Just exactly who is the NHS for, anyway?

Tuesday 25 February, 2014

Before I go off on one, I do want to make it clear that I love the fact that we have an NHS. I am very proud of what our country can offer it’s people. Almost every NHS hospital in Merseyside has offered it’s services to me through my years on this planet, and I wouldn’t be here without them. I am also very grateful for everything the NHS have done over the years to help my friends and family live as well as they have, did and do so.

But… it’s not perfect. And over the past few years I’ve found the gap there is between NHS and the private sector of healthcare has widened. And it’s not the NHS’s fault. I mean, alright, sometimes we do get pretty bad doctors. I’ve had my fair share of them. But I think we can all agree it’s mainly the fault of the big cheeses who work in their big offices who make these stupid decisions, because they want to run hospitals like business and not like hospitals that have people to care for. Lots of people. Including lots of people who aren’t compatible with one-size-fits-all care stock.

Like me.

Today I want to rant about one of the most frustrating hospital appointments I’ve been to in possibly over a year. Which is saying something, because I think I’ve had worse very recently! At my last appointment, about a month ago, my ambulance turned up ten minutes minutes after my scheduled appointment, I turned up an hour late for my appointment, the clinic was running over an hour late anyway so that cut some of the waiting around in the clinic for me, but still… And then the doctors all went for their lunch. I was the last patient of the morning appointments to be seen, I was led in to the consultation room and waited a further twenty minutes for my specialist’s underling to come in and tell me my scans weren’t the most perfect, but they’re not so bad to need operating on. I was told to scrap the leg braces because they weren’t helping*, the underling had to leave the room twice to speak to the Big Man Himself to see if there was anything they could do for me, the conclusion was no; I was then asked if I wanted to be discharged (My answer was no) and then sent on my merry way to be seen again in a year.

And yet today’s appointment was all the more frustrating.

First of all, I get ambulance transport to the hospital. This is because I don’t have a car, nobody in my family drives, it would cost £40 a round trip to get to and from the hospital in a taxi and I can have between one to four hospital appointments a month. I wouldn’t be able to afford that. I can’t guarantee that I can get on the two busses/the bus and the train needed to get me to the hospital, I certainly wouldn’t be able to get on busses around here in my electric, and my primary carer is my mum, she’s also disabled and can no longer push me in my manual.

There’s no other way for me to get to hospital appointments.

But they’ve recently restricted access to the ambulances so much that hardly anyone is meant to qualify for patient transport. This is apparently so they can save money. They ask questions such as “How often does the patient leave the house?” and “Does the patient do the weekly shopping?”. Neither of those things have much to do with needing an ambulance to go to a hospital appointment. It’s as if ATOS has taken over, it’s awful. I could be the most mobility impaired disabled person out there (I’m not) and go to a day centre every day, needing to be tube fed and toileted, but the fact that I leave the house at all (they say rarely is once to twice a month) would leave me without transport! They don’t care where someone goes, even hospital appointments count against you.

And how does doing the weekly shopping impact your need for patient transport? What if, like me, you get the weekly shop delivered? Technically, I do the weekly shop. I go online, I select the food, I choose the delivery time and date. It’s somebody else (either my primary carer, support workers or other family members) who opens the door, let’s the deliverer drop the food off, brings it in and puts it away. What if, once again, I was that mobility impaired person with all those extra needs? What part of those extra needs impact on going to the local supermarket, and with good planning, buying the weekly shop?

It’s the pure association and ignorance playing the part here. Associating shopping with, I don’t know, frolicking around Tescos and pirouetting down the isles, throwing tins of beans on a whim into the trolley like some sort of improv shot putter, and associating disability with being homebound, sickly, non-compus mentus.

And yes, there are people that disabled out there. I went to school with plenty of children that severely disabled. And without wiping them out of existence, there needs to be an acknowledgement that there is a range, here. There are people who, like me, have bad enough physical disabilities, that our needs are similar to the needs of people with the types of conditions that affect them more widely. I need a hospital bed because of extra support I need to sit up and lie down, I’ve talked about this before, but when trying to get one I was originally blocked on referral. Because they only offered hospital beds to either people receiving palliative care or dealing with conditions like severe cerebral palsy or muscular dystrophy. I’ve neither of those, my bones just grew wrong. Even the second try, after seeing an Occupational Therapist, I dealt with a district nurse who said I didn’t “sound” like I needed a hospital bed, because I talked so well over the phone…

But back to the ambulances. They say they’re restricting access to save money, despite also wiping out those with complex conditions which vary day by day… then why did a taxi pick me up this morning?

My hospital, maybe the trust, have a contract with this one firm. This one firm have taken me to and from the hospital more times than I can count. Which is really unfortunate, because this firm is quite frankly awful. I can’t tell you the amount of times I’ve argued with the drivers about straps for my wheelchair, needing the ramp to get me up, needing the chair up to go backwards. The amount of times I’ve asked the driver “Have you got the straps?” for them to say “Yeah, love! Don’t worry, yeah? I’ll put the straps on you!” and then just uses the seatbelt.

The seatbelt is not a strap. The seatbelt does not stop my lightweight wheelchair from skidding. I’m not wedged in in-between anything, breaks only stop the wheels from turning. I move, it is inevitable. I don’t know how a taxi firm with a hospital contract can get away with being so lackadaisical. I’ve tried complaining, it got me nowhere. Most times I have to just bare it, because I’m either that desperate to get home or I can’t risk being that late for a hospital appointment. Ambulances check in with hospitals when they’re running late, taxis don’t.

And I go through all of that and it can’t possibly be saving the hospital any money. That’s £20! For one single journey. Today almost all ambulance patients were being taken by taxis, and it’s only one patient per taxi. I was pretty local, there was one lady going to Warrington! On your average ambulance, you can take at least three people and their carers/assistants to the hospital. Not everyone has or needs someone with them. Most of the time when I’m on the ambulance, I’m not just the only person in a wheelchair on the ambulance, I’m the only person with a carer with them. Everyone else is by themselves. That’s five patients and one carer on one journey.

I know I complain about journeys taking hours to get to and from the hospital, but that right there sounds more cost effective to me. And to be honest, most of the times the longest journeys take as long as they do because certain ambulance drivers like to go all the way out to knowsley to get to the hospitals. I’ve been on ambulance journeys to Preston Hospital that took less time than the jolly jaunts to Broadgreen Hospital via Knowsley.

Yeah, it’s so fun being disabled.

And now back to my frustrating appointment today.

After being picked up by yet another taxi driver who doesn’t know what to do with passengers in lightweight electric wheelchair, I got to my clinic’s waiting room. Orthotics today, that means shoes and braces and supports and things like that.

Once again, they’ve redone the layout of the waiting room. And yet there’s still no place for a wheelchair user to park. I always end up in the way of someone, because I always end up parking alongside a chair, so it’s like I’m sitting there and only taking up one seat. But then I stick out, and people can’t get passed me.

But I’ve long since concluded that hospitals only want the healthy sort of patient, so it’s no surprise to me that my designated space is either outside the room or at the risk of being tutted and sighed at.

As for waiting times in the clinic, I was actually very lucky today. Barely five minutes parked and I was called through.

I explained my problem. My shoes, which took almost a year to get in the first place, and almost another year to get them fit for purpose, were fine for a while, but recently my toes have been getting squished at the tip of the shoe. I did explain all this to the receptionist when I asked about making the appointment, because I made the appointment when I was there for the aforementioned worse appointment, with the two hour delay, because you don’t always need an appointment to be seen. They have a drop off/drop in provision where if the problem is small enough, you can get seen to then and there, they replace the missing part or get something from the stock and everything’s sorted.

But I was told I’d need to see the orthotocist, hence this appointment.

And the orthotocist looked at my shoe, took out the insoles and said “You’ve still got all of these insoles in.” It turns out, after my last appointment with the last orthotocist I saw, he should have told me that there was a settler insole inside my shoe that needed taking out after a month or so. It’s a type of insole that’s in orthopaedic shoes to help the foot and shoe work together until the shoe’s broken in and the person’s used to the orthoticness of it. I should have at least been asked if I’d removed it when I made the appointment, and I wasn’t.

And that annoyed me enough, but then it got worse.

I figured, it can’t be a complete waste of a journey, because last time I saw the orthotocist, I mentioned needing new trainers. See, I don’t just need a lift on my shoes to even up my leg lengths, it’s actually virtually impossible for me to buy any type of shoe that fit my feet. I’m a size two. Adult sizes start at three in most shops, children’s sizes finish at one or thirteen in most shops. Most size two shoes that I see are very shapeless, I don’t know why that is, and most have patterns on them, making it very obvious what age range the shoes are for.

The last time I saw a size two pair of trainers, they had Dora the Explorer on them. The time before that, giant butterflies. I’ve had my trainers since 2009, and they’re falling apart. Especially the one that goes on my useless leg, part of it seems to be only held together by the pattern that’s almost peeling off.

So I mentioned it to the orthoticist. And he said “That is in your notes, but the trainers that are in our catalogue aren’t fit for purpose, so we can’t give you them. We can’t really give them to anyone, they’re that unsuitable.”

You see, now that the big cheese in their big offices have made all these restrictions to what doctors, nurses and all the various therapists can offer, in a bid to save money, it seems as if all that’s on offer is what can be bulk bought in stock. For any extra needs, they have to stick to one catalogue, and what those catalogues offer might be what you need at the same time as being completely unsuitable.

I remember when I last needed shoes. They were so awful and obvious, they screamed “special needs shoes” and I never wore them. I was about eight. And I thought we were done with these sort of things. I thought we were way beyond the times of making disabled people feel like clowns and circus freaks. Gone were the days when a lift on a shoe was actually a big heavy boater shoe, making you look like you’ve nabbed off with one of Bigfoot’s feet. You see? Necessary but unsuitable.

*My leg braces weren’t helping because the smaller size was too tight around around my thigh, and the bigger size slipped down my leg. The braces were worn in an attempt to stop my knees from buckling further, to make the inevitability of needing an operation on my knees straighten a little bit further off. But all they could offer me was two braces. Both actually designed for men to wear, rather than women, and neither of them any good for an awkward dwarf like me.

Again. Necessary, but unsuitable. And it just happens that me going without is probably saving the NHS just a small bit of money, because those unsuitable braces that I won’t need to replace the ones I won’t wear out in the future can be tried by someone else. Well, saving them money until I need another operation to straighten my legs again, that is.

I was told that I would be better off buying my own. But if I and other people could buy our/their own shoes, regardless of any extra needs we/they might have, don’t they think we’d all be doing that anyway!? Just exactly who is this NHS for anyway? Why do they think I depend on this free service? For a laugh? There is nowhere else! I’ve even tried buying size 2 shoes online, it’s virtually impossible, or expensive. And the one pair I did buy had the shallowest area for the foot I’ve ever seen and they ended up going to charity.

Is this a case of “What do disabled people need shoes for? Why do they need to look nice or be comfortable?”. Are we not allowed something so basic as a pair of bloody shoes, that are both fit for purpose and respectful?

I’m lucky I could get a good pair of boots that didn’t shout “I’m an orthopaedic boot designed for women in the war time!”, and I chose them because, not just because I didn’t want to feel ridiculous wearing a very old fashioned design of a shoe, but also I do want to work some day. I don’t want the only thing to stand out about me in a job interview is an embarrassing pair of shoes. It’s bad enough that disabled people have less of a chance of being hired than average people, but women are also judged on their appearances in job interviews rather than their employability to the job up for grabs. Some of those shoes in these catalogues would easily cost me jobs more than the wheelchair. And no, I don’t think I’m being ridiculous.

But no. The trainers aren’t fit for purpose. I feel as though the NHS has a duty of care to people who need help, and I know shoes aren’t a matter of life or death, but I wouldn’t need their help on this at all if I wasn’t disabled. This is part of my disability, this is something that, as part of my disability, needs seeing to. Disabled people deserve the respect to have something basic a wearable shoe. This is not the 1950s!

All in all, I went all that way for essentially nothing.

And then I waited until it was obvious no ambulance was available before the morning shift ended before I was sent home in another taxi. Because that’s what they do. That’s why I’m sometimes just so desperate to go home, I don’t care the taxi puts my health and safety at risk, because they wait until the ends of shifts before ordering someone a taxi. I have quite often waited over two hours in the ambulance lounge, until the end of the last shift for clinic patients, before I’ve been sent home in a taxi. All that time and they could have just done the same thing, hours before I was in too much pain for my pain medications to deal with.

To add insult to injury, any ambulance that did pick up the odd patient was only taking one patient at a time. Remember what I said about how many people you could fit in an ambulance? Surely it would have been cost effective to try and squeeze as many people on rather than spend £20 and even more?

These are the problems with the NHS, and it’s not the NHS. It’s the people in charge and their poor decisions, their lack of checks of quality, and everyone’s acceptance of organised chaos. And complaints falling on deaf ears.

This is just patient transport, shoes, and for my unfortunate few, supportive braces, but don’t you see? Look at the bigger picture. Look at how much more compromising NHS patients are having to do! We accepted long waiting times, we accepted needing second opinions, we accepted clerical errors and we accepted communication problems. Now I am being told to, for all intents and purposes, go private to help them help me. Because that’s what I’d be doing if I forked out money for custom made shoes.

How much more do we have to accept? Just exactly who needs to suffer or miss out on a good quality of life because of budget cuts within the NHS before something changes for the better? As in with people in mind, not getting private companies involved. Because they’re not doing us very well so far!

If the government really wants the NHS to save money, they should get rid of all their ministers and higher level administrators that have involved themselves in hospital matters, and turned the whole thing upside down.

And please, before anyone tries to say I’m being ridiculous and suggesting places to me, I have tried everywhere within reasonable travelling distance. Windsors, Clarks, Shoe Zone, Shoe Market, Marks and Spencers, Tescos, Primark, JJB Sports, Sports Direct, the odd little shoe shops here and there on the high street, Ebay. It’s the same everywhere. Adults start at size 3, children’s end at size 1, the odd size twos I can find are covered in whatever the latest fad is for children, or simply just don’t fit properly.