Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Wednesday, 21 March 2012

Possibly some progress at last!

Went to a meeting of NHS Trust workers about local mental health services. Not many non-nhs peeps came so the docs and admin got embarrassed by lots of questions and 'service user' stories from those of us who had turned up.
(What a joke! They talked and talked about 'breaking down the stigma attached to mental illness', but insist on calling patients and outpatients 'service users' LOL)
Got names, email addys and leaflets. I now have a 24 hr carer's helpline to call, too.

There was also a presentation on a new dementia care unit opened two weeks ago attached to Colchester hospital. They offer lots of things to outpatients, like art & craft, music, gardening, exercise, therapy, etc. But you have to be in the system. You can't self-refer.

This means mum would have to already be under the care of a psychiatrist specialising in dementia. -Which is what I have asked the GP for several times, since July 2010, with no result. I'll chase this, but as I said at the meeting, any mention of the D word will leave her utterly devastated. The last thing we need is a letter coming to her with anything like 'dementia care specialist' written on it.... need to tread carefully.

Did meet one psychoanalyst last year who was insistent that he would tell her she had vascular dementia, that she had a right to be told, regardless of how I think she'll take it, and that it wasn't that bad. WTF?????
I asked if he would put support in place before breaking this news to her. No, he explained, that wasn't what they did there. They don't do support. You need to look to charities for that, really. Bastard.

Didn't take her back to another appointment with him. Got her moved to a lovely female doc, so gentle with her, she loved going. But after the memory testing and final analysis, these appointments came to an end. There does seem to have been a system of 'diagnose, tick a box, then show them the door', which they say this new unit is meant to change....


Blue said...

Needed to gather my 'mental' thoughts before commenting - that's why not on done so on your earlier post.
I am with you 100%.
Having relocated, thought my mental health stuff would travel too - actually worried it would but no.
So no back-up.
Since leaving Oxford this time last year been on my crazy own.
There's been no follow up from old medic services, not even my nice family doctor, all who had new contact details & who knew I had, still have suicidal thoughts - I could now be dead - the system non the wiser.

Angel and Kirby said...

It really appears that they do not care about people!

Sandi McBride said...

You stand your ground Helena! You are so much stronger than you realize! I'm praying for you and your mom

Helena said...

yeah, & compared to what it was like in Kent, the system here is very good.
I am sorry your links and safety nets have been broken. How's your GP? I keep being told everything has to go through the gP initially, so if you don't have a sympathetic one it's hard to get any help from any where else in the system... re follow up, I felt the same way about mum's GP in Kent, who was a good one, all concerned and kind, but no follow up once she'd moved. I guess they just have so many on their books...
If I were you, and if I were up to it, I might write to those people in Oxford and get them to write references or referrals for you. Or just ge tin touch and say hey, I'm not getting the same help here, who do I go to? Seeings as consultants seem to always be going off on conferences and things, they must 'network' and your old people might know someone responsible in your area.

The only way I've tracked down anything about local services was by searching online, googling 'local mental health srvices colchester'... found out what was available, then went to the GP and TOLD her it was there and that I wanted a referral- i.e. psychiatry and art therapy.

I think it's like any public service. If you stay quiet you sink down the pils but if you can rock the boat a bit now and then they might actually move.

I wish I lived nearer or get up to help out in some way, whether it's phone calls or making cakes :)

btw your last sentence, *I would definitely notice as a big blue hole would be left behind*

Helena said...

that should say 'down the pile' not 'down the pils'. definitely don't, don't down the pils!

Blue said...

Thanks Helena for the advice and support, especially as you have so much on your own personal plate @ this time.

Re my GP here, never see the same doctor twice - practice seems to survive on short term locums - they just sign my perscription and send me on my way.
Hate to rock the mental boat as the thought of men in white coats coming to take me away looms big - it nearly came to that last time only my super nice GP and the the intervention of friends who have now cast me off saved the day.
We'll see maybe I'll have a go re getting more support.
Thanks again xxx

roughseasinthemed said...

I see the NHS hasn't changed since I left its employment ten years ago :( The trouble with trying to get meaningful service changes (I know, jargon!!) within the NHS - that are in patients' interests, and what patients want - is that you need an extremely strong manager to pull together patients and clinicians, and get some agreement about changes.

There weren't a lot of us around. And it did my head in too :D That's why I'm no longer there. So I really sympathise with you because I know, even from the inside, how difficult it is to get services in place that are what patients want and for the convenience of patients. I've lost touch with NHS changes, and I didn't work in mental health, so I'm sorry I can't offer any advice.

PALs sounds a good idea though regarding your complaint. They should never have got rid of the Community Health Councils :( There is for too much useless change for change sake in the NHS. Sorry, I'm ranting on your blog :D

Helena said...

I know we're both 'distance' people, not liking phone calls and finding 'meeting up' really nervewracking, but still I wish I lived nearer to you. I'd keep you from the white coats :)

Helena said...

rough seas in the med-


That's ok everyone's welcome to rant away on here LOL

Interesting to hear the inside view.

I suppose it's the size of the organisation and the size of the piles of papework that don't help. Then the number of workers now disillusioned. It must be hard to push for something better when colleagues and those higher up the ladder have grown apathetic.