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No decision about me , without me - Devolving Dialysis Services

The NKF together with the British Kidney Association and the Polycystic Disease Charity sent a letter of concern ( attached ) to  Professor Sir Ian Gilmore complaining that during the process of considering the devolvement of Dialysis Services from its status as a specialised Commissioned Service to that of a service commissioned closer to communities, no heed had been given to the basic NHS principle “ No decision about me , without me “



Dear Sir Ian


Thank you for discussing the recommendation by NHS England to devolve renal dialysis to Clinical Commissioning Groups during the Specialised Healthcare Alliance meeting on 15th October.


As a result of those discussions you asked us to provide a summary of the process that NHS England adopted, which is below. We have also taken the opportunity to highlight the real concerns of the kidney community and particularly kidney patients.


We became aware that NHS England was considering devolving dialysis services following an article in the Health Service Journal in May 2014, but this was not formally confirmed until 3rd October 2014, when NHS England published its ‘Commissioning Intentions 2015/16 for Prescribed Specialised Services’.


On 9th August we wrote to Michael O’Donnell, Head of Strategy for the NHS England Specialised Commissioning Taskforce, and offered to work with him and colleagues to help inform any considerations which were underway. We also sent him a copy of the Kidney Health: Delivering Excellence report, which provides a comprehensive overview of the ambitions of the renal community (patients and professionals) and has a specific ambition about specialised commissioning explaining our views. We did not receive a response to our offer.


Stakeholders were informed by telephone call on the morning of 3rd October, of the plan to change the status of dialysis. NHS England published the commissioning Intentions at lunchtime on the same day. The following organisations were informed:

British Kidney Patient Association

National Kidney Federation

Renal Association

British Renal Society


A letter was subsequently emailed to the 4 organisations above on the afternoon of 3rd October. It was also emailed to the Dialysis Clinical Reference Group via its chair. A copy of the letter is attached.


It is important to say that the kidney community does not think current arrangements and services are perfect. We are keenly aware that services need improvement and are more than willing to engage in constructive discussions to improve prevention, access to home dialysis therapies and the ever-present issues with dialysis transport. However we believe that both process and lack of engagement with the kidney community may be problematic because they do not uphold the principle of “no decision about me without me”.


The NKF held its annual conference for kidney patients and carers between 10 and 12 October 2014, with over 250 attendees. We discussed the intention of NHS England to change commissioning arrangements and there was great concern and anxiety about the implications of these changes on patient provision and safety, as well as at the process. The key issues to emerge were whether GPs (because they are generalists) have the necessary  experience and knowledge about the needs of dialysis patients to be able to commission services for them. Most dialysis patients have very little need to contact their GPs and many kidney  patients know a great deal more about kidney disease than the typical GP.


The NKF provides the secretariat of the All Party Parliamentary Kidney Group, which has over 120 MPs and peers as members. The next meeting of the APPKG is on 5 November 2014 in the House of Commons. The Chairman of the NKF will inform the APPKG of the intention of NHS England to change the commissioning arrangements and the role of your committee in making recommendations to the Secretary of State on this matter. He will urge the APPKG to highlight patients’ concerns.


In addition, we have a number of outstanding questions/concerns:


  • We have not been made aware of the clinical imperative or commissioning rationale which led to dialysis services being chosen as one of the first to be devolved
  • There was no consultation with the kidney community prior to the announcement and we have been informed by NHS England that they see no need for one
  • We have been informed that this process will be completed by April 2015 and that we will be invited to a meeting to discuss the plan. We are concerned over the extremely short lead time within which it is proposed to make these changes, particularly given the lack of detail over how local commissioning will be designed and the already considerable stresses in the local CCG system. It should also be noted that, two weeks later, this invitation is still awaited and kidney patients are understandably concerned at the lack of information or opportunity to shape their service
  • We have been informed that dialysis services will be run by local groups but there has been no indication of what type of groups these might be e.g. CCG consortia, Clinical Senates, clinical networks. We have been informed that the way commissioning happens locally will be up to local sensitivities and we cannot understand how competing priorities will be balanced to ensure continued support and investment in dialysis services
  • Transplantation is an inherent part of kidney care for those for whom it is suitable, ideally pre-emptively and otherwise an option for about one third of those on dialysis. You will be aware that many of those on the waiting list die before they are offered a transplant, even if they are suitable to receive one. The same specialists will be treating dialysis and transplant patients, often in the same centres, and we need to be assured that any new system will not introduce a fragmentation in this part of our care pathway


In summary we ask that consideration is given to a delay in the ministerial sign-off process and that the kidney community is afforded an opportunity to engage with PSSAG and NHS England before Ministerial sign-off.


Once again, thank you for discussing these matters with us. We look forward to hearing from you. It would be most helpful if you could respond to us before 5 November so that the APPKG can be updated on the latest position.


Yours sincerely 

Fiona Loud, Policy Director British Kidney Patient Association, member of Dialysis Clinical reference group and kidney patient 

Nicholas Palmer, Head of Advocacy National Kidney Federation, member of Transplantation Clinical Reference Group and kidney patient 

Tess Harris, CEO Polycystic Kidney Disease Charity, member of Transplantation Clinical Reference Group and kidney patient



Sir Ian has replied to that letter as follows :-


Many thanks for your letter of 20th October and I have no problem with the contents of the letter being in the public domain.  I asked you to write to me to see if the information you received in the letter dated October 3rd was a result of the meeting of PSSAG 3 days earlier, because as you know the outcome of that meeting and what advice will go to Ministers is not yet finalised.  I am satisfied that the communication from NHS England was merely setting out their intentions, just as was their submission to PSSAG, and there was no intent to undermine the processes or advice of PSSAG.  As for the questions you pose, I cannot add anything to our discussion the other day when I outlined the rather narrow remit of the group I chair.


Many thanks again for getting back to me 


Kind regards 


Professor Sir Ian Gilmore

University of Liverpool