Psychological help

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trophywench

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Bear with me whilst I try to explain my question. Most of us know it's quite a normal reaction when diagnosed with diabetes to have to also cope with the feeling of anger and there being no answer at all to the question 'Why MEEEEEE?' and the comment I'm sure of most of us also mentally add to that of 'It's just not fair!' followed by a (virtual) stamp of the foot, even though we know very well that doesn't solve our problem since we are no longer aged 3-ish neither can mommy/daddy/someone else more grown up/clever than me solve it for me. I loved my husband; he'd just hug me and not try to make me talk - BUT it is a horrible feeling of being completely alone in the world and so (Oh my God!) I can only possibly absolutely rely on myself with this. Yes, I know I've got this medic and that medic (practically ad infinitum) to (apparently) advise me - but none of them is ME and it's solely ME who has to live with the consequences of what I actually do with that info imparted to me and decide one way or t'other what actions to take - not any of THEM.

I've been there again in some other bits of my life - so where's the psychological help my brain could do with whenever I need it?

This was brought to a head again this morning at a routine committee meeting of the local (prostate) cancer support group my husband and I are both trustees of. Yeah, yeah, so the whole of the committee knows that there are (allegedly) clinical psychologists available to assist us to get our heads round whatever happens to affect us mentally along the way - but not a single one of us has ever been offered this help or informed who to contact or anything informative whatsoever should we find we need it.

So - my question to the forum as a whole is twofold, has anyone got any experience of such a service in operation and if so, how on earth did/do you access it?
 
Paediatrics is different,obviously, but I talk to a clinical psychologist every appointment
 
I live in Derbyshire and there are various services you can access yourself without needing a referral. Talking Mental Health and so on. You could try your GP in the first instance to give you the contacts if you can’t find anything online.
Unfortunately my experience wasn’t good, I wanted them to help me to deal with a particular issue, but because I wasn’t depressed or having a particular meltdown about said issue when the appointment came round, they decided I didn’t need help and signed me off after two sessions. I’ve kept the details of one of them for future reference just in case though.
 
If only GPs were trained to give the news with just a bit of humanity rather than what I got - you are a very bad diabetic take these tablets as ordered, and that was it.
If I had not read Dr Atkins New Diet Revolution quite a few years before and had some idea of what I had been pushed into by the constant insistence on a high carb diet - I might not be here now, to be perfectly honest.
The way many newly diagnosed diabetics are treated is - surely - equivalent to using a hammer on a broken bone - it was bad to start with lets just make it worse and inflict pain whilst doing so.
 
I was offered this support when I was a teen in the paediatric diabetes service. Never as an adult.
 
Well the GP I saw and the consultant and his side kicks, all had empathy, as did my last but one consultant and ditto nurse more recently. But I've certainly seen GPs, pharmacists and other HCPs who don't, along the way. One chap (hardly a kid at 'nearly 82') told us he felt like bashing a hospital nurse within the cancer service locally when she did not seem to grasp whyever a certain test result (which has been increasing every time he's had the test (several times) over the recent months would cause him as much concern as it did. It's perfectly simple - because nobody has yet told him what can be done about it - and now he won't get any more info at all about it until he gets to see the consultant, with whom his appointment will not take place for another however long.
 
My local community health diabetes Team offered me a psychologist but this was before Covid.
 
Well - I managed to get some counselling about 'an ordinary' MH glitch via my GP in the noughties and it was of some assistance - however, they really didn't have much idea about my concurrent probs with my BG seesawing and its contribution to the party - and my GP pre-warned me that they most likely wouldn't, because 'that is a specialism they're unlikely to have studied'.

I just wondered if anyone - adult - on here had ever been offered help WITH that specialism, since nobody's ever said so.
 
I think psych support in adult clinics is improving, but still has a long, long, way to go. And it’s really not well resourced (along with the challenge of actually finding a psychologist who has specialist knowledge of diabetes!). Hopefully this will improve in the future.

But alas yes - like you @trophywench - it’s not something I have ever been offered as a part of my diabetes care.

I did receive (very good) grief counselling. But other MH support, even when I’ve been struggling, has sort of evaporated by the time any reaponse to my enquiry has happened.

It seems to be a service that can only target resources on the most critical cases - and only then if they are able to hang in there and wait patiently, maintaining exactly the same level of urgent need, for the weeks or months before an appointment is available.

This may not always be the case, but it was my experience.
 
trophywench said:
Bear with me whilst I try to explain my question. Most of us know it's quite a normal reaction when diagnosed with diabetes to have to also cope with the feeling of anger and there being no answer at all to the question 'Why MEEEEEE?' and the comment I'm sure of most of us also mentally add to that of 'It's just not fair!' followed by a (virtual) stamp of the foot, even though we know very well that doesn't solve our problem since we are no longer aged 3-ish neither can mommy/daddy/someone else more grown up/clever than me solve it for me. I loved my husband; he'd just hug me and not try to make me talk - BUT it is a horrible feeling of being completely alone in the world and so (Oh my God!) I can only possibly absolutely rely on myself with this. Yes, I know I've got this medic and that medic (practically ad infinitum) to (apparently) advise me - but none of them is ME and it's solely ME who has to live with the consequences of what I actually do with that info imparted to me and decide one way or t'other what actions to take - not any of THEM.

I've been there again in some other bits of my life - so where's the psychological help my brain could do with whenever I need it?

This was brought to a head again this morning at a routine committee meeting of the local (prostate) cancer support group my husband and I are both trustees of. Yeah, yeah, so the whole of the committee knows that there are (allegedly) clinical psychologists available to assist us to get our heads round whatever happens to affect us mentally along the way - but not a single one of us has ever been offered this help or informed who to contact or anything informative whatsoever should we find we need it.

So - my question to the forum as a whole is twofold, has anyone got any experience of such a service in operation and if so, how on earth did/do you access it?
Click to expand...

I get asked by a DSN about my mental health.? Weighing it up. I have no more issues than the average millennial “Joe.”

I don’t have any negative test results of other issues. So count my lucky stars. I can handle my diabetes
& gain credibility ongoing with support with an aging family.
I was raised by the “stiff upper lip” generation. This works for me. Character building stuff.

The challenges change and we adapt. I didn’t pursue what the DSN was probing at.
 
Well I do usually manage to cope so just get over my periods of not feeling I can any more, A sort of toss up between if you want a job done, DIY cos you know you can't rely on anyone else and sod all of 'them' I'll blooming do it meself because nobody cares about me, except me.

Whole thing is bats, isn't it? It's literally a full time job which we have to do for life, with no pay and no time off. And I'd just like a day off!
 
Drummer said:
If only GPs were trained to give the news with just a bit of humanity rather than what I got - you are a very bad diabetic take these tablets as ordered, and that was it.
If I had not read Dr Atkins New Diet Revolution quite a few years before and had some idea of what I had been pushed into by the constant insistence on a high carb diet - I might not be here now, to be perfectly honest.
The way many newly diagnosed diabetics are treated is - surely - equivalent to using a hammer on a broken bone - it was bad to start with lets just make it worse and inflict pain whilst doing so.
Click to expand...
I can empathise with this. My diagnosis came quickly after having to deal with other health matters and it all became very overwhelming. It became easier to manage after a few months. but having to mange it get my HBa1c figure down with little or no support can be stressful. Offered medication but declined in favour of diet & exercise meant no support from the GP...
 
The NHS seems to be about dealing with illness during and after it has wrecked things, looking at symptoms, giving meds, and not about preventative, forward looking measures, avoiding problems and meds where possible. They seem to be pretty good at spotting the obvious (eg broken leg) but much worse at spotting and dealing with the less obvious (eg a broken life, heart, mind), and way way worse at spotting and dealing with things that may blossom into something nasty someway doen the line.

The things you talk about are hard to address and are unlikely to be helped with quick fix medication, so they just don't have the time, money or expertees, training, resouces, you name it.

But worse, to me, is the sometimes sheer lack of information and time to help newly diagnosed patients. Me, I was given no information, a blood testing kit, insulin !! , and that was it. At diagnosis I was completely lost but knew I was on my own, so deciided to deal with it on my own. It makes me a bit of a tough cookie for the doctors, nurses, consultants, but none of them can argue with well researched information and success.

Of course it turned out that their diagnosis was wrong. I was not a type 1 but a type 2 and even that is now being challenged. The insulin did me no favours and could have been disastrous for me. Did they care even when challenged, no!!!

so, like the rest of life...your on your own. You have to manage by yourself and occasionally fight those in the NHS who don't know any better.

It would be so much better if the support was there for those who need it in a timely manner

My personal view is that the NHS philosophy seems to be up-side-down.

Is the NHS the best in the world? I think it was.

It's possibly because it is run and operated by humans. Would AI and robots do better. Hmm unconvinced and yet where these things have crept in they are much more successful (and presumably much less costly?)

However, I mustn't grumble. Without the doctors, nurses, cconsultants expertise I would be dead right now ( not from diabetes Tho, oh I don't know...the insulin...)
 
trophywench said:
And I'd just like a day off!
Click to expand...

Can’t even leave it at home when off on holiday eh? :(

In fact those are times when it can often become even more cantankerous than usual - just when you are wanting some rest and relaxation 😱
 
Those times when I shrug my shoulders and think 'Oh, sod it then, I WILL have (whatever) and just deal with the aftermath thereafter .......' become more frequent as time passes I've found. Yes indeed, of course, it's because I now can, which I couldn't, years ago, but familiarity as my mother and others always told me was before I was diagnosed, often breeds contempt - which is the danger zone and Yes, we know it is - but life will keep happening and cocking up plans, won't it!

I think, but don't know for a fact, that I've found summat, called NHS Mind Matters, which says on the website you can get assistance with all sorts (as you'd expect) but including 'Long Term Health Conditions' so plan is, will ask D clinic next week if they are the place to find help with jolly old Diabetes Distress*, or if not, where.

* No idea whatever if they even call it that now, cos when that was phrased, 20? ish years ago, MH help was a bit easier to get hold of.
 
trophywench said:
Well - I managed to get some counselling about 'an ordinary' MH glitch via my GP in the noughties and it was of some assistance - however, they really didn't have much idea about my concurrent probs with my BG seesawing and its contribution to the party - and my GP pre-warned me that they most likely wouldn't, because 'that is a specialism they're unlikely to have studied'.

I just wondered if anyone - adult - on here had ever been offered help WITH that specialism, since nobody's ever said so.
Click to expand...
Yes I had help offered and I took it.

I talked to my consultant first and he sent a letter to my GP. I then saw my GP (a long way before Covid times) who was amazingly understanding, and I was referred to the local services.



I was initially offered a group session for people dealing with chronic diseases. I didn’t cope with that at all. All their suggestions for solutions were things on my list of problems.
Treat yourself and go out for a meal - Unknown carbs!!
Think about planning a holiday - Makes life even more difficult
At the time I was in the mindset of trying to get perfect results! - I know now that that was a bad plan and was the root of the problem.

I was then offered one-to-one sessions

A varied service but push for what you need.
 
I see it this way. I sort my own life along with supporting vulnerable family members.
There is nothing to “open up about.” I’m pretty sure some of these mental health professionals go home at the end of the day & balance all sorts of misery. Like rowing kids or a failing marriage? Just like anyone who puts a brave face on working for a living.
I once sat in with a close friend years ago in support on a couple of sessions. (They were serious non Diabetic issues including an eating disorder.) She refused to go on the third one. I showed up & made her excuses. Lol, it turned out to be a personal session. But I was given some valuable advice. Ditch the relationship. I never looked back.

I’ve geared my life where the stress is minimal. Or if or when it comes, can be resolved.
I’d settle for a decent Endo that looks at my evidence the “drugs don’t work.” Not exactly true. Just the basal.
Practical, with the hand on the prescription sign off.

Do I need a pump running Novorapid? My “jury” is out on that one. But even my endo won’t play the discussion.
We go through the “motions.” That ends with the disapproval of still not taking statins. & withholding information on why I need them, other than I “could die in ten years.” (This was 15 years ago moving “forward.”)
Cut the bull “dark arts.” I know my stuff. I try to limit these “formalities” to once a year. Keeps the hassle to a minimum.
 
trophywench said:
if they are the place to find help with jolly old Diabetes Distress*, or if not, where.

* No idea whatever if they even call it that now, cos when that was phrased, 20? ish years ago, MH help was a bit easier to get hold of.
Click to expand...

Diabetes distress still definitely the correct term 🙂
 
Yes, burnout is also commonly used. 🙂
 
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