Commissioning is the planning and purchasing of NHS services to meet the health needs of a local population.

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Dialysis Commissioning in England Briefing paper for KPAs, patients and others plus separate questionnaire and template letter (for action) (Dated 24 th November 2014?) It is proposed that the commissioning of dialysis services in England is to change. This paper from the NKF will help you to understand what is being proposed and what actions NKF wishes you and your KPA to take. What is Commissioning? Commissioning is the planning and purchasing of NHS services to meet the health needs of a local population. How is Dialysis currently commissioned? Dialysis (like Transplantation) is currently a specialised service commissioned nationally by NHS England. What models of commissioning are being proposed in the near future? Three commissioning models are being considered 1. Level 1 where a service will be commissioned nationally by NHS England, i.e to continue with the present arrangements. 2. Level 2 where a service will be co-commissioned by NHS England and clinical commissioning groups (CCGs). CCGs are groups of GP practices and there are over 200 CCGs in England. 3. Level 3 where the service will be commissioned by clinical commissioning groups (CCG s) What model is being proposed for Dialysis? Ministers have decided (subject to consultation) that Dialysis will from 1 st April 2015 be commissioned by CCGs LEVEL 3 and that NHS England will no longer commission this service. 1

What model of commissioning is proposed for Transplantation? Transplantation remains unchanged at present. Commissioned as a Level 1 service to continue. How was this decision reached? NHS England made recommendations to the Prescribed Specialised Services Advisory Group (PSSAG) The Prescribed Services Advisory Group (PSSAG) made recommendations to Ministers Ministers decided that Dialysis services were to be commissioned by CCGs- however Ministers have said there has to be consultation with stakeholders organised by the Department of Health starting at the end of November 2014 and concluding six weeks later (The Christmas period). The consultation will be by questionnaire distributed by the Department of Health to stakeholders. What is the timescale for change? Consultation to run from end of November 2014 for 6 weeks. Final decision made in January 2015 Legislative changes to be made in February 2015 Changes to come into force in April 2015 Comment from the NKF The NKF has serious concerns about the decision to change the status of Dialysis commissioning and about the process adopted for introducing this change we believe it to be hurried and without proper consultation, and we also have not seen any sound reasons to support this change. There is a real risk to dialysis patients if these changes are rushed through without proper planning and involvement of the kidney community. NKF is now campaigning to request a delay in the House of Commons making a decision on any changes to commissioning of dialysis services from April 2015 and to urge NHS England to have meaningful consultation with the NKF and others before making any changes in the future. 2

On the 19 th November NKF placed the following onto its public website:- > 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 1 st 2015 Dialysis will be commissioned by Clinical Commissioning Groups (CCG s) and that NHS England will no longer be responsible for dialysis. At a meeting in the Department of Health yesterday (18 th 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 1 st 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). Comment from Others The NKF has been aware of the possible intention to alter the status of Dialysis commissioning since early July 2014 and has kept its kidney patients and other renal stakeholders fully informed by way of its website, NKF Conference, IN TOUCH newsletter and Kidney Life magazine. Many people have been concerned by these proposals and have made representations trying to halt or amend this change. In many cases those comments have been copied to the NKF. 3

On the following pages NKF has reproduced a summary of the issues which have been raised to date with us. REASONS FOR CHANGE 1. The renal community is not opposed to change but it is only acceptable if it makes the service to patients better 2. What if anything is the benefit of this change? 3. The benefits of this change are said to be improved links to primary care, primary care prescribing and Transport. 4. Under a Freedom Of Information request- in answer NHS England said their reason for recommending tier 3 commissioning was because they want to give CCGs the freedom to invest in preventing renal failure or reducing the risk of renal failure. They also wish to integrate specialised and non specialised services around the patient. They also want to incentivise out of hospital treatment. CONSULTATION PRIOR TO PROPOSING CHANGES 1. There have been no announcements from NHS England to prepare the kidney community - or enable it to gather its arguments 2. A change to Level 3 commissioning cannot be considered or agreed until there is detail provided 3. If national commissioning cannot be retained then co-commissioning is the preferred alternative, even though no detail of co-commissioning is available 4. Who is designing the Department of Health questionnaire for the consultation is it informed? 4

5. Why was the National Clinical Director for renal and the chair of the Dialysis Clinical Reference Group not aware of these decisions prior to 18 th November 2014 surely they should have been central to any decision making? 6. Why did NHS England previously say that there was no need for consultation? 7. Stakeholder groups have not been consulted they should have been before this got to this point. 8. What happened to No decision about me without me TIMING OF CHANGES 1. Why is dialysis one of the first services to be devolved and what is the rationale for this? 2. The timescale for change is unrealistic, hurried and dangerous. The consultation period needs to be longer and the implementation delayed. 3. There should be a pilot first before wholescale change EFFECT ON PATIENT PATHWAYS 1. Transplantation and Dialysis are all part of the renal patient s journey it is two way movement - and need to be commissioned as one. 2. Pre-emptive Transplantation opportunities must not be lost due to this change in Dialysis commissioning 3. The renal patient pathway is very complex and the patients are vulnerable 4. Getting this wrong is a real concern and potentially dangerous 5. Significant risk of harm and high mortality to patients 5

6. These proposals do not deliver prevention or an integrated pathway for patients 7. Will the option to undertake Home Dialysis be incentivised by Tier3 Commissioning or reigned back or worse, become impossible? CCG ISSUES 1. No detail has yet been announced to explain how CCGs will Commission Dialysis services 2. How will CCGs be grouped, and how will competing priorities be balanced? 3. There are 52 renal centers at present. The average renal unit deals with 6 CCGs some more, some less. How will this work? 4. What size of CCG consortia would be best to commission renal services? 5. CCGs are reluctant to take on the complexities of Dialysis ( dietetic, pharmaceutical, rehabilitation, transport, psychological support). Have they been consulted? 6. GPs may be very anxious about this; they already have a heavy workload. 7. CCGs have a lack of knowledge of Dialysis 8. Risk of increased variation of service return to post code lottery service provision. 9. What happens when a CCG has commissioned a certain number of dialysis sessions and then an extra patient needs dialysis? 10. Each GP practice only has 7 dialysis patients on average and GPs have limited knowledge of the needs of dialysis patients. 6

11. Renal services already don t work at CCG level variations in access to travel, patient view, preparation for dialysis, dialysis access. There is a major risk of further fragmentation. Rural and Urban areas have different needs. 12. A CCGs priority will be their own dialysis population which could lead to facilities not taking into consideration the populations of neighbouring CCGs 13. There will be a high number of tenders for the service and within CCGs it is unlikely that there will be any experience of such tendering leading to an administration burden. 14. As CRGs are the primary source of clinical advice to NHS England why is it that the Dialysis CRG has not recommended that CCGs should be given Dialysis commissioning responsibility? 15. GPs are the first to admit that they know very little about renal medicine why are they being put in charge? 16. Will GPs IT systems be able to link in with renal units? 17. Do GPs have the manpower for this? MONITORING AND ACCOUNTABILTY 1. Who will have the expertise to commission in CCGs 2. How will the voice of patients be heard within 211 CCGs? 3. The ability to monitor quality and outcomes centrally must be retained 4. Who will be accountable for the service? 5. How will the service be monitored? 6. National oversight of renal services is important 7

BUDGET ISSUES 1. Will the budget be held at individual CCG level and how will significant variation between CCGs in the need for dialysis be accounted for BAME populations for example? 2. CCG Budgets have already been completed for 2015 OTHER ISSUES 1. There is a need to sort out Local Area Teams, Senates, and Strategic Clinical Networks before this can safely go ahead. 2. The Renal Association has said it does not support this change, although they would support a change to level 2. Under the current proposal they express serious concerns and highlight significant risk 3. The British Renal Society express significant concerns and say the proposal places patients at risk patients whose lives depend on dialysis. They speak of unintended consequences. They refer to a threefold variation in the prevalence of kidney failure between commissioning groups and that Black and Minority Ethnic groups could be compromised as a result. They ask to see the evidence for the suggested change. 4. The specialised Healthcare Alliance have tabled significant (non renal specific) concern about the whole process of declassifying specialised services to CCG s Now PLEASE complete the separate questionnaire and send it to Worksop nkf@kidney.org.uk - AS SOON AS YOU CAN, and no later than 15 th December. 8

PLEASE COMPLETE THIS QUESTIONNAIRE AND RETURN IT TO:- NKF, The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire, S81 8BW Or email to NKF@kidney.org.uk or fax to 01909 481723 Your Name. Are you a renal patient/carer/or someone else.. Do you belong to a Kidney Patient Association Which KPA do you belong to. Do you hold an officer position in that KPA.. Do you have an email address. Do you have a contact telephone number. Is the view shown below a personal view.. Are you representing the view of an organization If Yes name the organization Email contact address NKF is now campaigning to request a delay in the House of Commons making a decision on any changes to commissioning of dialysis services from April 2015, and to urge NHS England to have meaningful consultations with the NKF and others before making any changes in the future. Do you support this campaign?.. YES/NO Will you be prepared to write to your local MP about your concerns? YES/NO If YES, you may find the attached template letter helpful. If you wish you can use the following page to make any comment or suggestion to the NKF about this matter 9

Your Name.. Comment page to the NKF 10

Template letter to your MP Unless you are content with the changes being proposed for the Commissioning of Dialysis, the NKF asks that you approach your own MP(s)- (even if they represent constituencies outside England) either by letter or by visit to their surgery ( by appointment ), to request support. Below is a draft letter that could form the basis of your approach Dear.. Ministers are proposing to bring legislation before the house in February 2015 that will remove from Dialysis the status of being a specialized commissioned service. Instead Dialysis is to be commissioned at CCG level. This will directly affect around 20,000 Dialysis patients who depend on Dialysis for their lives. Patients and clinicians are worried by this proposal, it may well have unforeseen and dangerous consequences. No evidence has been provided for this change or reason why it is being done. No real consultation has taken place with renal stakeholders, other than a promise that the Department of Health will send a questionnaire to stakeholders over the Christmas period. Many doubt that this major change can happen in the short period up to April 2015 when this change is due to be implemented. Please vote this proposal down, or at least win a proper period of consultation, and delay in implementation. I will be pleased to discuss this further if that is your wish.. MANY THANKS FROM THE NKF FOR YOUR SUPPORT. 11