Services for Patients with End Stage Renal Failure at University Hospitals Coventry and Warwickshire NHS Trust

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1 West Midlands Renal etwork Services for Patients with End Stage Renal Failure at University Hospitals Coventry and Warwickshire HS Trust Quality Review Visit Report Visit date: 7 th October 2009 Report finalised December 2009

2 COTETS Contents... 2 Introduction... 3 Acknowledgements... 3 Renal Services at University Hospitals Coventry and Warwickshire HS Trust... 3 Review Visit Findings... 5 Appendix 1 Membership of Visiting Team... 8 Appendix 2 Compliance with Quality Requirements... 9 Final Report UHCW doc 2

3 ITRODUCTIO This report presents the findings of the peer review visit to services for patients with end stage renal failure at University Hospitals Coventry and Warwickshire HS Trust which took place on 7 th October The purpose of the visit was to review compliance with the West Midlands Renal etwork s Quality Requirements for the Care of Patients with End Stage Renal Failure, including Renal Transplantation (2008). The visit was organised on behalf of the West Midlands Renal etwork by the West Midlands Quality Review Service. This report describes one aspect of quality: the extent to which the service complies with national guidance on the organisation of services for patients with end stage renal failure. Other indicators for the quality of the service provided are available from the Renal Registry: ACKOWLEDGEMETS The West Midlands Renal etwork and West Midlands Quality Review Service would like to thank the staff and patients of University Hospitals Coventry and Warwickshire HS Trust for their hard work in preparing for the review and for their kindness and helpfulness during the course of the visit. Thanks are also due to the visiting team (Appendix 1) and their employing organisations for the time and expertise they contributed to this review. REAL SERVICES AT UIVERSIT HOSPITALS COVETR AD WARWICKSHIRE HS TRUST Service (as at October 2009) Patient umbers Haemodialysis - Main Unit Satellite Units: o Ash (Rugby) 48 o Lucy Deane (uneaton) 63 o Stratford Hospital 60 o Leamington 28 - Home 6 Total haemodialysis 346 Peritoneal dialysis 84 Transplant follow up (local care) 438 TOTAL 868 umber of transplants (previous 12 months) 58 Permanent dialysis access 77.5% umber of Stations Final Report UHCW doc 3

4 HAEMODIALSIS UIT University Hospitals Coventry and Warwickshire HS Trust s (UHCW) hospitals care for over 500,000 people from across Coventry, Warwickshire and beyond. There are currently 30 stations at UHCW; 12 stations at the Ash Dialysis Unit at Hospital of St. Cross, Rugby, 12 stations at the Lucy Deane Unit at George Eliot, uneaton, 12 stations at Stratford Hospital Dialysis Unit (which is a PFI unit, currently staffed by Fresenius Medical Health Care) and finally eight stations at the Leamington Unit at Leamington Rehabilitation Hospital. PERITOEAL DIALSIS There are currently 84 patients receiving different forms of peritoneal dialysis (PD). The nursing team also support any inpatients that have continuous ambulatory peritoneal dialysis (CAPD) treatments and are responsible for the day unit based on the renal ward. DIALSIS ACCESS lines are inserted under ultrasound guidance and tunnelled lines are inserted under screening facilities. Combined clinics are in place to assess patients for surgical access, fistulas and Peritoneal Dialysis catheters. Imaging of the arm veins is undertaken in all patients prior to fistula formation. There are three surgical access lists per week with anaesthetic cover for the creation of fistulas and surgical peritoneal dialysis insertion. RADIOLOG Fistulas identified as having problems are referred for imaging, either by Doppler scans through the clinical physics department or radiological through the vascular radiology department. Access is discussed at combined MDT meeting with Radiologists and Surgeons and angioplasty or corrective surgery is undertaken as appropriate. Acute renal biopsies are undertaken by the consultant interventional radiologists in the ultrasound department. I-PATIET FACILITIES Ward 50 provides inpatient facilities for renal patients. It is a 24 bed unit with 12 side rooms. The renal consultants operate a consultant of the week system with daily ward rounds with junior staff. Transplantation is undertaken on Ward 33a within a 12 bedded surgical unit. The transplant surgical team comprises five consultants and an Associate Specialist in Surgery. This ward is currently managed by the surgical division. Final Report UHCW doc 4

5 REVIEW VISIT FIDIGS ACHIEVEMETS This service is provided by an enthusiastic and committed team who work well together and have good links with the satellite units. The service has developed satellite units which are well spread across the population served and so provide good local access to haemodialysis. Infection rates have reduced significantly. The facilities and environment at UHCW are excellent, especially the isolation rooms, reception area and training room. An excellent transplant service is provided and there is an award-winning antibody incompatible transplantation service. One and five year transplant survival rates are very good. IMMEDIATE RISKS one. COCERS 1 Full dialysis (i.e. four hours three times a week) is not available for all who need it. The afternoon dialysis session is only three hours. Some patients are dialysed only twice a week. The number of patients on twice weekly dialysis was not clear. The service is an outlier on available historical national comparisons of urea reduction rate, with rates low compared to other services. (These comparisons are based on 18 month old data and there has been some subsequent improvement.) 2 Patients attending twilight shift dialysis and those at the Leamington satellite unit have no dietician support. 3 The transplant service is dependent on a small number of people and is therefore vulnerable to unexpected absences of key individuals. Antibody incompatible transplantation is supported mainly by one renal physician and the arrangements for cover for absences are not clear. Only one of the transplant coordinators does the transplant work-up. There are three transplant coordinators, which is below the recommended minimum 1:4 rota. Ward cover is very dependent on one staff grade. The Trust has plans to increase the number of live donors but this alone (i.e. without an increase in referrals of patients needing transplantation) will not lead to a sustainable population base for the transplant service (see also further consideration 1 in relation to activity levels of transplants surgeons). 4 Organisation of the transplant pathway is not robust. Processes for getting clinically appropriate patients onto the transplant list six months before the predicted start of dialysis, the system for annual review of patients on the transplant list and post-transplant follow up, are not formalised. 5 Several clinical guidelines and protocols are not in a format which complies with normal standards of document control, including ratification, author, date and review date, and it is not clear that they are easily available to all staff. This includes the protocol covering management of the transplant list (acceptance, work-up and review). Final Report UHCW doc 5

6 6 Data collection and audit of clinical issues covering the whole patient pathway is not undertaken on a routine basis. Several of the audits expected by the Quality Requirements have not therefore been undertaken. FURTHER COSIDERATIO 1 Further analysis is needed of the number of operations per surgeon and whether this meet the minimum number needed to maintain competence. Transplant surgeons are expected to undertake at least 15 renal transplants per year. A total of 58 transplants were carried out in 2008/09. Of these, 38 were live donor transplants involving up to four surgeons; nineteen were cadaveric transplants involving one or two surgeons. Data on the number of transplants per surgeon were not available. There is careful screening of both donors and recipients and shared surgical and renal physician management of transplant in-patients. The surgical rota included two vascular surgeons who have been trained to undertake transplantation and the trust has found that this improves the management of vascular anastomoses. 2 Patient information and patient education sessions are not yet formalised. It may be helpful to review the way in which these are organised to ensure that information and education sessions are available to all patients. 3 ied health professional staffing levels are below the recommended levels for dietitians, pharmacist and social worker. 4 Patient transport arrangements have been recently reviewed and revised arrangements introduced, further work should be undertaken to ensure compliance with the new contract. The visiting team suggests that the service is audited, and feedback from patients obtained, to ensure that the new arrangements are meeting patients needs. 5 The number of elective vascular access theatre sessions are below the recommended level for the number of patients but this is not currently leading to any delays. The visiting team suggests that this is kept under review to ensure that delays do not arise and that there is appropriate access for unplanned patients. 6 The community team is covering a wide range of responsibilities, including clinics, pre-dialysis care, anaemia management, home visits for patients on peritoneal dialysis and home haemodialysis, and end of life care. The visiting team suggests that the workload is kept under review as it appears very high for the size of the team. There are 4.4 wte nurses for 659 patients. 7 Ward nursing staff are providing advice and support to peritoneal dialysis patients outside of normal working hours. The visiting team suggests that the guidelines covering advice given and competences of ward nursing staff for this work are reviewed. Final Report UHCW doc 6

7 GOOD PRACTICE 1 There is a very good technical database which is well maintained and ensures that all technical aspects of the quality reviews were traceable from the unique identity. Examples include information about breakdowns, calibration and certificates. Water testing is undertaken to very high standards. 2 The assessment of nursing competences is very well organised. There is a clear competence framework and nurses are assessed against this on a regular basis. COMPLIACE WITH QUALIT REQUIREMETS Compliance with individual quality requirements is shown in Appendix 2. Overall, the Trust met 53% of the quality requirements for services for patient with end stage renal failure. Final Report UHCW doc 7

8 APPEDIX 1 MEMBERSHIP OF VISITIG TEAM Dr Dominic de Takats Consultant ephrologist University Hospital of orth Staffordshire HS Trust Mr Bimbi Fernando Transplant Surgeon Royal Free Hampstead HS Trust Dr Richard Smith Transplant ephrologist orth Bristol HS Trust Amanda Small Acting Team Leader South Central Donor Coordinator Team Oxford Radcliffe Hospitals HS Trust Liz Cropper urse Consultant CKD University Hospital of orth Staffordshire HS Trust Jane Parker Lead urse CAPD Dudley Group of Hospitals HS Trust Jean Shears Senior Sister Royal Wolverhampton Hospitals HS Trust Rob Millard Renal Technical Services Manager Heart of England HS Foundation Trust Heather Woodward Directorate Manager Royal Wolverhampton Hospitals HS Trust Katy Burrage Dietitian Royal Wolverhampton Hospitals HS Trust Clement Maynard Dawn Roach User Reviewer User Reviewer Dr Jonathan Howell Specialist Commissioner Specialised Commissioning (West Midlands) Sarah Broomhead Quality Manager West Midlands Quality Review Service Jane Eminson Acting Director West Midlands Quality Review Service OBSERVERS Jacqui Padmore Renal Social Worker Heart of England HS Foundation Trust anette Grant Renal etwork Manager Specialised Commissioning (West Midlands) Final Report UHCW doc 8

9 APPEDIX 2 COMPLIACE WITH QUALIT REQUIREMETS Ref. IFORMATIO AD SUPPORT FOR PATIETS AD THEIR CARERS Information should be offered to all patients covering at least: Renal disease, including its causation, physical, psychological, social and financial impact Treatment options available Pharmaceutical treatments and their side effects Promoting good health, including diet, fluid intake, exercise, smoking cessation and avoiding infections Access to benefits advice Symptoms and action to take if become unwell Support groups available Expert Patients Programme (if available) Renal unit staff and facilities available, including facilities for relatives Who to contact with queries or for advice How to influence local services (QR 87) Where to go for further information, including useful websites Information should be offered to all patients receiving pre-dialysis care covering at least: What the reasons are for starting dialysis Conservative management Types of dialysis available and locations of these services Self-care options Potential complications of each type of dialysis Access types and access surgery Transport options and eligibility for free transport Availability of, and eligibility for, temporary dialysis away from home Arrangements for six monthly holistic review with named nurse Who to contact with queries or for advice Where to go for further information, including useful websites. Information should be offered to all patients with dialysis access covering at least: Care of their dialysis access Management of pain and complications What to do if problems occur The team relies on booklets from Baxter Healthcare and the ational Kidney Federation which meet most of the QRs, although some aspects would benefit from greater detail and the inclusion of local information. The information does not cover how to influence local services. In practice, staff ensure that verbal information is given and patients have further information as required. early all aspects of the QR were met. The information does not yet include information about arrangements for six monthly holistic review with the patient s named nurse. Information about conservative management is covered in the KF booklet, which also covers the whole pathway for patients with end stage renal failure. It may be worth considering reviewing the way this information is used and expanding the section on conservative management. There was some information about needle related pain but no information on management of pain in general. Information on care of dialysis access was good. Final Report UHCW doc 9

10 Information should be offered to all patients being considered for transplantation covering at least: Different types of transplantation available and locations of these services. Potential complications of each type of transplantation, including the risks of infection and malignant disease. Likely outcomes of each type of transplantation Tests and investigations that will be carried out. What will happen if they are accepted for inclusion on the transplant list Annual review while on the transplant list. What will happen if they are not accepted onto the transplant list. Who to contact with queries or for advice. Where to go for further information, including useful websites. Information on kidney donation should be offered to all patients considering live donation and to all potential live donors covering at least: What is live donation Antibody incompatible transplantation Potential complications for the donor Payment of expenses, including the time within which payment should be received and a contact point for queries over payments. In addition to the information in QR 4, information should be offered to all patients following transplantation covering at least: Anti-rejection medication Symptoms and action to take if these occur, including what to do in an emergency Pregnancy and contraception An education and awareness programme should be offered to all patients with ESRF. In addition to a general programme appropriate to all patients and covering all points in QR 1, specific programmes for particular groups of patients should cover all points in the relevant QR as follows: Patients being considered for dialysis (QR 2) Patients with dialysis access (QR 3) Patients on the transplant list (QR 4) Education and training in the competences needed for self-care (for patients opting for self-care). patients should be offered: A written individual care plan A permanent record of consultations at which changes to their care plan are discussed A key worker/named contact. There was some good information on complications, but not evidence of written information covering all the requirements of the QR. Patients do attend discussion sessions but it is not clear how the service ensures that all patients have the information they need. The QR was nearly met. The information covering payment of expenses, including the time within which payment should be received and a contact point for queries over payments, was not adequately covered. The information is very good and patients felt it was very relevant and useful. An education and awareness programme is held twice a month. It may be worth reviewing how patients access this training as none of the patients who met the visiting team had attended. Patients are not yet offered a permanent record of consultations at which changes to their care plan are discussed. The arrangements for allocation of a key worker/named contact are being developed. Individual care plans are being developed but are not yet in place. Final Report UHCW doc 10

11 10 Food should be offered to all patients who are away from home for more than 6 hours to attend clinic or receive dialysis. 11 Free car parking should be available close to the dialysis unit for haemodialysis patients attending for dialysis. STAFFIG and SUPPORT SERVICES The service should have a nominated lead consultant nephrologist and nominated lead nurse with responsibility for ensuring implementation of the Standards for the Care of Patients with End Stage Renal Failure. The service should have a nominated lead and lead nurse/co-ordinator for: Pre-dialysis care Dialysis care Transplant-related issues, including live kidney donation and Renal Unit/Transplant Centre liaison. A consultant nephrologist should be available at all times. A consultant transplant surgeon should be available at all times for the care of patients in the Transplant Centre and for advice to Renal Units. Transplant Centres with lead responsibility for the care of young people aged up to 25 years (QR 110) should have a nominated lead nephrologist with responsibility for liaison with the network s Renal Services for Children (s) in relation to transfer to adult care. The in-patient ward renal nurse and HCA staffing establishment and on duty staffing levels should meet the recommendations of the ational Renal Workforce Planning Group, taking account of patient dependency, at all times. (These recommendations are summarised in Appendix 3). nurses and HCAs should be assessed as competent in the care of patients with renal disease, procedures they are expected to undertake and equipment they are expected to use. /A There are arrangements for food to be given for patients attending dialysis for more than 6 hours, but this arrangement is not routinely offered. There is a good, in-depth competence framework which nursing staff have completed. Final Report UHCW doc 11

12 Dialysis service renal nurse and HCA staffing establishment and on duty staffing levels should meet the recommendations of the ational Renal Workforce Planning Group, taking account of patient dependency, at all times. (These recommendations are summarised in Appendix 3). nurses and HCAs should be assessed as competent in the care of patients with renal disease, procedures they are expected to undertake and equipment they are expected to use. The service should have an identified lead nurse with specialist expertise in each of the following areas: Vascular access Anaemia management Conservative management Clinical technologist staff should be available to maintain all equipment, including water treatment equipment. Clinical technologist staffing for haemodialysis services should meet the recommended level of 1 wte per 50 haemodialysis patients. clinical technologists should have regular assessment of competence in the maintenance of equipment appropriate to their role. A 24 hour clinical technologist on call service should be available. The service should have: A nominated co-ordinator for holiday haemodialysis Sufficient staff to ensure data collection as required for QR 97 to 102. As QR18. Clinical technologist staffing is 1:57 patients and so is below the recommended staffing level. The visiting team was not concerned about this because the technical data base is very good and is used extremely well (see good practice section in main report). There are five technicians covering the main unit and all satellite units except Stratford. Technicians have attended courses but there have been no regular assessments of competence. Final Report UHCW doc 12

13 The following services should be available to provide support to patients with renal diseases: Dietetics Pharmacy Psychological support Social worker Staff providing these services should have specific time allocated to their work on the Renal Unit and specific training or experience in caring for people with renal diseases. Staffing should meet the recommended levels: One wte dietitian for each: o 135haemodialysis patients plus additional support for in-patient care, o 270 peritoneal dialysis patients, o 180 low clearance patients and o 540 transplant patients One wte pharmacist per 250 RRT patients plus one wte per 60 transplants per annum One wte psychological support per 1000 RRT patients One wte social worker per 140 RRT patients The following support services should be available: Interpreters Occupational therapy Benefits advice Smoking cessation Contraception and sexual health Emergency and elective surgical services should be available to provide: Elective access surgery Emergency surgery for failed vascular access and removal of infected peritoneal dialysis catheters Access to dermatology services with expertise in the management of patients on long-term immuno-suppressive therapy should be available. There should be a nominated transplant coordinator with lead responsibility for live kidney donors. A renal recipient transplant co-ordinator should be available at all times. The Transplant Centre should have arrangements for access to expert advice on antibody incompatible transplantation. Staffing levels for Dietitians, Pharmacist and Social Worker are below the recommended levels. There are three elective vascular access sessions. Although this is below the recommended number (4 sessions for the number of patients) there are not problems in elective dialysis access. Emergencies are dealt with through the on-call rota of transplant surgeons. There is a 1:3 rota of transplant co-ordinators but this is below the minimum 1:4 rota recommended. It is not clear what happens when the consultant with a particular interest in antibody incompatible transplantation is away. 31 The Transplant Centre should have access within a two hour travel time to a consultant led, accredited histocompatibility service. This service is provided from Birmingham. Final Report UHCW doc 13

14 The Transplant Centre should have access to a histopathology service with expertise in the interpretation of renal transplant biopsies. The Transplant Centre should have 24 hour a day, 7 days a week access to operating theatres for renal transplantation. The Transplant Centre should have 7 days a week access to plasmapheresis. Transplant Centres with lead responsibility for the care of young people aged up to 25 years (QR 110) should have the following services available: outh worker service Psychological support service with expertise in the care of young people with renal disease. FACILITIES AD EQUIPMET 37 Appropriate facilities for the provision of haemodialysis should be available. new facilities should meet the requirements of HB 53 (Volumes 1 or 2 as applicable) and other services should be working towards these standards. In-patient services should ensure reasonable separation of patients receiving in-patient and out-patient care equipment used in the delivery and monitoring of therapy should comply with the relevant standards for medical electrical equipment. Each unit should have a programme of equipment replacement. A protocol on concentrates should be in use which ensures that all concentrates used meet the requirements of BS E 13867: A routine testing procedure for product and feed water should be in use which ensures water used in preparation of dialysis fluid meets the requirements of Renal Association Guidelines for Haemodialysis (4 th Edition, 2006 A protocol on haemodialysis membranes should be in use covering: Use of low flux synthetic and modified cellulose membranes Membranes for patients at risk of developing symptoms of dialysis-related amyloidosis Membranes for patients with increased bleeding risk Membranes in patients on ACE inhibitor drugs equipment used in the delivery and monitoring of therapy should comply with the relevant standards for medical electrical equipment. fluids used for peritoneal dialysis should comply with European quality standards. /A Access to an emergency theatre is negotiated. Cold ischaemia times are better than the national average. Facilities are excellent. There are very good processes and schedules and all testing is traceable through the database. The service has a water analyst with responsibility for taking and testing samples. A protocol is in use. Final Report UHCW doc 14

15 45 46 Appropriate facilities for isolation of patients should be available. weighing scales should comply with on- Automatic Weighing Instrument (AWI) Regulations 2000, part III, section 38. GUIDELIES AD PROTOCOLS: patients 47 The unit s operational protocols should include: ocation of a key worker/named contact at each stage of the patient s care Arrangements for handover of key worker/named contact between stages of the patient s care Ensuring all patients are offered information (QR 1) and education programmes (QR 8) Ensuring all patients have a written care plan that is discussed with the patient: o following significant changes in circumstances o at least once a year (see QR 47and 60) Offering patients a copy of their care plan Offering patients a permanent record of consultations at which changes to their care plan are discussed. Communicating changes to the care plan to the patient s GP, including information about changes in drug treatments and what to do in emergencies. Arrangements for ensuring patients have up to date information on their blood results A protocol covering responsibilities, advice to be given and actions to be taken, including referral to other services, should be in use for: Lifestyle advice and information, including: o Support for smoking cessation o Dietary advice, including salt reduction and alcohol o Programmes of physical activity and weight management o Sexual health, contraception and pregnancy o Travel and holidays Monitoring of growth and development (children and young people only) Clinical guidelines should be in use covering: Monitoring and management of CHD risk factors, including: o Anti-platelet therapy o Lipid reduction therapy o Control of hypertension o Calcium and phosphate control Management of diabetes mellitus Management of anaemia There are four isolation rooms in the main unit with a total of 11 across all the units. scales on the unit and those for home dialysis comply with the regulations. Patients on haemodialysis have a care plan although patients who met the visiting team were not aware of this. Peritoneal dialysis patients do not have a care plan. There was no evidence that patients are offered a permanent record of the consultations at which changes to their care plan are discussed. There is no written protocol. There are guidelines for calcium and phosphate control and for the management of anaemia but not for other aspects of this QR. Final Report UHCW doc 15

16 50 51 Clinical guidelines should be in use covering indications and arrangements for referral for psychological support. Guidelines, agreed with the specialist palliative care services serving the local population, should be in use covering, at least: Arrangements for accessing advice and support from the specialist palliative care team. Arrangements for shared care between the renal service and palliative care services. Indications for referral of patients to the specialist palliative care team for advice. There is easy access to psychological support services. The draft guidelines outlining the indications for referral are yet to be agreed. 52 The renal service should be aware of local guidelines for the end of life care of patients. GUIDELIES AD PROTOCOLS: Pre-dialysis care 53 A protocol should be in use to cover pre-dialysis care. This protocol should ensure: Patients are offered information (QR 2), education programmes (QR 8) and psychological support to enable them to make an informed choice of dialysis modality Assessment of suitability for dialysis Assessment of home environment for those patients considering home dialysis (HD & CAPD) Assessment of the economic impact of dialysis and possible sources of financial support Discussion of transport arrangements with each patient Recording of the agreed transport arrangements in the patient s care plan The patient s preferred choice of dialysis modality is recorded in the patient s notes/electronic patient record and care plan. The protocol should cover arrangements for patients: With 12 months or more preparation Presenting less than 12 months before starting treatment eeding immediate dialysis at presentation With failing transplants. There is not a written protocol(s) covering all aspects of this QR. In particular, there is nothing specific about the arrangements for patients presenting less than 12 months before starting treatment and those with failing transplants. Final Report UHCW doc 16

17 54 A protocol should be in use covering: Screening for blood borne viruses Hepatitis vaccination if required Monitoring of hepatitis B and C antibodies Screening for staphylococcus aureus and MRSA carriage and treatment of carriers. Information about local policies was available covering most aspects of this QR. This was not in a format which could be easily accessed and used. 55 The protocol should cover arrangements for patients presenting less than 12 months before starting treatment and those needing immediate dialysis at presentation as well as arrangements for patients with 12 months or more preparation. A protocol should be in use covering: Referral for assessment and investigation of suitability for access surgery Referral for surgery Indications for antibiotic prophylaxis Ensuring patients are given information about their dialysis access (QR 3). This seems to happen in practice but there is no written protocol/s covering all aspects of this QR. 56 This protocol should ensure that, whenever possible, access is established and functioning 6 months before haemodialysis and four weeks before peritoneal dialysis. A protocol should be in use covering referral to the Transplant Centre for consideration of suitability for transplantation. This protocol should ensure that: A discussion with the patient and nephrologist takes place about their interest in and fitness for transplantation. The patient is considered against the network criteria for each type of transplantation (QR 119). The resulting decision is recorded in the patient s notes/ electronic patient record and care plan. Clinically appropriate patients are normally placed on the transplant list six months prior to the predicted start of dialysis. As QR 55. Final Report UHCW doc 17

18 57 A protocol should be in use covering acceptance onto the transplant list. This protocol should ensure that: As QR A discussion with the patient and a transplant nephrologist and / or transplant surgeon takes place about their fitness for transplantation. The patient is considered against the network criteria for each type of transplantation (QR 119). A discussion takes place about the patient s suitability for and interest in: o Antibody incompatible transplantation o Combined kidney/pancreas o transplantation on-heart beating donor transplantation. The patient s willingness to receive a kidney from a marginal donor is recorded in their care plan (adults only). The availability of potential living related donors is discussed. Clinically appropriate patients are normally placed on the transplant list six months prior to the predicted start of dialysis. The resulting decision is recorded in the patient s notes / electronic patient record and care plan, and communicated in writing to the patient and the referring Renal Unit (if applicable) within 10 working days. A protocol should be in use covering referral of patients with diabetes for combined kidney and pancreas transplantation. A protocol should be in use covering suspension and reinstatement of patients on the transplant list. This protocol should cover at least: Regular review of patients suspended from the list Informing the Transplant Centre that a patient has been suspended. Reinstatement of patients onto the list as soon as clinically appropriate. Informing the Transplant Centre when a patient is to be reinstated onto the list. A protocol was available covering care of patients following referral to Oxford. A local protocol including indications for referral was not available. MDT meetings are held at which patients on the transplant list are assessed. Some patients had been suspended from the list for a long time and there was no evidence of regular review of their care. The protocol does not specify the frequency with which the details of suspended patients should be reviewed. Final Report UHCW doc 18

19 A protocol should be in use covering annual review of patients on the transplant list. The annual review should cover at least: Current fitness for transplantation Risk factors for coronary heart disease Anaesthetic risk Co-morbidity Availability of potential living related donors Consent for virology and storage for tissue typing Suitability for combined kidney and pancreas transplantation Suitability for antibody incompatible transplantation Interest in non-heart beating donor transplantation A protocol should be in use covering removal from the transplant list. This protocol should ensure that: A discussion takes place with the patient about the reason for removal. A decision to remove the patient from the transplant list temporarily or permanently is recorded in the patient s notes/electronic patient record. The Transplant Centre is informed of the decision to remove the patient from the transplant list temporarily or permanently. A protocol should be in use covering cardiovascular work-up prior to transplantation. This protocol should ensure that cardiac investigations are normally completed within six weeks of referral. GUIDELIES AD PROTOCOLS: dialysis 63 A protocol should be in use covering: Self-care options offered by the service Arrangements for assessing and monitoring competence of patients opting for self-care 64 A protocol should be in use which ensures: Arrangements for multi-disciplinary review of blood results Monitoring of hepatitis B and C antibodies Frequency of out-patient review Arrangements for six monthly holistic review with named nurse Indications for change of dialysis modality Arrangements for changing dialysis modality There are forms for reviewing patients on the transplant list but these cover only current fitness for transplantation, CHD risk factors, anaesthetic risk and co-morbidity. Other aspects of the QR are not covered. There is a 'traffic light' system for reviewing patients but the basis for allocation of the 'traffic light' is not clear. Approximately 10% patients on the transplant list had never been reviewed and the frequency of review varied from 10 months to three years. The protocol does not make clear whether the patient is spoken to before they receive written confirmation of their removal from the transplant list. The visiting team assumed that this happens in practice but it may be helpful to specify it in the protocol. There is a written protocol but no audit of timeliness of completed investigations. The notes seen by the visiting team did not conform to the written protocol. There is a very good protocol covering home haemodialysis. Most aspects of the QR are covered in practice through the Quality Assurance review protocols and transfer records. These do not include the arrangements for six monthly holistic review with the named nurse. Final Report UHCW doc 19

20 65 A protocol should be in use which ensures a six monthly holistic review with the patient s named nurse covering at least: Review of biochemistry and referral to members of the multi-professional team if required Current medication, compliance and referral to the renal pharmacist if required Consideration of nutritional status and indications for referral to the dietitian for assessment (QR 66/67) Psychological well-being and indications for referral for psychological support (QR 50) Lifestyle advice (QR 48) Transport arrangements eed for temporary dialysis away from home Review of biochemistry is covered by formal arrangements and there are indications for referral to the dietitian for assessment. There is not a formalised system for other aspects of the QR and arrangements differ between the different satellite units. The outcome of the holistic review should be documented in the patient s care plan. 66 A protocol should be in use which ensures that: An interview with the dietitian takes place within one month of starting dialysis An annual nutritional assessment is undertaken Indications for referral to the dietitian at other times An interview with the dietitian takes place within three weeks of the patient starting dialysis. Annual nutritional assessments are not undertaken and there are no formalised indications for referral. Twilight session patients have no dietician support and there is no dietitian at the Whitnash satellite unit. 68 A protocol should be in use covering withdrawal of dialysis. This protocol should ensure that: A discussion takes place with the patient and their family/carers about the reason for withdrawal. A decision to withdraw dialysis is recorded in the patient s notes/electronic patient record/care plan. Referral to palliative care services is made if appropriate (QR 51 and 52). There is no protocol covering this QR. GUIDELIES AD PROTOCOLS: Haemodialysis 69 A protocol should be in use covering: Frequency of haemodialysis Duration of haemodialysis Measurement of adequacy of haemodialysis Pre- and post-dialysis blood sampling There is no written protocol covering the frequency and duration of dialysis. Some patients are dialysed only twice a week. The unit runs a 4hr./3hr./4hr. dialysis pattern and so some patients are not getting the full four hour dialysis session. Final Report UHCW doc 20

21 70 71 A protocol should be in use covering: Care of temporary and cuffed dialysis lines and arterio-venous fistulae, including locking solutions and dressings Preparing vascular access for haemodialysis Decontamination of equipment after each treatment session Decontamination of equipment after use by patients with blood borne viruses. A protocol should be in use covering access care and performance. This should cover at least: Arrangements for monitoring access performance Management of access infections Investigation of AV fistulae or grafts for evidence of stenosis Indications for secondary AV access after each episode of access failure Management of anxiety and pain GUIDELIES AD PROTOCOLS: Peritoneal Dialysis 72 Clinical guidelines should be in use covering: Modality of dialysis used (CAPD, APD) Disconnect systems Type of fluid used including: o Solutions for patients experiencing infusion pain o Solutions for patients likely to remain on peritoneal dialysis for more than four years. o Indications for use of specialist fluids Dialysis dose There is a flow chart for emergency management of failed vascular access. Protocols covering other aspects of this QR are being developed. The available guidelines are not specific about the management of solutions for patients likely to remain on Peritoneal Dialysis for more than 4 years. 73 Clinical guidelines should be in use covering access care and performance. This should cover at least: Peri-operative catheter care Care of peritoneal dialysis catheters Management of exit site and tunnel infections Management of catheter complications (leaks, obstruction) Management of anxiety and pain The guidelines cover all aspects of the QR except for the management of anxiety and pain. 74 Clinical guidelines should be in use covering management of: peritonitis hernias GUIDELIES AD PROTOCOLS: Transplantation and Post-transplant Care 75 Clinical guidelines should be in use for patients who have had renal transplantation covering: Treatment of acute rejection episodes Management of chronic allograft damage, including chronic rejection. A 'Quick Guide' is available which covers all aspects of the QR except management of chronic allograft damage immunosupression guidelines were available but were not on the intranet and it was not clear that these are used in practice. Final Report UHCW doc 21

22 A protocol should be in use covering follow up of patients following transplantation. This protocol should include: Monitoring transplant function using egfr Monitoring blood pressure Monitoring other CHD risk factors Skin surveillance Consideration of need for referral to pre-dialysis / pre-esrf programmes Contraception and sexual health Care of mother and baby during pregnancy Monitoring of growth (children and young people only) A protocol should be in use covering live donor work-up and arrangements for organising the transplant. This protocol should ensure that transplantation takes place within three months of completion of the work-up. A protocol should be in use covering pre-operative care of patients undergoing transplantation covering at least: Psychological preparation Blood and tissue matching Antibody screening Pre-transplant vaccination (children only) Management of patients with blood born viruses. Use of immunosuppressive therapy Counselling and advice for patients called for transplantation but where the operation does not take place (for whatever reason). Clinical guidelines should be in use covering preand peri- operative care of patients undergoing antibody incompatible transplantation. There was no written protocol covering the requirements of the QR. There was a written protocol covering the 'work-up' pathway. Time from completion of work-up to transplantation has not been monitored and it is not clear whether transplantation is taking place within three months of completion of work-up. There is no protocol/s covering all the requirements of the QR, including management of patients with blood born viruses. etwork guidelines on immunosuppressive therapy are available but it is not clear that these are used in practice. The protocol relates to a 2002 research study. It is not clear that this has now been translated into routine clinical practice Clinical guidelines should be in use covering postoperative care of patients covering at least: Pain control Prevention of post-transplant CMV infection Use of immunosuppressive therapy Post-transplant vaccination (children only) Treatment of acute rejection episodes Antibody screening A protocol should be in use covering discharge of patients following transplantation. This protocol should ensure that, immediately following discharge, the patient s GP has information on: The type of transplantation undertaken The patient s medication and likely side effects Action to take should problems occur. There is no protocol(s) covering the requirements of the QR. There is no protocol(s) covering the requirements of the QR. Final Report UHCW doc 22

23 82 A protocol should be in use for referral of patients back to Renal Units. This protocol should ensure that before the transfer of care takes place: patients have been offered a copy of their care plan patients have a named contact for advice and support The Renal Unit and the patient s GP have received a copy of the patient s care plan. There is no protocol(s) covering the requirements of the QR A protocol should be in use covering follow up of live donors. This protocol should ensure that donors are followed up at least annually, including checks of blood pressure, urinalysis and renal function. The network-agreed protocol (QR 126) for payment of expenses to living donors should be easily available within the Transplant Centre. There is no protocol(s) covering the requirements of the QR. The network protocol is followed. The patients who met the visiting team had not received information on this. 85 Transplant Centres with lead responsibility for the care of young people aged up to 25 years (QR 110) should have agreed the protocol for transfer to adult care (QR 86). /A SERVICE ORGAISATIO and LIAISO WITH OTHER SERVICES 87 The unit should have in place: Mechanisms for receiving feedback from patients and carers about the treatment and care they receive. Mechanisms for involving patients and carers in decisions about the organisation of the services. 88 Arrangements should be in place to ensure effective communication and regular multidisciplinary discussion to review the care of predialysis patients. These arrangements should cover the involvement of, at least, consultant nephrologists, lead nurse for pre-dialysis care, dietitian, renal pharmacist, clinical technologist, renal social worker and vascular access surgeon Guidelines should be in use covering: Eligibility for free transport Eligibility for temporary dialysis away from home Guidelines should be in use covering arrangements for liaison with consultant diabetologists and consultants in rehabilitation medicine. The unit should have arrangements for taking advantage of local opportunities for publicising transplant successes. There were no written guidelines. Final Report UHCW doc 23

24 The unit should have compared the staffing levels expected in QRs 12 to 36 and produced a workforce development plan for addressing significant staffing shortfalls. Staff from the unit should meet with a representative of the team at the main Transplant Centre(s) to which patients are referred at least three times a year in order to review transplantrelated patients and issues. A representative of the Transplant Centre team should meet with the renal team from each of its main referring units at least three times a year in order to review transplant-related patients and issues. Representatives of the Transplant Centre should attend the twice yearly network antibody incompatible transplantation meeting (QR 129) and contribute details of patients for discussion. Transplant Centres with lead responsibility for the care of young people aged up to 25 years should have arrangements for a regular joint clinic with a paediatric nephrologist from each Renal Service for Children within the network. DATA COLLECTIO AD AUDIT 97 The unit should be submitting data to the Renal Registry, regional data set and UK Transplant. 98 The unit should participate in agreed network-wide audits. /A /A This comparison had not yet been undertaken. There are regular meetings with staff from Heart of England HS Foundation Trust. These meetings cover antibody incompatible transplantation only. It may also be helpful to discuss issues relating to general transplantation. urses are actively participating in networkwide audits The unit should have undertaken an annual audit of: Travel times for dialysis patients, including waiting times for return journeys Relationship between timing of access surgery and start of dialysis The unit should have undertaken an annual audit of compliance with its protocols for acceptance, suspension, annual review and removal of patients on the transplant list. This audit should include at least: Relationship between timing of dialysis and listing for transplantation Proportion of patients who have had an annual review Time from work-up to transplantation for living related donors. Transplant Centres should have undertaken an audit of the timeliness of communication of decisions about acceptance onto the transplant list to the patient and the referring Renal Unit. The unit has participated in the national audit of travel times for dialysis patients. The relationship between timing of access surgery and start of dialysis has not been audited. These audits have not yet been undertaken. These audits have not yet been undertaken. Final Report UHCW doc 24

25 Transplant Centres providing an antibody incompatible transplantation service should participate in the national AiT Registry Audit (when established). Transplant surgeons should normally undertake a minimum of 15 renal transplants each year. Data on number of operations per surgeon were not available. A total of 58 transplants were carried out in 2008/09. Of these 38 were live donor transplants involving up to four surgeons. ineteen were cadaveric transplants involving one or two surgeons. 104 Transplant Centres providing an antibody incompatible transplantation service should normally treat at least five patients per year. Final Report UHCW doc 25