About Me

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I have been working to support disabled people to live as independently as possible and realising their individual potentials for over 20 years. I am qualified in Health and Social Care Management and Ethics and Social Welfare. All blog entries are my responses to issues I see affecting those I support and indeed myself as I joined the disabled community after surviving a stroke.

Wednesday, 22 December 2010

Are We Really In It All Together?

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.

Graeme said:

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.

Holly said:

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

Mandy said:

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?

Wednesday, 8 December 2010

Great Scott, Have We Gone Back To The Future?

Greetings dear reader. Again I have neglected you for some weeks, unfortunately real life intervened and I have been unable to update as much as I would have liked.

A few weeks ago, in a moment of nostalgia, I settled down in front of the TV to watch the 1985 classic film, Back to the Future, starring Michael J. Fox (I look forward to having a go on a hoverboard in 4 years time), and since then I've been feeling a little like Marty McFly myself in as much as it seems I've gone back in time. Why are you feeling this way? I hear you all ask. Well its because, in my opinion our political and social attitudes towards disabled people have regressed alarmingly.

Why do you think that? I can hear you ask, well this opinion is based on many reasons, but two main ones. Firstly the upcoming benefit reforms that will significantly reduce the quality of life for people with disabilities. I'm not going to talk about this particularly as yesterdays blog by campaign group The Broken of Britain put it far more eloquently than I can, and you can read this here http://thebrokenofbritain.blogspot.com/. Already as a result of the proposed reforms highlighted in the comprehensive spending review in October and the proposed changes to Disability Living Allowance, a culture of deserving and undeserving poor is becoming more and more apparent. An example of this can be seen on the comments made by members of the public on online media sources reporting these changes. A recurring comment goes along the lines of 'If you are genuinely disabled then nobody is against you getting benefits'. I assume this is meant to be reassuring to us disableds, but yet again we are left to defend our conditions and our disabilities, prove what we can and can't do and, as is shown the, the system used by those who decide who is and isn't disabled can be flawed.

My second reason, and no less concerning is what seems to have become socially acceptable in comedy, and how it uses disabled people. Here I have to eat humble pie, when I wrote some weeks ago about the mother of a disabled child who was unhappy with elements of comedian Frankie Boyle's stage show. I hadn't and still haven't seen the show but am very familiar with his work on TV shows like Mock The Week from which he grew a reputation for having a biting humour that was prepared to plumb depths for humour, and i said as much, that if you were familiar with his work you knew what to expect. However after seeing his channel 4 TV show, Tramadol Nights, he is still plumbing the depths but I can see what the mother was getting at as it now appears to be more shocking than funny, especially the humour aimed at those with mental health problems.

Frankie isn't the only one though. Morgana Robinson, is relatively new to TV comedy, but on her, The Morgana Show, ironically also on channel 4 right after Tramadol Nights, she has a character called Gilbert who is a teenage boy with learning disabilities making his own amateur TV shows, which again for me, fails badly on the humour scale, but as I trawled through Twitter while these programmes are on, I was surprised to find opinion was split and a significant percentage of people were finding these programmes funny. here is a clip of Gilbert from the Morgana Show and you can decide for yourself. http://www.youtube.com/watch?v=voCE_LjG3zE but again on Twitter opinion was split.

Now I class myself as a bit of a comedy-geek and have sat through some very good and very poor programmes, and I like to give new shows a chance so I'm clamouring to have these shows taken off the air, nor would I as I don't believe in censorship (next stop Wikileaks). My comments are more on a significant number of viewers finding it funny and acceptable.

Having disabled characters in comedy is brilliant when it's done well for example Lou and Andy in Little Britain and Brenda from The Office played by Julie Fernandez, where the disability wasn't the joke (or in Andy's case the lack of disability) but the social interactions with disabled characters was the source of the comedy. Of course the two characters I have cited as doing it well have physical disabilities and the Gilbert character has a learning disability, so maybe it isn't possible to use learning disabled characters in comedy without it coming over as mocking and derogatory.

Either way, it does seem we have gone back in time where people with disabilities are becoming easy targets politically and socially, so I'm off to see if I can get a De Lorean with a flux capacitor with my Disability Living Allowance while I still have it.

Friday, 12 November 2010

Benefit Shake Up - Out of Touch With Reality???

Dear readers, I fall upon your mercies in humble apologies for my absence from my blog in recent weeks. I have however been awoken from my cyber-slumber by Ian Duncan-Smith's announcement regarding those refusing to take up employment having their benefits suspended for up to three years for the serial work-shy.

I can see why this could be a good idea, after all the nation is attempting to reduce the financial deficit and as a taxpayer and blooming hard worker, I do not want to be supporting somebody who chooses not to work. However I am still recoiling in horror at the potential injustice that the Westminster decision makers are either unable or unwilling to see.

I watched Mr Duncan-Smith yesterday once again say, those who are disabled and unable to work have nothing to worry about, with the words "We are not in the business of punishing people who can't take work." has he passed on this message to ATOS?

For those who don't know who ATOS are, they are the people who are carrying out Work Capability Assessments for Employment and Support Allowance, this benefit is for those with disabilities and long term health conditions that impacts on their ability to work.

At the last count 70% of ATOS decisions that were going to appeal tribunals are being overturned. Faced with that kind of statistic, you can forgive people who are unable to take work for issues regarding health and disability for regarding Mr Duncan-Smith's words as somewhat meaningless compared with the reality of what they are having to go through.

Responses in opposition to this announcement of benefit punishment has simply been based on the lack of work available, completely missing the point of how disabled people who are clearly unfit for work are already having to fight to keep what they receive and have been described by the health care professionals who are familiar with their cases as unfit for work (as opposed to a 20 minute ATOS assessment that in the majority of cases say incorrectly that they can work), now there is the added risk of a) being told you can work and b) losing all your benefit if you refuse to take work that you are not fit for.

I am just putting the finishing touches to a number of case studies I have received from people who have been negatively affected by the Work Capability Assessment that I plan on sending to Ian Duncan-Smith and other relevant people where I shall raise these concerns. I'll let you know what happens.

Wednesday, 20 October 2010

We're In It Together, Its Just Some Upto Our Toes while Others Are Up To Our Necks - Response To Cabinet Spending Review 2010

On 20th October, the Chancellor of the Exchequer George Osborne delivered his spending review designed to reduce our national deficit. In the early throes of speech Mr Osborne stated the better off will pay and lose more proportionately. Now in the speech itself there was very little detail as to what the real life effects of the cuts made would be on the public on the receiving end (however there appears to be a former rainforest of supportive documentation, but one that stuck out horrendously to me was people on state paid sick pay will only be able to claim it for 12 months apart from extreme cases.

Without going through the supportive documentation, it would be fair to assume this means Employment Support Allowance, about which my concerns are well known among my followers and this appears to be another slap aimed at the work-shy but hitting those in genuine need in the process.

I will be looking through the documentation when I can to find the definition of an 'extreme case' based on the fact that I consider many of the stories I have received, it seems many extreme cases are being refused Employment Support Allowance in the first instance as 70% of failed applications are overturned at appeal. So on the face of it, it seems that months of battling to receive, what for many is a genuine entitlement, you are then time limited on your right to receive it.

Don't get me wrong, the deficit needs to be reduced, I'm not an economist so am not best placed to advise how this should be done and benefit fraud is wrong and should be addressed, but on the face of it this hardly seems fair and proportionate to me.

Thursday, 14 October 2010

I Could Write An ESAsay on Work Capability Assessments

Good day dear readers, I must apologise for the lack of recent blog, but although I took a temporary leave of absence from my blog, the problems with Employment Support Allowance and Work Capability Assessments remains, in fact they seem to be getting worse.

It's ironic that last week I was giving a seminar at my local college to a group of health & social care students on social and medical models of disability, and during this seminar I had something of an epiphany, we are returning more and more and more to the medical model at the expense of disabled peoples social needs and the Work Capability Assessment is a clear indication of this.

Now I have already written about my concerns with ESA and WCA procedures in my blog entry "Who Are The Real Benefit Cheats?" and with some of the stories that have come to my attention since then my concerns begin to grow.

I grow more and more concerned every time I hear of yet another disabled person being told they are fit for work when they can barely get out of bed. Its causing such stress to those getting caught in this trap that it will be putting more strain on our doctors (who are largely ignored in the ESA and WCA procedures) and their family units.

I am currently preparing a dossier of apparent ESA injustices which I plan to send to my local MP, Mr Justin Tomlinson, Work and Pensions Secretary Iain Duncan Smith Mr Ian Duncan-Smith, Ms Yvette Cooper MP Shadow Secretary of State for Foreign and Commonwealth Affairs and Minister for Women and Equalities and Mr Douglas Alexander MP Shadow Secretary of State for Work and Pensions and Minister for Women and Equalities.

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Thursday, 30 September 2010

I'm Close To Despair Is It Just Me!?!

Good day (evening) dear reader. A late blogging today for which I most humbly apologise, however should I be blogging at all? According to Nadine Dorries MP for Upper-Own-Arseville (ok not strictly true but she should be), I shouldn't be blogging or tweeting or facebooking, however it is okay for me to speak apparently.

Now I must confess some of my favourite disabled bloggers were significantly more aware of the lovely Nadine than myself, and assure me that she has a habit of occasionally removing her head from her own rectal passage to spit out her ill-informed points of view. In fact I had no idea who she was at first, maybe I considered her opinions not worthy of my attention. Whatever the reason I was put onto this blog and really couldn't believe that this person had been elected to our Parliament.

She begins by complaining about MPs blogging and why they shouldn't do so, she did of course put this on her ...erm ... blog.

She then turns her attention to Twitter, despite not having a twitter account herself she has made herself the Chief Commissioner of the Twitter Police by unilaterally deciding what is an appropriate tweet rate (best term I could come up with). Then in a thinly veiled attack on disabled tweeters she writes:

"Is there such a thing as Twitter addiction? How can anyone live a normal life who can do that? Surely these people cannot be in employment because if they are, how can they work? if they aren't then it's time they got a job which involves being sat at a key board because there's nothing much up with their fingers, brain or attention span!!".

Oh dear, where do I start?!? No mention of assistive technology required for some disabled people to be able to use a computer, no talk of screenreaders required by visually impaired computer users, no mention that many disabled people have one computer set up specifically for their individual use with the adaptations required for their individual needs that most companies would shirk away from. She also fails to realise that many employment agencies and services are on Twitter many of them attached to our very own government. And this person represents the opinion of her constituents, it's enough to make a beleaguered disability expert despair.

This followed on from a radio phone-n show I heard on BBC 5 Live about people with ADHD (Attention Deficiency Hyperactivity Disorder) and some research that had indicated that there MAY be a genetic link to the condition. Suddenly everyone with access to a radio and a telephone were experts on the subject. I found it hard to believe some people believe ADHD does not exist as a condition and is purely down to 'bad parenting'. Hmm, I wonder what study, experience wisdom some of these comments came from. Yes I have seen examples of bad parenting of children with ADHD, but not necessarily from bad parents, but more often from good parents who had come to the end of their tether after years of unsupported parenting and education. Another old chestnut that came out was 'it didn't exist 20 years ago', erm it probably did but it wasn't being diagnosed. You don't hear the argument (thank goodness) about HIV and AIDS which is also a recently diagnosable condition.

What I ask dear reader is: Is it just me!?! please tell me there is more than me who doesn't get it when our MPs and members of our general public come out with such ignorant disablism.

Thursday, 23 September 2010

ESA Assessment: Who Are The Real Benefit Cheats

Greetings dear reader. And this week I'm about as happy as a Commonwealth Games commissioner, this may not be too surprising because I am rarely in the best of moods, but today I have a particular bee in my bonnet and that bee-ing (sorry) Employment Support Allowance.

Now my regular readers (both of them) will be aware I have long been suspicious that the cutbacks in benefit spending would hit genuine cases of ESA and DLA claimants as well as, and worst case scenario, instead of the alleged benefit cheats we hear so much about. Well this week my suspicious mind kicked into overdrive when my own dear wife Mrs Disability Expert, got her papers through regarding her appeal against ESA being refused, and the ensuing phone call to the Department of Works & Pensions. This is following on from her medical examination where her original claim was turned down.

Don't get me wrong, when you have Chronic Fatigue Syndrome (as she does) you do spend most of your time justifying your condition and you are not just a lazy git, so this is not the bit that concerns me most. The half a tree worth of paperwork that arrived for her to go through in preparation of her appeal hearing, was my first concern, having read the paperwork I barely recognised the description of her condition and her abilities and her difficulties that was declared in the assessors report and to compound all of this she was informed in this report that she only had 6 points of the 15 required to qualify for ESA.

Now I have worked in this arena for over 20 years and my wife is also a qualified social worker, so have both done our fair share of assessments over the years, but of all the paperwork she did have, she wasn't sent a copy of the assessment criteria that points are awarded for, so she phoned up and asked for a copy only to be told it was available on the internet but they didn't have copies of it. Now I have found this at:


I will leave you to make your own judgements on how useful that is but I once I had navigated my way to the required bit of the website and compared it to the assessors report I couldn't believe that 6 points was her result. I will add that I'm not sure how accessible the website is for people with disabilities.

Having moaned about this on twitter I have been contacted by people who have similar issues with trying to claim ESA, many of whom have hidden disabilities, as in many cases Chronic Fatigue can be. Another worrying trait I found in the report is one particular line of text and I quote 'enclosed was a letter from her Doctor stating that he believed she was not fit for work at present, this is irrelevant'. WHAAAAAAT?!?!? Sorry Doc all those years of study and your PhD is irrelevant. The supporting report from her physiotherapist has been conveniently cast to one side too.

So we have an assessor who has shall we say 'recorded inaccurate information' on the assessment report, has disregarded completely a letter from a doctor who has seen her and treated her condition, not just seen her once and has been given a raft of paperwork to sort out while the assessor has an entire department to assist with his report. This smells and it smells big time and the more I start digging the greater the stench. I'm beginning to wonder who are the real benefit cheats?

Feel free to contact me on twitter @disabilityxpert or on my Disability Expert page on Facebook if you are having similar issues.

Tuesday, 14 September 2010

My Response To Ofsted Report on Special Educational Needs

Firstly I must apologise to my regular readers (if I have any), for my lack of blog last week. I was a bit poorly sick and couldn't raise myself to a level of energy to tap my keyboard. In lieu of that I am blogging on a Tuesday this week rather than Thursday because of the news that has come through today that Ofsted are reporting too many children are being tagged 'special educational needs' and that children are falling behind due to poor quality teachers. This ties in with the recent opening of a specialist college in Wales comprising solely of autistic students. I had the pleasure of being involved in the opening and early organisation of a similar college in Swindon some 5 years ago, and was amazed to find how many of these young people had fallen through the net and not had the relevant support from their schools until they were towards the end of their compulsory education, and only then after parents have endured long hard battles with the authorities to acquire support for their child.

Ofsted have claimed that 25% (1.7m) of children in England would not be labelled 'special educational needs' if teachers focussed on teaching all the children. Christine Gilbert, Ofsted Chief Inspector stated 'Although we saw some excellent support for children with special educational needs and a huge investment of resources, there needs to be a shift in direction'.

I agree with Christine Gilbert there does need to be a shift in direction but perhaps not in the way she believes. The shift in direction should not come from reducing the support provided to children who require supported teaching (and I use this term because I personally hate the term 'special needs', because every child has their own individual special needs whether they are disabled or not. The shift should be from rating children based solely on academic results and looking at the bigger picture, the child's emotional development, social intelligence (what used to be called common sense in my youth and many other factors that make up a child's development. We are not all academic geniuses (and to prove it I had to look up the plural of a genius) and we shouldn't be tagged as 'special educational needs' or given any other label on that basis. The emphasis should be on providing our children with an education, not just teaching them how to pass tests and exams

I cringed this morning when I heard the news headline because although I agree there should be changes, I fear the wrong tree is being barked up. The report will sit particularly uncomfortably with the parents of children with conditions like Asperger's Syndrome who are still battling to get the relevant support for their child, but instead of looking at that, Ofsted are looking at the other end of the scale.

Looking positively, removing children who have been labelled 'special educational needs' will unclog the system, but based on past experiences, I do not believe it will be done without casualties and children in genuine need not receiving the supported teaching they require, but I solidly believe that my own recommendation of giving children a more holistic education and not just based on test and exam results would see a dramatic reduction of 'special education needs' referrals rather than reducing the list via more testing.

It is only 7 years ago that we were told Every Child Matters, from that the Every Disabled Child Matters campaign formed in 2006. Let us not forget that every child disabled or non-disabled, academic or vocational, boy or girl does indeed matter, and not just for statistics, tests and qualifications.

Thursday, 2 September 2010

Food For Thought - Malnutrition in UK Hospitals

A rather shameful and disturbing issue was raised again this week by the good people at the charity AgeUK about malnutrition in UK hospital, a problem that is more prevalent in older patients. Their report 'Still Hungry to be Heard' struck a chord with me for two reasons, firstly I spent many years working on a hospital ward where the majority of the patients were in the latter stages of dementia and organic mental illness, where I was struck at the number of issues that occurred during meal times, and secondly, when I had my stroke in 2009 I was hospitalised in a specialist stroke unit where the majority of patients were in their later years.

AgeUK tell us 185,446 of us left UK hospitals in 2008/2009 malnourished, in 2007 239 patients died due to malnutrition in 2007 (although more are suspected) and those aged 0ver 80 years of age are statistically more likely to become malnourished.

My experience of working on a hospital ward relevant for this age group pre-dates these statistics by some 10 years, however I had some major concerns at that time about suitable diets, volume of food consumption and the recording of food and fluid intake of the patients on the ward which I continually raised with my superiors, but as I was merely a young health care assistant at that time, my concerns mainly fell on deaf ears.

The meals that arrived were not chosen by the patients as their conditions meant that in most cases they were unable to exercise choice so a member of staff would contact the kitchen via the telephone and a trolley of enough food would be sent up to the ward to be distributed among the patients. Most of the contents were chosen by the staff and would be soft or puréed options, so we didn't actually know if the patients liked the food we were trying to give to them.

Not a huge amount of attention was given to nutritional values of the food the patients were given, the quantity or the provision for special diets.

As many as eight patients would require varying degrees of assistance to eat their meal with usually two members of staff available to provide that assistance, a number that didn't add up to an efficient and fulfilling meal time as the emphasis was very much on time, hence mealtimes were almost like a conveyor belt or patients appearing in front of the stressed staff member trying to feed them as quickly as possible.

There was also the contributory factor of the patients actual illness making meal times difficult, where some people would eat and forget they had, others had thought they had eaten but hadn't, some conditions would create an obsession with food to the extent that once they had eaten their meal they would wander around the other patients grabbing handfuls of their food. Others would refuse to eat as a protest at what was happening to them.

This made nutritional intake almost impossible and many of the patients on the ward would lose weight although this was extremely difficult to quantify as weighing patients with such advanced stages of dementia is extremely difficult as they often would become confused and distressed while you were trying to do so. As,many if not all of the patients would never be suitable to be discharged from hospital that became the norm.

Move onto 2009 when I was a hospital patient on a ward surrounded by older people and I could experience patient mealtimes from the other perspective and things didn't seem to have improved much, granted as I had relocated it was a different hospital to the one I had worked in and the ward I was admitted to had stroke survivors rather than patients with latter stage dementia but there are lots of parallels that maybe drawn with regard to assistance with food, puréed diets and the suitability of the food.

The only significant improvement I could detect was that a record was kept of what patients had eaten although the recording of quantity was a bit haphazard for instance 'ate half prtion of mash potato' when no mention was made of what a full portion would be, so the figures put forward by AgeUK are disappointing and shameful but to me, not surprising.

So what is the answer? Well AgeUK have proposed a seven step plan to help address this issue

Step 1 Hospital staff listening to patients, relatives and carers. We know what food we like or dislike, what food we can’t eat and whether we have small or large appetites. We need ward staff to ask us what our needs are at mealtimes and then act on what we say. If we, or our relatives and carers, are not consulted about our dietary needs we often end up with food that we simply cannot eat.

Step 2 All ward staff must become food aware. Missing a meal is just as important as a missed medication. Ward staff need to understand that every meal is important and it is not acceptable for us to miss even one meal. If we do it increases our chances of becoming malnourished.

Step 3 Hospital staff should follow their own professional codes and guidance from other bodies. The Department of Health’s core standards on food and help with eating state that we should get food suitable to our diet, as well as any help we require to enable us to eat our meals.

Step 4 We must be assessed for the first signs of malnourishment on admission and at regular stages during a hospital stay. Thirty per cent of us enter hospital already malnourished. It is essential hospitals detect any existing malnutrition, if they do not we will not get the help we need to get better. To detect whether or not we are malnourished, hospitals need to screen us all, upon arrival, for the signs of malnutrition.

Step 5 Hospitals should have 'protected mealtimes'. When we are eating our meals we do not want to be told that a doctor wants to talk to us or take a blood sample, or that we have to stop eating so we can go for a scan. We want the ward we are in to use protected mealtimes. This means that all non-urgent activity, such as ward rounds, tests etc., do not take place during mealtimes. This benefits us, as we get to eat our meals in peace, and the nurses benefit, as they have more time to help us at mealtimes.

Step 6 Hospitals should implement a 'red tray' system and ensure that it works in practice. Those of us who need help with eating should receive our food on a red tray (or some other colour) that allows ward staff to easily recognise that we need extra help at mealtimes.

Step 7 Hospitals should use trained volunteers where appropriate. Trained volunteers can provide us with the extra support we need at mealtimes, which could mean making sure our food is cut up and placed within our reach, or sitting with us so that we have company and
encouragement while we eat.

All of which are great ideas and I believe would work in assisting to reduce the number of cases of malnourishment in our hospitals, however I feel it needs to go a little further than that. The first step of feeding patients comes from the budget holders and the kitchen staff and the work needs to start long before the tray of food appears in front of a patient.

Also where there is the added component of wards with a high percentage of patients with dementia, I would ask that staff have nutritional training. I am aware that advice can be given by nutritionists on what should be eaten however this will in all likelihood bear no resemblance to the reality of a mealtime on such a ward. Members of staff with experience and the right training can help to ensure the right steps are taken to try and address this issue.

I will be watching carefully to see if any hospitals take up AgeUK's plan and what differences, if any, are made. I would also say that malnourishment in hospitals doesn't stop at older patients so if it has happened to you, no matter what your age, make your voice heard.

Thursday, 26 August 2010

It Seems I Study Fiscally

I'm feeling rather pleased today, is it because I have taken some well earned time off this week? No! Is it because of the weather? Most definitely not! Is it Penry the janitor? Sorry Hanna Barbera but it isn't even the legendary Hong Kong Phooey that has pleased me so much. So what can it be that has put this usually grumpy blogger in such a good mood? Well it seems I and a number of my fellow disabled bloggers were right all along.

Yesterday the Institute of Fiscal Studies published its analysis of George Osbourne's 'progressive' budget. At the time the budget was announced many of us raised our eyebrows, okay since my stroke I can only raise my right eyebrow but I still did my best. Some of us really couldn't work out how a budget that promised to hammer people on benefits and more pertinently those in receipt of Disability Living Allowance, could be progressive and fair. How could this fit in with a fairer society?

Well we got our answer yesterday... it isn't. The Institute of Fiscal studies, who the government listens to when it suits stated "once all of the benefit cuts are considered, the tax and benefit changes announced in the emergency Budget are clearly regressive as, on average, they hit the poorest households more than those in the upper-middle of the income distribution in cash, let alone percentage, terms".

Not surprisingly the government has decided that this is incorrect, although oddly it they don't argue with the figures, but what they do say is that it hasn't looked at the bigger picture as, as Mr Nick Clegg stated "It does not include the things we want to do to get people off benefits and into work," and "If you just look at who is receiving benefits then, in a sense, you don't ask the most important question of all, which is how you can relieve poverty and make Britain fairer by getting people off benefits and into work." Now who isn't looking at the bigger picture Nick?

Doubtless there is a percentage of people who are happy to collect their benefits no questions asked, but research regarding disabled people doesn't bear this out Nick. As I wrote a few weeks back in my blog entitled "Dispelling the Disability Myths" in 2008 there were 6.8 million disabled people in the UK of which 3.3 million of us were then in work and of those that didn't a further million would like to work given the chance. This means that giving disabled people employment does not mean they are no longer disabled, therefore not only should still qualify for Disability Living Allowance, but their continued employment depends upon it.

Anyway, I saw this months ago so can with justification be very pleased with myself as the Institute of Fiscal Studies has shown I was right. Don't get we wrong readers, we're still all screwed for the foreseeable future, but the important thing is that I was right ... now if only I could get the likes of Mr Cameron, Mr Clegg and Mr Osbourne to listen to me.

Thursday, 19 August 2010

100 Days of a ConDem Nation

The Conservative/Liberal Democrat coalition government reached its first landmark this week, one hundred days in power, or three and a bit months as most of us would call it. Once the soldiers of misfortune were chosen to take up their posts in this unique government, this period of power has been dominated by two issues, cutbacks on public spending and the launch of the 'Big Society'. I feel its a bit unfair to judge what has happened within this period of time but I'm going to do it anyway, because: a) that's just the way I roll, and, b) its an unfair world, get over it.

Now although I might not appear so, I am not very politically motivated, that is to say I believe in a society where everybody can get a 'fair crack of the whip', and I don't believe any of the political parties are capable of providing that, so I have no political axe to grind as I treat them all with equal contempt, but I have to say I was surprised when Cameron and Clegg joined forces in May, I didn't think their brands of politics complemented each other, however they do say opposites attract and I was intrigued to see how things would work out, and I still am.

We all knew difficult changes were ahead of us, the country was financially on its ar... in trouble for whatever reason and it was inevitable that public services were going to bear a large amount of financial changes to help pay some of the deficit. This shouldn't necessarily be a bad thing, it is commonly accepted that there is a lot of waste in the public sector, however this appears to have been largely overlooked and the onus has been put on so-called benefit cheats, and reforming the assessment process for people claiming Disability Living Allowance. has this challenged the benefit cheats it has been designed to catch? Not that I have seen, all it seems to have done is create panic amongst the most vulnerable members of our society (big or otherwise). I hate benefit fraud as much as anybody else, not only for the financial aspects but also because it stigmatises disability and creates suspicion around disabled people where we have to constantly justify ourselves.

And then we come to the Big Society, well I hate to be down on this because I would love it to work, but as I said earlier, its an unfair world and I don't think it can work. I was listening to Radio 5Live yesterday who had commissioned a survey on people's willingness to volunteer; the pool indicated that almost half of the population consider themselves too busy to volunteer particularly in the age group 35-44 years old. I really don't believe you can run a 'Big Society' without engaging the vast majority of society; I would say about 75% minimum to have any kind of noticeable effect, and I find it hard to believe their can be a swing of opinion as dramatic as that, it could even be argued that kind of statistical swing could be a change in culture which would probably take many years to bring about.

Okay so its early days a hundred days is nothing really, and we know things couldn't remain as they were, but so far it just looks like selective victimisation on those with the least means of being heard and replacing services with well meant intentions with little or no foundation. I want to be proved wrong so if anyone can please feel free to do so.

Thursday, 12 August 2010

The Dawning of The Unfair Society

Its been difficult to select the topic of my blog this week. I would have liked to have continued on the positive theme I followed last week, and saw a wonderful short film made by William Mager called Deaf Mugger, I strongly suggest you look up this film on Youtube, it will be the best 2 minutes of your day. However the quality of the film speaks for itself. And then there was PM Direct earlier this week, which I found quite painful viewing (unless you muted the volume and made up your own words to go along with David Cameron's hand gestures which made it quite entertaining), and comments made on welfare reform and benefit cheats. So I'm back to the negative again.

I'm fed up of hearing of politicians bleating on about a fairer society, it didn't wash in the pre-election debates hence the hung parliament, and its not washing now. I have yet to see evidence of how society is going to become fairer. Lets have a look at what's happening.

I read with dismay, but not surprise the Oxfam UK Poverty Post this week, which made an interesting and frankly believable comparison of money spent on benefit cheats and that spent on catching tax cheats, and how much the capture of fraudsters could potentially net from each category. To quote Oxfam: 'it is estimated that the total tax gap is about £120billion. Admittedly, maybe predictably, the government’s figure is closer to £40 billion. In contrast, benefit fraud and official error combined cost £3.1billion last year.' Hmm so not fraud alone. But Oxfam don't finish there: HMRC spent the grand sum of £633,284 their anti-tax fraud advertising campaign last year with nothing spent in the previous 2 years as opposed to £17.5million spent tackling benefit fraud over the same 3 year period.

That doesn't speak of a fair society to me, and who has been passing comment on this benefit fraud crackdown? non-other than Chris Grayling, Conservative MP for the not exactly poverty stricken constituency of Epsom and Ewell, a man possibly best known for comparing the Moss Side area of Manchester to The TV show The Wire and according to press reports during the UK politicians expenses scandal claimed for a flat in Pimlico, London when his constituency home is a mere 17 miles away, as well owning a 2 additional properties in nearby Wimbledon claiming over £100,000 of taxpayers money in the process. It was also reported that us taxpayers paid for him to have his flat redecorated and refitted and he 'avoided' the upper expenses limit by submitting the claims over 2 years.

For each incident the press reported Mr Grayling had explanations, he claimed that he used the flat when "working very late" because he needs to "work very erratic and late hours most days when the House of Commons is sitting.', and that 'both the water and electrical systems failed "leaving the place needing a major overhaul'. All of which is possible and it is not for me to second guess the validity of his expense claims, yet I can't help but wonder if his claims were subject to the same scrutiny as benefit claims, would they have passed? I somehow doubt it.

So forgive me but when the countries most vulnerable citizens have their backs against the wall in a benefit crackdown full of changing rules and uncertainty, I am not filled with the glow of the dawning of a fairer society, in fact quite the opposite.

To view Will Mager's Deaf Mugger video

To view Oxfam's UK Poverty Post

Thursday, 5 August 2010

Being Positive With Your Disability

With the changes that are afoot in the welfare system at the moment it is easy to get drawn into get drawn into the negativity currently circulating the subject of disability. And I feel this is because, as a disabled person, I have to defend myself against people's opinions on what they think I can and can't, should and shouldn't be able and shouldn't be allowed to do. This week I have decided the negativity and worry can go to hell and I'm going to try and be positive, because there is a lot to be positive about when you look for it. In fact I'm not going to look that far because I have been involved in the positive aspects I'm writing about - self indulgent? maybe it is but positive nonetheless.

With the start of the new football season almost upon us (please don't stop reading you don't have to like football to continue), how many of you have actually heard of powerchair football? How many of you are thinking 'how can you play football in a powerchair?' Well you can and not only can you but there is a national league where you can challenge teams from other areas... and it rocks.

One of the proudest moments of my life was when I was a founder and first chairman of Swindon Rockets Powerchair Football Club. Not surprisingly I wasn't working with Roman Abramovich type budgets, in fact we had next to nothing, but what we did have was passion and determination to start something good. Thankfully we had the support of our county FA who bought into the idea and helped us, and the support of The Wheelchair Football Association (yes there is one) who were delighted to help another team develop, (there were about 8 clubs around at the time in England).

I stood down as chairman of the club in 2008 having put the structure in place to confident the club was sustainable and I had the pleasure of watching them take part in a tournament against a team from Cornwall a few weeks back, they all had their powerchairs that have been designed to play the game (I've tried driving one and they are fantastic, 0-12 mph at the flick of a wrist), they had their proper kits and everything they needed .. they were a football club, even though they lost by a single goal to one of the top clubs in the country, I was proud because the players had taken ownership of the club, from 10 year old players to 50 year old players. last season was the Rockets first season playing in the national league and they finished 3rd in division 3, and they have high hopes for next season. The game of powerchair football is also growing extremely quickly with teams popping up all over the country, but if there isn't one near you, try setting one up, its not easy but its worth it.

I am now director of Music Alive, a Wiltshire based charity that provides access to music and music technology for people with disabilities. The music industry is extremely difficult to crack but can be extremely rewarding once you do. We have managed to unearth some major potential recently with a couple of guys who write and perform their own stuff, some of it full of the heartfelt angst we all feel from time to time, some of it a catchy musical cheese-fest but all of it original.

I had the pleasure of being the compere at a concert at Swindon Arts Centre a few weeks ago where some of our singer-songwriters did their stuff and I was extremely proud to be stood in the wings watching an audience of 200 people enjoy what they did. Videos of the performance can be found on Youtube if you look for Music Alive Big Hat Cabaret.

Now I haven't written this to say how great I am (but if I could write my own reviews I would), no, the reason for me writing this is simple. Nor am I saying we should all start playing powerchair football or writing songs. We, as a disabled community are often pigeon-holed and on the back of that assumptions are made on what we can and can't do, which brings me back to my first point about feeling the need to defend myself during the welfare reform.

My message is, try not to let the system grind you down, be aware of your disabilities without forgetting your abilities and be aware of your physical limitations but don't be afraid to challenge them from time to time, and not because a health assessor wants to see if you can, do it for your own benefit, who knows what you might find yourself doing.

Thursday, 29 July 2010

Big Society or Blag Society? When is A Volunteer Not A Volunteer?

It's a bit of a double blog this week... 2 for the price of one, you lucky readers. Although they are interlinked because my issues this week are the Big Society and also public cconceptions of volunteering.

A week and a bit after the launch of David Cameron's 'Big Society', I'm sorry if I'm being a bit stupid but I still don't see how it's going to work... and as a charity director I feel I should know how it's going to work. So either I am at fault or the Big Society concept is.

I mean I do get the general gist of we should all do voluntary work to build stronger communities, and I agree with that but this is hardly revolutionary thinking. In amongst all the Big Society discussions I have seen several people on various social networks talk about people who have been on long term benefits should do voluntary work or have their benefits stopped.

This shows a basic lack of knowledge of what a volunteer is, the moment you put a financial punishment in place when something isn't carried out that is not a volunteer. However this, to my knowledge, hasn't been touted by the government as yet, but is a leap that has been made by certain members of the public.. so maybe I'm not the only one who doesn't get it? Just to tidy up this point for
the people that have been discussed on the social networks appear to be based on the stereotypical 'can't be bothered paid to stay in bed all day blah blah blah ... ' if these people do exist (and I'm sure there are a few but not as many as people imagine), what have I done to deserve them becoming my responsibility? If they won't work for a wage what makes anyone think they will work for their benefits? And even if they will work for their benefits its's not free labour for the charity and a bad volunteer is often worse than no volunteer at all. The majority of volunteers on the books of the charity I direct have been made redundant from their jobs and are keeping their skills fresh by working for us, for which I am eternally grateful, and they were doing this long before the Big Society was even thought of.

The concept of volunteers being 'free labour' for a charity is false. All my volunteers have to be Crb checked and be trained to be able to do what I want them to do properly, because, and I repeat a bad volunteer is often worse than no volunteer at all.

Anyway Big Society .. yes, now I keep being told that as a charity director I have a key role to play in how services can be delivered, but at the moment it's like being on the phone and put on hold while being reminded by a recorded message that my call is very important. All I have seen so far is stuff about running post offices and libraries etc .. well I all ready have an excellent and worthwhile project that I work for, I already have a great team of volunteers, so where do I fit in? Where do we fit in? How much funding is available from the dormant bank accounts you have found? What funding is available from these accounts for pre-existing organisations as opposed to the new organisations that seem to be in mind to replace public services? Because if I'm going to take on all these new volunteers, I'm going to need it.

Therefore this is looking more of a Blag Society to me, full of well meant good intentions but also half baked ideas without a strategy for sustainability or concept of the reality of the true financial costs. So the concept is just being blagged and hopefully it will work.

Can someone please help me and answer some of these questions... oh and tell me what exactly my key role is? Thanks

Thursday, 22 July 2010

Dispelling The Disability Myths

In the wake of the Emergency Budget and the announced welfare reform, I have become somewhat concerned that some of the old disability myths are coming back into the public consciousness and being treated as if true which, I can only imagine, in people's minds justifies the reduction in benefits.

In an attempt to dispel some of the the disability myths, I have gathered some facts and figures from various sources that I hope will make at least some people think before pointing the accusing finger at disabled people bleeding the system dry.

There are approximately 32.6 million people of working age in the UK of which approximately 6.8 million have a disability as laid out by The Disability Discrimination Act 1995. This works out at about 1 in 5 people. In 2008 approximately 3.3 million of these people were in work and a further million would like to work given the opportunity. Now granted this may well have changed as the economic climate has changed significantly since then, but these are the most up to date statistics available. Therefore we are looking somewhere in the region of 2.5 million people who are disabled who are not working... of which I would conservatively guess at least 1/2 are unable to work, therefore 1.25 million people to save how many billions of pounds? It doesn't add up, therefore people in real need will be caught up like dolphins in a tuna net.

Reform of Disability Living Allowance will not get people back into work. I work and receive Disability Allowance after my stroke. It is not a means tested benefit and is in recognition that living as a disabled person is significantly more expensive than as a non-disabled person. (here I must credit the Benefit Scrounging Scum blog for that description and rationale of DLA as it is the best I have read anywhere else). Without my Disability Living Allowance it would be significantly more likely that I would not be able to keep my job as everything else in my life would become infinitely more difficult thus exhausting me and making me incapable of working, which would put me on benefits and render me unproductive.

Next, of the disabled population, somewhere between 5-20% of people are wheelchair users. yes I agree 5 and 20% is a rather large margin however this is difficult to measure too accurately as not every wheelchair user uses it all the time. The disability symbol has quite a lot to answer for with that particular issue.

Next, of the approximately 500,000 people who are registered blind in the UK only some 18,000 are braille readers. As soon as one loses their sight for whatever reason they don't automatically become fluent braille users as a means of compensation.

I won't bore you with anymore but needless to say I have merely scratched the surface, I haven't even discussed learning disablities, mental health disabilities and autistic spectrum disorders

Now I have no doubt that there are some people out there who are not as disabled as they make out to be, I also have no doubt there are a lot of disabled people out there who push themselves to the absolute limits of their abilities to maintain their independence and self-sufficiency and be productive members of society.

If this sweeping reform would only catch those cheating the system I would be happy in the knowledge we would all be all right, but as we stand at the moment I can't believe it and the worrying feeling that I get that society is scapegoating people on benefits, tarring people in genuine need and those cheating system with the same broad brush as the whole nation tightens its belt, will not only stigmatise people with disabilities, but genuinely disabled people will lose their much needed support in the name of reform and simplifying the system.

Thursday, 15 July 2010

Raoul Moat & The Media Perception of Mental Health

Like many of us I was absorbed by the media coverage in Northumbria of Raoul Moat and his evasion of the police, and like most of you could have predicted how it ended.

Now I know nothing of Mr Moat's particular case other than what has been reported on television and in newspapers so will not try to defend, condone or in anyway excuse the murder of one person and the severe injuries caused to two other people; but what I am concerned about is the continued stigmatisation of mental health conditions in the media and that chances that cases like Mr Moat's be used as a part of this continuation.

I have seen the words psychotic and manic used to describe Mr Moat in the final days of his life, which may or may not be true, however in the context in which these words have been used, along with deranged and dangerous, it can only add to the myth that anyone with a mental health condition that may cause psychoses and/or manic episodes is a dangerous person who will blow you away as soon as look at you.

It has been reported that Mr Moat was asking for psychiatric help in the hours and minutes before his death, however he was not long out of prison where, one would hope, he had undergone some form of analysis before his release, if he didn't, maybe the system failed or maybe he wasn't mentally ill, maybe he had a personality disorder or he was merely extremely angry about what had happened; it is all very speculative at the moment and I am not going to join those amateur psychoanalysts who think they know what was going through his mind before during and after his release from prison.

My point is this, there are clear diagnostic procedures before anyone can be described as being manic or psychotic, even those that are diagnosed with such conditions are very unlikely to be a risk to the public, and those in the media should use the terms correctly if they are going to use them at all, and in return the public (including myself) should refrain from being suckered into the media frenzy (there's another one for you) where these terms are used to heighten publicity and generate excitement from what was and continues to be an extremely sad story.

On the other side of this is the social media, particularly Facebook, and particularly the group RIP Raoul Moat You Legend ... he may have been a man who slipped through the net of mental health support, but what he did isn't legendary in anyway shape or form, although some 38,000 facebook users disagree with me.

Thursday, 8 July 2010

Making A Difference to the Future of Disability

I have had a very interesting week as I have had a young schoolgirl shadowing me on her work experience. Rosie is 15 years old and hasn't had much experience being with disabled people, however she wants to work with people in her future career (although she doesn't know what that is yet) and she relished the opportunity of spending a week with me at the charity I run called Music Alive.

Although delighted to have a young person under my wing to teach the ways and means with which Music Alive works with people, I thought it might be a little narrow and specific, so to ensure that she had the best possible experience in the week, we visited a few other local organisations who are creating opportunities for people with disabilities.

The highlight for us both was yesterday when we visited an access day where different sports and activities were available for disabled children to actively participate. The day was organised by Ben Humphrey, and I have the pleasure of knowing that I was part of the panel that interviewed and selected Ben for the post he currently holds. The event had several activities available for children to try out at their leisure, and each and everyone relished this opportunity, especially the adapted bicycles.

Rosie and I looked on, and we chatted about what we were witnessing and we discussed the possible cost of some of the equipment being used. I had some experience of this from when I started the Powerchair Football Club in 2007 where the costs of the correct chair to be able to play was a minimum of £5000, where a non-disabled child could pick up a football and a pair of football boots for under £50 if they don't get the latest models. Rosie pleased me when she told me she hadn't ever thought about this kind of stuff before but it would make her think about things like this from now on.

To add some assistance, I returned briefly to my position of a few years ago as a Boccia coach (boccia is a bowls type sport) when a young man in a wheelchair asked me how it was played, I was even more pleased when Rosie offered her assistance to the young man without imposing herself on him with no prompting from me.

This got me to thinking that a lot of the people on that sports field will still be around long after I'm gone (slightly morbid but true). Will they live in a world where these kind of access days are a thing of the past because the things that we see as 'special' or 'adapted' become mainstream? Will young people like Rosie and the young man who asked for my boccia expertise live in a more equual society?

I feel that this can happen, maybe not in my lifetime but hopefully in theirs, but can really only have a chance with a sustained attitude of educating non-disabled people so that what is currently termed as 'inclusive' and 'accessible' becomes mainstream, and by raising the aspirations of people with disabilities so they can raise awareness of any injustices and discrimanatory practice and can feel that its okay to do so without fear of prejudice and reprisals.

But for all us disabled activists and blogger its worth noting, as this week has reminded me, its not just for ourselves that we do what we do, but it also has an effect on the future citizens we come into contact with and influence, either positively or negatively.

You can see a video showing some of the stuff that was happening yesterday at www.swindonweb.com, sadly I was editted out....oh well

Thursday, 1 July 2010

The Onset of Depression With An Acquired Disability

Last week I spoke about coping with an acquired disability and related it to my stroke. This time I would like to focus on one of the hurdles that can get in the way of coping successfully with an acquired disability; and that hurdle is depression.

In the early stages of acquiring a disability it can be very easy for depression to sneak up on you while your focussing on your recovery from whatever has caused your disability. It is often the case that those around you will notice the onset of depression before you do, this may not however make it any easier for you to accept that depression has you, in fact quite the opposite.

There is a subtle difference between being depressed and having depression. It is possible to continue with your life as you usually do whilst being depressed, however it is much much more difficult to do so without some kind of intervention, be it with medication or therapy) when you have depression. Of course the lines on this blur when you have recently acquired a disability as you don't always know what continuing with your life as usual is now, hence those around of pick up on the possibility of depression before you do.

As I mentioned in my previous blog, there is a period of mourning for your former self when learning to cope after acquiring a disability, and in the same way as bereavement counselling can help people through the grieving process, other forms of counselling can help come to terms with the life changes you have and are continuing to experience, sometimes medication can be required.

Either way there is no shame to be attached to having depression and it is in no way a sign of weakness, indeed the greatest strength is gained from recognising you have depression and taking control of it before it controls you.

Monday, 28 June 2010

Coping After Acquiring A Disability

Becoming a disabled person is one of the hardest things I have had to come to terms with in my life, which is quite an admission after I have spent most of my life supporting people in some form or other to manage their own disabilities, be they physical, mental health or learning disabilities.

But even becoming a member of the community that comes under the mass umbrella and half baked term of 'the disabled', there are significant differences between having a disability from birth and acquiring a disability in later life, as is the case with me following a stroke in March 2009.

Below is a list of 5 stages of coping after acquiring a disability that have assisted me and I hope will assist others.

1) Anger - it is perfectly natural to feel angry after something happens that leaves you with a disability or lifelong impairment, take control of that anger and use it wherever you can to stimulate as much recovery as you can.

2) Recovery - for those who are newly disabled there is sometimes a period of recovery. It is almost impossible to put a time measure on this as it very much depends on the individual and the nature of the disability or impairment. In the early stages. For me it was learning how to walk and talk and trying to regain movement and feeling in my affected side.

3) Management- learning to manage your disability or impairment is important, if you can manage it you can regain a level of control over what your body is or isn't doing.

4) Mourning - this might be considered a little strange but for whatever reason a part of you has changed and as much you battle to get back to as near to the person you were before, some things will not fully recover. It is perfectly healthy for you to mourn for your old self who, until recently, you have lived with with various degrees of happiness.

5) Acceptance - once you have mourned your old self you are in a position to accept your new self and tackle head on the challenges that life throws at all of us from time to time.

I do not claim this list to be in anyway scientific, but it has and continues to work for me. I have tried to keep it general and not specific to strokes, however I'm sure not every stage will be applicable to everyone.

I hope you have found this interesting and useful.

Tuesday, 22 June 2010

Emergency Budget 2010 - DLA

I feel the changes to Disability Living Allowance announced in this afternoon's budget have raised more questions than they have answered.

For those that missed it the rates will remain the same but in 2013 a medical assessment will be used to simplify the current autobiography you need to fill in, which on paper looks fine and can be viewed as ensuring those in genuine need receive as much support as possible, however in our current financial position, with a huge national deficit, it is likely that they will be looking at reducing the number of recipients.

Now some of us think we know somebody who gets full disability and they can walk and do their own shopping and do all kinds of things. Whereas in some cases I am sure this is true there is still the assumption that its not a disability if you don't use a wheelchair or a cymbal cane. I also worry that those with hidden disabilities such as Aspergers Syndrome or mental health issues will be overlooked in this medical assessment procedure which may concentrate on physical need.

Also who will carry out the assessment and what is their agenda? Where there is a financial implication will there be a government financial target and will that take precedent over ensuring those in need receive support?

Its a bit early to say but bitter experience leads me to believe that fewer people will be in receipt of DLA in the future in an attempt to capture those trying to cheat the system, but even if that is successful there will be a significant number of genuine disabilty cases left out in the cold.

I hope I'm wrong!!

Tuesday, 8 June 2010

Undercover Social Worker & Government Cuts

I know I said at the end of my last blog I would complete the story of my Scottish trip, however is all happening in the health and social care spectrum in the UK at the moment and it would be remiss of me not to comment on some of them.

Firstly I would like to mention the Undercover Social Worker programme on Channel Four last night, which seems to have raised a lot of issues that many of us have been aware for some time.

Sadly social workers are gatekeepers these days. Its demoralising for all involved. Most social workers go into the job because they want to help people, but all they can do most of the time is assessments and forms and reports then tell people they can't have what they need because the bean-counters refuse the funding, which then becomes demoralising for the people who need the help. People come into contact with Social Services because there are problems so to then be assessed and to be told what you need doesn't meet funding criteria is extremely distressing, but its not those that refuse the resources that have to pass on this news, it is the poor hapless social worker who then becomes the scurge of the person who has been refused services.

The result of this is numerous Social Workers on long term sick leave, skilled people leaving the profession; which in turn leads to staff shortages and those remaining being over-worked, stressed and demoralised, which in turn has an detrimental effect on the standard of service received by people in need.

In a bid to resolve this you get cases such as those demonstrated on last night's programme where you have inexperienced and sometimes unqualified staff making assessments on people with the best of intentions but being terrified of making wrong decisions. How can we have confidence in our social workers when they don't have confidence in themselves?

The role of the social worker has been stigmatised to point where it amazes me that anybody would want to do that job now. From the media who report on social service failings, to society who access the media and make their own judgements where the social workers are at fault, to the bean counters who blame the socal workers for unsuccessful funding bids to access services for people in need, which in the end is down to a lack of resources rather than anybody's mistake, but it is always the social worker's fault.

I hope this programme will have the effect of realisation that a social workers position can be impossible at times (no consolation to those missing out on services I know) but by always blaming the social worker you are often 'kicking the wrong cat' and all that produces is stigmatising the profession, people leaving and arguably worse, putting off potential new social workers. If the situation continues as it is I fear there will be a real crisis in the next 10-15 years where there will be a catastrophic shortage of social workers.

The final thiing I woul like to raise (and not unconnected to my first point) is the new government's public consultation on the 'painful cuts' that have to be made to our public spending.

Although I cautiously welcome this public consultation, I have great concerns that those in the greatest need will not be heard. As the name of my blog might demonstrate, I work with people with disabilities (as well as being a disabled person myself). There is a long history of disabled people being at the bottom of the list when things like this are concerned. An obvious case in point is the The Disability Discrimination being introduced in 1995, 20 years later than its brother and sister The Sex Discrimination Act and The Race Relations Act of 1975 and 1976 respectively.

So I ask myself how accessible to people with disabilities will this public consultation be? Will papers be available in Easyread and/or braille (although not many blind or partially sighted people are braille readers). Will television reports be subtitled for those who are hard of hearing, unlike some of the pre election Leaders debates? These are the people who are most likely to be overlooked, or possibly worse have well meanng people decide their opinions for them.

The only way to avoid this is for the government to consult with the charities that have direct contact with disabled people. And I don't necessarily mean the larger charities who on occasions have their own political agenda and have therefore become detached from the people they are meant to be serving. I mean the local advocacy groups and what used to be the local Coalitions of Disabled People.

This is the only way anything resembling true public consultation can take place includng those that may be the most adversely affected by the inevitable cuts.