Services for Patients with End Stage Renal Failure at Heart of England NHS Foundation Trust

Transcription

1 West Midlands Renal etwork Services for Patients with End Stage Renal Failure at Heart of England HS Foundation Trust Quality Review Visit Report Visit date: 21 st October 2009 Report finalised December 2009

2 COTETS Contents... 2 Introduction... 3 Acknowledgments... 3 Renal Services at Heart of England HS Foundation Trust... 3 Review Visit Findings... 6 Appendix 1 Membership of Visiting Team... 9 Appendix 2 Compliance with Quality Requirements Appendix 3 Trust Immediate Risk Action Plan HEFT Final Renal Visit Report doc 2

3 ITRODUCTIO This report presents the findings of the peer review visit to services for patients with end stage renal failure (ESRF) at Heart of England HS Foundation Trust which took place on 21 st 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 ESRF. Other indicators for the quality of the service provided are available from the Renal Registry: ACKOWLEDGMETS The West Midlands Renal etwork and West Midlands Quality Review Service would like to thank the staff and patients of Heart of England HS Foundation 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 HEART OF EGLAD HS FOUDATIO TRUST Service (as at October 2009) Patient umbers Haemodialysis - Main Unit Satellite Units: o Solihull 81 o Castle Vale 89 o Ashfurlong 23 o Runcorn Road 78 - Home 15 Total haemodialysis 414 Peritoneal dialysis 30 Transplant follow up 163 TOTAL 607 Permanent dialysis access 88% umber of Stations Heart of England HS Foundation Trust (HEFT) includes Birmingham Heartlands, Solihull, Good Hope Hospitals and Birmingham Chest Clinic. Regional and sub-regional specialties include nephrology, cardiology, thoracic surgery, clinical haematology, and infectious diseases. The regional virology and immunology departments are on the Birmingham Heartlands Hospital site together with the Birmingham Public Health Laboratory. HEFT Final Renal Visit Report doc 3

4 Heart of England HS Foundation Trust provides nephrology and dialysis services for the east of Birmingham, Solihull, south east Staffordshire and parts of Warwickshire. The catchment population for renal services is approximately 1.5 million. HAEMODIALSIS The haemodialysis unit at Heartlands provides 31 hospital-based haemodialysis stations, including facilities for isolation and five stations designated for patients with acute failure. The renal directorate manages 4 satellite haemodialysis units within the Trust as follows: Solihull Hospital A 16 station satellite unit situated on the Solihull Hospital site. Castle Vale A 16 station satellite dialysis unit on the Maybrook Business Park in the Castle Vale area, north east of the city. Ashfurlong When opened in 2005 this five station unit in Sutton Coldfield, north Birmingham, was the first dialysis satellite unit in the UK situated in a primary care practice. Day to day medical cover is provided by two specially trained GPs. Its nursing management operates as a subunit of the Castle Vale satellite facility. Runcorn Road In August 2007 the Runcorn Road renal unit opened with 24 haemodialysis stations. This unit in Balsall Heath, south west Birmingham, has dedicated facilities to enable patients with blood borne viruses to be dialysed as a cohort. The unit has recently opened a selfcare room to support the haemodialysis self-care programme. There is space to support future expansion of haemodialysis capacity by 15 to 16 stations. In addition, renal services at Heart of England HS Foundation Trust also provide technical and medical support to the GP run haemodialysis service located at Lichfield Victoria Hospital. HOME HAEMODIALSIS, SELF-CARE HAEMODIALSIS AD COTIUOUS AMBULATOR PERITOEAL DIALSIS (CAPD) Currently there are 15 home haemodialysis patients. A self-care haemodialysis competency programme was introduced in 2008, supervised by a self-care sister. Fourteen patients have completed the programme, of which five now dialyse at home. 16 patients are currently enrolled. The programme has provided an ideal stepping stone for patients considering haemodialysis at home. As a result of this programme the aim is to have 25 patients maintained on home haemodialysis by March HEFT Final Renal Visit Report doc 4

5 The CAPD department is located adjacent to the renal ward (ward 3) at Birmingham Heartlands hospital and has outpatient training facilities. REAL I-PATIET AD O-CALL SERVICES. Renal in-patients are located on Ward 3, Heartlands Hospital, a 34 bedded ward with four single side rooms. Isolation facilities are available on-site on Ward 27 (C. Difficile Cohort Ward) and Ward 28 (Regional Infectious Diseases Ward). Renal unit staff contribute to multi-professional working on ward rounds and multi-disciplinary meetings including smart start a recently introduced meeting of therapists, nurses and doctors each weekday 8.30 a.m a.m. Consultant ephrologists provide a 24 hour, seven days a week, Renal Consultant on-call rota for the Trust in addition to their Consultant Physician on call duties. Renal unit nursing staff provide a comprehensive on-call service out of hours including, when required, the provision of haemodiafiltration on the Heartlands ITU as well as acute haemodialysis. A dedicated team of renal unit technicians operate an emergency on-call service (24/7) supporting renal replacement therapy and the operation of medical and associated equipment across the West Midlands. This team also has separate service level agreements to support Birmingham Children s Hospital HS Foundation Trust, the Lichfield satellite renal unit and the endoscopy department at Birmingham Heartlands hospital. REAL TRASPLATATIO PROVISIO Renal transplantation is not performed within the Heart of England HS Foundation Trust (HEFT). Renal unit patients have the choice of receiving their transplants at either the Queen Elizabeth Hospital HS Foundation Trust, Birmingham or University Hospitals Coventry and Warwickshire, Coventry. Transplanted patients return to the Trust for follow up care three to six months post-transplant. Currently 163 patients with functioning renal transplants are managed in the Trust (Appendix 1). In addition, a Kidney/Pancreas transplant service is provided to renal patients by the Oxford Transplant Centre. The renal directorate now has a dedicated transplantation nurse to promote the living donor programme. REAL ACCESS SERVICE The access service is led by two clinical nurse specialists working closely with three lead vascular surgeons and two lead interventional radiologists. The latter have a special interest in the investigation and provision of haemodialysis access. The access nurses are trained in the use of sono-site (Doppler) scanner and have sole booking rights to dedicated vascular access surgical clinic and theatre slots. HEFT Final Renal Visit Report doc 5

6 REVIEW VISIT FIDIGS ACHIEVEMETS This service is provided by a very good team who work well together. There are excellent results in some areas, including pre-dialysis care and vascular access. There is a good anaemia management team and a well run technical service. Infection control is well organised with good audits and monitoring. The number of live donor transplants has doubled in the last year. Clinic letters are sent to the patient, with copies to the GP, and considerable effort has been put into ensuring the language in these letters is appropriate. There is a good system of reviewing creatinine levels on all in-patients and follow up by the renal service. IMMEDIATE RISKS 1 The Trust does not have sufficient haemodialysis capacity for the number of patients needing this service. Some patients are being dialysed twice instead of three times a week. Some patients have been assessed as needing dialysis but are not yet receiving this. This group of patients is being risk assessed on a weekly basis. The visiting team was told that some additional capacity will be available next week but this will not be sufficient to provide full dialysis for all current patients and will not meet expected increases in need for the service. A business case for further additional capacity was developed approximately nine months ago but has not yet been agreed. COCERS 1 The peritoneal dialysis service is not well developed (especially in comparison to the haemodialysis service). The clinical and training area is too small to ensure appropriate infection prevention and to allow privacy and dignity for patients. There are plans for a new procedure room, but this will have no windows and the visiting team considered that it would not be fit for purpose when developed. The proportion of patients on peritoneal dialysis is low compared to other services. The patient information about peritoneal dialysis is less well developed and it is not clear that all patients are, in practice, being offered an open choice of dialysis modalities. 2 Interventional radiology capacity is insufficient for the number of patients needing this service. There is only one interventional radiology room on site. Waits for out-patient investigations are currently four to six weeks, rather than the recommended two weeks, which could have a significant impact on some patients. This problem will increase as patient numbers continue to grow. 3 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 HEFT Final Renal Visit Report doc 6

7 patients on the transplant list and post-transplant follow up, are not formalised. There was little evidence of the service using local media to celebrate transplant successes. 4 There is no psychological support service with time allocated to the renal service. Patients needing psychological support are referred back to the general practitioner and the timelines and extent of psychological support available is then variable. 5 The isolation room for patients with hepatitis B is off the main waiting area and cannot be monitored properly by nursing staff. Patients are risk-assessed and unstable patients are accompanied by a nurse. urses pop in to other patients. This arrangement does not allow for appropriate supervision of patients or best use of nursing time. FURTHER COSIDERATIO 1 The arrangements for getting feedback from patients and ensuring lessons are learnt may benefit from review, although a patient survey has already been undertaken. The visiting team was told of several examples of patients concerns which could have been used to improve local services. These included care of renal patients in the Emergency Department while awaiting admission; lack of transfer of information between Birmingham Heartlands and Good Hope Hospitals with tests being repeated and discharge delayed as a result; noise on the dialysis unit in the evening and patients feeling that nursing staff did not have time to talk to them. Some of the patients who met the visiting team were not aware of the existence of the local Kidney Patients Association (KPA). 2 Some staff were concerned that the nurse and HCA training arrangements may not be sustainable within the new management structure. The visiting team also heard different views on the arrangements for maintaining competences of staff working in satellite units. Some staff said that there is regular rotation to the main unit, whereas others said that this happens only when a nurse considers that he/she needs an update. 3 The amount of pharmacy and social work time allocated to work with the renal service is less than the recommended levels (see Quality Requirement 24). 4 Some protocols and guidelines are out of date and have not been reviewed. Some have been written recently and it will be important to ensure these are followed through to full implementation. 5 The notes seen by the visiting team did not include any record that patients are given information. A good information prescription is available and it may be helpful to record in the notes that this has been followed. HEFT Final Renal Visit Report doc 7

8 GOOD PRACTICE 1 There is an excellent vascular access service and 88% patients have permanent dialysis access. There is a vascular access co-ordinator (and deputy) who is given the responsibility to organise vascular access for patients. She runs a very good programme of access surveillance, including scanning, and problems are picked up early. She also liaises directly with the vascular surgeons and interventional radiologists (with nephrologist involvement only when required). There is good team working with regular multi-disciplinary team meetings, a good fast track system when problems are found and good emergency arrangements when required. 2 The service actively encourages self-care of patients on haemodialysis. A specific nurse has responsibility for the self-care programme. A training programme has been developed and there is a dedicated self-care area on which patients can book times for their dialysis. Patients are actively encouraged to become independent and self-care is used as a stepping stone to home haemodialysis. 3 A separate record is kept of deviations from agreed clinical guidelines. This makes it very clear when and why deviations have happened. COMPLIACE WITH QUALIT REQUIREMETS Compliance with individual quality requirements is shown in Appendix 2. Overall, the Trust met 57% of the quality requirements for patients with end stage renal failure. HEFT Final Renal Visit Report doc 8

9 APPEDIX 1 MEMBERSHIP OF VISITIG TEAM Dr Jonathan Odum Consultant ephrologist Royal Wolverhampton Hospitals HS Trust Dr Paul Cockwell Consultant ephrologist University Hospital Birmingham HS Foundation Trust Jo-Anne Deane Modern Matron University Hospitals Coventry and Warwickshire HS Trust Sue Dean Senior Development urse University Hospitals Coventry and Warwickshire HS Trust Gary Bennett Senior Charge urse Royal Wolverhampton Hospitals HS Trust Roger Moore Chief Renal Technician Royal Wolverhampton Hospitals HS Trust Kerry Malpass Business Manager Shrewsbury and Telford Hospital HS Trust Emma Bowers Dietitian University Hospital of orth Staffordshire HS Trust Dawn Roach User Reviewer ick Flint User Reviewer Sarah Freeman Specialist Commissioner Specialised Commissioning Team (West Midlands) Sarah Broomhead Quality Manager West Midlands Quality Review Service Jane Eminson Acting Director West Midlands Quality Review Service OBSERVERS Steve Sharples Board Member West Midlands Quality Review Service Board Sam Shah Consultant Finnamore Management Ltd. HEFT Final Renal Visit Report doc 9

10 APPEDIX 2 COMPLIACE WITH QUALIT REQUIREMETS Ref. Quality Requirement (QR) Met? Comments 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 becoming 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 There is very good information on access to the Asian smoking cessation service. Information on the physical, psychological, social and financial impact of renal disease is good for transplantation but otherwise limited. Information on facilities for relatives could be more detailed. The information on support groups available is also limited. There is a KPA newsletter but other information does not mention the KPA. Patient information mentions the etwork Patients Forum but not how to become involved. Some information would benefit from more detail, especially information on eligibility for free transport, how to access this service and information on eligibility for temporary dialysis away from home. The six monthly reviews are not yet holistic. Patients who met the visiting team were not aware of the range of information that was available. The information available does not cover the management of pain. HEFT Final Renal Visit Report doc 10

11 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. 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. Food should be offered to all patients who are away from home for more than 6 hours to attend clinic or receive dialysis. There was no patient information about the annual review while on the transplant list. Additional detail on potential complications and what will happen if they are not accepted onto the transplant list may be helpful. The expected competences for haemodialysis are very clear. There are competences for patients on peritoneal dialysis but the achievement records are not as clearly organised. The Trust is working with others across the renal network to develop a care plan. HEFT Final Renal Visit Report doc 11

12 11 Free car parking should be available close to the dialysis unit for haemodialysis patients attending for dialysis. STAFFIG and SUPPORT SERVICES 12 The service should have a nominated lead consultant nephrologist and a 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. 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. 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 The capacity increases planned for the next few weeks involve using clinical nurse specialists to run twilight dialysis sessions. See 'good practice' section of report. HEFT Final Renal Visit Report doc 12

13 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 one 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. 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 This Quality Requirement is met except that all Clinical Technologists are not yet on the Voluntary Register. Four are on the Register, one application is in progress and two are preparing their applications. There is a very good system which uses First Response rather than the hospital switchboard. This means that the nature of the fault, time and other relevant information is recorded and a report of any call outs is available the following day. Dietitian staffing is at the recommended level There is no psychological support with time allocated to their work for the renal service. Pharmacy and social work support is available but does not have the recommended amount of time available. Contraception and sexual health services were not available and there was no information on how to access these services. HEFT Final Renal Visit Report doc 13

14 26 27 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 is very good support from vascular surgeons and interventional radiologists. 28 There should be a nominated transplant coordinator with lead responsibility for live kidney donors. FACILITIES AD EQUIPMET 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. Inpatient 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 /A The transplant co-ordinator has double the number of live donors in the last year. The isolation room for patients with hepatitis B is off the main waiting area and cannot be monitored by nursing staff unless someone is in the room with the patient. 12 machines are on the risk register but are used only for patients returning from holidays. concentrates are bought in. Only one type of dialyser is used. HEFT Final Renal Visit Report doc 14

15 45 Appropriate facilities for isolation of patients should be available. The isolation room for patients with hepatitis B is off the main waiting area and cannot be monitored by nursing staff unless someone is in the room with the patient. 46 weighing scales should comply with on- Automatic Weighing Instrument (AWI) Regulations 2000, part III, section 38. GUIDELIES AD PROTOCOLS: patients 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) Scales on the hospital site and those used for home haemodialysis meet the Regulations. Patients do not yet have a written care plan, or their own copy of this, but this is being developed with other services in the network. This QR is met apart from sexual health, contraception and pregnancy. HEFT Final Renal Visit Report doc 15

16 49 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 Guidelines relating to anti-platelet therapy, lipid reduction therapy and control of hypertension were not available. Other aspects of the QR were met 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. 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. The process of referral for psychological support is clear (although this involves accessing this service through the GP). The system for ensuring discussion of transport arrangements and recording the agreed arrangements is covered briefly but not in detail. HEFT Final Renal Visit Report 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. 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. 55 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). There is a form on which access issues are recorded but no protocol to drive the access pathway - although, in practice, the process works very well. Indications for antibiotic prophylaxis are not clear. This protocol should ensure that, whenever possible, access is established and functioning 6 months before haemodialysis and four weeks before peritoneal dialysis. 56 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. There is not a clearly defined process. Discussion takes place but the resulting decision is not clearly recorded. The process does not ensure that clinically appropriate patients are placed on the transplant list six months prior to the predicted start of dialysis. 58 A protocol should be in use covering referral of patients with diabetes for combined kidney and pancreas transplantation. Information from the Oxford service was available but this does not include the indications for referral to the service. HEFT Final Renal Visit Report doc 17

18 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 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 (CHD) 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 There is a protocol, which could be more explicit about the reinstatement of patients onto the list as soon as clinically appropriate. The Oxford simultaneous kidney and pancreas transplant protocol is in use but this does not cover all the requirements of the QR. A protocol is being developed but has not yet been implemented. The regional protocol is available but there is no audit of the timeliness of completed investigations. There is a good protocol covering self-care for haemodialysis patients. There are competences for peritoneal dialysis but the system for recording achievement of these competences is not robust. HEFT Final Renal Visit Report doc 18

19 64 65 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 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 The outcome of the holistic review should be documented in the patient s care plan. Most aspects of the QR are met. The protocol does not cover indications and arrangements for change of dialysis modality. Six monthly holistic reviews are taking place for patients on peritoneal dialysis but not those on haemodialysis. Transport arrangements are not fully covered in the current documentation 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 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). 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 Interviews take place within one month of starting dialysis and there are indications for referral to the dietitian at other times. Annual nutritional assessments cannot be guaranteed and are not always undertaken. There are no written guidelines but there is, in practice, a good process for managing end of life care. protocols are either in draft form or past their review date. There are some inconsistencies between protocols and some do not reflect latest Renal Association Guidance. There is no protocol for pre-dialysis blood sampling. HEFT Final Renal Visit Report doc 19

20 70 71 A protocol should be in use covering: Care of temporary and cuffed dialysis lines and arterio-venous (AV) 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 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 Clinical guidelines should be in use covering management of: peritonitis hernias Protocols for temporary neck lines and for decontamination of equipment after use by patients with blood borne viruses could be clearer. aspects of the QR are met except for the management of anxiety and pain. It is not clear whether the protocol covering monitoring of access performance is in use. Clinical guidelines cover all aspects of the QR except for the management of anxiety and pain. Guidelines are still in draft form. HEFT Final Renal Visit Report doc 20

21 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. The network protocol is in use 76 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 predialysis /pre-esrf programmes Contraception and sexual health Care of mother and baby during pregnancy Monitoring of growth (children and young people only) SERVICE ORGAISATIO and LIAISO WITH OTHER SERVICES 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. 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. o follow up protocol was available. A patient satisfaction survey has been carried out and there is a local KPA. See 'further consideration' about the need further to develop local mechanisms. The multi-disciplinary discussion does not include the renal pharmacist or clinical technologist 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. 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. The guidelines are brief and would benefit from more detail. There is good liaison with the diabetes service and very good guidelines on liaison with rehabilitation medicine. o evidence of compliance with this QR was available. The Trust is waiting for updated national workforce requirements before undertaking this work. HEFT Final Renal Visit Report doc 21

22 93 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. 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 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. The unit has audited travel times but not the relationship between timing of access surgery and start of dialysis. o evidence of compliance with this QR was available. HEFT Final Renal Visit Report doc 22

23 APPEDIX 3 TRUST IMMEDIATE RISK ACTIO PLA Immediate Risk otified to Trust The Trust does not have sufficient haemodialysis capacity for the number of patients needing this service. Some patients are being dialysed twice instead of three times a week. Some patients have been assessed as needing dialysis but are not yet receiving this. This group of patients is being risk assessed on a weekly basis. The visiting team was told that some additional capacity will be available next week but this will not be sufficient to provide full dialysis for all current patients and will not meet expected increases in need for the service. A business case for further additional capacity was developed approximately nine months ago but has not yet been agreed. Action Plan to Address Immediate Risk Received from the Trust Action Future planning Outcome Weekly review of all patients assessed as needing haemodialysis with risk assessment to ensure the risk of hyperkalemia and fluid overload is minimised. Any patient deemed to be at moderate or high risk of harm is dialysed using the emergency facilities till they can be allocated into the end stage programme. patients receive optimal dialysis treatment. With the support of Clinical urse Specialists, additional capacity has been identified and commenced to enable three times weekly dialysis of all current patients ew nurses have been recruited to man these shifts once fully trained, thus releasing the Clinical urse Specialists to continue their usual duties Provision of experienced and trained nurses will deliver dialysis in the shortterm, thus enabling time to develop nursing skills in new recruits in time for a further shift at Castle Vale Satellite Unit A Business case to expand the Castle Vale Satellite Unit has been submitted to respond to known demand in service. Agreement of the business case will enable a further shift to open in 3 months time to accommodate demand. This also provides time to fully train newly recruited staff. Robust plans are in place to prevent recurrence of sub-optimal dialysis treatment in future. This will provide dialysis to orth Birmingham patients, an area less well covered, thus responsive to local demand Provide access to home therapies such as Home Dialysis and CAPD. Develop patient education programmes to enable conservative management to patients who are unfit or unwilling for dialysis treatment. Develop training programmes for patient self-care, thus reducing the reliance on haemodialysis services. Prevent progression of renal failure by careful control of blood pressure/other risk factor. Development of patient education and choice in dialysis care provision. Maintenance of patient choice HEFT Final Renal Visit Report doc 23