Monday, 28 February 2011
Tuesday, 15 February 2011
Following on from the comments made by Dame Elisabeth Hoodless, the retiring head of Community Service Volunteering http://tinyurl.com/6y7ovnc the voluntary sector was delivered another kick in the teeth with the The Skills Funding Agency using a selection criteria that weighs heavily in favour of colleges despite many voluntary sector organisations having an extremely good record of delivering skills training to people who have disengaged from traditional training and education providers. This is at a time when cuts are severely affecting the funding opportunities available to the sector
In July 2010 The Skills Funding Agency changed its policy for selecting training providers from QPF (Qualified provider Framework) to something called ACTOR (Approved College and Training Organisation Register) and it is only from this register that they will be offering tenders to deliver skills training to specific areas of identified need, http://tinyurl.com/6fghnlm An example of this came to my attention last week they announced the chosen organisations who will deliver skills training to NEETs, or people not in employment, education or training. In the South West 4 of the 6 winning bids were made by colleges, which demonstrate a heavy bias towards colleges at the expense of voluntary sector providers.
The money for this training was provided by the European Social Fund who just over a year ago requested evidence on how voluntary sector training providers were engaging and being used in the subcontracting process of their funding. At roughly the same time, The Learning Curve, one of the major training and information bodies in the voluntary sector held their Voluntary Value Conference, where among other issues the discussion included the barriers faced by the voluntary sector which mainly focussed around the lack of financial incentive to work with people with more complex needs and voluntary sector organisations considering developing consortia to tender bids http://tinyurl.com/679povz
Why does this matter you may well ask, well these are sizable amounts of funding (between 2007-2010 over £1billion in UK alone) http://tinyurl.com/64b835j) supporting numerous projects aimed at those who are disengaged and disenfranchised from society who are more likely to have complex needs for whom, for whatever reasons school and college has not worked in the past so why would they go now?
I came across an example of this a few years ago with a European Social Fund project was run by a voluntary sector provider whose desk right next to mine. This project was aimed at teaching employment training and skills to people with mental health problems. I was amazed by the number of people who came to this project and benefitted hugely from it. Being a curious soul I engaged many of them in conversation asking them why they had joined this project and not more traditional educational providers. Without exception they all said they didn’t have the confidence to go to a big foreboding building where they would be surrounded by lots of people who were far cleverer than they were.
When the funding for the project ended all the participants were invited to the last day to share their experiences and let the trainer know what they were doing now. Many faces i was familiar with, one lady who had told me she couldn’t go to college because she was stupid was doing a degree in psychology at the Open University, another who had become self-conscious and depressed after losing her sight had taken the step of going to college and training in alternative therapy and is now self employed, another had become a drug and alcohol counsellor, this is just a few examples of the success a voluntary sector training provider can have and as I have liaised with other such organisations all of them have success stories of this nature.
In no way am I criticising schools and colleges who have provided me and thousands of others with an education that has served me well, but it has to be recognised that this educational route is not for everybody and that to those this funding is aimed at, offering what on paper will seem like just ‘another college course’ will not serve the purpose it was meant to, indeed a voluntary sector provider can often be the stepping stone to a college course and even higher education but under the current selection process there is a large risk of getting this wrong.
This means that in addition to the spending cuts from Local and Central government, the sector is now being restricted in placing tenders to provide services (not just skills training, which will in essence make David Cameron's vision of the Big Society undeliverable.
Monday, 7 February 2011
Tuesday, 25 January 2011
Greeting readers. As you will remember before Christmas I wrote to numerous politicians and ministers regarding the concerns many of us disableds share regarding benefit reform. My emphasis was on Employment and Support Allowance. Please find below the, shall we say standard response, from the Department of Works & Pensions. I will leave you to make up your own minds, I know I have and I'm working on my response.
Thank you for your recent correspondence. Government Ministers receive a large volume of correspondence and they are unable respond personally on every occasion. As your letter falls within the remit of this Department, we have been asked to respond.
The Government recognises the difficulties faced by severely disabled people and their carers. Ministers have made it clear that they want to ensure benefits are fair and affordable, and support the participation of disabled people in society.
The Chancellor announced on 22 June 2010 that Disability Living Allowance will be reformed, with a new assessment applying from 2013/14. The Government published a consultation paper on 6 December 2010 and the consultation document can be seen on the DWP website, which also contains details of how to submit views. The consultation runs until 14 February this year. We will talk with disabled people to ensure that support is effectively targeted on those with the greatest need, while continuing to tackle inequalities that can arise from severe disability.
New arrangements are also being introduced to ensure that people of working age who currently receive incapacity benefits have access to advice and support to help them consider a move into work, if they are able to do so.
Ministers do welcome all views, and I would like to thank you for your comments. I assure you that they have been duly noted. Information about Government services can be obtained through the internet at www.Directgov.uk.
Friday, 14 January 2011
Good day dear readers and a happy new year to you. Today sees a little departure from my usual rantings as it is the first day of One Month Before Heartbreak blog blast. This has been organised by the campaign group, The Broken of Britain who are raising awareness of the disproportionate affect the government cut backs are having on the disabled people all over the UK. One Month Before Heartbreak derives from the closure of the government consultation paper on reform of Disability Living Allowance on the 14th February, you can find their details at http://thebrokenofbritain.blogspot.com/. In support of this campaign I have chosen to delve a little more personally than I usually do and tell you about the day that changed my life, Wednesday 4th March 2009, the day I became disabled and hopefully this will highlight how anyone, and I really do mean anyone, can only be moments away from becoming disabled.
The day started off slightly differently the normal. I wasn't in the office that morning as I was travelling to a training course and it was easier to get to the train station from home than it was from my place of work, however I was delighted to be back in the swing of things as I had been off work for two weeks with an inner ear infection, that had given me dizzy spells and headaches, but after a dose of strong antibiotics I was well enough to take on the world with my usual vigour.
With my wife and nine month old daughter downstairs, I entered the spare bedroom that had been changed into an office and logged onto the computer to have an online meeting with one of the music leaders that I worked with. As a volunteer manager for a charity that provides musical opportunities for people with disabilities, I worked with a number of extremely gifted musicians, but I also knew what they had in talent, they usually liked in organisation and they detested paperwork and record keeping of music sessions and, true to form, he was late online so the meeting was somewhat truncated, but despite this, I knew I could rely on him to do what was required, and do it well.
After the meeting, I didn’t have time to log off and just rushed downstairs kissed my wife and daughter goodbye and went to catch the bus for the train station. No sooner had I arrived at the stop than the bus arrived, likewise as I arrived on the platform just as the train was pulling in, and I couldn’t have timed things better.
For many various reasons the training afternoon proved to be a bit of a non-event that I won't bore you with so we will jump on a few hours here.
I arrived home and spent some time with my baby girl before she went to bed at 7pm. While I got her ready for bed and laid her down for the night, my wife set about making the evening meal, it was a lamb cutlet with mash potato and veg. It was lovely and I complemented her on the quality of the meal; I then set the laptop on my knee to check emails and to make notes on a paper I was working on, on communication difficulties and people with complex disabilities. My wife went upstairs for a bath. The exact timing of the next hours events are somewhat hazy, I remember having a stinking headache, nothing unusual as I’d had those with the ear infection I had just got over, but there was something else, I felt very unusual when I touched my head at the site of the pain. I put my hand on the arm of the chair to stand up, but things didn’t feel right. For whatever reason, I decided to head upstairs, about a third of the way up the stairs, I finally realised what didn’t feel right, ‘feel’ being the operative word. I saw the handrail in my hand and realised I couldn’t feel it. Something was wrong, badly wrong. I continued up the stairs to be met by my wife at the bathroom door. She said something to me that I just wasn’t able to take in. ‘I’ve got a problem’ I said to her, trying to hide my own worry, ‘I’ve got no feeling in my arm’, I continued. Halfway through that sentence my speech began to slur. My wife noticed this too and remarked as much. I thought back to when I was a student nurse and had written a paper on strokes, this married with the FAST campaign running on the television at the time, I knew what was happening to me. ‘You’d better call an ambulance; I think I’m having a stroke’ I said to my wife, who acted immediately. Somehow, I found himself sitting on the bed in our bedroom, while my wife was on the phone in the office I stood up and walked, I did this for two reasons, one: to see if I could walk and, two: to have a look at my face in the mirror hanging on the bedroom wall. I could walk and when I got to the mirror I didn’t notice whether my face had dropped down one side.
When my wife came back into the bedroom, I sat back on the bed and asked for a pen and paper to write down phone numbers of people whom I was due to see the following day. Soon after, the doorbell rang and my wife went to let the paramedic in.
The woman in uniform entered the bedroom; she was the rapid response person, the person who does the first patient assessment before the ambulance comes. She asked various questions and carried out various tests on me, for instance, lifting his arms above my head, squeezing hands etc. The woman didn’t seem to be convinced I was having a stroke, and vocalised these doubts to the paramedic who arrived a few minutes later with the ambulance. Despite this I was sure of what was happening to me.
The ambulance driver asked me if I thought I would be able to walk downstairs and into the ambulance, I thought I would and carefully did so, at the front door I kissed my wife goodbye and headed down the garden path to the ambulance. Once inside, I was laid down on the trolley and immediately put on oxygen. Despite this, once in the ambulance, the full effects of the stroke began. I told the paramedic that I felt the need to close my eyes and go to sleep, but didn’t think that I should: the paramedic agreed and engaged me in a small talk conversation to keep me alert until we arrived at the hospital, it was obvious at this point that although I had walked into the ambulance, I would not be able to walk out of it and into the hospital. At this point, I was struck with the fear of what was happening and what person would I be after it, would I even survive it?
I was wheeled into a cubicle and the paramedic bid me farewell and good luck. I was left alone for a while and he contemplated my fate. My first thoughts were of my baby daughter, would I ever see her again, would the time an hour or so earlier when I’d put her to bed be the last time? If I’d have known it could be I would have made it last that little bit longer. Then I thought of my wife, it would be our second wedding anniversary in a mere two weeks time. I had surprise plans to take her to the city of Bath for a spa day and meal. Then I thought of the people who worked for me and who were relying on me.
The pain in my head that had begun this whole sorry event intensified, it was just about bearable but the pressure building within my head above my left eye socket was a horrible feeling. I was thinking about the possibility of my death: after all my father died at the age I am now, and my mother died in her fifties, was I destined to die young just as I had got my life together with a wife I adored and the daughter I had long wished for? I hadn’t had them long: life seemed so unfair.
My thoughts were interrupted by a nurse entering the cubicle to take my blood pressure and temperature, and seconds after a doctor came in and asked the same questions I’d been asked previously by the paramedics. It all began to be a bit too much. The staff were being nice and everything, but what the hell was happening? I mean, I knew what was happening, but why was it happening? I have never smoked, I gave up drinking some five years ago, I didn’t have high blood pressure or cholesterol that I knew of and I was thirty seven years old: hardly a prime candidate for a stroke.
The doctor did a few sensory checks seeing if I could see normally and whether I could feel touch and then produced a reflex mallet from somewhere and started hitting my arms and legs in various places. After looking ponderous for a while, he semi-confirmed my initial thoughts: I’d had a stroke. The only way to confirm it without doubt would be to have an MRI scan, which I would have tomorrow. I wasn’t told that I would be admitted as an inpatient, I sort of just assumed that I would, but to hear the confirmation in that manner I thought lacked a little tact. I was told I was going onto the ‘Acute Assessment Unit’, and they were just waiting for a bed to be ready for me. From there, a decision would be made on what would happen; whether I would go to the stroke unit at this hospital or whether I would be transferred to The John Radcliffe Hospital in nearby Oxford. I asked if somebody could call my wife, I knew she would be worried. I was handed a cordless phone and told to just hand it back when I was done. Easier said than done when your speech is slurred and you can’t get up from the hospital trolley you’re lying on. I looked on the phone’s display and saw it was 11 o’clock, carefully dialling the number; I planned what I was going to say. Although when it was happening I said I thought I was having a stroke, now phoning her to confirm that I had was a different matter. She answered the phone sounding tearful. I can’t remember the exact details of the conversation, but I told her what the doctor had told me and where I would be going and what was going to be happening. I remember suggesting that she contact her Mum and let her know what had happened, and my sister. I think she said that she had already phoned her Mum who was waiting for an update and would phone my sister straight away. I told her I loved her and to give our little girl a hug from me in the morning. She said she would and we both shed a few tears, unusual for me, especially in public but I never thought I would be spending the night apart from them, or of course, when I would spend the night in the same house as them again. I hung up; I wanted her to sleep, knowing her so well though: I knew she was unlikely to, wasn’t too sure if I would for that matter.
I laid back and sighed. There was a part of me that wanted my wife here with me; there was another part that didn’t want her to see me like this. My headache was getting worse; it felt like somebody was trying to squeeze my brain out through my eye socket. Of all the headaches I had had ever, this was easily the most intense. I asked for some painkillers when the nurse came to get the phone from me and she said she would check. Sometime later she returned and said I would be given some painkillers when the doctor assessed me when I went to the ward. It was disappointing as I don’t ask for stuff like that unless I really need it, but I could understand that giving me medication now could affect what the doctor on the ward decides. I tried to relax and I lost all concept of time, when they came to take me to the ward I had no idea what the time was, or whether I had managed to get any sleep, but I was glad to get out of casualty, but I had no concept of where I was and the route I had taken as I couldn’t keep my eyes open for too long because of the headache. I arrived on the unit and it was darker so was able to keep my eyes open that little bit longer. I was wheeled into a side room where a male nurse welcomed me onto the unit. I asked him for painkillers and was told I could have some after I’d seen the doctor on the unit. He began to ask me some questions, checking my personal details and stuff like that, it was really annoying me now. How many times did I need to answer the same questions? And I’m in considerable pain here. I closed my eyes and went through it again. I could hear the turning of pages, it sounded like there was a dossier of questions he needed to go through with me. I went onto autopilot, stopped listening really, I knew the answers to these questions and could just give the stock answers. I was pulled back to reality with the news that I was going to be moved from the side room into the main ward where I would be seen by the doctor. Great I thought; one step nearer those blooming painkillers. I was wheeled away, again with my eyes closed. My bed stopped, manoeuvred slightly and then was told the doctor would be there soon. To my amazement she was too. She introduced herself, but I didn’t catch her name as her next sentence immediately grabbed my attention and endeared her to me for all eternity, ‘can I get you any pain relief?’ I told her about my ever increasing headache, and she asked me to describe it, so I told her, ‘it feels like someone is trying to squash my brain out through my eye socket’. She told me she would get the nurse to sort out some codeine for me, that was music to my ears, she left the cubicle for a brief period leaving me feel relieved that somebody was actually going to help me deal with the symptoms rather than asking me questions over and over again. On her return she endeared herself to me further by apologising that she was going to ask me questions, some of which I’d been asked several times already tonight. I was at least grateful for the acknowledgement. She asked me if I knew what the date was, I said I knew but I didn’t know if we had past midnight or not as I had no concept of time. I was surprised to hear it was about 3am. I told her it was the 5th March 2009. She then asked me if I knew what her job was, I said she was a registrar, which she seemed to find amusing, she told me she was a doctor but definitely not a registrar. That will teach me for getting over-confident. The questions continued onwards, the she left again for a brief period to chase up my painkillers. When she returned she had a small glass of water and a teaspoon. She told me my pain relief was on the way but in the meantime she was going to test my swallow reflex, I would be given three teaspoons of water and if I didn’t manage to swallow them I would be put on a soft or puree diet. I was hoping and praying that I would pass this test. I love my food, possibly a little too much admittedly. I got the first one in my mouth and nervously swallowed. To my immense relief it went down without a choke. The second and third followed the first and I’d passed. I had never been so happy to swallow a tiny amount of water in my entire life. The questions continued, still no painkillers. She apologised and left again to go and chase up my painkillers. I didn’t care now, I knew I would still be able to eat properly constituted food and that was a great feeling.
The doctor came back in and told me she had completed her questions and wished me well, behind her, the nurse with my painkillers came in and nearly walked straight into her, but boy was I pleased to see him and those little white tablets. I eagerly swallowed them and closed my eyes, and that is all I remember of those first hours during and after my stroke.
Wednesday, 22 December 2010
Christmas greetings dear reader. As regulars will be aware I have been putting together a small study of how the implementation Employment and Support Allowance and announcements regarding benefit reforms affecting disabled people, have created fear and anger among those affected. It took longer than I hoped but unfortunately my paid job got in the way of this voluntary study, however I am pleased to say I have finished it and the text of the document appears below. Copies of the study will be sent to Mr Iain Duncan-Smith MP, Theresa May MP, Lynne Featherstone MP, Douglas Alexander MP, Yvette Cooper MP. Merry Christmas to you all and I shall return in 2011.
In the light of the comprehensive spending review in October 2010, there has been much concern amongst the disabled community with regard to the social care and welfare benefit reform and how it will affect disabled people, many of whom are unable to speak up for themselves. One of the issues causing the greatest consternation is how Employment and Support Allowance is being implemented now and will be implemented in the future.
As a social ethicist I have taken it upon myself to carry out some qualitative research with disabled people who contacted me via social media as my research subjects to ascertain current and future concerns. Here is a summary of my findings using a cross section of three case studies to explain why disabled people with various conditions are so concerned.
Last year my entitlement To Disability Living Allowance and Incapacity Benefit for Post Traumatic Stress Disorder was rejected after a twenty minute meeting with their doctor. This doctor had never seen me before. The evidence that was provided by my GP, psychiatrist and Community Psychiatric Nurse was totally ignored. If it hadn't have been for a fantastic volunteer advocate who guided me through the appeals process I don't go what I would have done. The appeal hearing panel took a grand total of four minutes to overturn the decision and reinstate my benefits. This seems to me to be causing a huge amount of unnecessary stress to vulnerable people not to mention the financial costs to the individual and the government and the considerable waste of time and energy. I have no problem with fraudulent claims being investigated and dealt with but not when genuine claimants who have suffered enough already are caught in the crossfire.
In 2009 I was diagnosed as having scoliosis and dural ecstasia , the former being a twisting of the spine, the latter is where the movements allowed due to my hypermobility has caused the spinal canal to widen, thinning the vertebrae from the inside outwards causing them to be angled (scalloped) rather than flat. This has already caused significant nerve damage to my right leg, causing loss of feeling and coordination. The symptoms: I walk with two walking sticks as this compensates for my right leg being weakened and prevents me from falling as often and as badly as I do without them. It also helps prevent me from twisting as much as this was beginning to cause damage to my left knee. The bones in my spine grind when I move causing severe pain so I spend most of my time under the influence of Tramadol (300-400 mg daily). I am able to walk my son to nursery when nobody else is available however this is extremely difficult even though the nursery is only about 300 yards away from my house. This journey takes me 30 min as I have to stop regularly for the pain. It is also my mobility budget for the day as it thoroughly exhausts me. Standing doesn't happen it is like having 30 knives stamped into the base of my spine and the muscles trying to hold me up with a spine that is twisted tire and cramp within seconds, although I can lean with my way mostly held on my arms for about 2 min before I have to give up. Sitting gives me mild relief but only for a short time in a normal chair as the weighty still on my back, I unable to sit on a specially bought couch with cautions supporting my back and my sides but even this is more a case of' as good as it gets' rather than comfortable.
Despite this on my Work Capability Assessment I scored zero. I am still waiting to see what my assessor wrote but they did not take any notice of my doctors or physiotherapists reports. The assessor asked me if I attended a pain clinic (I live in a rural area and such facilities are not easily accessible for me). I no longer see a physiotherapist or a specialist as my condition is inoperable and have been informed that physiotherapy on my back has a risk of deteriorating my condition further. It appears to me that the assessor saw this lack of intervention as me ‘not having a problem’. It also has to be said that the entire ordeal of the assessment took a total of fifty minutes, ten minutes of actual assessment and forty minutes of waiting without any of my support aids that I usually use to help me sit which meant by the time I was seen I was in an awful lot of pain
I was diagnosed with Chronic Fatigue Syndrome in the late 90s and despite areas of my life being really hard work I carried on working as long as I could, indeed when I left work in March 2010 it was my employer (which happened to be a local authority) that decided I was no longer fit to work before I did. As part of my claim for Employment and Support Allowance I was seen by assessor who lets say was inaccurate in their recording of the assessment in deciding what I was and wasn't able to do. I was also dismayed to see the report that a letter and a report from my GP and my physiotherapist were completely disregarded and described as' irrelevant'. Before I was declared unfit for employment my work consisted of carrying out and reading numerous assessments of individuals in need of support, therefore I find it incredulous that documentation issued by fully trained healthcare professionals are disregarded with such contempt in favour of an assessment that lasts fifteen minutes at most. You will not be surprised to learn I only accrued six points of the required fifteen to receive Employment and Support Allowance, and am still going through the appeals process the stress of which is deteriorating my condition further.
It is firm belief that these three cases are the tip of an extremely large iceberg, especially considering that these cases have only been picked up by me as an individual in my spare time. As a disabled person myself I am all too aware of the vulnerability, fears and worries people are experiencing on a daily basis.
I know Mr Ian Duncan-Smith MP has declared on numerous occasions that those of us who are genuinely disabled have nothing to worry about with regard reforms, but with the additional announcements that Employment and Support Allowance will only be available for twelve months to any claimant and that Disability Living Allowance is to be replaced, the experience of disabled people going through the system indicates anything but, and it feels very much like there is a culture of undeserving poor developing in the United Kingdom today which, in my opinion, is likely to generate and grow an underclass that will be extremely difficult to claw back.
I am aware that national charities also have stories similar to ones that I have put forward and I hope that all of us are listened to. We are all aware that cuts have to be made, we are all aware that as an nation we have a large national deficit that must be addressed, however does it have to be so hard on the members of our community who are at their most vulnerable, while on the surface those who are least vulnerable seem to be less harshly treated?