Letter to MP..about personal and wider issues

Won't go on about it..will just copy it..think it speaks for itself.

Dear Mr Selous

I am writing for 2 reasons. Firstly, to update you on my father’s care. He is now in Townsend Court Psychiatric Unit and has been there for a few weeks. I have visited him on several occasions and kept daily contact. I have also been liasing with Chris Bradley-Rushe, up until his annual leave, and with another Director until his return.

My father is mostly morose and despairing but, at least, he is safe for the time being. He informed me that he is going to have ECT (as a kind of last resort) but need to check this with a senior member of Townsend Court staff. I have concerns about the ECT but I appreciate my father needs to make decisions about his treatment as fits his ability to do so (with support of MH staff) and will abide by what he thinks is best in this particular regard. I do however, have continuing concerns about his long term care and hope that these are also being looked into by mental health professionals. My father insists that he does not wish to return to his existing accommodation and I feel that for him to be made to return there might well lead to another suicide attempt. This, I believe, can and should be avoided.

My second reason for writing is the Government Green Paper on Care Reform. I am quite angry really that people with mental illness have been, and continue to be, mostly excluded from this consultation period. I only found out about it by a friend on the internet. When I spoke to other people I know with mental illness they had heard nothing about it and more importantly, the vast majority of them do not have computers or access to the consultation process. This means that many important views will be missed.

My own personal view, based on the quality of my life, is that Disability Living Allowance provides me with access to interests and support, I otherwise would not get. For example, I use my mobility allowance to get taxis to see my father and to get to appointments that must take place. I also use it to pay for the petrol when I need to get out or to pay for their bus fares on the rare occasion I have to use public transport. It does not fully cover these costs but it helps in part.

I was assessed as needing DLA not just because of the agoraphobia I suffer but because the assessment process included a quality of life aspect. It was deemed it would help me to be more involved in things. It certainly has enriched my life because I have used the money to buy seeds, plants and flowers for my garden and find tending these and sitting out in the garden very therapeutic. I also make cards…a hobby which I can do from home and with a friend, again, providing a therapeutic distraction from my illness and positive outlet.

I understand the debate around the care component but in all honesty, Mr Selous, DLA was, in essence, provided to stop the severely disabled being caught in poverty traps with no quality of life. For sure, I would have very little quality of life without DLA and my biggest fear is that it will get eaten up in a Social Services pot and people like myself, who have no contact with social services, will have no personal capacity to have any quality of life or appropriate care from that organisation. In fact, my experience of dealing with social services for my father is that they provided minimul support -15 minutes of a Private carer’s time each day (he has to pay for his meal service) and then discharged him from their care.

I think there are deeper issues than saving money from those who are already struggling financially. I appreciate that the country is in a financial mess but that is not the fault of the disabled and they should not suffer because of it. The deeper issue in regards to care is to do with the ability of the public sector to deliver the right care and when it is needed and my experience of it, is that without you, both myself and my father would not have any input from public services at all.

Apologies for swamping you but I get so sick of the negligence of services and lack of thought given when people are making decisions about mentally ill people, particularly as there are only a handful of us who seem to know what is intended for ‘our’ future.


Regards



Mandy Lawrence

Addendum...I forgot to write that if I lose DLA, I will not be able to afford to have an internet access and thus will be even more excluded from life!!!

Where am I, what have I been doing?...and...updates on reforming the care system

Got an email from a friend asking me this. I have been slipping on the keeping up connections front. Apologies...but have had a very busy few days.

Also clock that things have moved on in regards to responses viz a vie 'THE BIG CARE DEBATE'. Right now, have no energy left to 'air my views in appropriate places'. I need time....time to do nothing but care for me.

However, have been sent list (I will come back to, when bit more buoyed up) of different places where people can air their views. Here goes:

If you want to find out more about this issue, gather up to date information or view and/or join discussions please see some of the links below.

Department of Health
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_102338 (info)
http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_102339 (live consultation link)

DirectGov/Care and Support
http://careandsupport.direct.gov.uk/greenpaper/ (feedback & comments)
Respond to the green paper by taking part in the consultation process.
Contact form: http://careandsupport.direct.gov.uk/contact/
Email: careandsupport@dh.gsi.gov.uk
Write: Care and Support Team, Room 149, Richmond House, 79 Whitehall , London SW1A 2NS

Facebook
http://www.facebook.com/pages/Care-and-Support/41838753841

Benefits and Work
http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts/dla-threat-faq (info & No More Benefits Cuts campaign)
http://www.benefitsandwork.co.uk/news/latest-news/1097-stop-press-charities-left-reeling-by-your-response

Disability Law Service
http://www.dls.org.uk/Advice/WelfareBenefits.html (info)

Equality and Diversity Forum
http://www.edf.org.uk/blog/?p=3827

RNIB
http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlafeb2009.hcsp (info & campaign)
• Download a draft campaign letter to send to your MP (Word) http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlamp2009.doc
• Download a draft campaign letter for sighted campaign supporters and sent to your MP
• Download a draft letter to sent to your local newspaper
• Find out if your MP has sign the EDM
• Find out who your MP is – visit the Parliament website
• Send your MP a fax – via FaxYourMP.com

Rethink
http://www.rethink.org/how_we_can_help/news_and_media/press_releases/adult_green_paper_on.html (info & feedback)

Action For Blind People
http://www.actionforblindpeople.org.uk/news/dla-campaign-we-need-your-help,83,SNS.html (info & campaign)

Equality 2025
http://www.officefordisability.gov.uk/equality2025/default.asp (info)

Survivor History Group
A debate on disability living allowance is currently active on the Survivor History Group site http://studymore.org.uk/. (discussion) Anyone who wants to take part in the debate (or just listen to it) can.
To join the forum go to: http://groups.google.com/group/survivor-history/

Department for work and pensions
http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/index.htm (info)
http://www.dwp.gov.uk/about-dwp/public-bodies/dwp-sponsored-public-bodies/disability-living-allowance-advisory/
Email contact: ministers@dwp.gsi.gov.uk / enquiries@dwp.gsi.gov.uk (feedback)

BBC message boards
http://www.bbc.co.uk/ouch/messageboards/F2322273?thread=6842651 (discussion)

Seems like MIND are back on the case again:

MIND
http://www.mind.org.uk/campaigns (info)

MIND DLA RESPONSE
We share your view that the DLA is an important benefit for people with mental health problems. Mind responded to the social care pre-green paper consultation in November 2008, and recommended very strongly to Government that the Disability Living Allowance and Attendance Allowance must be retained.
Our recommendation was based on consultation with our networks. Over three-quarters (78 per cent) of respondents disagreed with the proposal to scrap DLA, and only 13 per cent agreed. 66 per cent of respondents had received DLA or AA in the last two years, and felt that DLA provided financial support for the extra costs of living with a disability, which are distinct from care costs. In focus groups and individual correspondence with service users, the proposal to pool DLA was unanimously rejected, often vehemently.
In the social care green paper, Shaping the Future of Care Together, the Government has not proposed to scrap DLA, although it is asking people for their views on whether they should pool Attendance Allowance with social care money.
Mind will respond to the green paper in the Autumn, along with other disability charities, and we will be consulting with our networks of people with experience of mental distress who will inform our response.
Mind will be lobbying the Government to make sure a new National Care Service takes account of the needs of people with experience of mental distress. But you can also have your say directly, by getting involved in the Government's national 'Big Care Debate'. There will be a number of events taking place around the country, or you can take part online, on Facebook, or on Twitter.
If you would like to get involved in Mind's response to the consultation and be kept up to date with the work Mind is doing around this issue please sign up to our campaigning network, Mind in Action, by sending your postal address to action@mind.org.uk. You will also receive e-bulletins with calls to action and ways to support Mind's work. You can also become a member of Mind Link, our network of people with direct experience of mental distress, by emailing mindlink@mind.org.uk. More information about the campaign will be posted on our website shortly: www.mind.org.uk

A response from Mind on the Reform of the care and support system (Dec 2008) can be obtained from a.whitelock@mind.org.uk

A couple of good days

Friday: Dad rang me from the hospital. He couldn't get the money into the payphone in time but knew it was him. Rang him back and he asked if we could go out for a ride somewhere. Rob (Em's fella) happy to oblige but was a bit late in the day to go up to the local Downs plus Rob was knackered from working 17 days without a day off. In the end we went to a local carvery.

Dad was a bit wobbly but enjoyed himself and the veggie option was rather nice.

This was quite a big step forward for Dad. I don't want to raise expectations and next then he is back in the black hole but a pozzie is a pozzie and it was great that he wanted to go out and I really can't remember the last time we went out for a family meal.

Saturday: Friend's birthday. It was iffy right up to yesterday if she would be able to get out because she has been suffering aggrevated back problems (think that was to do with the 'voluntary' weed digging we did in her Church's car park. Don't get me started on that ...because I have strong feelings about her feeling obliged to do these things in such poor physical health but I wasn't going to let her struggle on alone (no sign of any support from other members of the congregation...that's Christian spirit for ya!). Can't say it did me much physical good either. Wednesday I felt rancid (some of which was due to a negative visit to the acute unit..and challenges I won't go into depth about. Will just say more staff attitude, a faulty hot drinks machine and Dad being in weird place with himself)

Anyway, Debs rallied though because she really wanted to get out and see the animals at a local farm. Well, is more like a children's zoo than a farm. Was a lovely day. Weather stayed good and we saw the most dinky baby goats. I spent ages feeding this little white one leaves of the trees. Don't think that was really allowed. They would rather I fed them the £1 containers of carrots (past their prime) and other bits of stuff they were selling. I know from Debs that goats love leaves (most leaves) and will happily chomp away on them, if allowed.

I was saddened to see the Racoons in a tiny corner of the farm (small cage) all looking thoroughly pissed off. One was pacing up and down. All I had was the £1 container of bits. Debs said they liked carrots..so we broke them into smaller pieces and the racoons livened up, scurrying about and climbing to get the bigger chunks from top of the cage.

Hmmm...such is the downside of keeping animals in captivity and also business over-riding the needs of the animals. Anyway, we did our bit and will go back later (with some fresh fruit and spend more time trying to keep racoons entertained).

Later we went on a mission to get leaves for the goats Debs already has. I felt quite the common crim, standing by the side of the road cutting branches. Sure there will be strong feelings about this, out there, but my loyalty is to Deb and her goats.

After that I bought an Indian take away and we pigged out.

Today, I have put out the bird feeders(purchased at the farm), with a suet block and nutty bits, so hopefully will start to see more of the feathery types in the garden. Suki isn't interested in chasing birds. She prefers to loll about on the floor getting fusses.

Later am going to mow the front lawn, make a card for Dad's brother (his birthday some time soon) and go visit Dad later on in the day.

Am thinking that surely the management at the acute unit could flex visiting times a bit. Dad wants to go to the local Downs. Debs has a car and we could take him out during the day. 4pm onwards is not best time to be sitting on top of a hill and more so with the nights drawing in and Autumn around the corner. Will ring and see if any negotiation is possible. Previous communications to Director of Acute Services ended with visitors being allowed in the garden there (even if I had to keep reminding staff of that 'new' agreement). Will give it a whirl.

Off for a cuppa and half a loz..and then to the garden.

Am back down to 2 and a half lozzees a day. Yesterday, 2 and a quarter:>). If things don't take another nose dive, I could get down to 2 a day..and from there, well.....sticking with my philosophy of one day at a time but going with the pozzie vibe.

The trouble with Shrinks

well...could write a book...but one of the biggest problems is getting appointments with one you can trust (because you have built up some kind of positive communications with them) and then they move on. I am not sure why they have to move on but some bright spark will say it is something to do with training or building experience or some other bullshit!!!

Yes, am writing this because I have been sent a letter for my next appointment and it is with another shrink. Am wary of these people and their profession...15 minutes of talking about how you feel (whilst they nod or go "hmmmm") and a possible change of prescription at the end of it (for another medication that makes you feel even more crap than you already do).

I also dread them because, particularly with a shrink that doesn't know me, the most imporant thing for them will be my taking lorazepam and most probably they will tell me I should be coming off the stuff. Yeah, in an ideal world mate...and in an ideal world you wouldn't be able to give me other toxic crap because the pharma's wouldn't be allowed to produce it.

And before anyone comes on and tells me that drugs work...they can go have a look at my Dad, being pumped full of Dipixol (plus intermittent other stuff). Maybe, some drugs work for some people and recently I saw someone I was in acute care with. They had put on about 3 stone and had this glazed look on their face and were insisting they felt much better. That was their choice (but more likely their shrink made it for them). Well the part of me that can make objective decisions about' accepted maintenance' medication says it is stuck in the middle ages and I don't want it.

For sure am neurotic about this. Don't have a problem admitting that. Do have a problem trying to condensce the lack of trust around psychiatry, family dysfunction and all the emotional baggage that goes with it and not believing the hype in a 15 minute meeting.

I might postpone it....on grounds that negative reinforcement when visiting Dad doesn't incline me to believe that the shrink can do anything for me at all. That... as good as it is getting right is how it is going to be for forseeable future and I don't need any more jerking around. Problem then is GPs saying that I need okay from shrink to keep taking lozees.

Sometimes, all I want is to be left the heck alone to muddle along as I do. No pep talks, no toxic alternatives, no happy clappy pappy crappy.

Guess am asking too much!

Personal life too hellish to write about...so blogging about things I can blog about

Due to propensity to cry at almost anything, didn't manage to watch the video that went with the campaign details but life (short as it is ) is rather tortured for my furry friends in China. That is unless they happen to be a Panda. What a contradiction we humans are!!!
Anyway, have put my money where my mouth is...enough, I hope, to do some good.


Pledge to go fur-free at PETA.org.

Have a link to Carer Watch (an organisation that is allowing the sick and disabled to add comments....often to do with proposals on the green paper). I have renamed it "Spot where the money is going to go Paper" :

carerwatchdotcom.myfineforum.org/about748.html

And now I am going to take my sedation and go sleep.

Latest from benefits and work website

Stop press: charities left reeling by your response
14 August 2009

17,000 sick and disabled campaigners have managed in just a few days to send shock waves throughout the voluntary sector. Charities have been left reeling by the flood of emails they have been deluged with and the Disability Benefits Consortium have now issued a statement in the hope of stemming it.

Many hundreds of you have sent us copies of replies you have received from a huge range of charities. We have also heard from charities who say they cannot cope with the number of emails they are receiving.

Whilst some had already begun working on a reply to the green paper, it’s clear that many other organisations were hardly aware of it or its potential implications and are now hurriedly formulating responses. Some have begun canvassing their members. Others are seeking clarification from government over the exact meaning of the phrase ‘disability benefits, for example attendance allowance’

CPAG claim that they have had an assurance from the DWP that DLA will not be involved in any reforms. However, few disabled campaigners are likely to be satisfied with a private assurance from unnamed officials rather than a government minister. And that still leaves the issue of AA unresolved.

Meanwhile we received this communication from the Disability Benefits Consortium today which they asked us to communicate to campaigners:

“The Disability Benefits Consortium (DBC) comprises more than 25 national organisations that represent the needs of people who rely on disability benefits. As a consortium, we strongly oppose any proposals for using existing benefits to fund social care, and we will be making our opposition clear in our forthcoming response to the Green Paper on social care in England."

It is a very important step forward – there will now be organised opposition from a consortium of agencies that the government would have very much hoped to keep onside – or at least reasonably quiet, at this very early stage in the legislative process.

It’s certainly a very different response from the one we were getting from some charities at the beginning of the week, which dismissed any possibility of DLA being at risk and seemed to lack any sense of urgency in relation to the threat to disability benefits generally. Your success in getting the disability benefits consortium onside may make them think again.

There may be little purpose in continuing to bombard members of the consortium with emails which are now unlikely to be read and are generally being replied to with a standard response email. There is no doubt that the message has got home that enough is enough and there should be no more attacks on sick and disabled people’s income.

In another sign that campaigners are causing a stir we have discovered that home office officials are apparently attempting to discredit the campaign. Emails appear to be being forwarded from the Performance and Finance Directorate of the Home Office which, bizarrely, claim that the campaign is part of an identity theft scam. We are currently making further enquiries of the named home office staff. We have also been made aware of claims being circulated that we have inserted a virus in copies of the green paper!

Your efforts have achieved a startling amount in just a few days - more than we had expected would be achieved in many weeks. Dealing with the green paper has now leapt to the top of the agenda and it would be a foolhardy disability charity which dismissed the issue as a minor one, or at too early a stage to be concerned about.

Charities have until 13 November to make their representations to government. They now know that they will be watched and judged on the content of those representations– all of which should be obtainable under the Freedom of information Act - by many thousands of their own members. What we hope to see now is that those charities which are not already doing so will involve their members in creating the content of those responses. Where they approach you for input and support, we have no doubt that you will be happy to help them. Hopefully, that way we can avoid a repeat of the failure to prevent the disastrous impact of employment and support allowance.

We’ll be sending out another email on Tuesday suggesting further action. Meanwhile, well done!

Closing the gate after the horse has bolted

For what it is worth..as in any relevance of putting it up here..I am putting up the response I got from 'Disability Alliance'.

Before I post the letter, I have to say that I didn't realise it was so late in the day. I thought the Green Paper (including cuts to DLA) was in the consultation process. However, it seems it is going to the House of Lords in October (for rubber stamping). Some tweeking could take place before that..maybe I am looking from a worse case scenario perspective but I can't see any major turnarounds now.

Shame that those of us, and organisations who supposedly represent us, who would have liked to have had a say haven't been provided with that opportunity in any real-time, to do so. Such is life..and I reckon things are only going to get worse. Bleak House here we come!!!

Additional note: I had completed the survey (identified in letter below). If nothing else, you can see where certain hierarchical thinking is. From what I read...it would appear... we are heading towards a de-nationalised health service. That may sound appealing but beware it could well be replaced with a newly nationalised (with a fancy title) and downsized something else.

Dear Ms Lawrence

Disability Alliance supports disability living allowance (DLA) and attendance allowance (AA) - as national, non-means tested benefits paid to disabled people to meet their higher living costs. We - and others - are well aware of the evidence on the higher costs of living disabled people experience. DLA and AA were intended to help with those costs and help tackle the link between disability and poverty. We believe placing either or both of these funds in the pool for Local Authority distribution could cut support and restrict choice and control for many disabled people.

Our position is online - http://www.disabilityalliance.org/care6a.htm - and we are running a survey to encourage people to respond to the green paper titled 'Shaping the Future of Care Together' and help strengthen our response by telling us your views. Please fill it in if you have time at: http://www.disabilityalliance.org/care6.htm The questions are those posed in the green paper - we need people's answers to these, but we have also added a couple of our own. We look forward to reading your response.

It would help in our campaign work if you also write to your MP describing your experience. If you don't know who your MP is you can find out (by using your postcode) at http://findyourmp.parliament.uk/ Attached is a sample letter that you might like to consider sending to your MP.

It would also help if you wrote to the Department for Work and Pensions on this issue - but please highlight that you are contacting them about national policy and not your individual case, or they may refer you to another agency. You can find the e-mail address for DWP Ministers on the following webpage at http://dwp.gov.uk/contact-us/

Disability Alliance works and campaigns at the national level to influence Government plans in this area. We are members of the Disability Benefit Consortium, and our website hosts the DBC at http://www.disabilityalliance.org/dbc.htm We meet regularly with the Department for Work and Pensions and HM Revenue and Customs on a range of benefits related issues.

Thank you for your e-mail.

Yours sincerely
Michele Holland


Disability Alliance
Universal House, 88-94 Wentworth Street
London E1 7SA
Tel: 020 7247 8776
Registered charity number 1063115
Company limited by guarantee number 2056801
www.disabilityalliance.org
Breaking the link between poverty and disability

Cutty Outty Bits ...now that's what I call therapy

Changes to DLA and other Allowances - Stakeholder Group Members

Here is a list of the Stakeholder Members and their email addresses(note there is no representative from mental health charities bar Alzheimer's society):

Age Concern - Helena Herklots – grants.unit@ace.org.uk
Allied Health Professions Federation – infor@ahpf.org.uk
Alzheimer’s Society - enquiries@alzheimers.org.uk
Association of British Insurers - Nick Kirwan – contact form
Association of Directors of Adult Social Services - John Dixon - john.dixon@westsussex.gov.uk
Asthma UK - Neil Churchill - info@asthma.org.uk
Better Government for Older People - susan.price@londoncouncils.gov.uk (this is the best I could do, BGOP don’t seem to have a website, just contacts for different areas)

British Association of Social Workers - Ian Johnston - nothing for I.J. - h.dawson@basw.co.uk (chief exec.) j.devo@basw.co.uk (magazine)
Carers UK - Imelda Redmond - info@carersuk.org
Commission for Social Care Inspection - Paul Snell enquiries@cqc.org.uk (Now Care Quality Commission)
Confederation of British Industry – Nigel.Bourne@cbi.org.uk (very difficult to find, this is director CBI London)
Counsel and Care - Anna Passingham – anna.passingham@counselandcare.org.uk
Crossroads Association - Anne Roberts – contact form
Disability Alliance - Kate Nash - office.da@dial.pipex.com
English Community Care Association - Martin Green - maria.patterson@ecca.org.uk
Equality 2025 - Rowen Jade – No website
Equality and Human Rights Commission - Gerry Zarb - info@equalityhumanrights.com - (England)
General Social Care Council - Mike Wardle - info@gscc.org.uk
GMB - Sharon Holder - info@gmb.org.uk
Help the Aged - Elizabeth McLennan - info@helptheaged.org.uk
In Control - Simon Duffy - admin@in-control.org.uk (S.D. has left)
Independent Age - Janet Morrison - jeffrey.manton@independentage.org.uk (London)
Institute of Public Policy Research - Sophie Moullin - k.osullivan@ippr.org (Press releases, no others)
Joseph Rowntree Foundation - Sue Collins - info@jrf.org.uk
The King's Fund - Richard Humphries - Tel: 020 7307 2400 (No email)
Local Government Association - Anne McDonald - anne.mcdonald@lga.gov.uk
London School of Economics - Prof Julien Forder - disability-dyslexia@lse.ac.uk (For disabled students) pressoffice@lse.ac.uk
Long Term Conditions Alliance - Mark Platt – (No website but it was on this site, it’s about health and social care) info@nationalvoices.org.uk
Look Ahead Housing and Care Ltd - Victoria Stark - info@lookahead.org.uk
Mencap - David Congdon - Sandra.pick@mencap.org.uk
National Care Association - info@nca.gb.com
National Care Forum - Des Kelly - des.kelly@nationalcareforum.org.uk
National Centre for Independent Living - Sue Bott - info@ncil.org.uk
National Housing Federation - Rebecca Pritchard - rebeccap@housing.org.uk
NAVCA - navca@navca.org.uk
New Local Government Network - info@nlgn.org.uk
NHS Confederation - Jo Webber - enquiries@nhsconfed.org
Partnership Group - Ian Owen - info@partnership.co.uk
Princess Royal Trust for Carers - Alex Fox - pknight@carers.org
PRP Architects - lon.prp@prparchitects.co.uk (This is the London Branch or use contact form main office)
Race Equality Foundation - ratna@racefound.org.uk
RADAR - Beth Capper - radar@radar.org.uk
Registered Nursing Home Association - Ian Turner - email: info@rnha.co.uk
Relatives & Residents Association - Dr Gillian Dalley - Gillian.Dalley@relres.org
Royal College of Nursing - Howard Catton – Contact form
Skills for Care - Andrea Rowe – Contact form
Social Care Institute for Excellence - Julie Jones - info@scie.org.uk
Social Enterprise Coalition - Jonathan Bland - info@socialenterprise.org.uk
Social Security Advisory Committee - ssac@dwp.gsi.gov.uk
Standing Commission on Carers - scoc@dh.gsi.gov.uk
UK Disabled People’s Council - Julie Newman – (No website, couldn’t find contact)
UK Home Care Association - Lesley Rimmer - helpline@ukhca.co.uk
Unison - direct@unison.co.uk
University of Essex Professor - Richard Berthoud - berthoud@essex.ac.uk
Voluntary Organisations Disability Group - Bryan Dutton - info@vodg.org.uk
Volunteering England - Sheila Hawkins - volunteering@volunteeringengland.org

I have emailed Kate Nash (who is one of the few representatives on the group who I think can represent (in part) those with mental illness. I do urge people to write to anyone they know with any say, power or connections asking them to defend the rights of disabled people to continue to have DLA payments,particularly as I believe that if the money is given directly to social services, people with mental illness will get little,if any, support from them in meeting their care needs.

My recent experience of them with my father is that they do the barest minimum and then discharge people as quickly as possible.

Cuts in Disability Living Allowances..another kick in the jacksie for disabled people and MH charities don't give a shit!!!

From benefits and work website:

A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

The consultation period for the green paper ends on 13 November. If there has been no significant outcry against the plans by then, it seems very likely that whichever party is in power after the next election will seize this opportunity to cut public spending by over a billion pounds a year.

Unfortunately, so far, that outcry has been very muted indeed, with only a few agencies – including RNIB and Age Concern and Help the Aged - speaking out. Shamefully, at least one major disability organisation, Disability Alliance, immediately announced its support for the green paper’s proposals.

This is in spite of the fact that a report in November 2008 by the Institute for Social and Economic Research warned that taking DLA and AA from claimants and making it part of a ‘personal budget’ administered by social services will leave millions of disabled people worse off and with less independence.

The lack of protest is caused at least in part by ministers deliberately choosing ambiguous terms for their plans. The green paper refers only to cutting ‘disability benefits, for example Attendance Allowance’. Some organisations with predominantly younger members clearly believe that because DLA isn’t specifically named, that therefore it isn’t in the firing line.

But they are forgetting all the deception and weasel words that have surrounded the introduction of employment and support allowance. For example, ministers said that ESA would be paid at a higher rate than incapacity benefit. In fact, it turned out that cuts in related premiums mean that many people are very much worse off on ESA than they would have been on incapacity benefits.

The reality is that if the government was intending to axe only AA it would have said so clearly, instead of deliberately and repeatedly using the term ‘disability benefits’ to cause uncertainty and confusion. Writing on Rightsnet, Neil Bateman, a respected welfare benefits consultant who also writes for Community Care magazine argued:

“Based on what I heard last week at the DWP Policy and Strategy Forum, both DLA and AA are in the DH's [Department of Health’s] sights and DWP are closely, involved in these developments.”

Even Paul Treloar, until recently Disability Alliance’s Director of Policy and now Head of Information at Gingerbread, wrote that:

“From what I understand at the moment, it is certainly attendance allowance that is being considered for the chop and reallocation to means-tested social care provision via local authorities - but given that the ultimate aim is to come up with a comprehensive and sustainable system of social care for all ages, it's difficult to see how DLA care component won't be similarly up for inclusion, in my opinion.”


Here at Benefits and Work, we’re convinced that the threat to DLA as well as AA is very real and the that time to act is short.

As a result, we’re launching our own campaign to save these vital benefits. We’re looking for one thousand people to sign up for our No More Benefits Cuts campaign. All you need to do is provide us with your email address and first name and be prepared to give up a few minutes of your time once a week to send an email or post on a forum.

Although we know it’s a very tough target, we won’t begin until we can get 1,000 people to sign up for the campaign, simply because we don’t believe that a smaller number will have any effect at all. In truth, many more will eventually be needed.

You don’t need to be a claimant – you might be a carer or support worker, for example – and you don’t need to be a subscribing member of Benefits and Work. You also don’t have to send any emails if you choose not to and you can remove yourself from the list at any time you wish. And, of course, we will never pass your details on to anyone else under any circumstances.

On the other hand, if you think that here at Benefits and Work we’re just being doom and gloom mongers and that only attendance allowance is really under threat then please consider this:

If we let them get away with this, if we all look the other way as one and a half million sick and disabled pensioners have their attendance allowance stolen from them and are plunged into deepest poverty, how long do you honestly think it will be before the government comes back to steal your benefits as well?

And who will you ask to speak out for you in the future, if you remain silent now, just because you don’t think this affects you?

If you wish to sign up to the campaign to try and prevent allowances being withdrawn go to:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cut

The site has been accused of cajoling people in to paying a joining fee but I think that is a bit iffy for people who are on low incomes. I signed up for the campaign and received an email about it made no mention of a joining fee...only what people can and are doing to try and stop Disability Living Allowance being taken away from those who need it.

SHAME ON MIND AND RETHINK FOR NOT SPEAKING OUT ABOUT THIS OR CAMPAIGNING PROPERLY FOR THE MENTALLY ILL!

The good, bad, ugly and a bit daft

Let's start with combining the bad and the ugly

Was yakky morning (weird combos of naff physical feelings and emotional torments) not improved by phone calls from 'officialdom'. Seems the advocacy service have been kept out to the picture in regards to what is happening with Dad. Updated his advocate and passed on details of relevant others she needs to talk with..whilst making it clear that I am not here to play a co-ordinating function nor to take responsibility for Dad's care. She asked if I would I rather she took over the linking role and I said "Yes, please". All I really need to know is what decisions are made and to have a say when it comes to decisions that I believe will have an impact on Dad's long term care and my well being.

Straight after, the person who is covering for the Director, in his absense, rang to ask me how things were. I told her I was feeling pants (migraine brewing) and that I had nothing much more to say because I hadn't seen Dad since Wednesday and had passed feedback from that to the Director. I think she was just touching base and that is fair enough but I am beyond tired of phone calls and particularly ones reminding me of things that I am struggling to handle.

Is going to be another case of taking phone out of socket and letting things be what they will.

Having self medicated to level of tolerating life, dragged sorry butt round to shops to pick up latest zoo photos. Derby trip ones are still being developed in some lab. Yep, it's baby elephant time. I treated myself to some marshmallows whilst out to go with hot choccies. That had to be done.

And so to the good. For me, it doesn't get much better than this:

Baby Needs Walkies



Baby Tired Now



She still hasn't got a name but news is that Mum (Kaylee) and baby are still doing well.

Here is the start, hopefully, of greater things. Whilst in Derbyshire sussed that bees absolutely love Lavender as they were to be found, every morning, swarming round the lavender in the garden. Trip to garden centre planned soon as rain eases up.




Ending on the daft. Here are my beloved tarten Converse. 3 years old and still hanging together although they have seen better days. Ha!

If I hadn't have laughed

I would have bawled me eyes out.

Went to visit Dad in the 'improved' local acute unit. The manager, in a conversation earlier in the day, said I would find positive changes in the place. Hmmmm...

I tried....I really did.... to spot the positive changes but they weren't there. I saw lots of signs such as 'The West Wing'. I was neither thrilled or upset by those but the initial approach on arriving there of 15 feet wire fences and barriers started to give me the heebies. I had to remind myself that I wasn't entering a high secure unit.

Dr J and I were informed on arrival that we had to sign in. Fair enough but when I asked to borrow a pen, the receptionist looked at me like I was a piece of shit. I think that goes with the job!!

We were then ushered into a side room and asked to wait for Dad. It was a pretty humid day and it felt like being in a sauna.

Dad was ushered in. For the love of all things sacred, I nearly wept. He was even more debilitated than I imaged. I can't explain it properly and won't attempt to. I grabbed Dr J's hand and rallied best as. We did manage to get through his mail (which he had asked me to bring from home) but he seemed disorientated and distracted. He kept asking for a tonic to pick him up. If only it was that simple. he wouldn't be in that place.

I kept thinking I was going to faint. I was sweating profusely and whereas Dad's blood pressure (which the nurse took 3 times due to him saying he felt so weak) seemed dangeroulsy low to me, I felt mine go through the ceiling.

There were communication issues (understatement)...the staff nurse had a strong African accent and my father is very hard of hearing. I ended up playing intepreter. When the option of PRN came up...I had to explain to Dad what PRN meant and the nurse asked me if Dad had a hearing problem. Er yes and no he wasn't just being rude or evasive. At one point Dad got aggi and started pacing but then got dizzy so I held him and sat him back down.

Due to heat in room and Dad getting aggi, I suggested we go into the garden area to get some fresh air. I asked the nurse and was told that Dad could go but visitors were not allowed. For fekk sake. Since when did units become even more like prisons? My last stay in there is a memory I could do without but even back then visitors were allowed to sit with me in the garden. I guess is another one of those essential Health and Safety measures. Although not sure essential to whom.

I made a joke about Colditz being more accommodating and mimicked a duck walk...I had this image of staff in Natzi uniforms and I laughted (maybe a bit too hysterically) but it was either that or kick off.

All I knew was I had to get the hell out of there. So Dr J and me said our goodbyes. I gave Dad a hug and said I would ring him and be back at the weekend. Am hoping by then I am less spooked by the thought of going there again. Outside I was shaking. Both Dr J and me have too many bad experiences and that visit did nothing to change my mind about mental health services and how inappropriate the so called modernisation programme is for the mentally ill.

It seems to revolve around risk assessing anything therapeutic or human out of these places and demoting people with illness to 'dangerous animals' that must be contained. Now I fully appreciate that Dad is in no fit state to be allowed to roam around freely. If his illness isn't to be trusted (and right now it can't be) then the affects the medication are having on him are equally limiting his capacity to function. Yeah! Maybe the meds will work. MAYBE!!!! Even if they do...it is very early days and very early days on strong meds (his being Dipixol) are ones in which he needs alot of monitoring (for physical reactions) and support due to debilitation.

After a rather fraught couple of days, on my arrival back home....I have been reassured that Dad is not due home leave. I won't go into details but I was led to believe he was being sent out Weds (yesterday). That beggared belief really but after frantic phone calls to the Director... for sure, for now, he is not going anywhere and is better off there. That is saying something because, and I mean this, I would rather be dead than have to go back there again.

I am not sure now that I made the right decision....but what else could I do? Let him die? Perhaps that would have been a merciful release. I can't tell and I only hope that Dad gets through this and to a point where it isn't total torture for him to be alive and constant mind fuck for me.

Last night I spoke to Dr J about moving. Is a pipe dream at the moment but at some point I would like to move away from this place and the area. Way too many bad memories. I am not sure that Dr J would come with me and I am not sure that if he did it would benefit either of us but is a dream I am going to hang on to. Sometimes the dream of a better future is all that there is to hang on to.

When in Rome

Anyone who reads the blog will know that I am mostly adverse to the media, whilst still thinking that a free press is an essential requirement to this society.

But as with title, being away from home tend to go with flow of where I am and when asked if I wanted a Saturday paper agreed to a copy of The Independent.

Three stories caught my interest:

The first was about Herman Rorschach. More so the ink blots he used in pyschiatric testing from 1920's. Seems the cat is out of the bag. Thanks to Wikipedia, who posted the images along with most common responses given by test participants (would assume that is researched somehow).. Years of serious psycho-analyis put at risk...so the psychologists say... by this reckless action bt Wiki. Ha! Ha! The accompanying impage to this article was of one of the ink blots. To me it looked like a demonic mask. Have yet to check my response with Wikipidea list but am in no hurry. I think the test is mostly bunkum.

Second artice was about the Sanctity of Life. The writer relating this to the big debate around Euthanasia. Using Trosky as an example of someone whose example shouldn't be followed, particulary as his claim that the sanctity of life was "Papist-Quaker babble" was shared by that great humanist Stalin (his one time friend and the person most likely to have had Trosky done in).Hitler was also used as an anti hero (like people didn't get that already)as he was pro euthanasia for the mentally and physically disabled (which is something maybe not as widely known as to those of us with vested interest) What hit home to me was the writer's view that in this society, which, he claims, values everything in terms of money that euthanasia could become a cop out for a government who hasn't got and would prefer not to have to find the resources to care for a growing and aging population.Food for thought indeed!!

Final story of interest was about The Quakers (a group I know little about but am becoming more interested in since reading the article). They are going to conduct gay weddings. i didn't realise that the government was in opposition to this. After all this government passed the law on 'civil arrangements' allowing for gay couples to have similar rights in regards to homes, financial enitlements and a certain level of acceptance (again legally) of the importance of relationships and commitment. Now I have issues in regard to marriage and religeon (personal bias I wouldn't enforce on anyone else even if I could) but am pro human rights so am chuffed The Quakers are prepared to swim against the tide of social control and offer a service that acknowledges the sanctity of love and people's rights to choose how they share that. More tolerance and less social dictate would be good for this country and the people in it. Perhaps the article has more poignance to me as the guys I am staying with are celebrating their first 'wedding' anniversary. They had a civil service (can't remember what the actual term is) this day, last year,and good on 'em. Think we are all going out for a celebratory meal later.Yum!

To my here and now. Listening to George Michael cd I bought yesterday. Purely because it has his version of 'Flawless' on it. The bonus is it has all the other dancey numbers on it too, which makes up for the disappearance of the the dance cd of 'Ladies and Gentlemen', along with my house keys, back home. Am going to head downstairs to make myself a cuppa, check out the baby chicks and start to share the rest of the day with my hosts.

Live from a laptop in Derbyshire

and it feels good :>)

Apart from an hour stuck in a motorway jam outside Northampton,journey here was smooth running. £3.09 for a hot choccy at a motorway caf was a rip off but least I got some marshmallows with it.

We had a Chinese meal last night and then chilled out chatting and catching up. The guys have new baby chicks too. So cute.

Later today, we are going to visit a local market. Am a big fan of markets. The real ones with bargains. For now, am slobbing about in bedroom, listening to radio and bidding on a blue top on ebay to go with electric blue dolly shoes. I have a dolly shoe obsession. Obsession as in one pair of dolly shoes is really enough for anyone but I want pairs in diffferent colours and or with different patterns on them. Totally frivolous, superficial stuff. I need more of that kind of thing.

Other plans for weekend. Would like to watch The Proms tribute to Hollywood movies tonight and hoping for drive to Peak District. Apart from that don't mind. The break is enough in itself. I needed space between me and what has been going on. Space just for me.

Off to have a shower and then it's boiled eggs for brekky (from the chickens the guys keep). Am feeling quite blissy.