UK - Dialysis to loose specialist commisioning service

[JW77]

Yet again kidney patients are being treated as mere numbers, and not consulted.


http://www.kidney.org.uk/home/news-2/breaking-news-dialysis-to-lose-specialised-commissioning-status/


BREAKING NEWS - Dialysis to lose Specialised Commissioning status

 BREAKING NEWS - Dialysis to lose Specialised Commissioning Status

 

Despite every effort from the renal community – led by  NKF and the All Party Parliamentary Kidney Group (APPKG), NKF learnt yesterday that Ministers have decided that as from April 1st 2015 Dialysis will be commissioned by Clinical Commissioning Groups (CCG’s) and that NHSEngland  will no longer be responsible for dialysis.

 

At a meeting in the Department of Health yesterday (18th November 2014), Richard Jeavons, Director of Specialised Services, told a stunned meeting that Ministers had informed him that Dialysis was no longer to be a Prescribed Service, and that after a period of consultation led by the Department of Health which will run from the end of November for six weeks, a Bill will be introduced in Parliament during February and the change to CCG commissioning will commence on 1st April 2015.

 

The meeting also learnt that co-commissioning was not an option available to Dialysis unless the move to CCG commissioning failed.

 

The meeting was not able to learn from Richard Jeavons any detail as to how CCG commissioning would work or what commissioning models would be used.

 

The Renal community led by the NKF must now consider if there is any further chance to reverse this decision or delay its implementation whilst proper and full consultation takes place ( not over the Christmas period as planned).

 

Please return to this website www.kidney.org.uk frequently for more news.

[cassandra]

Could you explain to me what this 'sudden' change could actually mean for D-patients? I read about CCGs, and don't see much difference with the previous unelected PCTs.

I did notice that every CCG must have a lay person, so when one day, I feel good enough, I'll give it a go.

[JW77]

As far as I understand it, it may result in ALL kidney services, esp dialysis being put out to private tender. I'm not entirely clear about it in lay terms. I know that some companies run units that are quite good. Others, and I've been in one, in the UK, put money first, patient last. THAT should NEVER EVER happen.  It worries me, maybe it shouldn't but it worries a lot of other patients, esp as these changes seem to be implemented very very quickly

Also as I understand it CCG's are run by GP's (according to Wiki) who know nothing at all, about the specialist area of home dialysis, kidney patients, or dialysis in general.  Would you trust you GP with ALL your renal care, or just see a consultant once in a blue moon!) CCG's are required to have 1 nurse and one specialist! Chances of him or her being renal? Very very VERY small.

The fact that there's been no consultation with patients, or representatives (in the same way there was non with welfare reform), is whats worrying.  Its all very well offering patient choice when there is non!

Keep an eye on the NKF website for further news.

[JW77]

Incidentally the traffic on the facebook pages has gone rather mental.. This story is concerning a LOT of people.. Strangely its not on the BBC yet..

I wouldn't trust a group of GP's to deliver my dialysis services, esp if the service is provided by one of the cronyphony profitmaking companies..  Its the end of NHS services as we know them...

[Sugarlump]

I am going to write direct to my MP (who also happens to be a Doctor at Ipswich Hospital) to see what position he takes and what information he can give me.
I think we should all be concerned not just for the future of dialysis and associated services but also for the NHS as a whole.

[kristina]

Could anyone please explain to me what this is all about and what it means to NHS-ESRF patients in the UK ?
I am only asking because I honestly don't quite comprehend...
Of course, I am fully aware that "they" try to "cut costs" and NHS-medics are supposed to cut corners at all levels,
but how can all that practically influence NHS ESRF-health care in the UK in the future ?
Does it mean that NHS-doctors have to decide who is "worthy and permitted"
to receive NHS-medical treatment (dialysis/transplant) when in ESRF
and who is not "worthy" and therefore not "permitted" to receive ESRF treatment in their hour of need?
Could anyone please explain what this is all about and what it really means ?

Thank you from Kristina.

P.S. JW77 mentions that kidney patients are not being consulted... and my question is:
... who should consult me and how can I be "consulted" when I am not a medical professional but a patient?
Could anyone please explain to me what it means...?
... I always like to be advised medically and I am always listening and weighing things up....

[noahvale]

^

[noahvale]

^

[kristina]

noahvale, if I understand the above explanation correctly,
would that not have a "fascist-Nazi-touch" when doctors are "being forced to make a decision" who is permitted
to have a life and/or medical treatment and who is not permitted to have a life/medical treatment ... ?

Would that not draw again "the wrong sort of people" into the medical profession...?

Thanks from Kristina.

[noahvale]

^

[jeannea]

I hesitate to call anything fascist-nazi. Those people were worse than we can imagine today.

I do believe we need to have a serious conversation about medical care. I have seen people on dialysis who do not belong there. They are unable to take care of themselves, take their medicines or decide their diet. They have multiple end of life conditions. We should not be torturing old people like that just because we are afraid of death. Yes, we will all miss our loved ones when they are gone. But what is important? Is just existing important enough? Or should there be some quality to that life? We need to start those conversations earlier.

I have been very clear with my family what I want. I am not saying kill old people or that we are not worth dialysis. I'm saying look at the millions we are spending to keep Grandma alive at all costs even if it's only for an extra week. I want doctors to learn how to talk to families when these issues arise.

[kristina]

This is a difficult one, because everyone has a different point of view... and it is very private and very personal as well...
... But I still would always try very hard to get one more minute out of life. .. perhaps I am "an old fighter" by my very nature...
... Nevertheless, the most important point for me would still be to be mentally completely alert
and therefore be able to think and decide on my own and retain my independent mind
... and  to be able deal with my own situation correctly...
... I could imagine that perhaps one day I might no be able to look after myself any longer...
... but I still would not like anyone else to make any decisions for me... medical or otherwise...

[Sugarlump]

The way I see it is the important factor is "Quality of life"...
is someone is still capable of achieving a relative quality of life that should matter more than quantity or age barriers. (When I first started dialysis I used to sit next to a wonderful guy in his 80's who always turned up for
dialysis in a very dapper three piece suit and tie and once a year took himself off on a dialysis cruise around the Med for 2 weeks and chased the ladies!!! Sadly he had a heart attack and died but he certainly deserved his post 75 dialysis.
If I ever felt I no longer had any quality of life I would stop dialysis.

Those consulted but apparently ignored were the All party Renal Services Committee (made up of MP's) and the NKF (National Kidney Federation) also asked to put forward patient's views... but also appear to
have been ignored. 38 degrees (action group) are behind it as well, collecting signatures for a petition.

[JW77]

http://epetitions.direct.gov.uk/petitions/72236

Sign for what its worth.

The gist of it. UK Kidney patients aren't happy by being 'Bought Out, or rather Sold Off'  into healthcare provided, not by a National Health Service, but by multinational (including American, and other) private companies on contract.  The changes so far are not working, and these newest 'suggestions' are not going to work.

We could soon be saying, God Bless America, welcome to the State of England. (Over my dead body)...

Incidentally Scotland and Wales have opposed these ideas in the past, so we could just piss off across the borders! OOh we'd be health tourists.. How very quaint!

http://youtu.be/ultKvnw2h3Q
Is worth a watch if you can stomach it without getting frustrated and Angry and wanting to kick a CEO, of say, a catering, hospital transport, or similar, in the nuts


@noahvale

Not being consulted, as in the representative organisations of kidney patients, the NKF, BKPA, even to some extent Kidney Research, AND individual patients..

We weren't involved in the changes for the Welfare Reform  DESPITE, the Gov Website stating they had consulted 'Organisations and Individuals'.  They didn't say who, and certainly Kidney Disease was never to my knowledge discussed  in depth during the decision making time.. Even my own MP is unable to tell me WHO was consulted!
-------------------------------------------------


I would rather have my consultant, and hospital team and 'Trust' funding  my care and helping me decide then a group of GP's, who know NOTHING about renal care. Some of who will have their hands in the pockets of private companies and and decide how much I'm worth this year. Or Not...

--------------------------------------------------

THAT is what this all about.  The NHS has always been 'Patient First'..  I've experienced first hand private renal healthcare where it was 'Management first, Patient Last, how many hours do we charge for this patient, who isn't that important'

Contracted cleaning companies cut corners.  Where hospital kitchens provided nutritions food, caterers provide shite, nursing staff positions are being down banded, and they are told to meet targets, not cater to the patients needs.  Don't get me started on transport contracts..  Its always been a problem, but fining a private company doesn't solve the issue. They pay, carry on ripping off the taxpayer, and reducing the level of care..

Right..  attempts at sleep..  Night all. Pleasant dreams.... 

Its one of the few times I've actually feared for my LIFE and the life of other patients..

[Sugarlump]

The feeling is mutual.
 

Is there anything we can do?

[kristina]

http://epetitions.direct.gov.uk/petitions/72236

Sign for what its worth.

The gist of it. UK Kidney patients aren't happy by being 'Bought Out, or rather Sold Off'  into healthcare provided, not by a National Health Service, but by multinational (including American, and other) private companies on contract.  The changes so far are not working, and these newest 'suggestions' are not going to work.

We could soon be saying, God Bless America, welcome to the State of England. (Over my dead body)...

Incidentally Scotland and Wales have opposed these ideas in the past, so we could just piss off across the borders! OOh we'd be health tourists.. How very quaint!

http://youtu.be/ultKvnw2h3Q
Is worth a watch if you can stomach it without getting frustrated and Angry and wanting to kick a CEO, of say, a catering, hospital transport, or similar, in the nuts


@noahvale

Not being consulted, as in the representative organisations of kidney patients, the NKF, BKPA, even to some extent Kidney Research, AND individual patients..

We weren't involved in the changes for the Welfare Reform  DESPITE, the Gov Website stating they had consulted 'Organisations and Individuals'.  They didn't say who, and certainly Kidney Disease was never to my knowledge discussed  in depth during the decision making time.. Even my own MP is unable to tell me WHO was consulted!
-------------------------------------------------


I would rather have my consultant, and hospital team and 'Trust' funding  my care and helping me decide then a group of GP's, who know NOTHING about renal care. Some of who will have their hands in the pockets of private companies and and decide how much I'm worth this year. Or Not...

--------------------------------------------------

THAT is what this all about.  The NHS has always been 'Patient First'..  I've experienced first hand private renal healthcare where it was 'Management first, Patient Last, how many hours do we charge for this patient, who isn't that important'

Contracted cleaning companies cut corners.  Where hospital kitchens provided nutritions food, caterers provide shite, nursing staff positions are being down banded, and they are told to meet targets, not cater to the patients needs.  Don't get me started on transport contracts..  Its always been a problem, but fining a private company doesn't solve the issue. They pay, carry on ripping off the taxpayer, and reducing the level of care..

Right..  attempts at sleep..  Night all. Pleasant dreams.... 

Its one of the few times I've actually feared for my LIFE and the life of other patients..

The feeling is mutual.
 

Is there anything we can do?

I agree with both of you ... and, like both of you I would also like to know what we as NHS-patients can practically do ?
... Problem is that because of our medical situation we are quite fragile and extremely vulnerable ...
... and that fact alone puts us into a very fragile defensive situation straight away from the very start...!

...We as NHS-patients are not even organized constructively enough in any powerful Patient Organisations to get some assistance
or help from each other... or some real practical advise... Patient Organisations in the UK are well known to "have no teeth" at all...
... The sad thing about the situation is that there are many existing Charities who claim to help,
even Patients Charities and Patients Associations, but once you really need any help from any of these Charities or Patient Associations,
you suddenly don't fit into any of their "objectives" for one reason or another...
... It is therefore very difficult for NHS-patients to find a constructive way out of this terrible dilemma...

[jeannea]

To give you a very American idea, would you be able legally to try a class action lawsuit? I know it would be very difficult. You would need an organization like NKF to help you.

[kristina]

Could prove to be extremely difficult, if not totally impossible ...
... if sooner or later this-class-action-lawsuit-group of ESRF-patients "stumbles"  over a "divide and rule" difficulty ... 
...especially if each of the ESRF-patients in this class-action-lawsuit-group
is on the transplant-list and hopes individually for a soon-to-be-kidney-transplant-operation ...

[cassandra]

Us in the UK are 'per person' not that 'expensive' in comparison with quite some other countries, see http://jasn.asnjournals.org/content/23/8/1291.full.pdf .
Canada is cheaper, and I understand there to be quite some 'self care clinics'. Moving more to home-D and selfcare clinics might be an idea? That is of course for people who are able to do that.

And I think this move towards putting decisions in the hands of GP's is scary, and dangerous. Not only for renal patients, but for any patient who doesn't have uhm a headache or a twisted ankle.

[kristina]

I agree, it is a bit scary, especially since it has become so well known through the media
that many NHS-GP's and NHS-doctors are so easily bullied by their employers, the District Health Authorities
to make "cost-effective" decisions...

[JW77]

For those not following the other forums the NKF, and to some extent the BKPA (what the hell KRUK is doing I don't know, probably too much donation from drug companies)

There is, a call to action, for patients. To Write to their MP's for a start, also fill in a very short questionnaire voicing their concerns to the NKF.

http://www.kidney.org.uk/home/news-2/dialysis-commissioning-full-briefing-and-urgent-call-to-action/

Some are calling for public demonstration, which, quite honestly I think its about TIME we got ourselves on the media and recognised !

[kristina]

I agree with you JW77, it would be about time to get ESRF-people recognized, especially in the UK...
instead of continuing to have these ESRF-patients turning from  one NHS-doctor to another NHS-doctor whilst remaining on NHS-waiting-lists,
in an effort to keep services of the NHS at a very low cost... to the detriment of the patient's health and well-being...
(NHS-doctors have been known to be "sponsored" by drug-companies with exotic holidays and many other special treats...)
... and many NHS-doctors don't give the ESRF-patient a real positive idea of how to go about medically in their ESRF
or how to avoid further disasters in their ESRF-dilemma...

... I am not too sure whether it would really help to write to an MP, because MP's are well known to get many letters
and our MP's are also known to be very short of time at all times and there is hardly any time to read our letters ...
... MP's are supposedly overloaded with too much work... they often complain about this in an effort to get more money...
The NKF... well, their voice and concern is hardly ever heard by the public, in fact they are hardly known by the public...
 ... and I am not sure they can could practically assist us ESRF-patients, because they are very low profile...
... and many ESRF-patients don't even know they exist...many of the NKF-employees have "their very secure, well paid job" with the NKF,
... set-up as a Charity and supposedly speaking for the urgent needs of kidney-patients, but the voice of the NKF is hardly ever heard...

Sorry to sound a bit pessimistic, but I have been constantly "in the kidney-game" for over 43 years and luckily I have survived so far...
... But, as you can well imagine: after all these years, I am not falling for any pretences and cheap promises any longer...

(In our neighbourhood we had just recently a Charity exposed...
...This Charity was supposed to be caring for people with serious medical heart-conditions
... but all they were doing over many years, was collecting lots of money "for Charity" to really finance their own luxurious life-style
and they gave some pennies to a Cousin of theirs, who had a medical heart-condition...
.... As you can imagine, that was a very shocking experience for many good-minded, charitable people who had donated money to this Charity...)

[JW77]

FURTHER update news.

While patients are unlikely to get an extended consultation period, the department of health have published THIS document.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/380041/2014_11_Consultation_document.pdf

Questionnaire for kidney patients is at the END. It can also be filled in online.

Whether or not  this is just a 'we've consulted' exercise or whether it will be listened to I don't know.  for some reason renal has been catagoriesed alongside dialysis to be looked after via CCG's.

I can foresee so many teething and administrative problems, by which time it will be election time and the blame game will be able to start, while kidney patients suffer!

@Kristina.. I should point out that many of the NKF employees are kidney patients, or relatives or spouses of kidney patients. In the same way that KPA usually have the same. Without them things could be a lot worse.

Many of the employees have expenses paid, with a few key positions, that are needed to run a charity. I don't work for the NKF (have done, voluntarily in the past) but I do support what they do. If they didn't exist kidney patients in the UK would have no voice at all. Even the chief exec once quoted it was a dinosaur!

I've been in this game almost 40 years myself, so the mind boggles why the general public STILL don't have a clue about kidneys, OR the supporting charities..



Kidney Research UK tends to get more publicity. BUT I think there's an inter political thing between the 2, or organisational.. The NKF has only just started coordinating with the BKPA...  Mostly after one of the key founders of the BKPA passed away. Personally I think thats a good thing..

 KR spends a lot of money on advertising and 'research' tends to be a popular idea with the public, even if they don;t think to ask what sort of research...


The NKF HAS set up the All Party Parliamentary Group for renal services. This means we have SOME voice, via the NKF in parliament.

However WHY we don't see real reports in the media and on soaps of kidney failure, why the NKF or BKPA or other kidney organisations aren't in every GP surgery in the country, and schools and sports centres in the same way Cancer Research Diabetes UK and Breast Cancer UK are I don't know.  I for one would love that.

What I do know is those charities spend FAR more money on advertising, and cancer is far more emotive and likely to pull at heartstrings than kidney failure..

[kristina]

FURTHER update news.


@Kristina..  If they didn't exist kidney patients in the UK would have no voice at all. Even the chief exec once quoted it was a dinosaur!

I've been in this game almost 40 years myself, so the mind boggles why the general public STILL don't have a clue about kidneys, OR the supporting charities..

It does not surprise me that the general public hardly knows anything about the UK-kidney-"Charities" ... problem is that these "Charities" keep themselves very much "low key" to the detriment of many UK-kidney patients who don't know where to turn to in their despair... Fortunately, these days ESRF-patients have the computer to turn to... and they can research where to get practical help... Before the computer there was nothing I came across in the past 43 years to get any help, except for pretending to be a medical student and reading everything about kidney failure in the medical libraries...

[JW77]

Aaah we had USNET.. remember USENET:)  That turned up in the early days of the computer..  Aaah dialup connections, offline browsing! and USENET..

 alt.support.kidney-disease
alt.support.kidney-failure

Forrunner of these wonderful glossy WWW interfaced forums:)