Sunday, January 28, 2007

The Government Has Mr Mans Axe

“Hope things are ok Mr Mans Wife, things are very quiet on here at the mo. Hope things are going good”
Slurry from Surrey
Slurry, thank you for your concern for our welfare due to my lack of posts recently; I really appreciate it. Sorry for not updating my blog sooner.

I hope you don’t mind but I have decided to write my reply as a post in case others have been wondering why things have been so quiet on here recently as well.

Things have been ticking along quite nicely, thank you for asking. No major upsets (until last night, which I will come to shortly), but although Mr Mans concentration has improved greatly since changing the Risperdal to Abilify, his anxiety has worsened, so as usual it’s a balancing act, getting used to coping with a different set of problems. He was a great help to me while my own symptoms were bad though, and his confidence in cooking microwave dinners is growing!

I did start writing a post to follow on from where I last left off, just after Mr Mans first hospital admission, but I kind of got “stuck”. Obviously it’s not “writers block” in the traditional sense of the word as I don’t need a great deal of imagination to simply retell real life events, but I struggle in other ways. Although I have received the compliment of having my writing described as being “eloquent” I really feel that my amateur efforts don't always do our experiences justice, and I struggle to know how to even put my own feelings into words. I also struggle to know what to include and what to leave out, and to remember the order of events. Hopefully I’ll get back to finishing that post soon though.

In the mean time I telephoned Mr Mans respite home this weekend to book him in for a couple of nights in March…

Some time last year we received a letter explaining that due to cutbacks Mr Mans respite home may be closing. I’ve been expecting to receive another letter to confirm whether this is to be the case or not, but have heard nothing. Last week I bumped into a lady in town who I know uses the same respite home, and she told me that it is to stay open, although some services have changed. I was relieved. However, when I phoned this weekend to book Mr Man a bed for a couple of nights, it was only after I specifically asked how things would change for Mr Man that I was told that each person is now only allowed to have two respite breaks a year, instead of the previous three. (This is where I start to struggle with being eloquent)

Before Mr Mans first stay at the respite home he was assessed, and it was decided that he could only stay for a maximum of three nights in a row. He didn’t often stay for the maximum stay allowed, only perhaps in the summer, and the other two breaks he would stay for one or two nights while I got away for a couple of days. As I’ve said previously, I don’t actually need a break from Mr Man, but everyone needs a break away from home and the realities of life now and again. Mr Man wouldn’t be able to cope with coming with me on a holiday, so my only choice is to leave him in respite while I get away. We’re talking about maybe six nights in a whole year, broken up into three mini breaks. Now I can only have two mini breaks a year.

The thing is though, it’s not like I even ever have an actual holiday. I use those respite breaks to be able to go to religious conventions and assemblies three times a year, which are very important to me, so I spend each day concentrating on the program, and then by evening I’m exhausted. Still, it’s a change of scenery and I wouldn’t miss a convention just to go and picnic on a British beach somewhere (and lets face it, there’s no time for me to actually leave the country and come back again), but I do wish I could have a proper holiday sometimes. This particular time in March I was planning to visit some places of interest on one day, and go to the assembly the next, and that is the closest I was going to get to a holiday for the first time since 2003.

I cancelled the two nights I had just booked, and when I put the phone down I started to cry. Mr Man feels so guilty, but I tried to explain to him that it’s not his fault; he can’t help it.

As well as the obvious disappointment I’m angry that they didn’t write to me to let me know what was happening. I asked the brainless Jim about this (that dozy bloke who is supposed to be Mr Mans care worker in the respite home), and he said to me: “Well because [Mr Man] is doing so well, we thought it best not to phone because it’s not always a good thing to remind people that they’re in need of services”.

Oh really? Well don’t worry about that mate; we still have the memory of Mr Mans two month long relapse after being left alone for two nights* to remind us that he is still in need of services. And weren’t you the one who said that Mr Mans respite breaks are for my benefit, so that I can get a break? Didn't you think I needed to know that these services were being reduced? And when exactly was the last time I had a carers assessment to see if my needs are being met? And who exactly told you that Mr Man was doing “so well”? Mark, Mr Mans CPN, the eternal optimist who thinks everything is fine as long as Mr Man hasn’t chopped his own head off, and who hasn’t actually seen Mr Man since November? How the hell would he know how Mr Man is doing? Mr Man gave up telling him how he feels months ago.

Still, he really hasn’t chopped off his own head, has he? So I suppose things really are fine. Or maybe it's just because the government has his axe at the moment.

*Due to lack of beds in the respite home, Mr Man had to stay at home on his own for two nights while I went into hospital for an operation in August.


slurry from surrey said...

Really pleased to hear tings are going ok, you must be so angry about the respite place, I sure would be, i show how much it vaires area to area, I tend to get 2 weeks every 3 months and its very very good, they have tried to get me to move in as a full time resident, but i dont think so!! I have a CPN who sounds abit like MR Man's and i have just requested a change, as i cant even speak to the man.

Mr Mans Wife said...

Yes, we have requested a change in CPN as well, but have heard nothing since. It's a shame because the one Mr Man had before was quite nice, but he had a job change so he ended up with this one instead. And the funny thing is, Mr Man didn't like this one from the start, but I kept saying "Give him a chance, it's just 'cos you're not used to him yet" but it turns out he was right - as he so often is.

I hope you get a nice CPN soon :)

Wow, 2 weeks every 3 months! I'd hate to leave Mr Man for that long but even a few days every 3 months would be brilliant! Not quite long enough to visit my family in Norway, but it's long enough to go to Pontins for a few days!

slurry from surrey said...

samYes I had a great CPN before this one, and as what happens to all the good ones they get snapped up in to better jobs. Have you thought about contacting the trusts PALs dept they seam to get things sorted very quickly.
Yeah i can understand why you need just a few days every now and then, for me it is respite away from the local shrink and CMHT as they have nothing to do with me whilst in there, we genrally have a good time and have come out with some great mates.

Mr Mans Wife said...

Thanks Slurry, as usual it seems that I am completely unaware of services available to us! After searching for PALS on Google I have found that we have a PALS office just up the road from us, so thank you very much for the advice! Mr Mans Psychiatrist is usually very good though, and I'm sure she will find Mr Man a suitable CPN as soon as there is one available.

It sounds like you have a great time when you go into respite. I wish I could say the same for Mr Man! He tends to stay in his room as much as possible until it's time to go home again!

Anonymous said...

Great to have you back posting. As usual powerful stuff generating lots of food for thought. Almost ashamed to admit it but there are no comparable respite services in this area.

Very best wishes


Mr Mans Wife said...

Thanks OSB. I suppose I should be grateful for the limited services that we do have; I was told that 3 respite homes have closed completely in our area.

You know, I was talking to my friends 15 year old sister today, and when I told her about the cut backs in respite breaks she totally understood the impact of that straight away, and was outraged (mainly because she always wants me to go on holiday with them and I always have to say no, but that's not the point). If a 15 year old girl can understand the importance of these breaks, how come the "important" people who decide on these closures can't?

slurry from surrey said...

Well the powers that be think they are doing the right thing, whilst infact they are doing so much harm, they think its care in the community and insistutions like this should be closed down. 25 yrs ago there was 700 beds for mental health paitents in north surrey alone, now there is 34 and they are thinking of cutting back a further 12 of these beds, what i wonder is what has happened to all these people with mental health problems deemed to be needing long term care? yes a few have died but they are replaced by the younger generation, and according to all sources serious mental illness is riseing, but yet they are still cutting back, there are a few care homes round here which hold about 7 people, everyone else is left to fend for themselfs, with a fortnightly 20 min vist from a CPN or god forbid a socail worker, it often doesnt work out but there are no reasorces or funding to anything about it. If they are lucky to have relatives to care and support them thats great but they are providing the service that the mental health teams should, the CMHT do it 9-5 carers are 24/7 and you need a break, it should be more freely avilible.
Have you heard of a respite place in the new forrest called foresters ran by rethink, there you and MrMan have have a holiday they are very good and you get to have time out as you can join in the activitys or not and there are people there to give you a break, I know it sounds abit lousey but it is good esp the spa!! sorry for the long post but its something i feel strongly about.


Mr Mans Wife said...

Slurry, don’t you dare apologise for the length of your post! You make very valid points.

Jim, from the respite home, put it to me this way: “Some people just need a little bit of a nudge to stand on their own two feet”. Still, there’s a big difference between a gentle nudge and violent shove.

Where do all these patients go? Some of them no doubt end up living on the street because they’re unable to cope with the responsibilities of life and end up homeless. Others will end up in prison as without proper care and medication they’ll end up attacking someone with the proverbial axe whilst in a state of psychosis (hmm don’t we keep hearing that prisons are full?). And others will thankfully be taken care of by their families, who in turn will end up having nervous breakdowns and will be in need of the very services that have been denied their loved ones for so long.

Care in the community? The trouble is; there is no community. People hardly know their other family members living in the same house, let alone people living next door, over the road or up the street. And what good would it do anyway, when there is still so much stigma attached to mental illness? This is where respite homes or supported accommodation are very useful because the residents make up their own community and look out for each other, in much the same way as they do in hospital. They feel secure knowing that no one in their own community will judge them.

Thanks for the information on Foresters. I may look into that, although Mr Man isn’t called Mr Grumpy for nothing! So I’m not sure if I’ll manage to get him to come with me. Thanks for telling me about it though.

slurry said...

Well looks like i have got rid of my cpn, and seams not to be replaced, i cant say im to sad about it (jumps for joy) but means my care management will go back to my shrink, in other words nothing will get done, but there are somethings on the back burner which none of them know about, so happyness might be just around the corner!! on a bad note tho, I broke my leg over the weekend, so not to chuffed about that, ho hum

Mr Mans Wife said...

Ooh ouch! How did you do that?

Congratulations on ditching the CPN! Mr Mans CPN phoned the other day to arrange an appointment but we missed his call. I haven't bothered to ring him back but we see Mr Mans Psychiatrist on Friday so we'll ask her for a different one again and hopefully they'll have someone available this time.

I'm curious to know what's cooking on your back burner! Come on Slurry, don't keep us in suspense!

slurry said...

To tell or not to tell, that is the question!!
I broke my leg, playing sport, its in a half cast at the mo to allow for swelling, best thing is now to rest it for a few days, keep out the way of the mental health team, whilst laughing at them behind their backs, knowing one day soon i shall be free from that particular lot, sadly not from mental health all together, but away from them, thats what matters

Angela said...

It is worrying and disapointing, but not surprising, to hear about the cutbacks in an already limited respite service. Unfortunatly it's being seen in all areas of health care, not jsut the mental health setting.

For example, I had a placement in a children's hospice that offered respite and end of life care. They had a lovely, recently built facility that offered residential and day care. The respite care was 2 weeks per year, whilst that's a lot more than you are being offered it is still wholly inadequate. The day care service was no longer offered because of funding/staffing issues. Most of this purpose built facility wasn't being used and during my placement they were making staff redundant, including the music therapist and the multi faith chaplain. The highly paid managers and directors kept their jobs of course.

Your description of Mark makes me laugh. I can just picture the type in my head, he sounds a lot like the support worker a friend of mine has!

It's a frustrating situation and I wish I had some helpful suggestions to make. In the absence of that, have a cookie.

Mr Mans Wife said...

Your cookie comment made me laugh! I think I’m going to need a bucket of them though. *Mr Mans Wife offers one to Angela*

That’s awful. There can’t be any other time in life when a person needs support like when a child is sick and dying. How disgusting that the managers and directors kept their jobs when the ones who really make a difference for these families are being let go. What exactly are they going to manage/direct when there are no services left?

Mr Mans Wife said...

Slurry, whatever the future has in store for you I hope it's a success and makes you happy. Best wishes to you, and I hope the leg mends soon!