live Premiership football was on and Pompey were playing – bliss! (Pompey, Premiership? Hey ho!)

On the first holiday on Crete I took their offered taxi service to and from the Mesogeios centre as I was about 40 minutes away. But on my last visit I hired a car, so improved journey and wait times. When you first arrive you are warmly welcomed by Maria or one of the other excellent staff. Mesogeios also arrange travel and sightseeing trips, so you get the brief on this when you arrive.

The Mesogeios location is great, just South of Heraklion in the hills. The centre has large picture windows in the direction you face while dialysing. Everywhere is spotless and well presented boosting your confidence.

And for family, if they come with you, they can relax inside with drink and food, or go outside and swim in their very blue swimming pool.

I’d thoroughly recommend the Mesogeios Dialysis Centre for dialysis. It gets you out to the Mediterranean in a hot climate, and with great facilities for your special needs.

Enjoy your holiday. (My next blog entry will be about where I stayed in the hills above Hersonissos in a fabulous friendly family run ‘hotel’, Creta Blue Suites, in the village of Koutouloufari).

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Having dialysed on the island of Crete for two holidays now, I stayed in a great find in the hills above Hersonnisos. Creta Blue Suitesin Koutouloufari is a family run business, with a range of suites set around the pool and bar/restaurant. The Roussakis family is Eleni (mum), Vangelis (dad) and George (son and General Manager, and everything else, it seems!).
You are made to feel so very welcome, and it feels like the family are sharing their home with you. The rooms are excellent, clean and well furnished and 90% have great views out to sea.
From breakfast in the morning in the sun, through lunch and dinner, the food, the brainchild of Eleni, is perfect. The dishes are varied, and generous, as well as excellently prepared and cooked. And nothing is too much trouble, just ask, and George will sort it! So even if you want veggie options, or want one of the dishes prepared a bit differently, the result is always excellent.
During the day, if you don’t want to stray far, you can laze around the infinity pool and enjoy drinks and snacks to your heart’s content. If you venture into the pool, prepare for hypothermia! It’s cold! But in the heat of summer, very welcome.
If you do get out and about there are numerous tours you can take, either by dropping down the steep hill into Hersonninsos and trying out one of the many travel agents. or hire a car. The freedom to explore the island by car is by far the best way. You can take your time, and if you find somewhere you like, you can stay for longer. You can head south into the mountains, east to Agios Nikolaos, or head west to Chania, although I found Rethymnon a pleasant stop. Coffee shops every 2 paces so be prepared to be pounced on for coffee or food by eager waiters telling you they are the best award winning restaurant on the island!! To be honest, most look fine, so just take your pick – but it is interesting to notice the ones that are wall to wall busy, while their neighbour is empty – go with the crowd is my best tip!.

So, all in all, a great place to stay, central to all the good stuff to see and do, and a really friendly feel that makes you feel welcome, especially when you go back and get greeted like long lost friends by Vangelis – lovely bloke! And for dialysis, just 30-35 minutes away, and Mesogeios will send a taxi to pick you up, but I drove to dialysis, as I’m independent and stubborn and want to do things my way! :-) Go and enjoy! This is a real 5 star break!

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