Patients in Wales - need your advice

[Lclays]

Hello

I’d really like some advice please about what is normal in Wales regarding T1 diabetes.

My mother in laws GP are saying they can’t support her with her diabetes, only the hospital can.

She moved house a few years ago and didn’t update her address with the hospital. She assumed because of covid they had stopped her hospital clinics but it turns out they discharged her as a patient. The doctor has referred her back but they are treating her as a new patient and have informed me today they are currently booking appointments for referrals from June 2020.

I told her GP about this today, she said that she would write to them again but wasn’t hopefully it would make a difference. I asked if she could refer us to another clinic but she told me in Wales they couldn’t do that. I asked her what else we could do and she advised me to ring the private hospital.

My mother in laws blood sugar has been very high now since December and she is getting worse (extremely tired, very thirsty and needing to go to the toilet all the time) we will pay if we need to but I’m not sure if what the GP is telling me is correct?

Would it be better to find another surgery that do support diabetics or is this common?

 

[Leadinglights]

I believe there are a few people here who live in Wales but in case they do not respond you could try the Diabetes UK help line in the morning, the number is at the top.

 

[rebrascora]

Hi and welcome.

I am sorry to hear that your mother in law's is struggling with her diabetes management and feeling so unwell and that her support network seems to have been lost. Unfortunately the diabetes clinics are really overwhelmed due to Covid as the virus has created problems for people with diabetes but also triggered new cases, so their workload has increased massively.
It is common for Type 1 diabetics' care to be overseen by a hospital clinic or DSN (Diabetes Specialist Nurse) at the least, particularly if they are having specific problems as GPs have little understanding of managing Type 1. I would certainly not trust a GP to give me advice o my diabetes.

Which insulin's in your M-i-L using and does she carb count and adjust her own doses?

How high is very high?

The hospital clinic should have a helpline. If you ring the hospital switch board they should be able to put you through to it. Usually it is an answering service where you leave details of your name, date of birth and telephone number and the nature of the problem and a DSN will ring you back in a day or two. It would be important to stress that this has been going on for months and give an example of the high readings she is getting.

She is likely to need her insulin increased to bring her levels down but if she has not been shown how to do this safely, then the next best thing she can do in the mean time to reduce her levels is to decrease the amount of carbohydrates she is eating.... So that is not just sugar and cakes and biscuits but also bread and pasta and rice and potatoes and breakfast cereals etc. Reducing portion sizes like just one slice of bread/toast instead of 2 or half the amount of cereal she is having but have some thick Greek style yoghurt with it and a few berries like rasps or strawberries. Making meals based on meat or fish or eggs and/or cheese with vegetables or salad and just a very small amount of potatoes or rice etc. Avoiding any sugary drinks and particularly fruit juice, so mostly plain water or low calorie fizzy drinks or unsweetened flavoured water as that will help to flush the excess glucose out of her system through her kidneys.
She would need to test her levels lots at the same time as there is a risk of her going too low if she has been eating quite a lot of carbs and is on fixed doses of insulin (ie she doesn't carb count).

That is the best I can think of for now. If her levels are very high then she will be at increased risk of a urinary infection so do keep a close eye on her for any signs of confusion or fever.... Obviously she is going to the toilet lots because she is drinking lots due to the thirst but this is all because her body is trying to remove the excess glucose through her urine... so going to the toilet lots is not a sign of an infection in itself.

Really hope that you can get some help soon because really high levels long term are a serious health risk and are obviously also impacting her quality of life and general wellbeing. Please let us know how you get on and if you can supply more information about her current diabetes management, it may help others make appropriate suggestions.

 

[John D M]

Hi Lclays,

I live near Caerphilly and whilst T2 rather than T1, recognise GP practice referral being the access route to consultant review and care. It's probably no surprise that health boards have backlogs but presumably that doesn't detract from their duty of care and hopefully being insistent and maybe, if possible, providing blood glucose data, might help.

It's hard to know what else to do other than trying to be more insistent with the GP practice or maybe trying to escalate via the relevant local health board if your mother is still not getting the care that she needs. This is contact page for my local health board which provides points of contact for raising complaints or concerns: I assume all Wales health boards will have a similar mechanism, so maybe that's an option


If you or your mother are sufficiently concerned, maybe a visit to an A&E department might be the most effective way of getting consultant access quickly.

Sorry I can't offer any better answers
Hope your mother gets what she needs

John

 

[everydayupsanddowns]

Welcome to the forum @Lclays

Sorry to hear about the difficult time your mother in law is having

It certainly seems like the pressure the healthcare system has been under with Covid couldn’t have come at a worse time for her! Especially now that referrals back to hospital clinics are so backed-up

Has she ever been offered a structured education course in diabetes management such as DAFNE? There is a free online equivalent called BERTIE which might really help.

Forum members with T1 also frequently recommend the following two books as helpful reference sources:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - Ignore the title - this book is relevant to people of all ages. (but perhaps ignore the chapter about school!)

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Additionally, if she is struggling with high BG levels, perhaps cautiously using a ‘sick day rules’ protocol might assist in reducing them back towards the recommended range?

Type 1 Sick Day Rules