Saturday, January 31, 2009

Lost; fifth season

Am I the only person still watching this? Everyone else I know seems to have given up on the dodgy sci-fi / cod-philosophical series a long time ago. For some reason, I still find it compelling, even though the plot gets dafter every series.

Saturday, January 24, 2009

Still on the line...

Yawn, it's late. My misses is out on the lash with all the girlies, I'm stuck in and I really haven't got time to listen to youtube- I need to get to sleep ASAP as there is a baby (Oscar) that will be waking up at 11.30PM and 3AM for milk. Maybe they could invent an automatic bottle feeder for babies cots that works like the ones in rabbit hutches...

I think I just broke my new years resoultion not to moan ;-). At some point I really must sit down and figure out the guitar parts to this sublime song (The Wichita Lineman - Glenn Campbell). Who'd have thought that a song about an outdoor electrician could ever be so beautiful...

Friday, January 23, 2009

Just a Band

Well, I heard this last night and it struck me as quite poignant. Music obsessives (like me) tend to obsess about artists and pontificate about their best albums and whether they've lost it; forgetting that they're "just a band..."

Saturday, January 17, 2009


Sounds mostly coming from Abby's bedroom this weekend:

"Cough! Cough! Hack! Hack! Cough! Cough! HUUUURL....."

"Cough! Cough! Hack! Hack! Cough! Cough! HUUURRRL"

My daughter Abby has got a cold with a really violent dry cough that is making her cough so much that she is then sick (on herself). She generally does this while she is asleep and this means she wakes up with sick in her hair...this morning her hair was all matted at the back with puke! Poor lamb, on the one hand I'm feeling really sorry for her, on the other I'm desperate not to catch the cold myself as it sounds like a nasty one. (These photos aren't of her being sick by the way, they're just pictures of some random princess game she was playing. I can't remember the rules.)

This weekend we bought a new-ish car. It's a 5 door estate, with lots of room to fit growing kids in. I must be growing old, help ;-)

Monday, January 12, 2009

Here goes nothing...

I have decided to enroll (along with R) on the great Manchester Run this year. It's just (;-)) 10K so if I struggle with the training then I can always walk around the course. The last time I attempted this in 2003 it was a bit of a disaster as I had to pull out at the last minute with a stomach blockage, so I'm hoping this time it will be second time lucky. Our charity of choice is the CF Trust.

Friday, January 9, 2009

Spelling out the Frustration

"Dear Sirs

It is with much regret that I find it necessary to correspond with you regarding my treatment at SH Hospital during 2008. I have delayed composing this letter in order that I may gather my thoughts regarding my treatment and to allow sometime for my feelings to subside. Despite time having passed since my discharge I continue to feel angry and frustrated by the treatment I received.

I would, however, initially wish to convey my thanks to Mr P, Ms C B and Ms S H and other midwives whose names I am, unfortunately, unable to recall. Mr P and Ms C B, in particular, assisted in making a difficult situation more bearable, I feel both worked with utmost professionalism, honesty, with a sensible approach and attempted to assist in anyway they could.

Unfortunately, I am unable to express such gratitude for a number of members of staff who became involved in my care.

By way of background, I wish to advise you that during 2008 I was pregnant with my second child. My first child had been born by emergency Caesarean Section in July 2005. My recovery from this had been difficult and it was not a situation I wished to find myself in again, indeed, I had hoped to have a normal pregnancy with a natural delivery preferably at home. That said, however, my baby had been conceived by way of assisted conception and in the circumstances, my priority was always to ensure the safe arrival of my baby. I am happy to say that despite difficulties during my pregnancy my son was born safely in July 2008, albeit by emergency Caesarean Section.

An initial difficulty with my care was the fact that my notes (central file) relating to the birth of my daughter in July 2005 could not be located. Despite numerous requests and assurances that they were being located, from my first consultation to my discharge, my central file was never found.

I did discuss this problem and a number of other concerns regarding my treatment during my pregnancy with Ms D G in approximately March 2008. I found my meeting with Ms G to be constructive and as a result of this meeting my care was transferred to Mr P and I feel that had this action not been taken I would have found my treatment wholly unacceptable.

I underwent fertility treatment at Leeds General Infirmary in 2007 and in November 2007 my pregnancy was confirmed and my care was transferred to Stepping Hill Hospital. Unfortunately, however, in January 2008 at about 13 weeks I was diagnosed with a Pulmonary Embolism. As advised, I have discussed these issues in detail with Ms D G. I do however wish to mention that my symptoms relating to my PE first occurred on Monday 21st January 2008. I attended with my GP who advised that she was unable to find any problems I was sent away and told to return in the event that my symptoms continued. Fortunately, for a couple of days I found myself to be symptom free, only to find that by 25th January 2008, I was significantly breathless and upon further attendance with my GP I was advised to attend, without delay, at GPAU. Obviously, I had concerns regarding my initial consultation with my GP and was therefore disappointed to find that I was equally frustrated by the treatment at GPAU. During the time it took to confirm the diagnosis (5 days) there was no communication with the maternity unit. I was advised to undergo a number of scans ultimately including a CTPA, however, there was no advice provided by anyone as to the potential effects of these scans on my unborn baby.

Additionally, whilst I am grateful to most members of staff on the unit, I wish to mention my disappointment regarding the care of a consultant whose name, again, escapes me. I did, however, encounter him on the evening of Friday 25th January 2008. I felt his manner was rather dismissive. Indeed, he advised that he was almost certain that I was not suffering from a Pulmonary Embolism as I had not presented with the ‘classic’ symptoms. Obviously, he was found to be incorrect. Whilst I accept his main concern was for my welfare, as opposed to my unborn baby, I felt he was very dismissive of my concerns for my unborn baby.

GPAU confirmed the diagnosis of a Pulmonary Embolism and prescribed Heparin to be taken for the rest of my pregnancy. This, I believe, is where the complications, difficulties and frustrations began; not least because there was no follow up by GPAU. I was advised that I could return home and essentially continue life as normal. I was not provided with any guidance regarding what I could or could not do. I was given no advice regarding the possible causes of the PE or indeed its potential affects.

Following my diagnosis, I attended at the Ante Natal Clinic at the hospital the following day (30th January 2008). I was admitted by the Registrar and upon arrival on the ward I encountered a midwife who questioned why I was on the ward, suggesting that it was unnecessary for me to be there. I myself, had no desire to be on the ward and indeed had suggested to the registrar that I did not wish to be admitted. The registrar had advised me that she felt it would be preferable and I therefore agreed. Obviously, however, I did not wish to be greeted by a midwife suggesting that I should not be there. The midwife advised me that she would speak to a doctor regarding my discharge. I was then advised by a registrar that I could go home. Having made arrangements with my family to be collected I was subsequently advised that I could not go home as a senior Doctor had decided otherwise!

As previously discussed with Ms D G following the diagnosis of a pulmonary embolism each consultation with midwives and registrars (I did not see a consultant before Mr P in approximately March 2008) led to me being confused regarding my care. Everyone appeared to have their own opinions and thoughts regarding the best way to deal with my pregnancy given the medication I was required to take. Unfortunately, it appeared that people did not share the same opinions. In the circumstances, each consultation seemed to contradict the last and I was left confused as to how my pregnancy would progress and indeed what my options were regarding the delivery of my baby.

Following my meeting with Ms D G, it was decided that my care would be transferred to Mr P and I would see him at each Ante Natal Clinic. I was also to be assigned a midwife who I would see at each appointment. I was advised that this would ensure continuity of care and remove any contradictions and confusion. I was happy that my care was to proceed in this way and, as stated am very grateful that Mr P was involved in my care. That said, however, the midwife to whom I was assigned at the hospital (my community midwife as stated was Ms C B) saw me at one appointment and thereafter, at each and every appointment I saw a different midwife.

Following my consultations with Mr P, it was decided, that an elective Caesarean was not necessary and there appeared to be no reason why my pregnancy could not continue normally allowing me to go into labour spontaneously. Obviously, these decisions were made without the benefit of my central file and therefore, without information relating to the delivery of my daughter. It was agreed that once my file was found, should it reveal anything of relevance the position would be reviewed. Needless to say, my file was never found and it was therefore never deemed necessary to review the plan of care.

It was also decided that following the birth of my child I would continue taking Heparin for a period to be decided following the birth, probably 3 months. I was entirely happy with this plan and felt comfortable with the care I was being provided with.

Unfortunately, things changed when I reached 38 weeks. At my Antenatal appointment at this time, Mr P was, unfortunately, on annual leave. I had an appointment with a registrar who contradicted everything that had been agreed. He suggested that I would be ‘crazy’ to contemplate going into labour naturally and appeared to be suggesting that the only ‘sensible’ option would be to have an elective caesarean. This was obviously the last thing I wanted.

I believe I was in the maternity unit for approximately 5 hours. I feel that during this time I was ‘bullied’ into making a decision regarding my care. I feel I was forced to agree to treatment that I did not want and had previously been told was unnecessary by Mr P. In essence, I was advised that a decision had to be made that day as at 38 weeks labour could begin at anytime. I was advised that I could leave the unit that day and wait to go into spontaneous labour. I was advised, however, that should I chose to do this, I ran the risk of suffering a massive bleed during labour that could result in the need for a hysterectomy or indeed could result in death. With this information, I felt I had no option but to agree to the registrar’s suggestion that I underwent a caesarean or had my labour induced. Given my aversion to a caesarean (and indeed, my feeling that it was unnecessary) I agreed that I would be induced.

I believe that had a midwife been in attendance who was familiar with the situation and the plan of care agreed with Mr P this situation would never have arisen. As it was I was made to feel stupid. I became very distressed by the whole situation and indeed, found I was doubting myself and doubting my recollections of previous discussions with Mr P. Clearly, I was mistaken in believing that it was appropriate to attend at the appointment on my own. As it was, I felt very vulnerable and there was no opportunity for me to discuss my options with a neutral party. Whilst my use of the word ‘bullied’ may seem excessive, this is the only way I can describe my feelings at this appointment. I had hoped for a birth as natural as possible and was made to feel that I was foolish to harbour such hopes. I felt vulnerable, emotional and distressed and was forced to make a decision perhaps more than anything else this is what aggrieves me and I am disappointed that I was ever put in this position.

I was subsequently induced on 25th July 2008 and ultimately had to undergo an emergency caesarean on 26th July 2008. Whilst I appreciate that no one could know whether the outcome would have been the same had I gone into labour naturally, I am obviously left with the nagging doubt that things may have been different and I will never know. That said, given the complicated nature of my pregnancy and the risks of labour I am obviously very grateful that both myself and my son are healthy and safe.

Obviously, following the birth of my son I was required to stay in hospital. I have only good things to say about the midwives who work on M2. They were very professional, helpful, and amenable and ultimately made my stay more bearable. That said, however, during my stay, I was advised that I would have to take Warfarin. Obviously, I had previously agreed with Mr P that this would not happen, however, it seems that this agreement was again ignored. Whilst I had no objections to taking Warfarin, per se, I did not have any problems taking the Heparin and saw no reason why this could not continue. Indeed, during discussions with staff about this, no one was able to advise why it was necessary to discontinue the Heparin in favour of Warfarin.

I did, however, become rather frustrated when I discovered that I was unable to be discharged from M2 until my INR levels had stabilised. I had not wanted to take Warfarin and it had been agreed that I could continue to take Heparin, however, it appeared that I had to remain in hospital for no other than to ensure that my INR had reached an appropriate level. Again, no one was able to explain the need for this. Needless to say, hospital was the last place I wanted to be, given that I had a new born baby and a 3 year old daughter at home, I was eager to return to my own home to continue my recovery. Fortunately during this time Mr P returned from annual leave and saw fit to discharge me.

I was then referred to the care of the anticoagulation clinic. By way of a final chapter to my frustrating and, in my eyes, unsatisfactory care from S H, I would wish to mention the lack of haematology consultants. At each visit to the anticoagulation clinic I would request information and confirmation of when the need for my medication would cease. I was always advised that a response was awaited from a haematology consultant. It would seem that such a response was never received and it was, indeed, the instruction from Mr P that led to my discharge from the anticoagulation clinic.

I can say that I have spoken Mr P about my treatment. He was apologetic for my treatment in his absence for which I am grateful. That said, however, I believe all staff are entitled to annual leave and it is disappointing to find that care does not continue during the absence of a member of staff. Equally, had continuity of care from the midwives been provided, I believe a difficult situation could have been avoided. Had another person been aware of the situation I would not have been left to doubt myself or left in a vulnerable situation.

I am hopeful that this letter will draw attention to the situation I found myself in and, hopefully, matters will be reviewed to ensure that such a situation never arises again. I would also be obliged if an explanation could be provided regarding the whereabouts of my central file. I trust this has now been located and I would be interested to hear why, this was never available during my pregnancy.

Whilst I am disappointed and to some extent angry with the treatment I have received, I do wish to emphasise that I am immensely happy with the ultimate outcome. I have a happy and healthy son and am grateful that I was able to successful give birth to him, albeit in an unwanted manner. As stated, I am grateful for the efforts of Mr P, Ms C B, Ms S H and all the midwives on M2. I wish to convey my gratitude to them.

I would, however, appreciate a response to the concerns raised in my correspondence regarding my care and look forward to hearing from you in due course.

Yours faithfully"

R (with some proof reading from me) has written this letter to the NHS. The problem, I think is:

(1) Poor communication between the hospital departments.

(2) Poor handover between doctors.

(3) Arrogant registars (grrr!)

For me it underlines the superior care I have received from the CF Unit, but you know what? At the end of the day we have two healthy kids and I have a wife who is still with me, and for that I am eternally grateful.

Wednesday, January 7, 2009

It's been 7 hours and 15 days...

I've just had my immunisations for Shanghai. I've had Revaxis (Tetanus, Diptheria, Polio), a pneumococcal vaccine and Hepatrix (Hepatitus A and Typhoid) I now have two dead-arms and a reminder of what it was like to be at school, having your upper arm repeatedly punched by friend and foe alike. Owwww. Just listened to the three hour special and it reminded me that Prince was the songwriter behind this early 90s gem. Just a beautiful song.

Saturday, January 3, 2009

Around the Sign of the Rain Parade

I don't know if this is the case for all teenage boys/girls, but as a teenager I completely obsessed about one band, and that was Prince and the Revolution; they helped me through some tough teenage times, going spotty ;-), suffering unrequited love, dumping / being dumped, having to go into (a children's!) hospital ward as a vain teenager for IVs, and Prince's music was there to help me through. At the time I could probably name all of the songs on his first 10 albums in the correct order; and list all the B Sides I had/didn't have. Growing up as a teenager In the 80s it was either him or The Smiths really, they were great but I was never that keen on Morrisey's voice. Many people think the 80s was a trashy time for music, but anyone who was actually there will tell you there was a hell of a lot going on musically, and Prince was definitely at the top of the pile. To be honest in these celeb obsessed Heat/Nuts/X Factor days it's hard to remember how important music was back then, you had about 5 independent weekly music papers (MelodyMaker, NME, Sounds, RecordMirror), but hearing this 3-hour special on the best Prince tunes of all time took me right back to some of those exciting times where hearing a song for the first time could make you explode with insurmountable joy. Catch it now before it expires:

here's my unofficial esoteric Prince top ten:

1) Around The World In A Day
2) Take Me With You
3) Sign O The Times
4) I Could Never Take The Place Of Your Man (phew ;-))
5) If I Was Your Girlfriend
6) Forever In My Life
7) Mountains
8) Condition of the Heart
9) Paisley Park
10) Raspberry Beret

p.s. Man City have lost today and are now out of the FA cup; the team is divided over the manager(Hughes) and the crowd is also divided about whether the manager should be sacked. it's all very divisive, depressing and I'm trying to take my mind off it ;-)

p.p.s. After writing this post, I had a dream about a girl who played me a "Prince" song called "Remi Moore", she said she loved it. Unfortunately when I woke up I couldn't remember anything about the melody, except that it was synthy and dreamy...the song was about a suicidal man who was saved by a girl called Remi Moore, but I can't remember anything else about it.

Friday, January 2, 2009

Christmas, Kleanprep, and the Common Cold

OK, let's get the moan out of the way ;-) Christmas has been a bit of a let down. Not for the kids I should hasten to add as they loved all their presents and meeting their relations etc, more for the irresponsible adults (i.e. who like to get drunk at Christmas occasions and slip off to the pub to set the world to rights) Abby, R and Oscar have all had flu-like, stinking, chesty colds since boxing day, R currently has a really bad cough keeping her (and me!) up all night. As a CF-er this is disconcerting as this should be my job ;-) I have done my utmost to avoid said cold (pumping First Defence up my nose at every opportunity and washing my hands to the point where bits of them are now dropping off) but now it looks like it's finally got me. I will give myself a 5 day dose of Prednisolone and Ceftezadine to hopefully keep any resulting chest infection at bay. It's now New Years day and I'm taking Kleanprep for a burgeoning stomach blockage - I have no idea where it's come from as this is the most sedate Christmas I've had for some time. We even gave the New Years Eve bash a miss the other night because we were both ill, and both fell asleep before midnight; that's childcare for you, rock and roll ;-)

Overall though, it's been good; we have survived looking after our 2 children for 2 weeks without nursery breaks, we cooked a great Christmas meal with a £70 goose, roast vegetables and red cabbage done the Jamie Oliver way, just delicious. The goose was so big that it's wouldn't fit in the oven without being tied up and there was so much excess meat on it that we could make 2 Thai curries out of the leftovers. Oscar has now converted to the bottle at nights and has been waking up just once during the night. It also snowed in the second week of Christmas, which everyone loved, especially Abby.

As for New Years resolutions - just the usual really, be more organised, make more effort to meet up with family and friends, try to write some songs, and, mainly I think it's just to not take life for granted.