No decision about me without me (and my Patient Participation Group) – Bruce Elliott

‘No decision about me, without me’ was the title of a Government Health Policy released in 2012. The importance of involving patients in the management and control of our health and care is still at the forefront of NHS policy and plans. And yet in practice, it is often so hard to do.

Bruce, left, with his son Rory after they had both done the Great North Run in aid of Diabetes UK for the second year running
Bruce with his son Rory after they had both run the Great North Run in aid of Diabetes UK for the second year running
I was diagnosed with Type 1 diabetes in January 1970 and it has always frustrated me that I could never view:

  • the results of my regular blood tests to monitor my control

I like to get a pat on the back when they’re good and understand how to address them if they’re bad. Until recently I never knew them between one Diabetic Annual review and the next.

  • the dates when I’d changed particular medications and the impact that it had on my control

Playing football, fell walking and being keen to get involved in so many activities has meant quite a few shoulder, knee, groin, foot and back strains have been treated with cortisone injections which nobody told me raise your blood sugar levels. I’m often trying to remember my medical history during consultations so that I don’t repeat the same mistakes.

  • information about conditions that I’ve been formally diagnosed as having – I have to confess many times I don’t fully understand what’s been diagnosed and feel like I’m being thick.


Patients can often feel a little confused or concerned about hassling already busy practice staff to find information about their health. And yet practices don’t offer the opportunity to access such results online even though they can help so much to reduce these concerns.

My mother-in-law for instance has COPD, Osteo-Arthritis, Type 2 diabetes and is hard of hearing. She’s an incredibly positive person and is very grateful to the NHS and yet when we speak with her, she’ll often share worries such as:

  • confusion over what the Doctor said during a consultation;
  • not hearing from hospitals that her GP has referred her to and wondering if the referral was sent;
  • knowing if and when Specialist Community Nurses will visit and yet having no contact details to get in touch or appointment letters to check.

I’ve always been passionate about being involved in my care and knowing when things are happening. Having online access to my GP record was one way I thought I could do this and yet the GPs seemed to be uneasy about letting this happen. However, the Practice Manager did suggest that I may like to consider joining the surgery’s Patient Participation Group and in 2013, I took the opportunity to join.

Thanks to getting the opportunity to discuss this at the PPG, in November 2014 the practice agreed to let me trial having access to my online patient record and to share my findings and recommendations at the following PPG meeting before it was rolled out across the whole practice.  Now all the patients in that practice can access their online records, and having a patient promoting the benefits of this along with the GPs can make a real difference.

It may not have changed the world but it has certainly made a huge difference to how I manage my own care now, be it just in knowing that my prescription is ready to pick up, viewing and understanding my test results or in being able to check diagnoses.

Benefits of joining your PPG

So if you have ideas on how you’d like to see care improved for people with Diabetes in your practice or you want to understand more about how it ticks I’d recommend asking about joining your PPG.

In addition to being active members of Diabetes UK, these groups are one the main ways that we can learn about, discuss ideas and influence the quality of our local Health Services.

Each GP practice should have a Patient Participation Group. Most are really keen to encourage people with long term conditions to join. You can share your insight, ideas and inspiration to not only improve care within the practice but also influence the decisions of your local Clinical Commissioning Group on the funding and development of new services.

My group, for example meets every three months with the Practice Manager, and often with one of the GPs to:

  • Update us on changes in the practice
  • Test out new ideas that they’re thinking of implementing
  • Listen to new ideas and concerns about our existing services
  • Develop action plans following the annual patient survey

I’ll leave you with a quote from Dr Phil Hammond, GP, writer and broadcaster.

Patients and carers are the smoke alarms for the frontline of the NHS. They are often first to spot poor care and also have great ideas about how to make care better. They need to be involved in decisions not just about their care, but in designing better care for others. Patient Participation Groups are a crucial way of harnessing the voice of the patient in primary care, and have much to contribute in driving up quality.

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