I started writing this post in Autumn 2020 when we thought we were emerging from the darkest days of the pandemic. Sigh! However, there is a glimmer of light in the distance so I decided to go ahead and publish it, maybe, to encourage people not to accept that you have to wait helpless or powerless on waiting lists. Make some noise, don’t accept and to borrow a hashtag from the DIYAPS community #WeAreNotWaiting
The information in this post is a collection based on personal experience and some suggestions from Diabetes Ireland who frequently offer advice to people who are on waiting lists for excessively long periods.
The Impact of Waiting
Before Covid, outpatient waiting lists were a serious, serious issue for people with diabetes, but now that services are resuming at reduced capacity, after a second period of cancellations and with the same understaffed levels, they have become more chronic and have added to our anxiety levels. My local hospital's waiting list for a first appointment at a diabetes clinic went from 4 to 5 years from March to September 2020, I dread to think what a newly diagnosed person with diabetes is facing in February/March 2021.
I came across this study into the negative impact of the COVID-19 pandemic on people with diabetes and diabetes services and it makes for thought provoking reading. The study shows “increases in hospitalisation; hyperglycaemia and ketosis; and incident diabetes cases.” (link to study here).
Who should attend hospital based diabetes clinics?
Firstly, I should point out that not every person with diabetes needs to attend a hospital based clinic; people with “uncomplicated” type 2 diabetes are advised to attend community based diabetes care - this means attending their GP for reviews and having access to diabetes specialist staff (i.e. nurses, dietitians, podiatrists, etc.) in a community health centre. There are national standards of care documents for diabetes in children, adults with type 1 diabetes and people with type 2 diabetes; links to all of these documents can be found here.
In a nutshell the standards set out by these HSE guidelines state that:
Children, adolescents and adults with type 1 diabetes receive their care thought hospital based or tertiary clinic
Adults with “complicated” type 2 diabetes receive their care thought hospital based or tertiary clinic
Adults with “uncomplicated” type 2 diabetes (this is an unfortunate word choice because as far as I’m concerned all Diabetes is complicated) receive their care through their GP supported by community based diabetes nurses and dietitians
Tips for Speeding up the Waiting List
All of these suggestions do depend on what services are available in your area but there should be something here that should help most situations, if not please do contact Diabetes Ireland for more specific information.
No. 1 Confirm you are on a Wait List
The first step is to confirm with your GP that you have been referred and what date he/she sent the referral. However, we all know that some referrals do get lost: so it’s also a good idea, if at all possible, to confirm with the clinic that your referral has been received. Your GP may be able to provide you with a telephone number for the outpatient department to check that you are on the waiting list.
Then you can decide to do any or all of the following:
Make some calls!
Follow up option 1 - Contact the Outpatients Department
Usually, the diabetes outpatients clinic has their own telephone number, sometimes this can be found on the hospitals website or on the HSE’s website. You can call to plead your case. They may be able to offer you some advice or maybe see you in one of their diabetes clinics before transferring you to the appropriate one.
Follow up option 2 - GP Letter
You can ask your GP to write a strong letter seeking an urgent appointment to speed things up.
Follow up option 3 - Private Healthcare Option
A lot of times the endocrinologists in the outpatient clinics have private practices. Yes, this is expensive but sometimes the consultant might be willing to fast track your transfer into his/her public clinic after a couple of appointments.
Follow up option 4 - Community Healthcare Organisation
You can ask your GP to refer you for an appointment with the community based diabetes nurse specialist to get into the system quickly. The community based diabetes nurse specialist is available through a direct GP referral and this service is a little less pressured resource so a much shorter wait.
Good tip - Connect with the Diabetes Community
Connect with other people with diabetes and the Diabetes Online Community to find out what resources are available in your area and for “insider” information.
Use Your Frustration for Good
Being able to access diabetes clinics should not be something we have to fight for in a developed country in the 21st century. But it is! Diabetes clinics are chronically understaffed and I would urge anyone who is having this experience to please consider making a formal complaint to the Hospital management. It’s also worthwhile contacting all of your local TDs who have the ability to put pressure on the Minister for Health to provide funding to address such issues.
My Personal Experience with Waiting Lists
I’ve changed my care several times in the 28 years I’ve had diabetes but most of those times happened from 2006 to 2008. The first time I changed was when I was really unhappy with the care I was getting locally, I found out through our local diabetes support group where others were finding care they were happy with and I asked my GP to refer me because I didn’t want to have this discussion with the current team.
In 2014, my consultant moved to a far away county, so I chose to find a new clinic. Once I had confirmed with my leaving consultant that she had referred me I followed up with my new-to-be clinic via telephone where I explained my situation and that I had been without care for over a year. The clinic squeezed me into their type 2 clinics and once I was seen transferred me to the insulin pump clinic for my next appointment.
This is just my own personal examples of how to speed up getting off the waiting list and into clinics please read on for more options.