In our previous intro blog we talked about a recent Cochrane systematic review on the use of patient-initiated appointment systems for managing the care of people with chronic or recurring conditions in secondary care.

This is the first of a series of blogs looking at PIAS from different perspectives. Each blog will provide a different perspective from that of a service user (patient), a clinical nurse specialist, a consultant, a service manager to that of a health service commissioner. These blogs aim to stimulate the conversation around the future of high quality and sustainable care management for those with long term, recurrent or chronic (and perhaps multiple) conditions.

The service user perspective

George SU blog

So who are you and what do you do?

My name is George, I am a 54-year-old man, living in South East Cornwall with my wife Jen and our 10 year old Black Labrador, Murphy.

I was diagnosed with rheumatoid arthritis around 10 years ago, whilst employed as a police firearms officer with the Ministry of Defence Police. My condition ultimately led to me taking early medical retirement in 2018.  Since then I have enrolled on a full-time degree course as a mature student at the University of Plymouth.

Taking Murphy for regular walks helps keep me fit and helps ease stiffness in my joints. Especially when the walks take us to the local pub.

What is your involvement with patient-initiated appointment systems (PIAS)?

During the early stages of my diagnosis, I had a lot of concerns and worries about my condition, my employer was also asking a lot of difficult questions about my ability to carry out a full range of duties. Getting answers was not that easy. I would have to make appointments with my GP who would invariably refer me to the consultant rheumatologist at Derriford hospital. Getting an appointment to see the consultant could take several weeks or on occasions, months. This meant that quite often, it was not only me that was frustrated, but also my employers, by the length of time it took me to get answers to their questions.SU blog 1

The normal telephone advice line could also take several days to reply to messages and even then, they could not make hospital appointments for me. My condition meant that over a period of time, I was tried on various biologic drug treatments, a class of drug used to treat rheumatoid arthritis. Biologic treatment, although won’t cure rheumatoid arthritis has greatly improved the condition for many sufferers. For me, they had varying degrees of effectiveness, some really helped my condition, but some created problematic side effects affecting my liver. Because of this, the need for me to be able to see someone from the rheumatology department on a regular basis, meant that I was able to use the patient-initiated appointment service.

How has PIAS affected you?

The beauty of being able to use the patient-initiated appointment service meant that I was able to contact the appointment booking service whenever I felt the need to do so. Generally, I was able to make an appointment to see one of the rheumatology team within a matter of weeks, as opposed to months. In addition, if necessary, a member of the team would call me back, usually within 48 hours to provide a telephone consultation.

This has dramatically reduced any stress or anxiety I previously had whilst waiting for an appointment and has been a great benefit to my overall wellbeing.

SU blog 2

What do you see as the main advantages of the PIAS approach?

Earlier this year, I had a further change in my prescribed acute medication. My GP was unsure about the need for my continuing to have monthly blood tests. I made one phone call to the PIAS at Derriford hospital to explain the situation, they called me back within a matter of hours, gave me advice over the phone and arranged an appointment with the rheumatology clinic within a week.

What do you feel needs further development or consideration?

The only negative I can find, is that on very rare occasions, I have had a call back from someone who it seemed, was not best placed to give appropriate advice; it was apparent they had not checked my notes beforehand.  This led to a delay in getting an appointment and accurate advice. But as I say, it is a very rare occurrence.

What have you learned from your experience of PIAS and what advice would you give to someone considering starting one?

PIAS may not be suitable or appropriate for all patients. However, for those like myself, with less stable conditions that need speedier access to help, it is a godsend. But remember it is not there to be taken advantage of, the workload of the clinical staff is enormous, it’s always advisable to speak to your GP first (where appropriate/agreed) or use the telephone advice line.

 

With many thanks to George for agreeing to share his experience (and his photo!).

The next blog in the ‘Perspectives on patient-initiated appointment systems’ is ‘The Clinical Nurse Specialist‘.