An Alternative To My Usual Treatment

[Glenquoich]

I've been bed bound and severely depressed since October. I had a Skype call with my Psychiatrist on Monday and she's suggesting I come back into hospital (Priory Glasgow) to at least keep me safe; try and build a routine; and get some respite from being in a very isolated situation. I agree I need to do something.

I phoned the ward on Friday to find out if they had put in place what I need regarding my gastro condition for my arrival this Tuesday; I'm seeing a dietician in Edinburgh on Monday re my gastro issue so my admission to hospital is scheduled for Tuesday; but the ward had no idea that I was scheduled to come in. I won't be leaving the house until I'm sure they have met my physical needs. They say they'll need to do a risk assessment first because I need a shower with a hosepipe to flush out my lower intestine about 4 times per day.

This delay has me thinking; I've been in this hospital 5 times since 2012. The first time was for addiction (sorted 8 years clean/sober this month). All the other times have been for general psychiatry.

Given that my post TBI condition wasn't recognised until 2017 (33 years post TBI) and it plays a major part in my mental and physical health. Given that there are no staff at this hospital with any Brain Injury experience. Given that I expect nothing other than a slight improvement and some respite and for the effects to last no more than a few months. I am beginning to question my sanity around doing the same thing as I did in 2014/16/17/19 and expecting a different result.

NHS Scotland have made it quite clear that I am not going to be able to access a Neuropsychiatrist (too long since my TBI they tell me) and despite 18 months on the Neuropsychology waiting list, I've been told to expect another 6 months wait for a Neuropsychology assessment. That's all in the hands of the public services ombudsman now and to be honest I'm sick of NHS Scotland's attitude. It's ground me down and if it wasn't for Maytree and the Samaritans, I wouldn't be typing this.

I have health insurance through my wife's employers but there are no private sector Neuropsychiatrists in Scotland. The private sector Clinical Psychologist (with decades of BI experience) I see is adamant that I would benefit from seeing a Neuropsychiatrist.

I'm considering not going into the hospital this week for the 'same old. same old' and looking for some private sector Neuropsychiatric treatment elsewhere in the UK. I've been looking online today at some possibilities with a view to making some phone calls on Monday.

I'm considering contacting the Nightingale in North London on Monday; they seem to have what I need.

Does anyone have any further suggestions regarding other hospitals?

Sorry about the long winded post!

[Phoenix68]

Firstly- what an incredibly strong person you are and congratulations on your 8th anniversary of being sober. All you have gone through is no mean feat!! I’m so glad that you considered going somewhere different, ensuring that they cater for all of your needs and with an actual pathway to help you improve not just the “same old”; that was going to be my suggestion.

When I was looking at the Priory as a potential to help my daughter’s complex ABI & mental health issues we looked at a place in Melton Mowbray (Burton Park and also in Northampton Grafton Manor) but neither was quite suitable.

We also looked at St Andrew’s in Northampton but it didn’t have spaces at the time, and I don’t know how much it is geared to cater for your medical needs.

Now that you have decided to look wider I think there are many other possibilities especially if you consider private healthcare.

Might Headway have any advice for you?

All the best, I really hope you find what you need and keep us posted.

[Glenquoich in reply to Phoenix68]

Thanks, I never thought about asking Headway. It seems quite an obvious port of call, now that you've mentioned it. A bit like when I'm 'hunting' for my toothbrush

[Pairofboots]

As Phoenix68 states, ditto on how far you have come. I don't have experience of recieving the type of service you require, but I have trained along side many staff from Partnership in Care. They are sited throughout the country. I can't say that they can cover all your needs, but I would say that they are worth exploring, you may find somewhere nearer to home. Good luck.

[Glenquoich in reply to Pairofboots]

I had a look at Partnership in Care, I believe they're owned by the Priory group. They were due to open a Brain Injury unit not too far from me but for some reason it didn't happen and the beautiful building remains unoccupied as far as I'm aware.I can only find elderly care online regarding them.

[Pairofboots in reply to Glenquoich]

When I trained with them, that was twelve years back, they were a separate entity. They used to have a full range of services across a range of disciplines. But I guess the Priory might have taken them over. It's a shame, but I suppose nothing stays the same for ever.

[Painting-girl]

I go to the Nightingale to see neuropsychiatrist privately ( originally on insurance) he's been great for me. Online appointments at the moment. Neuropsychiatry is more about drugs than talking - except that it was hugely important for me at the time to see someone who wasn't surprised by the effects of the brain injury - he also pinpointed that I'd had post traumatic amnesia, which no-one else picked up. He referred me to his psychologist, who was good, but just before lockdown with her help I switched to a local neuropsychologist I found online who works in the NHS on brain injury rehabilitation, and has been in really helpful on strategies for managing fatigue (and my general moaning..)

Do you feel that less isolation and rebuilding a routine in the Priory would help you though?

Let us know how you get on?

Jen x

[Glenquoich in reply to Painting-girl]

The Nightingale looks promising if they'll take me.

The problem I've had with general psychiatry over the years is the misdiagnosis, my first breakdown in '93 which was the result of spending nearly decade of 'not feeling right' while carrying this invisible passenger was diagnosed as psychosis and medicated with anti-psychotics. I've then had OCD diagnosed in 2000, I understand I'm a bit fastidious but it's not OCD it's perseverance.I've never seen a psychiatrist who could look at my mental health through the lens of a Brain Injury. The Clinical Psychologist I see agrees. I'm already on meds (Agomelatine, Diazepam, Melatonin) so I think having a Neuropsychiatrist review this would be helpful.

I've no routine at the moment. I have rarely left my bed in 2 months. I'm on my own for long periods of time. I'm in a remote farmhouse. My wife has been away helping my daughter following an accident for the past 3 weeks but when at home my wife is working 16 hour days because of her company's connection with the covid vaccine; she's the one with the high flying career like most of my friends, I'm Mr Left Behind. Mercifully due to the mini lockdown in Scotland my son is home this past week.

I don't know if going back into the Priory for another general mental health programme just for it fall back to where I am would be helpful in the long term. It might even be counter productive. A bit like putting dry clothes on for an hour in the knowledge that the cold wet ones will have to be put back on.

I'm going to make some phone calls tomorrow to see if there's an alternative but I'm also mindful of how draining that gets. I need to find the energy from somewhere to face the 50 mile drive to Edinburgh tomorrow afternoon for a dietician appointment related to my gastro issues.

[Painting-girl in reply to Glenquoich]

Neuropsychiatrist might well be useful then.

Energy issues are a pain, aren't they? Can the GP refer you privately?

Glad you have company at the moment.

I suppose the general mental health thing could work if you used the break to line up your next steps once you come out? But likewise Headway could be helpful to find another option.

Good luck with the dietician, let us know how things go 😊

We were talking about food prep a while back, weren't we? My sister's tip for me, is to prep everything for an all in one meal and put it all in one bag in the freezer. Then just defrost one of the frozen bags the night before to lob into the slow cooker or the oven. It seemed like quite a lot for me to manage at the time - but I think it could work?

Jen 🌸

[Glenquoich in reply to Painting-girl]

Thanks Jen, I'll keep you posted.You're right about the energy issues. If there was a list of BI effects in order of shiteyness then Fatigue would be my top. Second would be anxiety about the energy I have draining away in an instant, which happens with monotonous regularity.

Around food, I have fond memories of the summer of 2015 when I hitched my wagon to my wife's Jason Vale juice diet. I had energy every day for about 2 months until she got bored with it and went back to her normal diet. I was amazed how abnormally normal I felt. Almost like the first time I saw the dyslexia typeface and realised that this is how 'normal' people read.

[Pairofboots in reply to Glenquoich]

Hi again, I have had many, I'll call them discussions, about the difference of brain injury and its symptoms, compared with pure mental health symptoms. I come from a mental health background, I was before my stroke a lead nurse in a large MH London Trust.

It is pointless seeing a generic psychiatrist, in the past I have been referred to these. I was lucky enough that I could explain why they couldn't adequately treat me.

It also has an impact on how other services pigeon hole you. I have experienced this as well with quite appalling outcome (I can blame my ex wife for that, she could never distinguish the difference, therefore didn't when I was admitted to hospital)

I have hopefully helped some general health staff understand the difference.

From reading Jen's comments, she has given some good suggestions. Headway is good at giving advice, and advocating for brain injury survivers. There is a link to contact them at the top of this page.

Keep us updated, take care, Ian

[Painting-girl in reply to Glenquoich]

How're things going this week?

[Glenquoich in reply to Painting-girl]

Hi, I'm not going to get access to a Neuropsychiatrist any time soon, I've been phoning round and they'll only accept a clinician report along with a referral. It seems that the private sector has the same stand as NHS Scotland; it's too long between my TBI and present time, even though my difficulties from my TBI weren't recognised until 2017. I think it will be the Glasgow Priory after all and I'll speak to my Psychiatrist in there and see if she can refer me on to a Neuropsychiatrist, she's actually really nice, possibly even human, so I think she will agree.I managed the exhausting 100 mile round trip to Edinburgh yesterday to see the Dietics Doc, I'm on a FODMAP diet for the next 6 weeks but today with nobody else at home I'm too exhausted to think about packing for hospital. Realistically I wont be ready to leave the house until the weekend.

On the plus side by March 2024 it will have been 40 years since my TBI, that's 40 years without seeing any Neuro specialist after a major brain op. Chances are I'll have achieved a world record and might get to go on that "Record Breakers" show on kid's TV. I've always fancied the thought of getting on the telly.

[Painting-girl in reply to Glenquoich]

Not surprised you're exhausted, I would be too. Shall keep my fingers crossed for you, that the diet works, and that you get a good break to reset yourself, and get a helpful referral ( though that would be some record!) 😊👍

[Painting-girl]

Totally agree about the energy thing - and I think it's the hardest to explain to anyone too - it's like a switch flipping for me, now it's not constant, one minute ok, the next on energy drain because I haven't taken a break early enough to pre-empt it...

Wonder if my neuropsychiatrist is right and it will eventually turn out to be the same root cause as CFS/ ME? It is weird that it occurs across all severities of TBI - as my neuropsychologist keeps having to remind me. Can't resist the selfish thought that long Covid might provoke more research . 😊

Funnily enough, I can remember being super healthy on (bizzarely) a cook from scratch Tesco online diet my son and I did, before he got his own place. He pointed out later it was very low on sulphites - but my sulphite intolerance wasn't diagnosed until it escalated to anaphylactic reactions....

Hope the phonecalls bear fruit tomorrow.

Jen x