by The Chronic Chronicles | Apr 16, 2015 | Opinion, Vents
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
by The Chronic Chronicles | May 27, 2012 | Access, Education, Vents, Wheelchair
Credit to cuervo
Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?
Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already. First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous. I don’t mean to feel sorry for myself, but I’m still learning so much about this condition. I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.
Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.
It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!
And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.
Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.
Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.
So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down. We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace. So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.
And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).
The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.
I need to apply for grants, but I just don’t have the energy at the moment.
I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!
Yeah, it’s one of those nights.
by The Chronic Chronicles | May 23, 2012 | Coping Methods, Vents
If you ask a doctor how to care for a chronic condition, or read their guidelines, or even go in hospital for a month on an intensive-pain management course (just to be specific) the themes running through them all, their little buzzword, is self-care.
I was reading the papers that have been created in the wake of the imminent closure of the PCTs by the doctors commissioning consortia whose priorities for the future are self-care, with aims to give patients the confidence to manage their conditions themselves.
To be fair, this may help with some conditions where perhaps a specific therapy or medication keeps symptoms at bay, but it gets a little more complicated when it comes to complex conditions where pain and fatigue are two pervading symptoms, amongst many others, because there is no single treatment. There isn’t even ten treatments they can say hand on heart would help everyone with chronic pain.
To be frank, it infuriates me to hear phrases such as ‘take control of your own treatment’ or ‘You have the power in your hands’ etc, etc, blah, blah, blah.
What they don’t tell you is that you have to. Self-care, that is. Because it will make up 99.9% of your overall treatment plan. Oh, it may be occasionally the NHS will think of something – physiotherapy injections, uhh… more physiotherapy, that is if you kick up enough fuss. Otherwise, it’s DIY all the way.
At the age of 15 I visited a Rheumatologist. He said I’d ‘grow out of it’. In the following years I was sent a couple of times for Physiotherapy, but it didn’t make the slightest bit of difference. The NHS then gave up, and in desperation I saw chiropractors, osteopaths, acupuncturists and electro-acupuncturists. I tried the many sheets of exercises and stretches, swimming and pilates and a GP referral to the gym (that I paid for) which put me in bed for two weeks. I then started the ‘alternative’ stuff like the Alexander Technique to improve posture, the Bowen Technique which seemed weird and pointless. I saw Kinesiologists and had relaxation sessions. The only tiny bit of relief came from the many thousands of massage treatments I once again paid for.
I’ve researched madly, kept up to date with papers on pain, studies on medication, and constantly visit the doctor with a new research paper in hand.
I even diagnosed myself – after years of consultants shrugging their shoulders at me, I kept searching and searching until I finally realised what was wrong with me, and then fought to see consultants in London who finally knew what they were talking about.
I now can only exist and function from a mixture of massage and adjustments, which takes the edge off – maybe 5-10% at best. But it’s an important percentage.
In the ten years I’ve been madly trying anything and everything, the NHS gave me one set of facet joint injections in 2008. Some muscle injections in 2011. And six sessions of Hydrotherapy – but I had to fight for them all.
The thing I find infuriating is that no one tells you exactly what IS available. I had severe back problems for ten years before someone said to me there was a spine clinic in my town for people with long-term back issues. Do you really have to hit the ten year mark before they go crap, that is long term for a twenty-four year old?
When you get a diagnosis no one gives you a handbook and says here is what the Pain Clinic offer (if they deem you lucky enough to offer you anything at all) or let you know you can see Osteopaths and Chiropractors on the NHS. Or any other of the treatments they may have available. You have to wait until you stumble upon it yourself.
All they do is hand out painkillers (again, if you are lucky) and tell you self-care is the way it should be.
Sometimes I want to say you know what? I’ve self-cared. NHS – it’s your goddamn turn. I’m just too tired.
by The Chronic Chronicles | Jul 18, 2011 | Daily Life, Employment/Work, Vents
I am really struggling at the moment.
The pain is unrelenting. I did something to a tendon in my foot which was agonising, and I couldn’t walk for days. It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder. I couldn’t breathe without terrible pain, and if I moved it was crippling.
It finally healed, and my lower back started. My lower back always hurts – it hasn’t stopped since I was fifteen. This is worse, so much worse.
I am also completely, and utterly exhausted. Bone-deep fatigue. My eyes are closing against my will, and I can’t summon the energy to do anything. I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.
I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.
Please let this day end.
Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 4, 2011 | Daily Life, Opinion, Vents
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
