Showing posts with label bureaucracy. Show all posts
Showing posts with label bureaucracy. Show all posts

Monday, 25 October 2010

Shock and Awe


Anxiety has been building for the last couple of weeks. Don’t think about it. Don’t think about it. On Friday I completely deconstructed my book and began at the beginning again – with two months to the deadline. Don’t think about it. Don’t think about it. This morning I woke up with an imaginary tiger clawing at my chest. Don’t think about it. Don’t think about it. I’ve meditated. I’ve been for walks. I’ve watched countless old episodes of CSI. But the more I try to distract myself the more I think about it: today I’m having my follow-up mammogram and ultrasound scans.

As I’m meditating away: breathe, one, breathe, two, breathe, three... the phone rings. I forgot to switch it off. Don’t answer it. Breathe, four... ring. Breathe five... ring! It’s May. May is coming to the hospital with me. One of the life skills that I’ve learned in the past fourteen months and twenty-two days is how to ask for help. The old Lily would have just toughed it out and gone to the hospital alone. That is what I did on the day I was diagnosed. I remember my feelings of bafflement as the ultrasound doctor said “There is a tumour here and in my opinion it could be malignant. I’m sorry...” and my confusion as I stumbled from the room. I sat alone on a plastic chair in the corridor and tears sprouted from my eyes. I tried not to look at the people passing by. I desperately wanted a hand to hold.

If I think about it I may have had some kind of unacknowledged notion that enduring the hard moments alone was somehow courageous. I now regard such bravado as foolish.

So I asked Iris and Flossie and Tessa and Wanda and May. I wasn’t discouraged when any of them said they couldn’t make it. I didn’t assume that nobody loves me. My friends have lives and commitments. I knew somebody would say “yes.” That somebody was May. And what woman wouldn’t want a talented artist and trainee Shaman like May by her side when visiting the breast clinic?

I leave May in charge of the car for a few minutes. “I’m just going to zip into Pret-a-Manger and get us some coffees. Here’s the key, in case a parking warden comes.”

“Is it difficult to drive?”

“No, it’s an automatic.”

As I’m standing in the queue at Pret my phone rings, “How do you get the car out of park?”

My tests today are being done at the Harley Street Breast Clinic. Confusingly, this is different to the Harley Street Clinic where I normally go. Meg and I are shown into a miniscule waiting room. There are two other women sitting on a sofa about eighteen inches away. We and they conduct our conversations in low tones, trying to pretend that we can’t overhear everything that the other pair are saying. A nurse comes in. “Please complete this form.” It’s the usual you agree to exonerate the clinic of any responsibility for everything and pay through the nose should your insurance company fail to cough up contract. I notice that the insurance pre-authorisation number is missing from the form. I fish out my iPhone and call Bupa.

“Hello, I’m just about to have my follow-up mammogram and ultrasound but the hospital don’t seem to have a note of the pre-authorisation number. Could you check it for me?”

“Have you been seen by our medical assessment team?”

“Eh? No. What are you talking about?”

“Please hold the line.”

I spend an uneventful five minutes listening to the annoying Bupa music. Radiographer Jane comes in. “We’re ready for you Miss Lily.”

“Won’t be a minute,” I mouth and point to the phone. Another five minutes passes. I feel my shoulders rising ever so slightly.

“Miss Lily, when were you diagnosed with breast cancer?”

“Fourteen months ago”

“You only joined Bupa in May so this is a pre-exisiting condition. I can’t authorise treatment at this time.”

In a strained voice I tell Valerie, that is her name, that I joined Bupa in 1989. I explain that I temporarily transferred my policy to Bupa Australia and then transferred it back on my return to the UK, in May. I note, through gritted teeth, that although Bupa guaranteed me that my cover would be continuous I have had several hiccups of this nature in the last few months and that on each occasion I have been assured that the problem would be fixed.

“Well you should have called us earlier for authorisation.”

“I did. I called you fourteen months ago and was given authorisation. I’m just calling you now to check the number.”

“I cannot authorise treatment at this time.”

Suddenly I am in melt-down: “Listen Valerie, do you appreciate that I am at this moment in the hospital? Whilst you have kept me on hold for ten minutes the radiographer called me in for my mammogram. So you’re not only keeping me waiting but also the radiographer and all the other patients. Now you’re telling me that the treatment that was authorised last year is no longer authorised, seemingly because Bupa, despite repeated requests, have failed to correct a mistake on my computer record. And what I and the radiographer and my friend May and the other patients are all waiting for is to find out whether or not I have breast cancer.  Do you have any idea HOW STRESSFUL THIS SITUATION IS FOR ME?”

The two women sitting on the sofa eighteen inches away look totally absorbed in their magazines.

“I’m sorry I don’t like your tone of voice. I may have to terminate this call.”

I terminate the call.

***

I stand before the mammogram machine, uncovered in more ways that one. No clothes. No medical insurance. Jane inspects my breast “Wow,” she says, “Where’s the scar? Who was your surgeon? You must be very pleased with it.”

Squash. “Ow!” “Don’t breathe.” Zap.

I rejoin May in the waiting room clutching my very own CD of my very own mammograms. The CD has a big fancy ‘H’ on the front of it, along with my name and hospital number. I wave it in front of May’s face: “Lily’s greatest tits.”

Next up is the ultrasound. By comparison it’s positively relaxing.

***

“Come along Lily.” May and I grab our coats, bags and empty coffee cups and follow in Mr Hadjiminas’ wake to his consulting room. Pictures of my breasts are already plastered all over his light box. Without any messing about he gets straight to the point. “Everything is fine.”

I’m not really taking it in.

Next he examines my back. “That’s settled down well.” Since the last steroid injection a month ago the swelling has not returned. All of my crossing of fingers and knocking on wood seems to have done the trick.

“So, come back and see Suzy Cleator in three months. We will do another ultrasound in six months and your next mammogram will be a year from now.”

Before I know what’s happened I’ve shaken hands with Mr H, kissed nurse Tara and May and I are out the door. I stare about me at the elegant town houses on Harley Street. My body begins to tremble. I start to laugh. Then to cry. “How do you feel?” asks May. “I kind of want to lie down here on the pavement,” I reply. “Lily, I think you’re in shock.”

***

Since there’s still half an hour left on the parking meter we leg it down to Being Content. “Hello,” says Imelda. “Imelda!” I say, “I’ve just come from the clinic I had my mammogram and ultrasound scans they’re ALL CLEAR I need some nail varnish remover and an eye pencil.”*

***

May and I are recovering with tea and tomatoes on toast at Lowry & Baker, my local cosy café. I text everyone I’ve ever known: All clear!

“You should mark this day Lily,” says May, wearing her Shaman hat, “Go out onto your balcony tonight and light a fire in a saucepan. Write down all the things you are now leaving behind and burn them. Then get three sticks to represent what you want for the future and put those on the fire too.”

“I will do that May.” As I speak I upend my plate, spraying olive oil and sliced tomatoes all over my famous breasts. “How big do the sticks need to be?” I ask, indicating sizes with my fingers. I lower my hands and they crash hard onto the table, upsetting the teacups. It seems that in the overwhelming shock and relief of learning that I’m not going to die I have lost the comprehension of where my body is in space.

“Actually Lily, I think maybe you should forget about the fire. You might burn your flat down.”


*Reviews to follow.

Monday, 28 September 2009

One Might Hang Oneself If Only One Had the Energy Left to do So

There is no short or simple way to write this...

In order to qualify for a free wig I need a letter from the Department of Work and Pensions confirming that I am in receipt of income related benefit (whatever that may mean). After many phone calls; being put on hold; being told different things by different people and waiting days for somebody to call me back I turned to the Macmillan benefits helpline for help. I spoke to Jo, a benefits advisor. Jo spoke to the DWP. A young man at the DWP promised Jo that he would send me a letter confirming that I am receiving income related benefit. I, in turn, promised to present that letter to the surgical supplies department at St Mary’s hospital to prove to them my entitlement to the wig that I have already had.

That last bit was about two weeks ago.

For those of you who have just joined this blog – don’t ask. You’ll never understand the benefits system in a million years. I don’t understand it. The advisors at the Macmillan benefits helpline don’t understand it. Even the people at the DWP don’t understand their own rules and cannot give one a straight answer about anything.

I call the Macmillan benefits helpline again. This time I speak to Min. She listens to my long tale. “What does it say in the original letter that they sent you?” asks Min. I riffle through a very long letter. On page 4 it says “... We call this contribution-based and income related Employment and Support allowance.”

“I think that means you are on contributions-based benefit,” says Min. “Howd’you figure that out?” I ask, perplexed. “It says ‘contribution based and income related...’ Does that mean I’m getting both?” “No,” says Min, “it probably means you are getting contributions-based allowance.” “You might think that’s what it means Min,” I reply, “it is not clear to me, neither is it clear to the chap at the DWP to whom your colleague Jo spoke a couple of weeks ago. That chap promised to send a letter confirming that I am in receipt of income-based benefits. I have been waiting for that letter because I need to take it to St Mary’s to prove to them that I am entitled to a free wig.

“If you’ve paid your stamps then you would be receiving the contributions based benefit,” Min opines. “Does that mean I can get a free wig?” I ask. “No.” says Min, “you have to be on income-based benefit for that.” “So, because I have paid my stamps I am not entitled to a wig?” I ask. “Yes,” says Min. “Whereas if I had not paid my stamps I would be entitled to one?” “That’s right,” confirms Min.

I can tell that both Min and I are doing our best not to sob out loud at this point.

“Well,” says Min, “I will send you some HC1 forms to fill in so that you can claim a wig on the basis of low income in case you are in fact receiving contributions based benefits. “But I don’t want to fill in any more forms Min,” I say in a hopeless tone. “Are you receiving any help with your housing costs?” “No,” I reply, “I haven’t filled in the forms for mortgage relief because I have a great fear that the Abbey will penalise me for claiming benefits by offering me less favourable mortgage terms in the future. The repayments are very low at the moment so I thought I would borrow some money from my sister and just tough it out.” “But you have to be receiving help with your housing costs in order to establish that you are on a low income.” “But I have already established that I am on a low income. The DWP asked me to send them six months worth of bank statements and financial records. They know I’ve got no money,” I wail. “Yes, but getting help with your housing costs is the trigger,” says Min. “Min,” I plead, “do we have to go through all this hoop-la again? They already admitted to your colleague Jo that I am receiving income based benefit. Now we just need to get them to do what they promised and put it in writing.”

“I will call them,” offers Min. “Thank you Min,” I sigh, untying the rope from the shower rail.

***

The telephone rings: “Hello Miss Lily, this is Min.” I’m holding my breath. “The DWP are going to send you a letter confirming that you are receiving income related benefit.” I exhale. “And they are already paying your mortgage,” says Min. “No they’re not Min,” say I, “I haven’t filled out the forms.” “Well they are paying £18.29 per week towards your mortgage interest.” “But Min,” I protest, “my mortgage interest is more than £18.29 per week.”

“I will call them,” says Min.

***

Min calls: “Hello, Miss Lily. The DWP confirm that they are paying £18.29 towards your housing costs. I can’t tell you exactly what it’s for. Best you fill out those forms. You need to claim all your benefits when you’ve got cancer." Min is right. I have a deep fear of filling in forms. My loathing for bureaucracy and my shame at having to claim at all conspire to keep me half out of the system. I’m not claiming what I am entitled to. “I will Min,” I say, contrite.

“They also confirm that you are receiving £25.50 a week because you are in the Work Related Activity Group.” “And what does that mean?” I ask. “It means that they expect you to get a job.” “But Min,” I reason, “I’m sick. I have told them so. My doctor has written to them and told them that I am undergoing chemotherapy for breast cancer.” “Did your doctor state that the chemotherapy was intravenous?” asks Min. “She didn’t specify that it is intravenous. But, as far as I’m aware, all chemotherapy for breast cancer is intravenous.” “Nonetheless, you’ll have to get a letter stating that your chemotherapy is intravenous then write in and make an appeal.”

I don’t even know what to say anymore.