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!!". http://bit.ly/9rKaPx

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.

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:

http://www.benefitsnow.co.uk/esa/limitedcapability.asp

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.

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.

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.