Flash Says…

A week or so ago, I went to hear a musical icon – and my favourite DJ – talk to a group of students from Goldsmiths’ College. Tom Robinson (he of 2-4-6-8 Motorway fame, also Glad To Be Gay and War Baby) explained how there was no better time to make music. His talk was scintillating and took us from when our grandparents first discovered music, on through his 30 years in music, and to the present day.

One of his messages was that if you are going to write music, you need to do two things; lower your standards, and raise your standards. By this, Tom meant that you should make sure you churn out lots of completed songs – get into the habit of finishing them (even if you feel, half way through, that it is rubbish) as skills come with practise. Every nth piece of work will be worth hearing, but you need to go through producing the others in order to get to the good one, and be ready to make it.

In terms of raising your standards, it is so easy to make music at home and/or on a budget that our ears are swamped. Don’t push everything you write – wait for that one amazing track (as Tom put it, an OMFG song) and then that is the time to promote yourself.

It was a fascinating talk which touched on many other points, and I was privileged to grab a word with Tom afterwards (he shares my views on making cover versions – they should add something new – but also opened my eyes to how a good cover could be used to win over an unfamiliar audience in a live set).

His words also got me thinking. Any skill needs practise. This is evidenced by the way that I am (re)learning French on my phone via the DuoLingo app – if I leave it for a few days, my scores have slowly ebbed backwards, forcing me to recap. And similarly, I haven’t been writing articles nearly as much as I intended.

Back in June, my life changed. I adopted a wonderful, super-intelligent, labradoodle puppy called Commodore. I thought that I would spend a few weeks getting him housetrained and sorted out with basic commands, then he would lie next to me during the day while I typed away… just as my greyhound used to do. Ah – no such luck. For the first few weeks I resembled my friends with new babies – puppy cradled in one arm (holding a toy or treat for him in front if his face) while I tried to write or type with my free hand. A few weeks later and this tiny puppy was a hulking dog that can easily take over a three seater sofa. Yet he still needs my attention. “Hey mum, I’ve DONE that, what’s next?” He’s so quick. I’m teaching him loads of skills, in the hope that he can become some kind of assistance dog, or at least save my energy by opening and shutting doors by himself! Thus I spend my day training him, or walking him, or playing with him, or grooming his gorgeous but significant poodly coat, or just holding a bone for him to chew while I check email with my other hand. I get a few hours at my desk every week if I’m lucky – before, it was a few hours every day. So that’s why what used to be a weekly – oh ok, fortnightly – blog has become one that is rarely updated.

I was also guilty of the problem which Tom highlighted. As with my songwriting, I’d been saying to myself “That isn’t of a high enough standard, so I will bin it, or start it again when I have more time and inspiration.” The result? Nothing was produced.

Tom’s words hit home. So now I intend to blog whenever I get the chance. I already have a few dozen subjects drafted, but many of them went out of date before I got around to giving them life. Lesson learned.

So, future articles might not get quite the attention to detail that I would like to give them, nor the multiple careful reviews before I hit the button to publish – but… my blog is back!

Thank you, Tom. If the standard is lower than before, at least it is better than never writing at all. I shall hold out for the nth article to be a success.

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?

Storm Thorgerson is one of the artists I admire most highly. He is known for creating amazing cover art on albums, particularly those of Pink Floyd, but he worked with a very wide range of musicians. When I heard of his death in April, I was struck by the strength of my sadness and sense of loss – given that this is not someone I ever worked with, and that I am just a “fan”.

I wanted to say something to mark the occasion, but the words didn’t come to me. Then this evening I received an email newsletter from Storm Studios. Normally written by Storm himself, this time it came from his friends and colleagues. They described how they laid him to rest this week, “in sight of Karl Marx and his friend Douglas Adams”.

I instantly wrote an email in response, which I will share here by way of an acknowledgement of his loss. It is probably not the best tribute that I’ve ever written, but it was spontaneous and genuine.

To all at Storm Studios:

Thank you so much for this beautiful email.

I was everso sad to hear of Storm’s death.

I admired his work for many years – before I knew who had created these stunning and moving images on the covers of my favourite albums, many of which I’d borrowed from my dad’s record collection as a teenager.

In recent years, “Taken By Storm” was on my Amazon wishlist until a relative kindly bought it for me.

In 2011, I saw that Storm was speaking at the British Music Experience, and on a whim snapped up tickets. I am not desparately well myself but was determined to attend. Storm’s character was instantly clear, such an intelligent man, highly entertaining but also very perceptive. I was delighted to win a set of his postcards on the night, and for him to sign my copy of his book. Both remain treasured possessions.

It’s funny how much of an impact he made. From hearing Storm speak, I knew I would have liked to chat with him and get to know him, although I’m sure he could have been a taskmaster at times! I am also a huge music fan and his images were revolutionary, speaking to me through difficult teenage years right up to the current day. It was awesome to hear how he set up the photographs rather than merely creating something in Photoshop… my favourite has to be the Division Bell artwork, where both the music and Storm’s images spoke to me.

So I found myself shocked and surprisingly upset when I read of Storm’s death. I didn’t know he had cancer, although it was clear at the BME talk that he wasn’t perfectly well; I was frustrated to find someone in the disabled toilet when I needed to use it, only to see that it was the man himself. I was tonguetied, but in any case it’s not kind to bother someone when they just want to answer a call of nature! I think I muttered something to his female assistant about how excited I was to be there and how I loved his work; something anyone could have said, but I did mean it.

I am so very sorry for your loss; Storm made a huge impression upon me, when I am only a fan who didn’t actually know him at all. Your newsletter was moving and sad, but appropriate, and it was lovely to receive such a personal note from people who knew Storm so well. Thank you for sharing your thoughts with his followers.

I wish you all the best in continuing with Storm Studios. And I will be looking out for The Gathering Storm later in the year. Storm was one of a kind.

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.

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I spend every Wednesday – and every other Monday – scouring certain websites as soon as I wake.

Many years ago I devoured The Railways Archive’s repository of train accident reports – intrigued by those that happened in areas I know well (such as the Taunton Sleeping Car Fire where pupils, from a school I would later attend, gave assistance) and my eyes opened by others, how one simple error could lead to disaster. They were a horrific but fascinating set of reports, often harkening back to a bygone age.

But eventually I read up to the present day, and new reports aren’t published often enough to sate my interest. Then I discovered Ofcom – who manage complaints about TV programmes, publishing fortnightly adjudications in a Broadcast Bulletin – and the Advertising Standards Agency, who make weekly rulings on pesky advertisers. At last I can bury my nose in adjudications on a regular basis! Better still, they are often entertaining.

When I open an Ofcom report, I try to guess why the programmes concerned have caused problems. An unbalanced news report? Swearing on reality TV? Too many adverts on a shopping channel? Revealing too much flesh on a pay TV programme? I delight in the formal descriptions of what exactly happened, the minutiae of the offence.

My favourite complaints are those from individuals, preferably which have not been upheld. Usually these are people whose misbehaviour has been featured in a Watchdog-style exposé, or they took part in reality TV but now regret how they acted and retrospectively claim they never consented to be filmed. Their complaints are often unintentionally hilarious, ridiculous and clearly unfounded.

So that’s what I look forward to reading on a regular basis. What’s your guilty pleasure?

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.

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