Flash Says…

Archive for the ‘Disability’ Category

Definition:
Fear of Brown Envelopes – a state of anxiety caused by receiving a dark manila DL envelope, with a return address of the Department of Work & Pensions (DWP).

Without exception my disabled friends are united by concern about benefit cuts, often worrying about bad news. At Christmas bonus time, or when the new tax year starts, people tweet to remind each other not to panic when something ominous and brown lands on their doormat.

Many disabled folk are also scared of being “reported” – programmes like “Saints and Scroungers” and “Benefits Street” don’t help the public perception. Even if it is completely unfounded, when a report is made (by someone hiding behind anonymity) the disabled person’s benefit claim is re-assessed. Why, if we are legitimately disabled, do we fear re-assessment? For that, you need to consider the difference between Disability Living Allowance (DLA) and the newer Personal Independence Payment (PIP).

Many people with a long-term condition which is unlikely to improve, like me, are on an ‘indefinite’ DLA award. When I was assessed, it was awarded on the basis that walking 50 metres – while then sometimes was possible without mobility aids – would be dangerous for me, and/or cause me pain, which needs me to rest and recover as a consequence. I’ve always described this as “the less I do, the better I am”. However, the newer PIP system merely asks whether I can “mobilise” a distance of 20 metres, by whatever means. Of course this lower criterion is intended to reduce the number of awards made, and save the government money. Sod the fact that it’s further than 20 metres to my nearest shop, bus stop or postbox, and I often can’t park within 20 metres of my doctors’ surgery or hospital clinics either.

There are other issues with PIP which are well documented elsewhere; such as the cost to bring in PIP (supposedly done to save £1.2bn a year, it’s actually costing £1.6bn more); despite only 0.5% of DLA claims being fraudulent (according to the government’s own figures) they intend PIP will reduce disability claimants by over 20%; as well as the ridiculous suggestion that 20m is as far as anyone needs to be able to move. So now you can see why many lifetime DLA recipients fear they will not be awarded PIP at reassessment. It is clear that many people will still have their disabling condition, but will lose the support that benefits provide.

And if somebody, maliciously or well-meaning, reports a disabled person to the DWP, that person will be reassessed. Not against the criteria of the award they currently hold, but against the new, harsher, criteria of PIP.

This next comment may sound silly, given that friends, neighbours & even strangers tell me how confident and strong I am – but I too harbour that fear. In fact I thought seriously before writing this blog, hoping nobody with ill-intent is reading. My DLA is my only income – for everything else I rely on my husband’s support. And I depend upon it. Not only is it important for practical things, but I also need it for self-esteem: to validate the fact that it isn’t my fault that I can’t work, that I am in genuine need, that the state recognises this and supports me with a small amount of money (which I use for minicab journeys and extra hours for my PA-cum-cleaner) .

So, when I go out to the corner shop of an evening, sometimes just popping out quickly without my stick, if there’s an unfamiliar face hanging out on the street corner, or a car parked nearby with someone waiting in it, it *always* crosses my mind that they may be spying on me. Waiting for me to slip up. I wonder if my limp is obvious, or if it’s too dark for them to see the grimace on my face or the way I’ve stuffed a fist into my back to keep myself upright through the pain. Watchers don’t know that I’m only going to the nearest shop (less than 50 metres) for a single lightweight item. Or that if that shop has run out I have to return empty handed, because the next shop, just across the road, is too far for me to visit and return from without going back for my stick. And they certainly won’t know how much I’ll have to rest afterwards (after all, nobody sees you behind closed doors, only for the limited time when you’re well enough to get out and about).

Maybe this sounds like a pity party, but I assure you the fear is real. Some day, all DLA recipients will be transferred to PIP, and I’m worried that I’ll be one of the genuine disabled people who will lose out. After all, somebody will, and I have the disadvantage of “looking normal”. And if I lose my highest rate mobility allowance then I lose my entitlement to a blue badge, meaning I won’t be able to park in a space wide enough for me to get in and out of the car door. I’d also lose many other local travel benefits. And as well as the mobility aspect, there are my care needs too – currently I have a wonderful PA who keeps me and my house straight. Without these things I – a strong, independent and often outspoken woman – could end up stuck at home, feeling isolated and increasingly depressed. If it could do that to me, imagine the impact on someone less confident or unable to advocate for themself.

If you’ve read this far, you’re probably wondering what the point of this article will be. Well, this was all triggered by an incident yesterday. I was feeling quite well for a change, and decided to do something productive with the energy. So I loaded the dishwasher, as a surprise for my husband and in an attempt to make the kitchen a little less grungy. It took perhaps a minute to shift a few bowls and pans from the worktop to the machine underneath. Partway through, it began to hurt. When I finished, I had stabbing, burning pain in the back of my pelvis. I went to sit on support cushions, to double dose my meds and rest. It took nearly an hour before the pain had subsided to a point where I could get up again.

One minute of activity. One hour of rest as a result. You can see why physical disability often leads to depression. Then I realised: this happened in private, without witnesses. Nobody else would ever know, they only have my word for it. And because I “look normal”, why would any person who sees me think I am less than able to undertake even such simple routine chores?

So I too, like so many of my disabled friends, live in fear of brown envelopes. This should not have to be the case.


If you have been interested by this article, I encourage you to consider sharing it, and to remember that you can never tell how someone is feeling just by looking at them.

Advertisements

This week, the World Cup kicked off. It was ceremoniously started by a paraplegic who wore a robotic exoskeleton. After weeks of practice, he managed to kick the ball a short distance. What does this really achieve, if anything?


Image from BBC news of paraplegic man preparing to open the World Cup

I’m not impressed. Several young, fit people were chosen to train for this opportunity. In the event, the paraplegic person had to wear a brain cap, a rucksack containing a maximum 2 hour battery, and was wired up to sensors that they’d spent weeks training their bodies to understand, little by little. They still had to be helped by a team of people, and the activity they managed was a huge effort after weeks of training. Maybe one day this will help people who can’t walk; for now, it’s just for show.

I’ve encountered this issue as a Formula 1 fan. Frank Williams, leader of the Williams F1 team, became tetraplegic as the result of a road accident in 1986. He has been a common sight among the Formula 1 paddock, wheeling himself around the pit lane, but more recently he gained attention for using a wheelchair to help him artificially stand.

I find this really interesting. I believe that people with impairments and conditions of all types should be helped by the most appropriate tools and equipment – whatever that is. As you may know from my article about the cost of wheelchairs, unfortunately people do not automatically qualify for whatever equipment they need, and often have to fight for it or fund it themselves.

I am a disabled person with many friends who have a range of impairments at different levels, and the consensus seems to be that tools to make people artificially stand or ‘walk’ are missing the point. They make non disabled people think we can be ‘fixed’ when only certain people can use these tools, and then in specific and limited ways.

Frank Williams says that he prefers to stand so that he can shake hands and make eye contact in business. Sure, I can understand that, but this is suggesting disabled people should be made acceptable, normalised, as much as possible – when what would generally be more useful would be to get non disabled people to understand and accept us as we are, to be comfortable to look us in the eye when we are not at the same height. We are just as valid and just as able to conduct business as non-disabled people – why should we stand to attention to make others comfortable?

Frank says there are health benefits to his device, and I’m always interested to hear of these. If using a standing device helps with blood pressure, for example, why aren’t more people helped to have this kit? Although, many disabled people can’t work or are under-employed and couldn’t afford a device like that; as I’ve already highlighted, it can be expensive just to get the basic chair that you need. Most people would be grateful just for a riser that helps them reach higher shelves in supermarkets.

In my own case, I struggle to keep up my blood pressure so my consultant’s advice was just to drink isotonic drinks rather than anything more advanced…

The idea of these tools (such as the “Walk Again Project” seen in the World Cup) is uneasy for me. The amount of energy needed by people to wear a brain cap, and to train their body to respond to stimuli over several weeks, seems like a huge effort when we have tools to help already. They are called “wheelchairs”. Seriously, it is hard enough, even in the UK, for someone with genuine need to be able to justify and/or fund a chair which gives them a normal life. Seeing people trying to walk, be it Frank Williams or an athlete kicking off the World Cup, gives unrealistic hope.

If a wheelchair riser helps Frank’s health that is great. Maybe he could use his public standing to fundraise for even more essential equipment for disabled people’s wellbeing! But if Frank uses it to suggest it is better for business to be able to stand & look people in the eyes, etc, then sadly he is perpetuating the perception that disabled people are somehow ‘lesser’, and rather than trying to educate people to work with us, he is admitting defeat and trying to be ‘normal’ and appear as non-disabled as possible. For those of us who have no choice in the matter, it is depressing to see that might be the attitude from a role model like Frank.

And how will that World Cup kick have looked to people in Nigeria, where Polio victims scoot around on home made skateboards for lack of money?

Surely if we really care about developments in access for disabled people, there are other ways to fund and express it. Let’s try to make sure, as we go, that people are truly enabled.

Online shopping can be a lifeline for disabled people. If you’re not able to spend an hour pushing a trolley round the supermarket every week, you may depend upon companies to deliver your groceries. But who does best at catering for disabled customers? And what happens when it goes wrong?

I have mobility difficulties, and fatigue, from my condition. I don’t have the stamina to do a weekly shop in store, let alone push a full trolley or carry more than the lightest items from my car to the kitchen. But arranging for a grocery delivery isn’t simple either – I need to pace my rest and activity cycle around it, as well as my medicine schedule, to ensure I’m awake and as alert as possible in order to handle the delivery. I’ll clear the table, then rest; accept the delivery, then rest; put chilled items away, then rest; put store-cupboard items away, then rest – you get the idea. My entire day is dictated by the delivery. I’m not sure that non-disabled people realise quite how much other people need to plan in order to make the best use of the limited energy or capacities that we get, but it isn’t trivial.

I’ve tried every online supermarket that delivers to my street in east London – Asda, Ocado, Sainsbury’s, Tesco and Waitrose. Each of them had different issues, but there are only two that I would try again, and one that I would tell every disabled person to avoid – I think you’ll be surprised at the outcome.

The disaster: Waitrose
Where do I begin? The complaint letter for this week’s delivery ran to 5 pages, so this will be a brief summary.

My delivery was due between 2-3pm on Thursday. When it didn’t show up, I phoned to find there were delays of up to 2 hours across London, due to heavy tube-strike traffic. Ok, these things happen – but I had clearly stated on the order that I am disabled and plan my schedule around the delivery. A call would have been nice – and what I would expect from a brand like Waitrose. By 5.30pm there was still no delivery so I rang back, and was told it might come that night (I gave them a deadline of 9pm), or else it might come the next day at 6pm, in which case they’d ring me after 2pm to let me know. Nothing came that night, so at 9pm I ate the only meal I had in the freezer, a chilli. Unfortunately I had oral thrush so it was agony to eat anything at all, let alone spicy food, and I went to bed having eaten maybe half a small meal that day.

On Friday, I was up by 2pm, but heard nothing. At nearly 7pm I chased to find out where my delivery was, and I was told it would come before 9pm. It finally arrived at 9.16pm – more than 30 hours late – by which time I was exhausted, wanted to be in bed, and again hadn’t eaten all day. Then I discovered that an unacceptable substitution for my drinks had been made, and in addition items totalling over £19 were billed but missing. This meant that I would have to get an in-store shop done in any case, since most of my planned meals couldn’t be completed.

At every stage I had to chase Waitrose for information. I always stated that yes, I understand that these things happen, but I need to be kept in the loop so I can schedule my rest. I also told them that I needed food to take my medication, and milk for my meal-replacement breakfast shakes. I explained how critical it was to know what was happening – even if it was just to say “we haven’t forgotten you”. Everyone I spoke to sounded kind, sympathetic, said they completely understood my needs, assured me they were on the case… then didn’t call back as promised, and the delivery didn’t come when they’d said to expect it. They kept me hanging on for two days – and that destroyed me, physically, from exhaustion and pain. I spent most of the weekend in bed recovering.

Although Waitrose volunteered a £20 goodwill voucher, I’m not sure I’d trust them again so it might never get spent. Good communications are crucial when things go wrong, and this was an experience that I never wish to repeat.

Access fail 1: Ocado

I used Ocado for several weeks. Every single week they would phone to see if I could accept the delivery up to an hour early, or sometimes just ring the doorbell to find out. Every single time I told them that I carefully scheduled my wake-up, and my pain medication, so that I would be ready to get out of bed just before the delivery slot, and they must NOT come early and must NOT phone before the delivery slot, that compromising my sleep made me ill. Every single time I was promised this had been noted on my account. Every single time it happened again, and even if I made them wait outside until the booked time, I was now awake and in pain.

They even once pressganged a cleaner of mine into taking a delivery – she told them she couldn’t but they insisted, and she didn’t speak enough English to make it clear that she wasn’t allowed. After all, it’s me paying for it! Of course, that was the week when there were inappropriate substitutions – which my cleaner didn’t know about and couldn’t reject. Eventually I gave up, having given Ocado every chance to stop turning up early.

Access fail 2: Tesco

I thought I’d give Tesco a try. They had an advertising slogan: “We deliver to your door – your fridge door”. That sounded great! What happened when they turned up? The driver told me that they weren’t allowed to enter people’s houses – something about an alleged theft and not being covered by insurance. I quoted the advert and made it clear that if I could carry groceries into the house, I wouldn’t need to order them online. The driver grudgingly brought the shopping into my kitchen, but I didn’t feel I could trust him to do so again.

On a second occasion their driver tried to force my PA to accept the delivery rather than spend 2 minutes fetching me to come downstairs, saying that they don’t care who signs, it just has to be an adult over 18 – this was the nail in the coffin for Tesco.

Slight access fail: Sainsbury’s

Sainsbury’s delivered to me just before Christmas. They arrived on time and only had a few substitutions. However, as I was checking the items and handing carrier bags back to the driver, he asked “So, what’s wrong with you then?” Wow.

I considered how to respond – I didn’t want to disclose honestly, nor did I think it was the place to give him one of my more cutting responses, so I just said “er – how is that any of your business?” He was flustered, so I went on to educate him that it is just not appropriate to ask that kind of thing, and that medical matters are private. To be fair, the poor guy apologised profusely. I would consider ordering from them again, as long as they’ve trained their staff in which topics make appropriate conversation (if in doubt, the weather is always a safe bet) and what is completely unacceptable, especially when you are in someone’s home and they may feel vulnerable.

The winner: Asda

Yes – Asda! To be honest, I only tried them because I was fed up with my experiences of other retailers. I would never consider doing my weekly shop in their physical store – it’s always busy, the customers seem to be preoccupied and rude (I’ve been shoved into by several unsupervised children), they don’t stock all the products I want (such as artichoke hearts in oil and a decent sparkling wine) and their staff rarely offer help with packing – assistance to the car is out of the question.

However, when it came to an online delivery I was able to pick items that were suitable, and the website even ordered them by price which helped me select the range I needed for each product. Admittedly their delivery slots are 2 hours long which made it a little harder for me to plan my day, but you know what you’re getting. The drivers are friendly, they delivered to my dining table without quibble, the few substitutions made were sensible, and the whole experience was as positive as it could be. Sure, I needed to sneak out for a few top-up items elsewhere, but that’s the same with most deliveries, due to substitutions or just running out of things a few days earlier than I’d expected.

Even if you – like me – are the sort of person who prefers M&S and Waitrose for their high quality products, when it comes to online shopping, give Asda a go. As a physically disabled person, I found I could rely on them and they hit the mark. And don’t be sucked in by offers of money off or free champagne – give Waitrose the widest berth possible.

Let me know your experiences of online shopping in the comments below.

It’s a bank holiday weekend. What are you doing – perhaps some DIY or pottering around the garden? Well, if you’re disabled, chances are you won’t be able to shop at a B&Q because their dedicated blue badge parking bays are used to store stock from Spring to Autumn. And the company aren’t willing to change.

I’m physically disabled. I need to park as close to my destination as possible, and I need a wide parking bay with hatching either side, so I can open my doors fully in order to get in and out – if I use a regular bay and someone parks alongside me, I can’t get back into my car. Luckily, the number and sizes of these bays are specified by the Department for Transport (DfT), so I can rely on them being present when I need to shop. The specifications are detailed on their website (although this PDF is dated 1995, the DfT confirmed to me in June 2013 that this is still their current guidance). So it’s straightforward – a shopping area should provide dedicated, wide parking spaces for every disabled member of staff, plus 6% of all bays if there are under 200 spaces in total, or 4 bays plus an additional 4% if there are more than 200 spaces.

When a store doesn’t provide those bays, or if they are provided but not enforced, it’s easy to campaign, quoting the DfT’s guidance. But what happens when disabled parking bays are present, but it’s the store themself who abuses them?

B&Q is a repeat offender. Take my local store, Leyton Mills in East London. I won’t bore you with the numbers, but you can see the location of disabled bays – marked with blue splodges – on this trading estate. Whether you only count the parking bays in the B&Q area, or the entire trading estate, I’ve totted them up and the numbers are such that obstructing just a few bays will mean that the DfT minimums are not met. Every dedicated wide bay is important for me and the many disabled people who want to shop there.


Image from Google Maps – click for detail

Back in 2009 I raised the issue of the disabled bays having been turned into a garden centre:

The management didn’t seem to care – I spoke to them three times and then followed up with a letter, but nothing changed – so I contacted the local police team who patrol the trading estate. A lovely PC gave me the management company’s address but also confided that he’d already had words with B&Q on this topic and it was a source of frustration. The PC spoke to store management again and this time they removed plants from three bays, and promised to free up another two over the weekend (theoretically leaving just one disabled bay full of stock, and eleven available for parking).

Well, B&Q did indeed remove plants from some of the disabled parking bays… however, they replaced them with a gazebo containing a woman selling trampolines!

If it wasn’t so frustrating and ridiculous, I’d laugh. All I want is somewhere to park.

The problem is ongoing, every year the same. In May 2013 the disabled bays looked like this:

…yes, it’s another garden centre! I should point out that there are plenty of normal parking spaces that could be used instead of the dedicated wide ones, if they are unable to fit all their stock in the store. But not only do the disabled bays get used for plants, but they are spread out to provide space for people to browse around them! So it’s not just an emergency holding area, but a deliberate abuse of the space.

Don’t just take my word for it. Here are some examples from other stores…

Claire Brewer spotted this in Lea Bridge Road:

And my own image of the same store (I was unable to park there at all, and staff looked at me blankly when I called them over and asked them to clear a disabled bay for me) – click on the image to see more detail:

Su Smith visited Aylesbury, where they were displaying compost in the car park:

And Dr John Bullas saw this stack of trolleys at a Southampton store:

This problem has also been in the news, for example last October Harrow Times reported on B&Q’s Stanmore store: Anger at DIY store blocking disabled bays with stock. And I’ve heard reports of similar issues at B&Q stores across the UK. Clearly the company don’t care about the needs of their disabled customers. I won’t give you the full spiel about the business case for providing access, but suffice to say that 1 in 7 adults in the UK are disabled, with an annual spending power of around £80 billion. It’s clear that B&Q are not just frustrating and insulting disabled people, but are also turning away a lot of potential income.

So what do B&Q have to say?

Their website has an “Ethics FAQ”, which states:

“Q. What services do you provide for disabled customers?
A. All car parks have designated disabled parking bays, near the main store entrance.”

It would be nice if, having created these parking bays, B&Q would keep them free for the customers who need them.

This summer I tackled B&Q via twitter, hoping that the publicity would make them think twice. They responded to my photos of Leyton Mills, and asked their manager to move stock out of the bays. This was done in many cases, but several of the hatched areas (needed for disabled people to open their doors fully or to pull their wheelchairs alongside their car) remained blocked with stock. A quick poll of my disabled friends on twitter indicated that in order to be useful, the bay needs to have clear hatching on both sides of the bay. And indeed this clear hatching is specified in the DfT guidance. If stores are still blocking hatching they are still obstructing the bays.

Also, B&Q may have cleared some of the spaces in Leyton Mills. Stores in other locations remain just as bad. They might have responded to my tweets in fear of bad publicity but they haven’t made any kind of change to their general attitude or policy. In fact when I visited Leyton Mills this week I found another bay blocked by a sign inviting me to come and shop over the Bank Holiday weekend. This infuriated me enough to finally blog about it.

So it seems that B&Q just don’t care. Summer may be nearly over, and perhaps once colder weather comes and the bedding plants are sold out for another year, the demand for disabled bays (from both customers and the stores) will diminish.

But we know it will happen again.

Name and shame your local offenders, and perhaps head office will do something about it. If not, perhaps it’s time the issue was raised with the Equality and Human Rights Commission.

As their advert says – “B&Q: What could you do?

I didn’t drink alcohol last night. As a result, I found my pain almost unbearable. I lay awake in bed all night, in agony despite being cushioned by two double duvets, wishing I could sleep, wishing the pain would ease. I had no solution.

A good friend, Beth, an alcohol worker, has not been drinking in January. Instead she’s been raising money for Alcohol Concern, and been blogging about her journey. Her blog has reminded me that I drink to “harmful” levels, and made me think about alternatives. But so far, I haven’t found a solution.

I have good reasons to cut back on my drinking. As well as knowing Beth who is an alcohol worker, another friend is an alcoholic (now two years sober) and I have seen how not drinking has changed his life. Most crucially, I saw my dad get ill and then die of liver failure aged just 60. So I know first-hand about the damage that alcohol can do – to your social life, and to your body. If that doesn’t put me off, what will?

But it isn’t that simple. I have a chronic pain condition, and no medicines seem to provide me with adequate pain relief. In order to cope, I drink nearly every evening. I rarely get drunk, or feel particularly intoxicated, nor do I want to be: but I do exceed recommended limits. I just need to have a certain level of alcohol in my bloodstream so that I can sleep at the end of the day.

A friend with the same condition as me, David G, said: “When I did my Pain Management course, one question the medics asked was “Who supplements their painkillers with alcohol?” When half the class stuck their hand up, the only comment was “That’s about average.” In teaching us to be expert patients in control of our own conditions, alcohol was completely accepted as one of the tools available for responsible use.” So it is more or less expected that patients will use alcohol to help their pain levels. But at what cost?

I have tried stronger painkillers; buprenorphine, and oxycodone. They were good in that I didn’t feel a wish for alcohol when I was taking either medication, but unfortunately they each turned me into a zombie and I couldn’t take either on a permanent basis. I haven’t found anything else that I can take instead. So it was helpful to know that medics expect patients to use alcohol as a pain killer, but sad nonetheless.

I’ve seen the way that alcohol can destroy your body. Everything from yellow skin and needing regular blood transfusions, through to limbs seeping liquid from oedema; a midriff swollen by many litres of ascitic fluid, tight as a drum; regular gastroscopies to check for veins about to burst; and ultimately confusion, coma, then death. It is utterly horrid. It was a cruel thing to happen to my dad in the last few years of his life, taking him when he was barely 60. People whispered “it was no age” and they were right; and it upsets me to think that if I go the same way, I might only have another 20 years with my husband, who I love beyond compare. I have liver profile tests on a regular basis, but you don’t tend to see signs of damage until it has already been done. I just hope that I am luckier than my father.

I drink almost every night. By NHS standards, I drink heavily and I drink too much. For example I will drink a pint of Pimms (5 units) over a few hours, and then a Pina Colada (2.5 units) over another hour or so. That’s a quiet evening; I’ll often have something else as well. This is what I need in order to bring my pain to a manageable level, so I can sleep. The NHS thinks this is a “binge”.

Bearing this in mind, and inspired by Beth’s blog, I didn’t drink alcohol last night. As a result, I found my pain almost unbearable. The first night of not drinking is just about doable, but a second night would be impossible. You see, when I don’t drink for a night I am in agony. Every time I try to sleep, the stabbing pain jolts me awake again. I lie there trying to sleep, but whichever way I lie, it hurts. If it’s not my knees or hips shouting, it’s my pelvis or my ribs; they take it in turns to disturb me. I also flick between being too hot and too cold. My body is hypersensitive and my pain levels are up to 11. When my husband reaches an arm around me, I have to move him away, because it is even painful to be touched.

It took me until morning before exhaustion overwhelmed me and I finally got some kip. I slept from 8am until afternoon. When I woke up, I was in agony again. This doesn’t happen the morning after a night of drinking. That’s so unfair, it’s like being penalised for doing the right thing! So if I want to give up alcohol, I first need to find another way to handle pain.

I have asked my medics. I can’t take stronger painkillers because the patches damage my skin and tablets turn me into a zombie. They have said I shouldn’t take anything more than codeine. But to me, that is like a sticking plaster on a gaping wound; better than nothing, but only just.

I don’t know how to end this article. You see, I am frustrated that I end up drinking to help manage my pain, but I don’t know any other method, so I will continue to do so… even though I know it is probably harming my liver, and I really don’t want to end up like my father.

I can’t find an alternative. My immediate, day to day need is to minimise pain. My long term aim is to minimise damage to my body and to plan for my future. But until I find a way to replace alcohol as a painkiller, I am just running on the spot, and hoping not to do myself harm in the process.



Beth’s blog is http://bethanfisher.wordpress.com. Please read about her experiences of a month lived sober, and consider sponsoring her for Alcohol Concern.

Today I received an unexpected email. Five years ago I’d written this missive to “future me”, and it was delivered out of the blue, completely forgotten. So what did it say, and how accurate was it?

“Today is 7 Jan 08” I began. “Bill Gates showed off a coffee table with a touch sensitive computer in it and reckons in 5 years’ time there will be ‘tens of millions’ of people sitting around them in their lounge.

“So here you are, 5 years on – amazing things will have happened like the Olympics, and like Leytonstone tube getting more accessible – so, have you got an interactive coffee table yet?”

Wow. Touch sensitive coffee tables eh? Well, I’ve got a tablet that I use in bed or in the lounge, and a smartphone of course, but that’s as touch sensitive as my house gets! Cynically, I googled “touch sensitive coffee tables” only to find an article – dated today – about a new giant tablet which will act like a coffee table, or even an air hockey game. But it isn’t an actual coffee table – that was just an analogy for its size. So I suppose Bill Gates is hoping nobody remembers what he said half a decade ago!

I wish I’d been more insightful, more detailed. Instead I referred just to “amazing things… like the Olympics”. Well, it WAS amazing, and living near enough to hear the closing ceremony fireworks from my house, it was exciting too. I spent two very enjoyable days at the Olympic Park (one watching Tom Daley grab Olympic diving bronze, another seeing Paralympic heroes Oscar Pistorius and David Weir in the stadium) and benefited from other 2012 events such as New Year fireworks, and seeing my current favourite band Tom Williams and the Boat performing live at an east London park.

But my local station remains inaccessible to me; there are stairs and no lift. I still have to get a minicab to Stratford in order to get onto the Underground. The thing I failed to predict was Ken Livingstone being ousted as Mayor of London. In came Boris, and out went many promises on which disabled people were depending. He shelved plans to make my local station accessible to me, saying there was no money… while I still have to fork out a fiver for each cab ride to my nearest accessible station.

Therefore, my first hopes for the next five years are that Boris loses the next Mayoral election, and the Tories lose the next General one. Budgets and benefits have been cut beyond what some people can cope with, which is shocking and depressing to see.

There were other sadnesses that I didn’t predict. After more than two years of illness, my dad died in 2011. Then last year my 12 year old greyhound succumbed to cancer. I don’t feel ready to lose anyone else close to me, although my nan-in-law is in her nineties…

Perhaps the next five years will bring opportunities to travel and relax. I got ill in 2011 and I’m still trying to manage my health challenges now, although I’ve now got the assistance of some great specialists. My immediate priority is a holiday, and then when I’m well enough, a puppy!

I’d also like some more opportunities to speak on TV and radio; this is something I didn’t predict, and which really began in 2008 when I was featured on Countryfile and The One Show. By 2012 I’d also been on Radio stations 2, 4 and 5, loads of local radio programmes, BBC World, Sky News, and on BBC Breakfast TV – though each only for a few minutes at a time. Hopefully over the next five years I’ll get more chances to share my knowledge and experiences with the world! If I could one day make my living in that manner, I’d be delighted.

Those are my hopes for the future – what are yours? Do you have a prediction for how we will be living in 2018? Perhaps you can help me reach my goals in some way! Let me know your thoughts.

Tags:

The Liverpool Care Pathway has been in the news lately. It’s a care path for people who are dying, whereby invasive treatment is withdrawn and they are left to die peacefully. At least, that’s the principle. It isn’t what my experience found.

A few years ago, a relative of mine was put on the Liverpool Care Pathway. It was explained to my family that he was expected to die, so invasive treatment would be withdrawn, medicine would be stopped (as it wasn’t working, so it was redundant) and that we would be left in peace to spend time with our relative before the inevitable happened. It was presented as the best, and normal, thing to do, and we numbly went along with it.

Some advantages were clear right away; curtains were pulled around our relative’s bed and a “Do not disturb” sign placed outside, so that we were not interrupted by staff asking whether the patient would be having any dinner. We were given permission to come and go as we wished, beyond regular visiting time – and my family began a vigil so there was always one of us present at the bedside.

The heart monitor, which I’d been watching in a daze, was removed – this was a good thing as I stopped focusing on that, instead focusing on my relative. Medicines were stopped. This was all as expected so far. But then my relative’s feeding drip was removed. We weren’t expecting that! I didn’t consider the drip to be invasive – fair enough if it had fallen out, then I could understand the need to discuss whether it was replaced. But it had at no point been made clear to us that liquids and nourishment would be removed – in contravention of the relative and carer leaflet about the LCP, which refers to maintaining the patient’s comfort, and says decisions about food and drink will be explained and reviewed regularly.

This aspect of the LCP has been in the news recently, with one report saying that a patient even rang the police so he could have a drink of water. Should patients be parched and famished as they die? It seems inhumane, something you wouldn’t even do to a dog! If I’d known that my relative’s nourishment would be removed, I would have challenged putting him on the LCP. If a drip is in place why not leave it? No one wants to die thirsty.

After a few days of our 24 hour vigil, to everyone’s surprise, my relative woke up from his coma. Suddenly treatment was reinstated with all haste. And do you know what? He was hungry.

The Liverpool Care Pathway is about convenience, not about care. In my view it’s about making the time before death easier for the living, and for the medical staff who can then spend their efforts on other patients. That’s not good enough in my view, and I’d never support it again.