Outcomes from the Kidney Wales Patients Conference
Need for patient and carer support groups
A clear message was the need for patient and carer support groups to be established. Patient and carer support groups are available for other areas. It was noted that the Can Do Project with Young Adults could be rolled out with all Patients.
Patients identified a need for further provision of psychological care and support in renal services. Currently the following provision is available:
- South and West Wales – two part time psychologists and one counsellor cover the area from Cardiff to Pembroke
- Aberystwyth – no psychologist available but a renal social worker is
- Alltwen and Elidir Renal Units – psychologist, counsellor and social worker shared between the units
- Ysbyty Glan Clwyd Renal Unit – psychologist available on site also responsible for pre-renal care diabetes patients
- Welshpool and Wrexham – psychologist and social worker shared between units.
The need to have access to support systems was viewed as being central.
Patients felt that there was a need to be told the pros and cons of procedures and decisions in advance of them needing treatment. A specific example was not having appropriate information for a fistula which became infected and failed, something that could have been avoided had full information regarding it been made available.
Patients also felt that the information available was not presented in an accessible way. In particular, younger patients were keen to be involved in helping to present information in more innovative ways such as art and video.
Patient View: Approximately 50% of patients were unaware of the Patient View service. The government’s policy is that Patient View should be available Nationwide but many patients were not aware of the service in Health Board areas where it is already available.
Carers provide much care of patients and both patients and carers identified a lack of support, for example emotional support for carers and how they also need to be taken care of. There also appears to be no standard protocols which dictate whether carers are able to attend dialysis units with patients
Improved GP services
Experiences of not being diagnosed early enough, leading to deteriorating health and some needing to retire from senior positions earlier than hoped.
Live donor care
It can be a long wait for a live donor before transplant date, which can create a lot of anxiety for the donor. This is particularly difficult where the donor and recipient are living in different Health Board areas.
Patients wanted more information on exercise and more provision to be able to exercise, particularly when on dialysis.
Patients felt that they did not receive enough dietary advice and data from the Can Do Project demonstrates that many patients had not consulted with a dietician.
More encouragement needed to help patients self-dialyse and explain the benefits of them being able to do this. Also the provision of home dialysis needs to be improved.
Research, both medical research and patient/carer experience centred research, in Kidney Disease is important but patients often didn’t recognise the benefits of research or were unsure as to the purpose of it.
Joined up thinking
Patients felt that there is not enough joined up thinking between different parts of the NHS, particular between primary and secondary services.