MRIKPA Chair’s Article – Spring 2023

Dear Members

I trust as vulnerable Kidney Patients, you will have taken advantage of the COVID vaccinations that we are eligible for.

There is no question that COVID remains prevalent in communities, but as a rule patients are having a mild experience if they are affected. Winter always brings cold and flu and this winter has been no different and often those symptoms can be mistaken for COVID. Any patient who wants to know more about COVID treatments should visit the National charity Kidney Care UK site: www.kidneycareuk.org/coronavirus-hub/

At the time of writing, the NHS is in the Press headlines for all the wrong reasons. There is no doubt there is a crisis in A&E, mainly created by a lack of beds in the hospital to allow A&E patients be admitted efficiently.

As a kidney patient at the MRI for 27 years, staff shortages have always been a problem and these are more about the fact that the NHS is a huge organisation of human endeavour serving humans in distress. There are so many competing issues and needs that inevitably create stresses, but in all my years of kidney care, I have received good care and attention. However to negotiate myself through the NHS inefficiencies, I have treated my care as ‘an equal partnership’ and made sure I understand my care needs and what is needed. Most patients I meet who agree with me that their care is good also agree that ‘partnership’ is the best way forward.

Part of that has been the ability to see my blood results online and knowing what they mean. Patient View was a superb service for Kidney Patients, bringing blood results online for us to access independently.

Sadly that online service has ended, as the programme has had its IT support ended nationally. The replacement was Patient Knows Best, but for MRI patients this has been superseded by the new Manchester Foundation Trust portal MyMFT. The Trust has created a portal across all its hospitals to offer online joined up care to all its patients. Overall this is a positive move for Kidney patients who may have heart, skin, urology and other speciality issues to see notes, appointments and results all in one place.

However the system is not ‘speciality specific’ and so our blood results are not being reported as quickly as Patient View, as the default timing for patients’ viewing ‘abnormal blood results’ is 15 days. This is because other specialities like cancer need time for doctors to explain results to their patients. As a KPA, we have made representations to the Renal Service and the Trust to get our results viewed earlier.

Despite energy bills being supported, the price of electricity remains a great concern for any kidney patient, especially patients undergoing home dialysis. All MRI Home Haemodialysis patients are entitled to a heating allowance and electricity rebate based on dialysis hours. Contact the Home sisters on 0161 276 4435 for further information.

The cost of living haunts us all, but as a patient if you are finding financial circumstances directly affects your ability to attend predialysis, do dialysis or protect a transplant, there is welfare help from the KPA and national charities. Our only request is that you refer your needs to a member of the renal service, be it a Nurse or a Doctor or Renal Social Worker or Renal Psychologist, so that we have an opportunity to understand your clinical needs and match it with appropriate welfare support.

I end with a request that any patient or Carer who wants to help the KPA, please contact us.

Regards

Guy Hill

Chair, MRI KPA

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