PPI meeting in cockney land

[HOBIE]

I have been invited to patient & public involvement meeting in London in a few weeks time & would like to know if anybody has some things they would like to try and improve. I am quite pleased with my care but i know the last gov have wasted so much money that the future needs looking after.

 

[Caroline]

I'd like my diabetic care improved vastly and I'd like more access to more specialists because my doctor is useless.

 

[HOBIE]

Hi caroline i would like to make a few bullet points (not specific). So if you or anybody have any thing that is wrong with care ? Be gentle 🙄

 

[Northerner]

I think that the issue of education and the provision of the appropriate tools (i.e. test strips) for the newly diagnosed in particular to learn how to manage their diabetes well. People are very motivated when they are first diagnosed so the opportunity should be taken to make sure they learn the lessons from the very beginning. I read far too many stories here and elsewhere of how a person is given the diagnosis then packed off home with a couple of leaflets and an appointment with a nurse in 3 months time. This is nonsense - diabetes is a serious disease so not only should the patient take it seriously, but the health care professionals should too, and not dlegate the responsibility to the heart, kidney, eye and limb surgeons of the future.

Furthermore...if a person is perhaps diagnosed for some time but decides they need to get to grips with their diabetes, then the same education and tools should be given to them too. The phrase 'you don't need to test' should never be uttered to a person with diabetes unless they are happy with their diet and control is stable (day to day, and not just based on an HbA1c).

It's costing everyone a lot of money to try and prevent people developing diabetes, but it is going to cost an awful lot more, and generate for thousands upon thousands of people largely avoidable personal suffering and reduced quality of life unless this issue is tackled now.

 

[Robster65]

Agree with every point there. Emphasis on the education for GPs/nurses so that they're singing from the same hymn sheet. Too many professionals have their own opinion on the condition, which is very often decades out of date and sometimes dangerously wrong.

Also, recognition of the complexities on a day to day basis. Again, the phrase "you're well controlled" is meaningless when you're battling from one hour to the next to maintain a decent BG/HbA1c. Hence the need for test strips ad lib (with coaching on sensible use), rather than a fixed limit to save money.

I second Alan's thoughts on long termers having access to updated information and training.

Also easier access or modified requirements for pumping. Move away from the rigid qualifying criteria and look at each person individually. Guidelines instead of rules.

Thank you for giving us a voice Hobie. Much appreciated.🙂

Rob

 

[Raymond]

I agree with Caroline. GPs are exactly that, GENERAL practitioners and are not specialised. The range of advice I hear people getting is disconcerting and causes confusion, especially to newly diagnosed patients. A realisation that spending in the short term will save in the long term through limiting complications is a must as is the education of GPs. Northener and Robster have hit the nail on the head and seems to be a concern for alot of people.

 

[HOBIE]

Thanks guys will do my best to shake the bush! (Good film with steve mcqueen). 🙂🙂

 

[Caroline]

Right here is my list

more specialised care
more appointments when needed
regular education for the most up to date information
more support, including emotional support when I need it
someone willing to help me with a care plan for me
dietry advice for everyone who wants it
help with an exercise plan that fits round my lifestyle rather than my life fitting round exercise
more help and support for families especially parents and siblings

 

[everydayupsanddowns]

YES to everything (especially strips and proper carb-moderation advice to T2s at Dx).

Also the recent DUK '15 checks' campaign seems relevant. http://www.diabetes.org.uk/About_us...ss-the-UK-at-increased-risk-of-complications/

90% of sight loss due to diabetic retinopathy should be avoidable according to that report 😱

 

[cherrypie]

Hi Hobie,

Some good points already raised.

I would like to ask Health Care Professionals to spend more time with newly diagnosed who fall into depression. A tick box asking are you depressed will not suffice as the wording is not conducive to an answer. The question is asked and a "Yes" or "No" is the answer looked for at this time. Be more subtle and ask more relevant questions.
They also need to ask again at future appointments with the patients as depression can strike at any time with a chronic illness. Depressed people are not very good at admitting how they feel.