Philosophy of The Big Society

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Saturday, 10 July 2010

Respite-ary spite of bare faced lying and skullthuggery of all sorts

How long it is since 'Steppingstones' rehabiliation and respite care centre was closed...I cannot remember....but would guess around 5 years.

So it has been a 5 year battle...with much bullshitting from the powers that be along the get to the point I got to on Wednesday. That point being, I finally got some respite care. Yep, get the balloons, party poppers and banners out. Houston, we have lift off!!!!

Well, I had lift off :>)

I think the several letters from MP, literally starting from the words "Public Consultation" (which turned out to be a staged one off event in central Bedfordshire... only MH Trust managers and a couple of members of the service user representative group attended - no other invites sent out) might have helped along the way. Those letters and the threat, more than any action taken by a lawyer and mostly a pro-active care co-ordinator who had to find out about the centre in Luton, with minimul support from managment (a certain member of said management insisting there was no such thing as respite care in Bedfordshire and rather grudgingly saying that if the care co-ordinator believed I needed respite to go and find it). Thankfully she did, not long before finding herself another job and I don't blame her. With bosses like that, who needs enemies!!!!!!

Anyway, it may have taken a long time but progress has been made and overall it was what I needed.

The centre itself is modern and not in a clinical, clinking clanking of keys, people ushered to meds, ushered to OT, ushered to meals and then ushered to bed, way. It, has rightly won awards for excellence because it represents valuing patients in a way I have rarely seen in anything provided by MH Trusts before.

It has 3 floors. The bottom one is what I would call The Everyday Floor. Staff Room, Kitchen, TV Lounge, side rooms for visitors and meetings and a couple of bedrooms. I was in one of them. The other 2 floors are for men and women, respectively (so that, I assume the needs of women can be catered for specifically as with the men..I assume, I don't know and didn't ask).

The highlight of my stay has to be the garden. A place in which I spent the biggest part of my waking day. As I wrote to a friend, most of the other part of it spent at 'puffing billy' (no sexual activity took place)....just outside the centre walls. I find it ironic (then I would as a smoker) that in amongst all this anti stigma bollocks that goes have a line of people forced to smoke on the pavement outside an NHS building (which has no name because it doesn't want to bring attention to 'psychiatric references').

I think the song does go "The saddest sight I ever saw was people smoking outside the hospital wall". I am not being pro or anti smoking here. I abstain because I am biased by addiction but there has to be a better way of acknowledging patient needs without them having to pace about outside on a busy road, looking really conspicious. Perhaps the NHS policy is to shame patients into quitting the habit. Believe me it doesn't work!!!! Just give us bells and we can walk around bawling out "unclean" at the top of or voices!!!!

That is my biggest gripe and I know I will always be outnumbered on that one. Mid winter, snow falling,extremeties frozen, I will be out there puffing away.

Back to that glorious garden. Massive it is. Lots of different trees, flowers and plants and wonderful aromas. Slap bank in the middle, most encased in lavendar, is the pond. I spent a fair bit of time playing spot the fish. Was informed there are some but never got to seen them. Can think of worst ways of wasting my time.

I did plenty of reading (something I have struggled with lately) and my cans were rarely off my ears.

There was a bit of a mix up over an OT trip out bowling. I had (whilst taking notes of patient meeting) put my name forward along with 3 others to do this activity. When the time came, the OT person didn't turn up. So I went back to the garden and it was only when I went out for a ciggy, I clocked their car full of other patients. I assumed, based on her blank look when I asked if I could still attend, that people in respite are not allowed to go. Later I spoke with the Staff Nurse because I needed to know what the policy was. The policy is anyone can go but it is a first come, first served basis. Hmmmm.....Not sure if the OT lady had an issue with me (she is also the smoking cessation champion!!!) or just my paranoia but the communication went totally tits up and it left me feeling completely isolated, dejected and paranoid.

After ringing my mate, decided not to just up and leave and their advise was to talk to the OT personage and let them know how it made me feel. I didn't get that decided to leave it be because I do need to use respite care (sure that time will be pre or post Christmas) and should the same thing happen next time, I will challenge them directly and see what the problem with me, if there is one, is.

The other patients were friendly, in their unique ways and I became fond of one person. I will call her 'Rani' (which is not her name) and in spite of the many difficulties she has, came with me to the local shop and said if I forget where it is, she would take me there again. We had brief but warm chats during my stay and when I was waiting for the taxi to bring me home, today, she came out, gave me a warm hug and wished me well. I hugged her back and said I wished her the same and that if she was still there, next time, I look forward to seeing her.
I nearly cried.

The most basic kindnesses get me like that. There are so few of them around these days. It's all top show, no underwear city....and fekk all feelings to show for it.

Time was too short to really bond that much....and I felt a bit like I needed to keep some that people didn't get too attached to me..or vice versa and then having to leave and me dealing with that. It was only respite and, anyway, I know that I can be over-bearing so kept myself low key.

Staff were pretty helpful too. I did struggle around my medication. That was my issue rather than theirs as I don't have a set time for taking them and had to ask..and often I got paranoid and then would get to freaky point before asking. Lesson learnt..particularly as staff nurses made it clear that as long as I stuck within my allowance, when I took my meds was down to me.

My relationship with them grew from minor distrust (because of prior experience of most things MH Trust wise) to respect. I knew the lead STR worker from stay in the old style pyschiatric unit, before acute care become too much like a mini prison style pressure cooker environment and the staff nurses were really good. I felt I was dealing human to human, rather than playing the boss/servant game.

So South Essex Partnership etc etc etc Trust. You do have something that, mostly, works really well and like I say, I am the first the lambaste when all is not well but credit where it is due and I give the respite care place 8/10. If the OT had gone smoothly it would have been a 9....the other 1 point is out of the centre's control because you can't change national policy!!!

Now it is time for me to collapse in heap as my dry disks are playing up....time to sedate myself. It will still hurt but I won't care so much.


  1. Oh I thought you were there til sunday?, Sounds mostly positive which I am pleased about .And that you have a bolt hole now when things get really bad. which is something we all need.
    Glad you didn't tackle the OT as may burn bridges for future stays not that the way you were treated was right.But it was just a test the water trial visit really was;t it?. Take care. S x

  2. No Honey.

    I was going to come home later today but what with me back problem and the heat, thought best get back to Suki, ventilating home and resting (bit of a duff joke that last word..struggling with self to rest).

    Am really twatted off with your MH Trust...although it is acting akin to most MH Trusts. Discharge the patient and blame the patient for the behaviours that go with their illness...all the time deflecting any responsibilities they have under a duty of care.

    It's always about compliant puppies..and that sucks!!!

    You take extra care and should you feel strong enough, write to MP...or anyone with any clout or capacity to shame these bastards into taking proper responsiblity for care delivery xxxx

  3. Comes across as a great respite resource and sanctuary and glad your Care Coordinator helped you find it.

    Respite services shouldn't be kept a secret although from your description the respite home garden is obviously gorgeous and a secret you'd probably keep as long they allow you to come back and chill out there playing spot the fishies when the evil demons are holding a reunion meeting inside your head and the wolves are queuing up outside the front door.

    So well done BLPT/South Essex.

    As for the two teeny-weenie gripes ,the smoking issue is a no brainer. Forcing people to stand outside the front of a building to smoke in full public view is demeaning and creates a bad first impression and may well annoy the neighbours too. It invites negative attention. Surely the garden would be the best place for people to light up.

    The bowling issue was probably down to a mistake but it is important that services understand how mistakes and miscommunication within institutions people are unfamiliar with can make people feel they are being singled out for different treatment and/or feel rejected.

    I grew up in care homes and can relate to the unfortunate situation described here and come on, there may not be a sign above the front door saying 'Respite Home for the Mentally Challenged ' but staff must have some inkling that they are not running a weekend retreat for the over confident and well-balanced. Even great services have room for improvement .

  4. Thanks Norm

    I wonder if there are respite centres in each Trust location but they are like secrets. If so, I don't understand reason behind that...unless Trusts think they are going to get an onslaught of people who have been in acute care and hated it so much they then demand respite????

    I really don't know but I think respite care is one option and one that should be there, across the country.

    Also been thinking about heavy handed approaches of Trusts, which are then followed by them 'washing their hands' of patients.

    It's very much shit or bust and as with respite care..there must be different ways of providing care (dependant on people's needs).

    Possibly laziness, lack of funds and the institutionalisation OF STAFF. lols