Provision of care for chronic kidney failure
18. Mrs E wants the Trust to offer a more flexible service and for staff to give assisted home HD. She says two business cases have been raised and the Trust has shown a lack of commitment to this being an important service.
19. The Trust says sessions times for HD were reviewed at the start of the pandemic and the opening hours were extended to 7.30pm. It says this is a permanent change but it is not possible to extend this further, due to staffing and financial costs. It explains its objective is to offer a full six day service, instead of the current five day and Saturday morning on call service. It says a business case was presented on in July 2021. Further information was requested, and the final business case will be presented in September 2021. If approved, it will enable a six day rota and home HD service.
20. We will consider the concern about the flexibility of the Trust’s service first and then consider the issue of assisted home HD being offered.
21. We understand Mrs E is pursuing this to make sure Mr R gets the best healthcare possible, with minimal disruption to his schooling and social interaction. We agree a Trust should do all it can to offer the best possible service. We know there will be limitations on what service Trusts are able to provide due to staffing and cost implications. We are not critical of this as we know staffing shortages are a national issue and often decisions on how money is spent are made at a higher level, beyond a local Trust’s control. However, we expect a Trust to do all it can with the resources available to it.
22. We cannot say the Trust failed to offer a flexible service. The Trust was already offering a five day service, with Saturday mornings on call. We are pleased the Trust was open to extending its service times and it has achieved this. In line with Mrs E’s desired outcomes, the dialysis service times have been extended and this should benefit Mr R and others. If the business case is approved, the service will be further extended to six days.
23. Mrs E feels the Trust does not understand Mr R’s situation and should have done more for him. The Trust explained it arranged with another child to have HD at a different time. It says this was to accommodate social distancing and not specifically for treatment to be outside of school times. It says it offered Mrs E a Saturday morning session, but this was not suitable for them. The Trust says it aims to offer HD sessions in the future that accommodate school attendance.
24. Our Principles of Good Complaint Handling highlight how organisations should be customer focussed. They say organisations should listen to the complainant’s views, so they understand what is wanted and respond flexibly to the circumstances of the case. Our view is the Trust has listened and understands what Mrs E is seeking. It has explained what it can offer now, and what it plans to be able to offer in the future. This shows it is aware of the needs of its patients and is flexible where it can be. We are aware Mrs E has been pursuing this for some time. Unfortunately, changes do take time to implement. We have not seen anything to indicate a failing.
25. We will now consider Mrs E’s request for home HD to be offered, and for Trust staff to assist with this.
26. Mrs E is concerned that Mr R’s health will be affected by the Trust not offering home HD. She says he needs a gentler dialysis due to his disability, that the Trust should allow for this and for staff to assist.
27. The Trust does not currently offer home HD for children. It does offer a home HD service for adults, but staff do not assist with this. The Trust said in its August 2020 complaint response that it is prioritising the extension of dialysis sessions, and it will be some time before it is able to offer home HD, and to offer families training to help with this.
28. We empathise with Mrs E wanting to secure this service for Mr R as soon as possible. Our remit does not allow us to achieve clinical outcomes. This means we would not be able to tell the Trust to provide this service for Mr R within a set timescale. But we can look at whether the Trust is withholding a service that it can, and should, offer.
29. NICE guideline on ‘Renal replacement and conservative management’, says Trusts should, ‘Offer choice of dialysis modalities at home or in centre ensuring the decision is informed by clinical considerations and patient preferences’ (paragraph 1.3.8). It also says decisions on care should be made jointly with the family considering their preferences, the predicted quality of life, predicted life expectancy, and any co-existing conditions.
30. Mrs E has explained her preference and the reasons for it. NICE does not say that a Trust must offer assisted home HD, but this is an option dependent on clinical consideration as well as patient preference. For us to reach a decision, we looked at the clinical considerations and barriers to the Trust offering home HD.
31. In its complaint response, the Trust says it cannot offer gentler dialysis to Mr R within the six month timeframe Mrs E requested. It says if the business case is agreed it will be able to offer home HD, and to recruit and train more staff. The Trust says it aims to employ a clinical education post to support a renal education program for both Trust and external staff. It says this will help to develop staff to work flexibly, and to train families to deliver the service at home, rather than needing staff to go to the patient’s home.
32. These are all positive proposals, although we understand Mrs E feels it does not address her request for assisted home HD. These changes hinge on the business plan being agreed. We asked the Trust to give us an update on the outcome of the business case, put forward in September 2021. It confirms the case was submitted to the business case review group and reviewed at a meeting on 11 October. The group approved the home HD business case to progress to a Hospitals Charity Funding Committee in January 2022, and then for ratification by the Board of Trustees. Based on this, we do not think the Trust failed to try and secure this provision. The evidence tells us it agreed with Mrs E and therefore made the business cases to enable it to offer the service.
33. The Trust further explains that the Trust Board is committed to improving clinical services but must also adhere to its duty of balancing the hospital’s income and expenditure. Each year commissioners will approve a limited amount of additional investment to enhance the quantity and quality of care for the Trust’s catchment area. Sadly, this funding is never enough to meet all the projects the Trust wants to run, so the Trust’s directors have to prioritise.
34. From this, it is our view that making the business case is the right thing to do, to try and bring about this change. Unfortunately, a Trust cannot make this decision without following this process. It does not have authority to grant this change on its own. We are pleased to learn that the Trust has applied to a Hospitals Charity to fund the costs of establishing a home HD service for children. The cost of this has been outlined in the business case with the charity identified as the source of funds for the service.
35. We have not seen an indication of a failing in the Trust not already having a home HD service for children. It is working to establish this service and we have evidence that the business case has progressed.
36. The Trust’s adult service does not allow for assisted dialysis. We know Mrs E feels strongly that the Trust should offer this for children like Mr R who will need help. Again, this will be subject to funding and staff resources. It is not something that the Trust is able to offer now, but it may be able to do this is in the future. We have not seen anything to suggest that this is a failing in care.
Complaint handling
37. Mrs E complains about the Trust’s complaint process saying it was dealt with by a junior service manager, and clinicians were not involved. She explains she has been pursuing these issues for some time and the Trust has not provided suitable remedies.
38. The Trust’s complaints policy explains how a complaint will be allocated to a complaints handler to manage and then to a lead investigator to complete the investigation. The policy explains how complaint responses are checked by the Executive team (Head of Nursing or Professional Lead) before being approved and signed off.
39. Our Principles of Good Complaint Handling explain what is meant by good complaint handling and what we expect organisations to do. Our principles say that senior managers are responsible and accountable for the complaint handling and should support staff to deal with complaints effectively.
40. We understand Mrs E’s concerns and agree that complaints should be taken seriously. The Trust’s complaint handling policy does not stipulate what seniority the lead investigator should have. Our principles explain how we expect senior managers to take responsibility for the complaint handling, but this does not mean that only senior managers can investigate. Senior managers are accountable for the overall process in the same way that senior staff are accountable for the actions of their staff.
41. Our principles further explain how senior managers should support staff to deal with complaints effectively. Therefore, we are not critical of the Trust for delegating the investigation to a more junior staff member. We would expect the Trust to appoint a suitable person to lead the investigation and if they do not have a senior role, this does not indicate a failing. It is at the Trust’s discretion as to how it allocates the investigator.
42. However, having looked at the Trust’s complaint responses, we do not think the investigation has been handled by junior staff. The complaint responses explain who investigated the complaint. These include a Head of Nursing, Children’s Service Manager, Matron for Children’s Medicine and Medical Specialties and Charge Nurse and Clinical Nurse Specialist Team Leader. The responses are signed by the Chief Nurse and Medical Director for Governance and Risk. This gives evidence of suitable staff being involved and these having both clinical and senior roles. This meets the expectations set out in the Trust’s policy.
43. Mrs E may feel that the complaint responses being signed by senior staff, does not mean that they have any meaningful involvement in the investigation. The complaint file documents throughout how the complaint responses were quality assured, approved, and signed by the chief executive team before issue. There is evidence of draft responses being shared internally ahead of meetings for review and feedback. Also, there is evidence of the executive rejecting a draft response and sending it back for amendments. This assures us of senior managers taking responsibility of the complaint handling, in line with our principles.
44. It is documented in the complaint file (December 2019) how Mrs E wanted to meet with staff who had authority to change and improve things. The Trust did give Mrs E this opportunity and she met with various senior clinicians.
45. We realise Mrs E feels the decision about what services the Trust offers (the business case) should be reviewed by a clinician and not a business manager. We have seen the Trust’s complaint file, and how Mrs E raised this specifically on 7 July 2021. We have considered above the business case as well as the approval of this. We are satisfied that clinicians’ have been sufficiently involved in putting the business case together. There is a set process to follow when a business case is made, and the decision is made by the Board and Charity committee. It is our view that the overall decision not being made by a clinician, does not indicate a failing in the decision-making process.
46. We are sorry Mrs E feels she has been pursuing this for some time, that her complaint has not been taken seriously, and the Trust has not resolved things suitably. Mrs E also says the clinicians who were involved have provided untrue and misleading facts. While we understand Mrs E may disagree with the clinician’s opinion, we are not critical of personal opinions and do not seek to replace these with our own. We considered above the Trust’s decision regarding HD and did not find indications of a failing. This means that regardless of a clinician’s opinion, we do not think the Trust’s investigation was flawed or that it did not come to an appropriate resolution.