Patient edication

[Bittebitt]

In Norway, where I live, the health care system offers patient education courses to many different chronic diagnoses. E.g PMR/GCA. YOU only pay a small fee, and you can take your partner or other next of kin with you. Some places the courses last for five days, other places for a couple of days. Very useful. The courses are led by health personell, and specially educated patients also take part. Do you have anything like this in other countries?

[PMRpro Ambassador]

In some places in the UK there are what are called "Expert patient programmes" which are designed to teach the patient how to manage their illness better:

patient.info/doctor/expert-...

is a page aimed at healthcare professionals telling them about the concept.

selfmanagementuk.org/

is the website of the company that provides the service

sussexcommunity.nhs.uk/serv...

is an example of a local health authority website offering the service.

Some time ago I was asked by one of the top UK researchers in PMR/GCA if I thought an expert patient programme would be helpful and we discussed the idea. Unfortunately recent research has shown that expert patients tend to still run up against healthcare professionals who feel threatened - and some patients even felt victimised for knowing more about their illness than the nurse in A&E! Diabetics had had their care plans ignored and their equipment taken away - so they couldn't self-monitor and self medicate as they had been taught to reduce the need for hospitalisation. I'm not saying that is a general situation but certainly there are many doctors who are very anti any concept of the patient being given any autonomy.

To some extent, the work done on the forums is similar - it is just we don't have official approval!

[Bittebitt in reply to PMRpro]

Serms that we are lucky in Norway, then. These courses are supported by the state, and they are also regarded as a way to get the medical expenditures down. A well informed patient is less inclined to use the health care system unnecessarily, and such a course makes the patient more confident and, hopefully, makes her feel much less frigjtened. But this id Norway. I guess there are many other fine ways in other countries. You are doing a VERY good job here on this forum. I have read a lot here, and I give you a whole hearted credit for the job you are doing and for your knowledge and pedagogic skills👍👍👍

Not to forget the way you give comfort to scared patients!

[PMRpro Ambassador in reply to Bittebitt]

These courses I gave the links for are free at point of receipt I think - like everything in the NHS (except prescriptions) - but they won't be available everywhere and a lot of patients won't be aware of them.

Thank you - never thought of it as pedagogic skills! I always swore I didn't want to be a teacher - I came from a family of teachers (not my parents, multiple aunts) and it was awful!!!!!

[Bittebitt in reply to PMRpro]

Hi hi PmrPro😊Whether you like the expression "pedagogic skills"or not, you are very good at explaining things for us. I hope you excuse me. I sometimes struggle to find the right words, as my daily language is Norwegian😁

[PMRpro Ambassador in reply to Bittebitt]

Hehe - your English is better than a lot of native speakers can offer! I know plenty who have no idea what pedagogic means...

[SheffieldJane]

A lot that is enlightened comes from your neck of the woods, Bittebitt!

[CloudGazer6]

There are also several other types of patient education and collaboration schemes in the UK apart from the Expert Patient Programmes (EPP). The very effective NHS national schemes for diabetes, for example, include the DAFNE programme for people with Type 1 diabetes and the DESMOND programme for people who have Type 2 diabetes. These are standardised and evaluated free NHS education courses with clinical follow up sessions and ongoing clinical care throughout the UK, designed to increase self-management skills and reduce hospital admissions and complications, where possible.

Other conditions such as COPD or cardiac conditions also have nationally rolled out programmes within NHS settings. Courses and groups are also run for pain management, cystic fibrosis patients and many other conditions, however these may have local variation and are highly dependent on a hospital or health region deciding that funding is important - so the provision is very variable. Individual clinics or health trusts may also decide on a particular priority, such as oncology, chronic fatigue, or sleep disorders. If only more clinical teams would decide to do this and evaluate the programmes then more education and support might be available, tailored specifically to individual conditions.

[HeronNS]

In Nova Scotia, Canada, I attended a two part (each session 2 hours) workshop on osteoporosis. Parts were excellent, others not so much. An elderly man I know who has multiple health issues including PMR and diabetes has been attending an eight week session to help him get exercising again (he has a pacemaker). His wife was able to attend only the first session with him, the introductory one, mostly because of lack of space, I think. Both clinics I know about are conducted by health specialists. I had an eight month wait to get in, although on the plus side they livestreamed the sessions to some rural areas as well. My friend had to wait a few months, two or three I think. There are community health teams which conduct various free programs on different issues, usually for how to live with arthritis, diabetes, or mental health issues, I think. cdha.nshealth.ca/community-...

[Judigardener]

I wish!

[Doralouise77]

Well I'm not aware of anything where I live (Ontario, Canada) as far as PMR that's for sure, nobody even knows what it is lol but I think there are classes got things like arthritis, post heart attack, stroke.... I did go though to a 6 week course on how to cope living with chronic illness. It was very general in its approach but for the weeks I was attending I did feel and do better. There was a motivational component as you were sent home with "homework" that you reported back with. You were also partnered with someone in the group with whom you would touch base with during the week to help you reach whatever goal or task you were working on. I am very ill at the moment but know I would do better if someone else was involved to help motivate me. I think it's definitely something the health care system should consider.

Cheers