Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care? It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.
Here are some ideas I had:
- Get rid of transition!I have yet to meet a person with type 1 who has said that they prefer the adult diabetes system to paediatric care. Sure I have heard all the explanations about what’s wrong with the patient who doesn’t transition well but I wonder whether some of it isn’t more about what’s wrong with the adult system. Paeds is generally much more supportive, they see diabetes in a family context and they are (at least for now) very much type 1 focused. When you are turfed into the adult system, you’re a minority “disease”group over run by much older people and much of the system seems judgemental rather than supportive. Turf the artificial peadiatric/adult distinction (I mean shouldn’t hormone doctors be ok with treating kids, adolescents and adults) and establish type 1 centres of excellence. I can see these being popular in the public and private sectors.
- BreakDown Speciality Silos Time and again, sourcing medical and allied health practitioners outside of endocrinology who have even a rudimentary understanding of type 1 diabetes is well nigh impossible. If care was patient-centric I wouldn’t have to manage the ignorance of well-meaning but diabetes ignorant health care professionals who operate outside of the diabetes sphere.If we could link all medical health practitioners with the type 1 centres of excellence such that if you need a physio, speech pathologist, oncologist or psychologist then they will be able to treat you adequately. Having to explain that you didn’t grow out of your “juvenile diabetes” or explaining that you’re not a “very bad” diabetic to have been “put on” an insulin pump is wearying and often lack of knowledge of diabetes can have deleterious health effects, e.g. GPs and physios telling type 1s that a steroid shot won’t affect their blood sugars! I knew from chatting with other pwd that steroids are the devils work with control but many HCPs don’t know that.
- Accept Permanent ReferralsThis and other bureaucratic nightmares are a pain in the neck. I have diabetes, have had it and will have it all my life. Wasting my time and money to visit a GP to get them to refer me to the ophthalmologist that has been treating me for years (and I’ve seen far more often than the GP) is just a useless waste of time. Bureaucracy, you can fix this up, doctors have a financial incentive not to accept the permanent referrals but paying for GP visits to get referrals is a waste of money, Medicare just fix it. NB Doctors, patient groups would support you to remove the financial deceptive to accepting permanent referrals.
- Move out of the 1950s!There was a really interesting dichotomy around technology at the conference. Those of us with diabetes are all tweeting, and excited about the new technology available to help us manage diabetes. The sessions about doctors using technology contained A LOT of excuses around “problems with technology”.Here’s just one little thing though. If I want to communicate with a doctor about my health using email, surely I should be able to do so. That decision should be between me and my doctor and some doctors do communicate that way but there’s huge kerfuffle about privacy issues such that most doctors won’t use electronic communication. Unbelievably they still use faxes!!
- Make Tools Accessible to PatientsI love that Abbott made their Freestyle Libre available directly to patients. I didn’t have to see a HCP and get their permission to use this device. Not only does this give me more power and not waste HCP’s time, but it allows me access to medical devices much more quickly. If we’re serious about patient-centred care then it’s the patient who should be choosing the tools not the HCP!
That’s it for a start on what I imagine patient-centred diabetes care would actually look like. I’d love to hear more ideas about what you imagine patient-centred care would look like.