Friday, February 10, 2012

The Flip Side of the NHS Coin

I think I will draw a veil over the day after the operation, when my daughter was hobbling around with her catheter & bag, like a little old lady with a bad dose of piles. It was quite pathetic to see. She couldn't sit down either. However she coped well & just got on with it. I think we both thought the cystogram would be a breeze. (This was to check the reflux had been cured.) Unfortunately that wasn't to be. She was in a lot of discomfort, it didn't go smoothly & the radiographer seemed quite inexperienced, being told by the motherly, very competent nurse-in-charge how to move the bed up & down & kept making helpful suggestions about what to do next.

Thankfully, the surgeon himself arrived at the door after they called & said the op had worked. The cystogram showed no reflux. She was in the 70% of patients it works for. Hooray.

We bought a sticker book on the way out as a mini reward for being so brave & I offered my daughter a hot chocolate in the cafe but she said, still very shaky,

"Mummy I just want to go home." Who could blame her.

On arrival home she donned her beloved new dance dress, spotty tights (with no bulky 'wee' bag stuffed into them) & glittery shoes with heels & spent the day lounging glamorously on the sofa, putting her stickers in her book.

But actually, the thing I was going to write about was the less good side of the NHS: the NHS's 'low priority' policy. Or perhaps would be better called NHS Austerity Measures.

My daughter, as you may or may not remember, has a facial scar from a light fitting falling on her in Albania when my husband was changing the bulb. It slashed her cheek necessitating 3 stitches which were very quickly & ruggedly done by an American doctor there.

I went to see the GP back here & asked for a referral to a plastic surgeon. I wanted to see if the scar could be improved upon, as it is on her face & quite noticeable, particularly when she is either hot or cold it goes quite red & angry looking.

We went through all the hoops before getting a letter back saying that Oxfordshire PCT (primary care trust) has a low priority status for such things which meant, they said, they wouldn't even give her an appointment to get a plastic surgeon's opinion.

The GP was not happy about this, but said although we could appeal, it was unlikely to be successful & printed off for me the policy for 'aesthetic surgery'. This details all that they will not do.

Much of it is fair enough e.g breast 'lifts', augmentation, breast reduction (including male breast reduction..), tattoo removal, hair grafts for male baldness, laser hair removal, surgery for 'bat ears, face lift, liposuction etc.

All seems reasonable enough. But neither will they remove any warts, benign skin growths, skin tags, sebaceous cysts, pigmented or benign moles, OR keloid scars or any cosmetic 'revisions' of scars, even on the face it specifically says. I think facial scars should be an exception.

My husband gets keloid scars & 12 years ago the GP suggested to him that his keloid scar, post shoulder surgery could go on a non urgent waiting list & be dealt with. So he no longer has an ugly 5 inch caterpillar snaking across his shoulder, caused by the scar bursting open. The plastic surgeon did a beautiful job of it!

Both he & I commented on how we would be a whole lot more warty & moley given this current policy as we both had lots of finger warts, verrucas & moles removed as children, as I think many children do.

My brother is a GP & he told me he has had a verruca for 5 years. He treated it every day for about 18 months with liquid nitrogen which didn't work but even he can't get it cut out.

I had a 5 year old verruca cut out by a Singhalese dermatologist in Sri Lanka. It created quite a hole, the root was so deep. This dermatologist clearly loved her job, she used to sing as she worked & whilst removing 2 of my husband's suspicious moles on his back said "I might as well do a few more whilst I'm at it."
And she proceeded to dig away at his mole-strewn back with the passion of a person who has discovered her life's work.

So unless we pay £200 for a private consultation &, what the GP called 'substantially more', for the actual scar revision, my daughter will have to live with the scar & cover it up with make up as best she can. It is not disfiguring & people say they hardly notice it. But when near her it is very obviously there, plumb across the apple of her cheek.

At times like this I confess I pine for the health insurance we had whilst abroad, which still couldn't buy any decent treatment in Tirana, but it meant we could probably have got this seen to on our insurance if we had flown back especially. It hadn't occurred to us to do this as we assumed it could be done on the NHS once back. And we couldn't have claimed for the flights as it was non urgent.

Overall though, I think the NHS is fantastic & am so grateful for it, & for the dedicated, friendly & unstuffy medical professionals we have dealt with.

Tuesday, February 7, 2012

A Day with the NHS

Today was the day of our 7 y-o daughter's 4th surgical procedure in her short life. She was having a minor operation to cure her reflux, which she should have grown out of by now. She has had repeated urine infections since she was given the wrong antibiotic in Sri Lanka so the infection lingered & scarred one of her kidneys.

I am always at a loss as to how to play these occasions. I always feel I am deceiving her or betraying her trust.When I used to take her for her many vaccinations, & for all her investigations, I used to wonder just exactly when to tell her what we were doing. I am sure she doesn't remember the dreadful experiences she had in hospital in Sri Lanka but they have left a legacy of anxiety about hospitals & a need to know EXACTLY what they are going to do.

On this occasion she wanted to know how exactly they were going to get a camera inside her bladder (I think she had visions of SLRs not Borrower sized micro-cameras) & how they would make sure she didn't wake up mid operation. She mostly seemed more interested in their professional expertise rather than what they were going to 'do to her'. Fairly reasonable I guess.

She was unusually chilled & apart from a slight weepy wobble briefly this a.m, she was fine. The nurses even commented on how relaxed she was. I was amazed, & relieved. Though after several hours wait she did have a small weep & admit to being scared.

But, compared to our overseas experiences, it was great! I never cease to marvel at the amount of information given, the play nurses (play nurses?!), the caring (paediatric trained) nursing staff & non-condescending consultants. Having "Where's Moshi" read to you whilst your numbed hand has a canula inserted in all of about 10 seconds flat, with no 'brute force' or coercion in sight, was, let's say, rather a pleasant experience.

An Aussie ex-pat friend very kindly, had offered to have coffee with me in the cafe whilst Annabelle was in surgery, & was as good as her word, providing me with scintillating conversation to distract me. I have only known her a few months too. It was a really kind gesture. She also brought some chocolates for 7 y-o, the loan of her ipad for the day, & a Little Girl-Gorgeous ice-dance dress her daughter had grown out of. It had a pink velour bodice, a strappy back with a diaphanous, very short, twirly skirt. It was the perfect distraction needed when my daughter woke up.

Unfortunately they gave her a urethral catheter rather than a tummy one as the surgeon had said he would, because the consent form I had signed, had evidently specified urethral not tummy one. Who knew? So even tho I had verbally agreed, it wasn't in the dang paperwork, so urethra it was.

So the aftermath wasn't so great. In fact it gave me a flash back to her in the recovery room after her angiogram in Sri Lanka & her heart surgery at Great Ormond Street. Both times she woke up furious, (understandably after her angiogram in Sri Lanka because she was, literally, elastoplasted by both legs to a board & couldn't move.) After her heart surgery, she had been pulling at all the tubes & wires coming out of her. On this occasion today she was very weepy, sore & uncomfortable & not at all impressed by the catheter, pulling at it & the bag & trying to see what was going on.

But she was also angry. I am glad in a way. It is this feistiness & strength of will that has seen her through her chequered medical career I feel. This time the angry 7 year old version was, in a hissed whisper;
"Mummy, I thought you said these people were experts? Why am I so sore then, they didn't do a very good job."

I explained that they did do a very good job, but unfortunately operations made you sore. Oh dear, there I was deceiving her again. I hadn't mentioned this beforehand.

So she was offered pain relief, insisting it was not making any difference & said yes every time more was offered, so has happily quaffed paracetamol, codeine, nurofen & something for her bladder spasms.

I must say a girl can never seem to escape very far from wardrobe dilemmas, even at the tender age of 7 & in a hospital. We made the wrong choice this morning for 'post-operative day wear'. Trying to negotiate Charlie & Lola pants past said catheter & then stuff the catheter bag into her (tight) leggings without looking like a severe case of early onset varicose veins, was a little taxing.

We return tomorrow, hopefully in more accommodating clothing, for her micturating cystogram to check it's worked. It works in 70% of cases. This evening my daughter looked wistfully at the floaty pink velour number at the end of her bed & said;

"Mummy tomorrow for my scan, can I wear my new dance dress?"

Hmm. Concealing catheter tube & bag in such a skimpy number (when the bag has to be lower than bladder so is strapped to her leg) would be optimistic & would necessitate a similar varicose vein impression of nobbly bits under tights. Not to mention the snow outside making it somewhat impractical.

I suggested we stick to something a little more concealing. She seemed happy with that.

And I am happy to be back in a country which has health care which I really can't complain about.