Sunday, 8 January 2012

Is it really that long since my last update?

OK, firstly apologies to all those interested in Vicki's progress, it's been over 6 months since my last post, but it many ways that's good news as it means that nothing untoward has happened and that things are progressing nicely doesn't it?

Yes that's exactly what it means. Vicki's hospital visits are down to every other month, and no more blood letting, hurrah! This was starting to get a real bind so it's great to have that behind us.

Christmas has come and gone (sighs) and we're in the Queen's Diamond Jubilee and Olympic year. Vicki is in her 2nd year at Catering college and her progress is excellent. She just needs to square the circle by finding some gainful employment so if anyone out there needs a young enthusiastic chef please let me know! Once she's working I know that she'll probably want to start learning to drive so with this real independance will ensure. Wow, who'd thought that a few years back?

Finally life is starting to geel normal, what ever that is! :-)

Saturday, 23 July 2011

Time flies by, life goes on

OK, so it's been some time since my last post. Much has happened. The most significant issue was a set of blood tests that yielded some strange results. Initially I didn't know what to make of the results. The hospital were sufficiently worried to call Vicki back for further checks and more tests. Naturally I went into panic mode "Oh my God, here we go again" was the general theme of the moment. To make matters worse, just as I got this news, Vicki had left for a weeks holiday, so she wouldn't be able to attend hospital for another 10 days. 10 days of agony and worrying. However as it happened, these tests turned out to be a false alarm. Vicki's consultant said that the test results turned out to have no clinical value as subsequent tests had been in line with their original expectations. Phew. Still, for a short time it brought back all the feelings and emotions that I went through when Vicki was taken ill. Glad that episode is over.

This scare aside, Vicki's finished her first year at Catering College, holidayed in Turkey and Clacton, acquired a pet snake and is now relaxing enjoying the summer holiday doing what teenagers do best... nothing much! I have set her a task of cleaning up and tidying her room, which seems to be taking an inordinate amount of time. Ah well, you are only young once!

Sunday, 13 March 2011

The NHS dilemma

For the past few years the previous government and the new coalition have talked about the patient being at the centre of the their current NHS ethos and 'choice' being pivotal in moving the service forward. I have three separate first hand experiences with Vicki that illustrate the great challenges that remain ahead.

Story one involves Vicki having some vaccinations. Regular readers of my blog will recall that whilst Vicki is still under the overarching care of her consultant at Leicester Royal, her actual care is taking place at Northampton. The consultant at Leicester wrote to the Northampton consultant asking him to arrange a series of vaccinations for Vicki as her immune system starts to return to normal. The Northampton consultant then writes to our GP to ask them to arrange this. This should be straightforward except that we had changed GPs earlier, so our old GP had written to us in this matter. No problem I thought, I'll simply give a copy of the original letter to our new GP and they would make the necessary arrangements. The nurse at our local surgery asked us for clarification, but I could only say that I had the same information that she had! She said that she needed to know exactly what was needed and that letter from the Leicester consultant wasn't explicit enough. OK, fair enough, but I'm not a medical person so the only course of action that I could see was for the nurse to contact Leicester (the author of the original letter) and seek clarification there. This she did, and here's the first shock; she was told that Vicki was no longer their patient, so they couldn't help. Whilst this is only partially true, isn't it irrelevant as the letter originated from Leicester in the first place? Not to be foxed by this, the nurse then contacted the Northampton consultant who sent her a copy of the same letter that she already had. Now this is where it gets bizarre. Armed with no more information that I'd already presented the nurse with originally, she was now happy to proceed. What a waste of everybody's time that was. Can anyone else see how ridiculous this was?

Story two leads on from this incident. While we we eventually getting Vicki's first batch of vaccinations, I enquired about the HPV vaccination. Vicki had been due to receive this in Year 11, but had been in hospital at the time so missed out. We were advised that we'd need to contact the Young People's Nursing Service to arrange this and they gave me the number to arrange this. So I called them, explained the scenario, and they confirmed that Vicki was eligible and that we should come to their drop in service which is exactly for this kind of thing. I arranged a date for this and was told that the service would be alerted to our visit. When we arrived, some two weeks later, we discovered that they weren't expecting us. No matter, we'd just need to fill some forms in. Then a nurse came down to talk to us, she started telling us that Vicki WASN'T eligible. She asked me who I'd spoken to, which of course I couldn't remember at this point. I asked the nurse how was Vicki supposed to get the HPV and receive the protection that it offered if she wasn't eligible. She just shrugged her shoulders. Very helpful. I pointed out to the nurse that she'd missed the school run of this vaccination due to serious illness and that if she wasn't eligible now and couldn't get the HPV elsewhere, who should I sue should Vicki contract cervical cancer in later life because she'd missed the vaccination. The nurse disappeared for a few minutes muttering to herself and then called Vicki in to receive the vaccination. Whilst I was happy that she was now receiving the vaccine, why the hell did they make a fuss and tell us that she wasn't eligible? Again, am I the only one that thinks that this is mad?

The third and final story is from the local hospital. They left a message on my answerphone the day before Vicki had an appointment and asked me to contact them, By the time I got in from work it was nearly 8 in the evening, so I rang the hospital straight away. They explained that they were very busy and could they postpone Vicki's appointment. To say that I wasn't happy with this was a bit of an understatement; I'd already booked the time off work and had no more leave to take, so I explained this, but they still wanted to cancel the appointment. I said that it wasn't practical to cancel the appointment at this short notice so reluctantly they agreed that Vicki could still come in for her appointment as scheduled, but warned me that we may have to wait a long time due to their workload. I was fine with this. I've spend what feels like half my life waiting around various NHS establishments for numerous reasons so a little extra time wasn't going to make much difference! Now here's the thing. We arrived on time, and were seen and out of the hospital in 2 hours, which is less than normal! So why did they make all this fuss? Damned if I know. For the third time of asking, anyone else think this is mad?

All this happened to one patient in the span of about a month. Either Vicki is very unlucky or there are patient-centric issues that the NHS still needs to address. I'll let you make up your own minds, but none of this made me feel that the patient comes first!

Sunday, 13 February 2011

Time flies, normality slowly returns

We're now 12 months post treatment, and Vicki continues to attend hospital at monthly intervals for reviews and on-going treatment. She's also embarked upon a series of inoculations to help get her immune system back to full strength so it seems at the moment that we're always at one NHS site or another. Fortunately it's never for anything like the ordeal that she used to endure.

At her last visit to her consultant, he said whilst she will continue to require venesections once a month to reduce the excess iron in her blood, she is, to all intents and purposes, a normal healthy teenager. This is of course marvellous to hear, but as ever, I'm mindful of the fact that we're not out of the woods yet. Another 4 years of checks before we get the all clear, and of course the spectre of the disease returning looms distantly on the horizon. It's quite hard not to panic every time she coughs, or is overly tired, but as time goes by, this slowly subsides.

She's continues to attend college on a catering course and her progress here is good. She's even been talking about working abroad at some stage in the future. Future, did you hear that, she said future. Good to know she has one, 18 months ago, that didn't seem possible.

Wednesday, 1 December 2010

OMG is it really December?

I've just noticed that it's been a while since I've blogged anything. In the time since my last entry, Vicki has started college, and a part time job. Who would've thought it 12 months ago? As the Christmas season approaches I find it hard not to recall the last Christmas which was, to be frank, hell. The experience of 12 months ago rather took the shine off of the festivities and sadly I can't see this time of year with the childlike excitement that I once did. Even though Vicki is so much better now, Christmas, and everything associated with it just takes me straight back to an altogether darker time in my life. Don't get me wrong, I am looking forward to the big day, but perhaps not in the same terms as most of you reading this blog. Last year made me realise how false the whole Christmas thing is, and that's damage that I think will take an awful long time to repair. Last year it was hard with everyone full of seasonal joy while all I wanted to do was cry. Anyone that deviates from the happiness is seen as an Ebenezer, which just served to make me even more miserable last year. This year I've declared my desk at work at Christmas Free Zone, but I'm sure my colleagues will try to permeate my frosty Scrooge-like persona!

Saturday, 28 August 2010

The results are in!

Missing nearly all of Year 11 is not exactly ideal preparation for your GCSEs so it would have been reasonable to expect a meagre return from the 2010 exam season. Far from it, Vicki passed everyone! Well done, I am so, so proud of you. Needing 4 GCSE's E grades to get onto the catering course that Vicki had picked was the target. I am thrilled to tell you that she far exceeded that. With a B in Maths, and a C in General Studies among the highlights, Vicki got double the 112 points needed to gain a place at College.

This is a major milestone, not least because it means she won't have to redo Year 11, and also because it means that she won't have to compromise and do a 'lesser' course. Given the last 12 months, this is a major achievement, and heralds the dawn of a new era for my little princess who will be starting college in just over a weeks time. Yet another event that I thought I may never see. What a summer, who cares about the weather!

Sunday, 22 August 2010

I never thought this day would come

I haven't posted for a while, largely because life has been trotting along as normal, well as normal as it will ever be now. Vicki continues her monthly appointments and all is progressing nicely.

Today is Vicki's 16th birthday. There were some dark times over the last year when I didn't think that she would make it. But make it she has, and fingers crossed the future has many good things contained within it. Next week see the GCSE results published, and this will determine her path at college in September. Having missed almost the whole of Year 11, any results next week will be a great personal achievement. This should start a whole chain of events that will take her on some exciting adventures.

Today will be savoured; 16 is a special birthday, but for us, its so much more than that.

Happy birthday Vicki, I hope you have many, many more ahead of you.