I attend the regular and very valuable pre dialysis evenings as an expert patient on a fairly regular basis however; I have never fully understood the role of the pre dialysis team at MRI. Therefore I thought I would go and find out.
I met with Sue and Chrissy from the team in April who took time out of their duties to talk through the role and work of the team with me.
The team consists of 6 specialist nurses, 1 full time and 5 part time and are located in an office behind the pre dialysis unit at MRI. The 6 team members are Sue Travers (team leader), Chrissy, Fiona, Chris, Lynsey and Jackie. Between them they have 140 years of experience working in the Renal world. They see patients from the North Manchester, Stockport, Tameside, Macclesfield and Altrincham areas and of course patients at MRI.
The team focus on three main areas of work; Education, Support and Assessment. Work covered under these areas includes data collection, audit, project work, clinics, ward cover and home visits to patients.
Approximately 270 new pre dialysis patients were seen in twice weekly (Tuesday am & Wednesday pm) pre dialysis nurse led clinics in 2015. The kidney function of these new patients would have fallen below 20% and been referred by nephrology, their GP or they crash landed into our kidney world with end stage renal failure.
The initial meeting is called the assessment. The nurse led clinic is held with the patient and their carer/family member to discuss the various dialysis options and patient’s lifestyle. Occasionally these appointments may be made at the patient’s home. No bloods are taken and these meetings usually last about an hour and sometimes dialysis options are not even mentioned. It’s an opportunity for the patient to share their concerns and fears about kidney failure. Patients are shown the dialysis equipment whilst posters and DVD’s are used to promote discussion around the reality of dialysis access and treatment. It facilitates assessment and the identification of those capable of self-care and to enable the correct decision is made regarding treatment.
Following the assessment an appointment will be made to see the lead pre dialysis consultant to discuss dialysis treatment, options and review of blood results. This information is used to determine the correct medical interventions. Following this visit the patient will be allocated a consultant for future visits.
The aim of the team and consultants is to have a treatment decision that is right for the patient by the end of the third visit. Once a treatment decision is made they work does not stop there. Patients can be reassessed as health and situations change, team members arrange and book urgent tesio line treatment if needed and ensure patient care through to the start of the dialysis treatment.
Patient Education meetings or pre dialysis meetings as I call them are arranged by Chris and Lynsey. These excellent and friendly meetings are used to educate patients in an informal way of the various dialysis options available. Expert patients share their experience of living with dialysis treatment whilst books, leaflets and dialysis equipment are available for patients/carers and family members to view.
Of course some patients don’t want dialysis for a variety of reasons and Jackie leads on the conservative management clinic. These clinics consider advanced life care planning, iron administration, support and advice with patients, relatives, GP’s and District nurses. Hospice referrals are also covered under this area of work.
Chrissy and Fiona lead on access methodologies. They support patient clinical needs i.e. urology, cardiology and haematology. They coordinate appointments ensuring access insertion and follow up for example fistula treatment. They work closely with vascular access, the renal community, CAPD, Dialysis units and various consultants and surgeons.
Under the learning disabilities pathway the team work with outside social care, dialysis units for a smooth transition for treatment for vulnerable patients.
The team currently support in different ways 230 maintenance dialysis patients, 71 home haemodialysis patients, 94 peritoneal dialysis patients and 81 patients on the conservative management list. A decision on the most appropriate dialysis intervention has to be made on 90 patients.
Challenges – I ask what are the challenges faced by the team. These include increasing the number of patients on home therapy and spending enough time with patients to fully explain the dialysis options and therefore build the confidence and reduce the worries for new patients.
The best things of the job – include the variety the work brings, no day is the same and the team feel there are really making a difference by supporting patients through some very difficult times and building a strong relationship with patients. Their work also brings them into contact with a wide range of different and non-renal departments in MRI so they can see the bigger picture across the hospital and avoids a silo mentality to their work.
What can patients do to help the team? The key thing is to stay in touch with the team to ensure the most appropriate intervention is available for the patient. Also no question is too stupid to ask. If you are not clear about something – ask.
Outside of work – The team do manage to socialise on a regular basis outside of work. They have regular nights out going for a meal and drinks and now each other’s families.
I found the meeting extremely interesting and this brief article hopefully gives you an insight into the teams work.
Mike Kewley
Mike Kewley, kidney transplant patient and member of MRI KPA
Someone should do this at Salford too so that Greater Manchester areas are covered. This is invaluable reading for any newly diagnosis patient to give them a better understanding of what will happen.
It could be well worth doing this at different types of clinic too, Transplant, Transplant workup and young patients that are entering adulthood. I know this last one is something Sarah Green feels strongly about.
Hi Brian, do you mean the evening sessions or the pre-dialysis clinics? Dr Rosie Donne runs pre-dialysis clinics every Wednesday but I agree, evening sessions with expert patients would be invaluable. I ran one at the last PKD Information Day and it was very successful.
Meeting the team at Salford to put a blog similar to this on so that patients can read what happens at Salford, which could be different to the MRI or at least it will let them know who they will be seeing. It’s something I myself may be able to do on behalf of HOPE KPA and GMKIN, unfortunately I won’t be able to do this until next year at least.
Hope you’re well Rob and it would be nice to see you.