'Being Boring' .....and other facts of life

Know I haven't posted for ages....sometimes I would rather not and so I didn't. Is not like any cake is going to spoil because am not around watching the oven....Lives go on (in their varying ways) and such is how it is.

Blogging today cos I feel like it but can't see it being an everyday thing....it gets pretty monot after a while and I really can't be doing with flowering myself up just to get some attention. I know cynical hag...so what?

I gather (although was not party to any of it...not doing the Twitter thing) that Stephen Fry got a strop on cos somebody made a comment that his work was getting a bit boring.

He was threatening to leave Twitter etc. I found that quite pathetic really..and yeah I know I am not Mr Fry's biggest fan but he is not a child. Someone commented to me that it doesn't matter what walk of life you are in, if you have mental illness then you should be shown compassion (as in I was not showing him compassion). I actually think that it is more to do with dramatics and over-reacting than anything else. Sure the Fry fanatics will be seeing me as Satan's sister but it is about context and it is about what is actually going on in people's lives rather than 1 non flattering comment in an otherwise adoring following. Perhaps he is so cossetted and has got to a point where he believes all he should get is fawning but I don't think that does anyone any favours really.

In fact, I think I should thank those who have taken time to come on my blog and had a real pop (even though some were as true to themselves as Britain's commitment to peace keeping in the world).

I don't actually think it is okay to be spiteful and venal but it doesn't hurt to reality check (even when you have an illness...maybe it is more important to reality check when you have an illness because there is a vast amount of fakery in this world).

Bottom line is, I think, Stephen Fry acted like a big girl's blouse but I understand all is fine in his Twitter camp...apologies and group hugs abounded..and he can carry on Twittering to his heart's content and those who find him a bit boring will, no doubt, steer clear. After all who would want to feel responsible for the man's departure from that arena????

And so my life carries on ('girl interrupted' enough by such revelations to make comment on her own blog). Still waiting for the local MH Trust to make a decision on which care home it wants to cough up any dosh to send Dad to. The preferred one (by all) having raised it's charges and budget holders recoiling at that face. That situation has rattled on for about a month now.

Dad doesn't want to see me because I really am a She Devil who dared to agree with the shrink that he should try and do a few things (OT..such as it is) and coming out for walks with me. First and last rule of being a daughter - when father is ill: You will be compromised to the max!!!! Actually, that is my interpretation. Dad is just saying he is too ill to see me. Could be paranoia on my part but I know Dad and I know he can sulk for the world when he feels he has been treated unjustly (well, everyone can but it doesn't solve anything....except maybe to serve some sense of personal affrontage).

I have made an appointment to talk to his shrink on Thursday...about compromised positions and to ask him if he really knows what the heck is going on (treatment, longer term aims) and my peripheral role as it is).

I have been advised that a Direct Payment is the next step for me and positive noises are being fed back about chances of getting it. I am not going to hold my breath. Am on 3rd care co-ordinator, this year. But if the application is made and successful, I might just get that consistency I need in my care plan...and life. That is consistency outside of myself...which is still a work in progress.

The big plus is the time I am spending with my daughter. We have a once a week (sometimes twice) time that is ours and it is great. Last week we went shopping in Milton Keynes and yesterday we went swimming.

There's still a bloody great hole in my life but accept that it will be what it will be, whilst I carry on carrying on and until such time as. In the meantime, I do what I can when I can and when I can't I don't.

Non revelationary rallying cries from here..nothing to print in a recovery newsletter. It's maintenance as usual!!

There is no normal service to resume

Having felt slight reassurance from Minister for Care Services who, supposedly, stated that DLA payments were not under threat of being axed, it now seems that there has been a complete change around with charities claiming it is too late to save DLA and government murmerings that is more likey that DLA will have to be reformed (away).

What with time of year, overall feelings of debilitation and lack of optimism about the future of this country (under any government) plus strange goings on at 'review meeting' with Dad and visit to back consultant with friend (and the case of the disappearing and reappearing cyst and her being advised by said consultant that the best thing she can do is pray)...feel like I am living in the Twighlight Zone.

Just waiting for the next punch in the stomach.

Not much more to add. C'est la shitty vie.

Cannot be doing with Autumn...because

Winter is just around the corner!!!!!

It hit me today. The sudden flatness....the grey dankness of it all.

2 months to Christmas which I am cancelling on the grounds of having not much to celebrate. Real bah humbug stuff.

Managed a walk to local shops and back but felt bleugh. Spent most of day on facebook playing at Mafia. Encitment to violence? Nah? Just something more interesting than nothing to do.

Visited care home with Dad on Friday. Wasn't a good day for doing that because the joys of womanhood arrived and had the dizzy wizzy woo woos. Panick attacked (most of the way) as I walked to town. Don't know how I managed to interact without being the obvious loony daughter. Dad was outranking me on that score by telling everyone he wanted to die, whilst I tried to say that things could get better for him in the home.

It was very nice actually. Have heard such horror stories but this is a small place....bit like a guest house. Houses 6 residents and all the residents there (and staff) are female (something, I think, Dad would be comfortable with...he prefers female company to males). Dad was pre-occupied with saying how his life had fallen apart and he can't get it back together. Hmmm.

Actually, am emotionally barren now...except deeper stuff that wells up every so often and pours out (in private).

When daughter and me visited him again Friday night and he was telling us how he couldn't understand where it all went wrong and how he got to this...I felt compromised. I am trying to help him...but I can't. He is so gone and I can't bring him back. I tried to explain where I think the turn happened but I couldn't explain why (that is somewhere deep inside him..or deep enough for him not to want to share it).

Em and me both feel and shared, with him, our view that the care home seems the best of not many options and compared to other homes would seem to suit his needs, he took some kind of umbridge because he told us it was time for us to go.

He does act like a petulant or sulky child, at times. Is very frustrating and I don't know how I haven't just screamed my head off but somehow I know that is futile. Have felt it best to try to stay calm and then come home and collapse in drained heap.

I don't know whether he will agree to go in the home but I think and feel that if he goes back to his flat it won't be long before he tries to take his life again. Maybe, people think that is over-reacting but I don't want services to take that chance with him.

Oh dear. Roll on spring and hopefully some resolve of this dire situation.

Have planned to go and stay with friends in Derbyshire at end of October. Not in right place to be excited about it but feel the time away might help a bit. Friends there are nurturing and undemanding. Ho hum!

Not merging but drowning

Actually, the title is not as close to what is happening as could be but is more relevant to what I think is happening to patients whilst the merger/take-over/whatever people choose to call it of Beds and Luton MH Partnerships goes ahead.

I have, as commented in response to Lareve, heard murmurs of massive savings (double figure millions of pounds) needed to be done by my local MH Trust in order to be fit for purpose of merger and gaining Foundation Status.

I had also heard that the merger was imminent but haven't been informed of anything definate, as yet. I am a bit out of touch so it could have already happened.

Makes lastest communication back from MP more poignant to me. He has written to Director of local Social Services asking what can be done for me in regards to my particular needs. That was good of him (and not a hint of sarcasm) because he has been the only person (in postion to do much of anything) that has stuck by me.

With STR worker on extended sick leave and my gut feeling is they are not going to return (and if they don't, they won't be replaced)...and the change-overs of care co-ordinators... and missing (never actually arrived) care support worker, I have no faith that my care needs will be met (with much consistency) by MH services. It would be nice to think that they could but you gotta live in the real world.

So an assessment (by Social Services) for a Direct Payment..and more so if it provides me with someone to escort me to such things as swimming... could fill the gap that the unmet care plan has left. The Direct Payment could provide the person and a set amount of their time and I could pay for transport. Sounds like a fair deal to me. Not sure Social Services will see it that way but I have a dream. Ha! ha!

In spite of the fact that there is minimul support going on here, I think I am doing well not to have lost plot entirely. I have walked to town and back, by myself, a couple of times, and had lunch in a cafe, by myself, and it felt okay. The problem is the blips in between. Like I have a good day and mission accomplished and then go wobbly again (where I am fighting demons alone and losing). Such is the nature of the beast...but no one could, justifiably, accuse me of not trying.

Am keeping away from the co-dependancy relationship that had another violent eruption a few weeks back. Am clocking that habit and that type of co-dependancy break down any chances of having healthier relationships with others as well as myself (not that I am looking for romance nor want it right now)..and is not like I didn't know better or don't. Is just so hard, when you are on your own, not to cave in and that is down to my own weakness as well as others.

As an only child, I should be used to loneliness but the events of my life (personal and illness related) have left me feeling lonelier than ever. I acknowledge that..as pragmatically as I can....but it still hurts.

And I certainly don't need or want a network of people running around doing for me...just some consistency from those whose job it is to provide support...to help me to branch out and maybe gain some confidence in doing things that are good for me. I like the idea of being part of a swimming club but there is no way I could go in cold...particularly as I am going to come out cold (literally not metaphorically..as in from the water). Hmmm...I am certainly prepared to meet services half way. After all, at present, it is me doing all the work. Just can't help visualising it all going tits akimbo again.

Still, I am alive and not crawling around the floor, wailing. I consider that a plus.

For now, doing me the best to hold on to what ground I have and make the best of the good days.

Latest email from benefits and work

Dear Mandy,

In what may represent a dramatic victory for campaigners, Care Services Minister Phil Hope yesterday told a reporter at the Labour Party conference that DLA is not under threat by the care green paper.

According to the Disability Now website, Phil Hope, when asked if he would abolish DLA after the election, replied:

“No. All the models that we have done have not included DLA. But if people were to make a case to integrate DLA into a comprehensive system, then I'm very happy to hear that case and have those arguments.

"DLA is not under threat and people can be very happy".

For more details and our reaction, visit: www.benefitsandwork.co.uk/news/latest-news/1110-dla-is-not-under-threat----be-very-happy-says-government-minister

We know that some people will claim that the minister’s comments are evidence that campaigning to save DLA was unnecessary. It’s a claim, however, that can only be be made by ignoring such as the following.

1 Earlier this month the DWP press office said in relation to whether DLA would be scrapped: “It depends on what people say in the consultation. We need to see what people say when they respond.”

2 The same minister who is now saying DLA is not under threat wrote to MEP Liz Lynne just a fortnight ago stating that: “. . . this is a consultation exercise and no final decisions have been made about which disability benefits might be involved, or how they would be affected.”

3 The same minister also refused to rule out the possibility of DLA being axed in an interview earlier this month with Disability Now.

4 Last month CPAG claimed that it had received assurances from ‘senior sources’ at the DWP that DLA was not under threat. Just four days later CPAG revealed that it had “subsequently been contacted by the DWP who have said that no decisions have been taken as to the future of DLA whilst the consultation is ongoing.” CPAG then went off to lobby the Department of Health on the issue.

5 For almost two months national charities such as the MS Society have tried, but failed, to get clarification from the government as to whether DLA would be affected by the care green paper.

6 Just last week, David Behan, the Director General of Social Care at the Department of Health, published a blog post on the Big Care Debate website clearly trying to reduce the flood of hostile responses. He could have easily done so by saying outright that DLA would not be affected by the green paper – he didn’t.

The reality is that, if the government have now stepped back from an attack on DLA before the care consultation has even ended, it is because of the literally thousands of angry responses on the Big Care Debate website, the thousands of signatures on petitions, the torrent of angry letters to MPs, the motions before the Scottish and Welsh assemblies and the growing pressure from disability charities who were themselves under enormous pressure from outraged claimants.

It’s because the focus on the single issue of benefits is fast becoming a public relations disaster for a green paper signed by no fewer than six secretaries of state.

Above all, if there’s been a change of heart, it’s because you have fought so effectively to protect the benefits of disabled people.

Here at Benefits and Work we don’t know if the fight is yet over for DLA, but we do know for certain it’s only just begun for AA.

Good luck,

Steve Donnison

Response to letter from Minister of State for Care Services

Dear Ms Selous

Thank you for writing to Mr Hope, Minister of State for Care Services, on my behalf and for forwarding the response to me.

I have read through the response and am not reassured that my care will improve should the DLA I receive go directly to Social Services. I write this because I do not, and have never had, any care input from Social Services. I wonder what the ‘proposed role’ for Social Services is in regards to people with mental illness and more so those who do not receive it already should the DLA they are receiving be transferred into a more centralised Social Services funding pot. As you are aware, my care support (such as it is) is provided wholly by Bedfordshire and Luton Mental Health and Social Care Partnership. I have found that a bit ironic because ‘Social Care’ as such, does not come under the remit of the Trust (or if it does, I can not see how that is being done) but is still provided by the central Bedfordshire Local Authority. I do know that mental health services have had a role in trying the help people get ‘Direct Payments’. However, I have on a couple of occasions sought to progress a claim in order to fund someone to support me, in regards to social inclusion (activities within local community). I was even told I could apply and then my care co-ordinator left the Trust and the replacing care co-ordinator said my needs could be met elsewhere. As yet, I have not been able to start my CPA5 care plan (to go swimming once a week) because the Support Worker has been on annual leave and then sick leave for 2 months now. I often find that plans to support my ‘progress’ are thwarted by continual turnover of mental health staff and/or a lack of their understanding on how to progress their own bureaucratic processes.

If the Government believes that that there is a case (as stated in the letter) for Disability benefits and Social Services to be merged into one system, I would ask how will those of us who are not provided care by Social Services be included in future care provision or whether we will not be included, although our benefits may be taken from us.

I would also re-affirm that since I have received Disability Benefits, I have been able to use the mobility allowance to pay for taxis (as I am unable to travel very far, by myself) to get to things like doctor’s appointments, to visit my father in a psychiatric unit and to appointments with my psychiatrist. I have one friend with a car, who has previously, taken me places if I pay petrol but she has herniated discs and a cyst in her spine so can no longer do this for me. If I were to lose this allowance, I don’t know how I would get about. I certainly am in no position to go to a public road show meeting about the Green Paper in Bedford. I rarely go outside of my home town of Dunstable, on my own, and have no one who is in a position to take me. I think there is an element of disability discrimination in this regards because there is an assumption (or it appears that way) that mentally ill people can either travel about by themselves (I am sure some can but a big part of my illness is agoraphobia and I need a lot of support in getting about) or that they have carers/close family members of friends who can help with their travel. My mother is dead, my father has been very seriously mentally ill for many years and is no long able to function within the family unit (again such as it is) and my daughter is at university and working and has little free time. She helps when she can but it would be unfair of me to rely on her to any great degree because of her commitments and a right to a life of her own. The only close friends I have, have serious mental and physical problems and are unable to help either. I have no family or friend network to support me on a regular basis. I am mostly, on my own battling with my illness as best I can.

I am sure that I am seen as someone who doesn’t try hard enough but I have done my best to sustain well being through using my DLA to develop my garden and to make cards. I would like to be more involved in community activities but I am not able to do this by myself (due to inconsistency that goes with my illness and agoraphobic states). I am afraid I do not see how losing my DLA and Social Services having that money will be supporting me to be self empowered, motivated or creative in any way. Actually, my view of such an outcome is that I would struggle within the system because it doesn’t seem to respond to the needs of people with mental illness nor does it, or existing MH Services, encourage and have consistency with itself to allow people access to ‘specific payments’ although they are supposedly there for people to ‘choose’ care that suits them or have staff able to provide care plans, with any level of consistency themselves, that are agreed.

My experience of the choice agenda and ‘agreements’ made with government bodies is that there are very few choices available and the ones that are (for reasons other than patient non compliance) do not get followed up on.

Sorry for the length of this letter but I think that mentally ill people are often forgotten in the greater scheme of things and I do think as a section of society there is more exclusion because access to information is not that easy. Obviously, I have a computer and an interest in what happens in a macro way (as well as on a personal level) but there are many mentally ill people who don’t have computers and are not informed (because they don’t go to places where the information is). I don’t know how barriers can be overcome but I think there is a role for all those supporting (in a professional capacity) or representing people with mental illness to be made aware of The Green Paper and pro-actively providing information to people so they have an opportunity to put their views forward, although the consultation will be over in November and that gives little time for more proaction to take place.

I have put my views on the government careandsupport online site and hope that many others have had the opportunity to do so and taken it up.


Yours sincerely



Mandy Lawrence

The truth about cats and dogs and MH services

Where do I start? More importantly does the crap ever end?

The investigation...the one that Beds and Luton Partnership Trust put in place because they didn't believe dad's suicide attempt was Serious Untoward Incident...hasn't even started yet. This, in spite of Director of Community MH Services insisting (during the call he made to me when he got back off leave, 2 weeks ago) that the designated person would be contacting me. Needless to say they didn't contact me.

I rang the Director back about this..and the case of the missing CPA 5 (and lack of cover/contact time for STR worker whilst she has been absent)..and dad telling me he has been taken of all medication (and is being given it whilst he is under anaesthetic for his ECT!!!!!) and that I am not sure quite what is going on in regards to his treatment or long term care planning. That is apart from father showing me a leaflet for a local care home and his care co-ordinator having no contact with him,since providing said leaflet.

The Director got very busy with the emails.

Following on from this, I got a rather abrupt email from Director of Acute Services informing me that the acute unit manager and CMHT manager would liase and upate me on what is actually going on in regards to dad's care. Yesterday, I got a call from a nurse, at the unit, inviting me to the ward round meeting on Monday. She didn't know what time it would be and then I heard the manager, in the background, telling her she needed to contact dad's care co-ordinator to ensure she would be at the meeting. The nurse then advised me that she would ring me today to confirm the time. I haven't received that call!!!!

The person designated to carry out the 'post suicide attempt investigation' sent me an email asking for my phone number so she could contact me. She did a few days back. I was out at the time, so she left a message. I rang her back. She didn't know who I was (even though she had sent me an email and left a message on my phone) or what I was calling about. When I reminded her, she said she hadn't even looked at any of the paperwork yet and would be doing that the next day.... after which she would ring me (sometime that day to tell me how she was going to proceed). Guess what? She hasn't rang me.

Have been ringing Dad daily. ECT doesn't seem to have had any affect, except to mess his short term memory and spark the dizzy spells off, again. He keeps falling over. From our conversations is clear that he is paranoid about what is being done to him and suspicious, quite possibly delusional.

Daughter and her fella came with me to tonight's visit. Fist time in the car with Em and me. I had not long taken a migraine tablet as had thumping head all day and aura was manifesting in my right eye...so I was a bit fragile and not on the ball but we got there in one piece (in spite of me giving wrong directions).

Dad managed 20 minutes before he got too anxious and asked us to leave. The whole time, his eyes were roaming around and if anyone came near him, he got jittery. He told me he had fallen over twice today. I asked if anyone came to his aid. He said the nurses and other patients did. I asked if he had seen the doctor about it. He said he had but the doctor seemed 'dismissive'. He said his care worker was supposed to see him but hadn't and that he hadn't heard from his care co-ordinator since she left the leaflet about the care home and he told me he has stopped eating. Now...objectively...I can see that maybe dad's memory might be playing tricks on him but I can also see that it's all one big fucking cock up...across the board.

There seems to be no cohesion, proper communication or the vaguest idea of what people are supposed to be doing (let alone them carrying those duties out). I wouldn't trust these people to run a tombola stall and my dad is in their care. Frighening!!!

In the car afterwards, Em commented that the staff should really be checking that dad is going for meals and encouraging him to eat. I said "Honey, I don't know what to do anymore. I feel like when you go in these places, you are at their mercy and they will do what they will (often, in my eyes, amounting to torture) and that is why I will fight tooth and nail never to go in them again". She said she understood why I hated that place so much.

Bless her. Not long after she left, she texted me to let me know she loved me and hoped I had a relaxing evening.

I can't relax....okay the lozees numb me down a bit - actually help me to get through each day...but I won't be able to relax until I have some reassurance that dad is safe, that there is a care home for him (one that 'in present climate' matches at least some of his needs).

Feel like I am on one of the levels of Dante's Inferno....purgatory, for an indefinate period. I don't really know what is going on in Dad's mind but I reckon he is there too.

Oh! and before I drop a whole loz and try and let go for a while...my acting care co-ordinator rang me in the week (most concerned about me). She said that she would leave it with me to ring her again, when I felt the need..and when I did she would talk to me (or, if out of office, ring me back as soon as). I rang the office today. Left a message for her to ring me back...no call.

The next wanker to come on this blog and wax ignorantly about how 'cushy' my life is..will get the 2 finger salute and fekk all else!!!!