Husband of a wife who has had type 1 for 49 years

[oldgreybeard]

My wife has had type 1 for 49 years and until the last few years has been able to enjoy a very full life. We've lived in several places and until our move to Warwickshire she has always been under a consultant but in Warwickshire she only ever gets to see the GP nurse, who is a specialist for diabetes - and epilepsy and asthma and more. It is very difficult to have an in-depth discussion about her condition with someone who is an expert. She is also under a haematology consultant who is ready to talk and test for things haematological. She has developed neuropathy in her lower legs and we have purchased a rollator for her to help because her balance has gone but she also gets exhausted very quickly. Her GP who is fine but difficult to see face to face has apparently decided from a chest x-ray that she may have an enlarged heart which we only discovered by chance when seeing another practice GP, but no follow up. Throughout most of her diabetic life when under a consultant she has not really required much support but listened to encouragement and positive suggestions, now I believe she needs consultant support but the GP practice will not refer how as it's not what they do. Physically she requires in my opinion a wheelchair / mobility scooter to enjoy a fuller life, but psychologically she is not ready for that yet. I feel she is being unsupported. (During the two years of Covid not one contact from the nurse, even though she lives on our street!) I do not want to be too critical of the nurse as she is not paid to be a specialist in all the areas she is expected to be a specialist in, not can she be as current as a consultant is required to be.

 

[helli]

I am sorry to read that your wife is not getting the support you think she requires.
This is not something I have any experience with.
But, I think you will get some great advice if you call the Diabetes UK helpline. Their number is at the top of the page.

 

[Peely66]

This sounds very similar to my experiences. After diagnosis I saw a consultant at a hospital diabetes clinic for many years then at some point in the 90s my care was transferred to my GP and I nver really had an issue with GP being the primary source of support (whilst everything was fine!) but since a move back to where I grew up and a rural location and worries about health I felt I needed more support also I couldn't access the Libre through my GP. I just started asking for that support at my GP and the nurse who was seeing me put a referral through and I was seen fairly promptly. Subsequently I did get missed for the 6 month follow up (who knows what happens with IT systems sometimes) but, as I had a number for the DSN at the hospital I rang them and was seen in a couple of weeks.

I really thought I was going to have to fight for more support and to get the Libre but all it actually took was for me to simply ask.

I don't really understand the GP surgery's response of "it's not what they do". They make referrals for other things don't they?

 

[Robin]

I’m just over the order in Oxfordshire and I was discharged back to my GP for all my care a couple of years after diagnosis, and was only seen by a practice nurse who also did Asthma, travel clinic, etc etc for about 10 years. I asked to be re-referred when I wanted to get the Libre, before GPs were allowed to prescribe it. I made out a case for why I needed to be referred, ie, it was something that the surgery nurse said was beyond her remit, and I got my referral.
I think you need to spell out why you need a referral, and what it is that the hospital will be able to do for your wife that the GP nurse can’t.(another thing that cropped up, for example, was that my GP's nurse wasn't trained in prescribing certain types of more modern insulins, so I'd have needed a referral if I thought that one of those would be more suitable for my needs,)

 

[everydayupsanddowns]

I’m another whose care drifted into GP-only for a few years (I asked to be signed off at the hospital because I was fed up of doubled-up appointments!).

Like @Peely66 and @Robin it was all well and good when things were pottering along, but as soon as I wanted to change insulins the GP-with-a-special-interest said it was a bit out of his level of experience and suggested I went back to the hospital.

Since moving to an insulin pump I now split my care with an annual review/weight/BP/toe tickle at my handy GP surgery, and an annual pump clinic at the hospital.

 

[Lucyr]

If you’re not happy with your current GP surgery can you move to another?