Living in Pain is Deadly

Living in Pain is Deadly

The tide has turned on chronic pain management.  Anyone who follows the media in any capacity will have seen this shift particularly in regards to opioid medication with regular mentions of addiction, and the harm it can do.  What generally is getting left behind in this discussion is patients with chronic pain and the harm untreated pain can also do.

The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years.

No alternative is offered. I’m not told about any of the latest research or studies on pain reduction. I’m simply told it would be best if I reduced my pain relief. I then counter with a question about quality of life – how am I meant to function with an incredibly painful condition with no pain relief? It’s a question that never gets answered.

I have been under the same Pain Clinic since I developed chronic pain at age 15 and I’m now in my 30s.  So I have now been in constant, crippling pain for over half my life – and in that time nothing has changed. There have been no new treatments offered after exhausting the very little allowed Physiotherapy and Hydrotherapy on offer.  I personally spent many years and a lot of money trying every therapy I could find – from exercise-based to stretching, sticking needles in me, to weird off-beat ones, ones that target the mind and many in-between.  The NHS, however, has offered the same few inadequate options. 

While I’m sure research and studies go on in the field of pain – I don’t keep up with them at all.  This may seem strange to those without pain – but it would simply be a heartbreaking way to spend my time. Even if there is a miraculous breakthrough, having that get through all the trials, work for all patients with pain, be funded and offered by somewhere I can access are all huge steps to climb. 

The judgement always feels like it’s on the patients to be doing something differently.  Self-management. How I’ve come to loathe that term.  If cards were dealt to chronic pain patients – self-management should just be one in their hand, along with Specialist Consultant, Psychological Support, Care Needs, Equipment, Treatment Options, Medication and I’m sure you can think of many others. What it feels like instead is the NHS has either run out of cards to give or have taken the rest away, so the patient gets left with one single option of self-management and are told to like it, or lump it.

I’ve had many of those other cards ripped away from me, but I’m still clinging on to my medication card. I feel judged for doing so and more importantly, I feel scared. Every time a new report comes out about opioid medication and addiction, I wonder what the impact will be on chronic pain sufferers. Of course addiction happens, and I’m not suggesting it’s an issue that should be ignored – but instead it’s those of us with incurable painful conditions simply being left out of the equation instead.

There are such amazing advances taking place in medicine, but the knowledge we have of both pain and pain relief still feel so basic.  How much money and research actually takes place in creating non-harmful painkillers?

The UK should not follow the same approach as the US that has villainised chronic pain patients. It seems many Pain Clinics in the US now have a blanket ban on prescribing pain relief, and will not take patients that have existing prescriptions. For the very few that do allow medications, they will often make patients sign a contract with them that has numerous restrictions such as spot-check urine tests and the fact the patient is simply not allowed to take anything other than their prescription. While it may seem reasonable on the surface – this can include patients having to refuse pain relief after accidents, operations or similar.  People with complex conditions can metabolise medications differently, and I’ve seen cases where people who took what was prescribed having their prescription revoked because their urine test either showed not enough or too much in their system even though they were taking what they were supposed to.  Other patients have had to stop taking cannabis or CBD oils used legally that they found helpful because their contract had a blanket ban on them.

Not only do patients find the contracts stressful and coercive (i.e. they have to sign them to receive any pain relief) a 2010 review also found that evidence was weak that these contracts actually reduced misuse of medications.   

I personally believe it should be basic care to receive adequate pain relief,  and when it’s treated this way the relationship between patient and doctor simply becomes both negative and fearful. An article in the British Medical Journal states, “One systematic review suggested that addiction occurs in 8%–12% of individuals taking prescription opioids, but most data in the review derive from the USA and we have no definitive figures for European populations.” So not only are a lot of fears of addiction coming from data in the US where the addiction rates are simply higher, then even taking the figure from the US of 12% it still means a huge majority are taking the medication correctly and as prescribed.  

Generally both chronic pain and Pain Clinics in the UK are an underfunded and underresourced area. Just taking my local hospital alone five years ago the clinic had eight full-time consultants, two pain nurses, a pain psychologist and numerous support groups and pain management groups that were run weekly.  From that list, all that remains is one part-time consultant.  The rest have simply vanished.  Yet rates of chronic pain patients and their needs have not gone away.

If the NHS wish to reduce the use of painkillers they need to offer well-funded Pain Clinics that can offer an array of services and alternatives in return. They can’t remove both the clinics and pain relief and expect patients to just ‘get on with it’.  The result will simply cause far more of a burden on other medical and care services as patients deteriorate, and there will almost definitely be a massive increase in chronic pain related suicides.

An Open Letter to Ford

An Open Letter to Ford

Dear Ford Foray Dealership in Taunton

Nine months ago my friend started the process to get a car on the Motability scheme.  A Ford C-Max – which has a fabulously tall boot which is perfect for fitting the hoist in for her wheelchair. Her current car is much smaller, and she has to break her electric wheelchair up into six pieces to fit it in, which is an exhausting process when you have multiple chronic conditions including Juvenile Idiopathic Arthritis, Fibromyalgia and Hypermobility.

Motability decided to be awkward when approving her application, and she had to fight with them for seven months before they agreed that the C-Max was the right car for her needs, but finally she was given the go-ahead, the order was placed and she began counting down the days!

Not only would it have a hoist, but Motability (through their charitable grant-giving scheme) paid for some optional extras to make her life easier including an automatic boot opener, parking sensors and keyless entry.  These extras are essential to someone living in chronic pain, and can make a world of difference. As luck would have it, the car was already built with the optional extras she required, so it was reserved for her.

Having the C-Max also brought about other exciting possibilities for her, such as being able to arrange visits to friends and a short break away, that she’d been restricted from doing in her current car, which due to its size has to have the back seats down in order to fit her wheelchair in.

The car was brought down from the north to Taunton ready for my friend to collect.  She then received a call from the dealership to say they were having problems registering the car, so the pick-up would have to be delayed for a couple of days.  She agreed, but then received a second call on Monday to say that they’d realised why they couldn’t register it – another dealership had sold her car.

Her car.

That she’d waited months for, with all the extras Motability had paid extra for.

She was very upset, as you can imagine – and then Ford stuck the boot in even further, and informed her that because the C-Max is being relaunched, there is only one other car in the country available.  She was told she’d have to wait another month for it – and it wouldn’t have any of the extras she needed included. This also meant all her plans for having a holiday, and visiting friends suddenly couldn’t happen either, as they were all planned for this month and aren’t possible in her current car.

How could this have happened?  How could a dealership have sold a car that was ordered through the Motability Scheme, with lots of extras to make a disabled person’s life easier?

And how can the dealership think offering a car without all those extras be okay?  That’s NOT what was ordered, and not what Motability have paid for.

The Motability scheme has been around since 1978 and 3.5 million cars have been leased through it – surely Ford should know what they’re doing by now?

Would a customer who was purchasing directly be treated this way?

How are you going to put this right, Ford?

Yours sincerely

Jade at The Chronic Chronicles

Seven Questions to Ask About the Cuts to Access to Work

Seven Questions to Ask About the Cuts to Access to Work

As I’m sure most of you have heard, a couple of weeks ago Lord Freud suggested that some people with disabilities may not be worth the minimum wage, and some could be paid £2 an hour instead for employment.  His off-hand statement has of course garnered a backlash including calls for his resignation and a petition asking for him to be fired. Lord Freud has since apologised, releasing a statement stating that he has been “proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment.”

However, this statement couldn’t be further from the truth. The government have in fact done the opposite and driven many people with disabilities out of work, by cutting vital support in the form of the Disability Living Allowance to Personal Independence Payment transfer; removing Independent Living Fund, cutting funds to councils for Direct Payments and reducing what support Access to Work will fund.  These cuts tell a different story, and leave many people with disabilities having to reduce their hours, change the type of work they can do or leave employment entirely.

Working with a disability can often be very difficult, both in terms of securing employment, the on-going difficulties some face with juggling their health and work, as well as employers and colleagues attitudes.

What is Access to Work?

Access to Work is a scheme set up a number of years ago with the aim of helping people with disabilities attain and remain in work.  It’s worth around £80m a year, and can be used to pay for a range of equipment, adaptations and assistance. However changes have been quietly happening to the scheme, putting much more of the onus on the employer to fund this support.

Instead of suggesting people with disabilities should work for less than half that of a non-disabled person, the government should instead be increasing funding for Access to Work, and promoting it to employers.  Many still do not know it exists, or what kind of help it can provide.

Employers often think that the implication of employing a person with a disability will be that they will cost more, and sadly due to the subtle cuts to Access to Work this is becoming true in some cases.

How did the scheme previously work?

At the time I had my first Access to Work assessment the rules were that if you applied for an assessment within your first six weeks of work, they’d usually cover the cost of any disability-related equipment/support required, and after six weeks it would be down to the size of the company.  For a smaller employer they’d still pay, for a medium sized company they’d contribute, and for a larger firm they’d expect them to pay.  This was a pretty fair system – and it reduced the risk that a disabled person would not be offered a role because of the extra cost for their support.  In that first job I was given a range of items to help me – from a specialist chair, to smaller items that made life easier, such as an electric hole punch/stapler.

How has that changed?

They have now decreed that the company has to pay for pretty much everything.

So by the time I changed jobs and was taken on by a small charity, the rules meant almost everything I’d had funded previously was now not covered by the scheme.  My new assessment asked for a specialist chair that included heat to try and ease muscle spasms, a desk that could be raised, an £80 headset so I could answer the phone, a recording device or electronic notepad for taking notes in meetings and numerous other items that directly related to my disability and the role I was doing.

The bill was thousands.  My Access to Work Advisor managed to get the chair funded, as the heat function pushed it past a standard item, but what was left was still a lot of money.

I’d just convinced that company to take a chance on me, and had already had to bring up all the reasonable adjustments I needed from them, and now I was supposed to hand them a huge bill?  So instead I looked over the list and decided what I really, really needed, and what I could live without even if it made life more difficult, or more painful.  Only then did I hand my list over, with my fingers crossed they didn’t find a way to get rid of me.  I really didn’t want to be seen as more hassle than the non-disabled person they’d picked me over.

What impact has this had?

Statistics show that disabled people are much more likely to be unemployed than non-disabled people. So my fears that employers see disabled people as more costly are true. It’s very short-sighted of the government, as funding the one-off bill for equipment a disabled person may need to work, could keep that person in a job rather than having to pay for much longer term benefits.

What won’t they fund?

The list of items Access to Work will no longer fund include chairs, electronic adjustable desks, perching stools, back wedges, analogue hearing aids, laptops, temporary wheelchair ramps, voice recorders, anything to do with phones (i.e. headsets, mobiles, etc), writing slopes, staplers, hole punches, and much more.

The fact is that many of those items cost significantly more for a disabled person than a standard work, or  the item wouldn’t be required at all without a disability.  For example the ergonomic keyboard I was provided cost approximately £60.  A standard keyboard is around £20, and probably cheaper if buying in bulk for a whole office. A standard hole punch is around £2.99 and a stapler similar. The electronic one I was provided was £40. These prices soon add up, including a specialist chair without the heated function (£600+), electronic height adjustable desk (£500+) and a laptop for home working (£700+).

What about people that have longer term support in place?

The changes have impacted them also. Those that do have long-term support paid for by Access to Work, such as personal assistants, daily transportation or interpreters are now finding they are having their support constantly reviewed, sometimes even on a month-to-month basis which means they are under a huge amount of stress that the support they rely on could be pulled, or reduced at any moment. Other people are being told that high levels of support are only available to people in certain professions and that their work won’t be covered under the scheme.

The government are shooting themselves in the foot here because by funding the support that somebody needs – for example a personal assistant, means that two people are being employed. Otherwise they’ve got two people on benefits, while they’re pumping millions into coming up with new schemes run by private companies to put pressure onto these people to find employment.

They’re also regularly making changes without a consultation with the user base, or any kind of impact assessment.

How can this be fixed?

People with disabilities don’t want to be told they’re worth less than a non-disabled person, as it’s an incredibly untrue statement.  What they do need to know is if they happen to require support to work (and not all disabled people do of course), is that it will be funded by the scheme that was set up for this exact purpose, and that it won’t be stopped or reduced for superfluous reasons.

Increase and strengthen the funding, and see a happier, less stressed workforce, and not so many having to fall back onto the benefit system.

What have been your experiences with Access to Work?  Has your support changed?  Please comment below with any thoughts/comments on the article.


Stretching Disability Living Allowance to its Limit

Stretching Disability Living Allowance to its Limit

Yesterday I had an assessment by Social Services for Direct Payments.  I’d been waiting about seven months for it after being assessed as ‘Urgent’.  The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not.  From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all.  It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there.  So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch.  I currently use my DLA for an adapted car that has a hoist for my wheelchair.  Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price).   Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work.  So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work.  The assessors response was that I should be using it on a wheelchair.  I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that?  She had no answer.  It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit.  Exactly how far do they expect DLA to go?

wheelchair push

GPs Told Not to Support ESA Claims

GPs Told Not to Support ESA Claims

I am currently going through the awful process of claiming Employment and Support Allowance.  This is the ‘unable-to-work’ disability benefit that replaced Incapacity Benefit in the last couple of years.

To put it mildly – it’s a stressful process.  When you have a disability, you try to focus on the things you can do. You think about alternatives, or ways in which you can take part. However, ESA turns all that on its head – and you have to detail all the things you can’t do. It’s a depressing process.  It’s also a long one.

To claim the benefit you begin by being signed off sick by your GP, once your work has ended.  You get put onto an assessment rate.  After approx 13 weeks you’re sent a form called the ESA50.  It’s a lengthy form, very repetitive – where you have to justify such criteria as why you would struggle to pick up an empty cardboard box repeatedly, safely and reliably.

You’re expected to put medical evidence together with this form.  When the system was set up – the Department of Work and Pensions  or ATOS were supposed to request medical evidence on your behalf, but they did so on very few cases.  Therefore claimants were being turned down for a lack of medical evidence!  The claimant would then have to gather the medical evidence they thought had already been asked for in order to appeal and win the case – causing unnecessary stress, and time and tax payers money to be wasted.

So many claimants began to ask their doctors for evidence upfront.  I’ve had two experiences with this – the first time my GP said not to worry, she would be asked automatically as part of the process.  Of course no form was sent.  Since then, many GPs have realised the system is failing, and some have changed their attitudes having seen the aftermath for their patients.

A couple of weeks ago I went to see my GP again, and she was very sympathetic.  She immediately said of course she would, and she’d make it as detailed as possible.  A few days later I received it – and it was really helpful. There was no charge for it.

I also wrote to my consultant – and did get a letter, but it wasn’t as good as my letter from my GP.  It simply briefly summarised the kind of symptoms someone with Ehlers-Danlos Syndrome would experience generally, which I’m not sure will help as much – but it didn’t hurt either.

So in both instances, I was lucky.

A couple of days ago the following article on BBC News caught my eye.  It stated that Bro Taf, a Welsh medical committee in South Wales have sent out a letter to their GPs suggesting that they stop writing supporting letters for their patients.

I was horrified.

In April 2013 legal aid to assist claimants to fight incorrect benefit decisions was stopped.  Citizens Advice Bureau, often many people’s first point of call for assistance saw similar cuts, which vastly reduced the amount of people they could help both apply for benefits, or help appeal.  There were even reports of advisors being made redundant half-way through appeals processes, leaving those facing a bureaucratic and difficult system alone.

The Citizens Advice Bureau Logo.

The Citizens Advice Bureau Logo. (Photo credit: Wikipedia)

The system has been made harder, and further cuts are expected.

The one support system patients still hope for is from their GP.  The system favours letters from consultants – however, consultants are frequently discharging patients to reduce their caseload. Other people only see their consultants infrequently, and some have conditions that fall between specialities so get bounced between departments faster than you can say the NHS.

I believe Bro Taf have now withdrawn their letter – but it still seems to be down to the discretion of the GPs whether to write supportive letters or not, and this may have given them more a reason to say no.

How can it be that the system doesn’t automatically request medical evidence as part of the process?  Shouldn’t that be step one?

Have you been refused a letter of support by your GP?  Did you complaint, or just have to submit your claim without it?

Beware of Giving Unsolicited Advice

Beware of Giving Unsolicited Advice

Have you ever experienced a scenario where you’ve had a cold, a bad foot, or insert your own recent issue – and someone has said “have you tried taking Vitamin C?” or “have you tried daily stretches?” or “Have you tried being more positive?” or “You should just meditate daily.  My aunt did that and her arthritis cleared right up.”

It’s often well-meaning or innocuous.

Now imagine you have a long-term chronic condition – of any kind.  Think of that advice coming from your GP, your physiotherapist, your Occupational Therapist and your support worker.  And then your aunt, your colleague, your friend, the waitress in the place you grab a coffee every now and then.  And then… you get the picture.

And you heard almost every day, “Have you tried yoga?”  “Have you tried cutting sugar out of your diet?”  “Have you tried this new revolutionary herbal supplement?”


Those people still mean well, they want to help.  In actual fact it can do just the opposite.  It can be exhausting, frustrating, patronising or even rude.  Sometimes you just want to vent – say ugh, I really can’t deal with this pain anymore.  Often they just need some sympathy or empathy in return – not a suggestion to solve it, as it may simply not be solvable, or they can sort it themselves when they feel able.

The vast majority of people with ill-health goes through a long acceptance period.  This can involve a vast amount of research, visiting many specialists, trying lots of treatments including many complementary therapies.  They get to know their body, what is right for them and what isn’t.

Everyone is different, including people with exactly the same condition.  For some people acupuncture may be fantastic, for the next it can be useless.

It’s a fine line – because sometimes someone may have a suggestion that will genuinely help, but please do think before you offer unsolicited advice to a chronically ill person.

Demonising the Disabled

Demonising the Disabled

Ron Liddle from The Sun wrote a column condemning the ‘fake disabled’. He says, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

Peaky? This describes people that often become totally bed-bound, are in crippling pain, too exhausted to lift your head off the pillow or have to use a wheelchair. ME regularly kills people after ravaging their immune system, although the press keeps quiet on that. People don’t speak of the young people having to live in their beds due to the pain Fibromyalgia causes.

Another charming person, this time James Delingpole from The Telegraph, writes in support of Ron, claiming that there are eleven million people now saying they are disabled, and this it what’s crippled the economy. Eleven million disabled people there may be, but only 2.6 million claim Employment and Support allowance, the ‘not able to work’ benefit. The other 8.4 million actually work. Crazy, I know! (No reflection on those that can’t work meant, just that there is an assumption that disabled people don’t partake in employment.) It may be many people now fit the definition of disabled, which is ‘A physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out day-to-day activities’ but the vast majority of disabled people try their best to work.

Another couple of points on these multitudes of disabled people crippling the economy is that Employment and Support Allowance is around £97 a week, and if your partner earns over £5343 a year you get nothing. The governments own figures put the fraud rate for ESA at 0.3%. The fraud rate for Pension Credit is 2.3%, but nobody seems to mention that. They are also bringing in a change that people can only claim contributory rate ESA for a one year.  After that year they’re means tested, with a limit of £6000 in savings.

There is another disability related benefit – Disability Living Allowance, that is frequently used to support working. The extra costs of being disabled is significant. Equipment costs a fortune, needing transport on every journey soon adds up, treatment that enables you to work is often not covered on the NHS, heating for those with joint issues, extra cleaning costs, heat pads and so on. So this benefit is often used to pay for all those bits and pieces, or actually extremely important functions that allow people to work, and as a result pay taxes.

This is having a real impact on people’s lives. The suicide rate is constantly increasing and if the changes to DLA go ahead – where one suggested option is to remove the mobility allowance from wheelchair users with the idea a wheelchair makes someone independent, this suicide rate is going to vastly increase – no doubt about it. That ‘free car’ often complained about is something where you can cash in part of your allowance  in return for a leased car.  This allows people to have low-cost adaptations and transportation that meets their needs. The adaptations I needed came to a few thousand pounds, and really the adaptations didn’t amount to that much.

DLA is incredibly hard to get. The stress and torment people have to go through to get it is indescribable. People with terminal illnesses get turned down. This is why the fraud rate is so low. Yes, of course people will always slip through the cracks – it’s easy to lie about something that isn’t personal to you, and even suck doctors in with it.  And these are the other that papers scream about, this 0.5% that makes the news daily – Scroungers!  Work shy!  Liars!  They don’t point out the 99.5% that are genuine.

I’ve just spent three weeks with many chronically ill people, most with multiple painful illnesses, and the vast majority of them worked full time, way past what they should have done. Many volunteered on top of that work, others were carers for other people. Hardly any of them were on the benefits they should have been and were struggling financially. Many had been awarded DLA at a very low rate, when they should have been entitled to a much higher rate, but were too frightened to fight as they will frequently turn around the remove the whole award.

The demonisation of disabled people, fed directly to the media by the government in order to make these changes, needs to stop. Hate crime against disabled people is up by 75%. Seventy five goddamn percent! Probably because every time someone opens a newspaper they find a story they’ve been fed about that tiny 0.5% of people incorrectly claiming Disability Living Allowance, or a story about people claiming they have a “fake” condition like Fibromyalgia to get the so-called free car handed to them.

Credit to bsr dk

Credit to bsr dk

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Mis-behaving buses

Mis-behaving buses

I found out today that a group of people in Darlington have brought legal action against Arriva bus company for disability discrimination.

The buses have been refusing to allow people in wheelchairs on because pushchairs are there; not putting the ramp down for them; telling them they will be too heavy for the ramp; not stopping for them; or giving them abuse for trying.

In one case a young man waited in the snow for the last bus of the evening, which refused to let him on. When he started to challenge it, the bus driver turned round to the passengers and told them if they let him on the battery on his chair could explode.

Credit to Michal Zacharzewski

Credit to Michal Zacharzewski

Pushchairs do NOT have priority. I know it’s not easy, but parents should fold their pushchair should a wheelchair need the space, as a disabled person can’t jump out of their chair and the wide space is put in specifically for disabled access, not for prams.  (The exception is of course if either the child or parent is disabled themselves and so cannot do this.)

Lothian buses in Edinburgh have actually now banned non-foldable buggies (prams) and insist on them actually being folded if they get on. I can’t say I like the thought of people being left at a stop in any case, however hopefully once the policy is known about, people will make sure they purchase a foldable chair.

Certainly buses should be doing all they can to make themselves accessible for people with disabilities.  Good on Darlington Association on Disability and Unity Law for fighting it!

The Future of the NHS

The Future of the NHS

The NHS is currently under threat from something called the ‘Health and Social Care Bill 2011’.

The bill will make many changes, including abolishing Primary Care Trusts (PCTs) and grouping together GP groups to run their area. While we hope GPs are making decisions based on the patient, they are much more likely to be influenced by finances under the changes. I also hope my GP is spending her time reading the latest research, keeping up to date with training and new medications, not budgeting for the local area. It will allow private companies to take over NHS hospitals, or the services that appeal to them and will stop the NHS being the comprehensive service it should be.

20% of the NHS budget will be spent on things like dealing with the contracts with private companies, advertising, the legal bits that go along with contracts, and a lot of other stuff that isn’t providing quality healthcare or trained staff. Many people will be made redundant – with payments having to be made, and those running the PCTs are likely to then be employed to be consultants to the GP groups.

The postcode lottery that already exists will become even more pronounced, with standards and range of care dependant on where you live. Hospitals will be able to treat more private patients, which seems okay in principle into you need the bed someone who can afford to pay for one is in.

It is one thing if you have an injury and go to A&E to be fixed, or you need a single operation like a knee replacement. The difficulty comes when people are chronically ill, such as myself. With these conditions come all sorts of problems, in different parts of the body, and there is no one specialist that can help me. At the moment my GP can refer me to a variety on consultants, and I currently see six consultants on a regular basis, in different parts of the country.

Under the new plans – the person I want to see may now be available only if I can afford to pay for it, which goes against the very philosophy of the NHS – free care, from cradle to grave.

Debates will be happening soon on Clause 4 of the NHS Bill, also known as the “hands-off clause.” It will completely change the way the minister’s duties towards the NHS, and mean they will only be able to stop something happening, or bring a change in, if they can demonstrate there was no other course of action. This isn’t very easy to do. The NHS is one of the most important issues for voters, and they are expecting ministers to try and take care of it – not sign a bill waiving away their responsibility.  More information on this clause can be found here.

The government did not state in their manifesto they would be making these changes, and public support is largely against it, yet they seem to be pressing forward with them.
I’ve been trying to follow the 38 Degrees campaign, who have taken petitions to hundreds of MPs, including Nick Clegg, send thousands of emails, and are now asking people to ‘email a Baroness Lord’ at random to ask them to attend the debates. My pick is Baroness O’Neill, so I will be emailing her to tell her why I don’t support the bill.

You can do the same here.

Credit to Grafixar

Credit to Grafixar

Fighting the System

Fighting the System

One thing that really frustrates me is that whenever I try and help myself, I find myself banging my head against a brick wall. Just some examples:

If I want a simple referral to a consultant, I seem to have to jump (well, stumble!) though a million hoops first.

I have been waiting over 18 months – not even counting the waiting list for Social Services first – for a disabled bay to be put in, and it’s still not done.

I was given a wheelchair on the NHS that didn’t fold, so I couldn’t really use it properly as it was such a nightmare to get in and out the car.

I have been turned down for Disability Living Allowances twice at Tribunal level, despite lots of medical evidence. (This will be detailed in another post, as I have lots to say about that!)

The council ‘band’ people in categories in order to be eligible for housing. I have been put in a crap band that means I’ll never be able to move , even after an appeal twice now, and have called my medical conditions minor.

I try my best to work, even though it almost kills me to do so, and it’s the reason why some people don’t think I’m as bad as I am.

Okay, just feeling a bit frustrated at the moment!

Credit to ralaenin

Credit to ralaenin